Neupane, Dinesh; van Teijlingen, E; Khanal, V
Many academics from Nepal do not involve in research activities. There are several factors hindering the involvement such as inadequate human resources and lack of financial resources. Despite limited human and financial resources, we believe it is still possible to attract many Nepali academics...... in health research. This paper purposes some ideas to increase involvement of Nepali academics in health research....
Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Salkeld, Glenn
of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see...... at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach....... to increased user involvement, though somewhat more aligned with the former. METHODS: Our online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific...
Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy
There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that arose for researchers over the course of conducting three HPSR studies in Kenya in which health managers and providers were key participants. All three studies involved qualitative work including observations and individual and group interviews. Many of the ethical dilemmas researchers faced only emerged over the course of the fieldwork, or on completion, and were related to interactions and relationships between individuals operating at different levels or positions in health/research systems. The dilemmas reveal significant ethical challenges for these forms of HPSR, and show that potential 'solutions' to dilemmas often lead to new issues and complications. Our experiences support the value of research ethics frameworks, and suggest that these can be enriched by incorporating careful consideration of context embedded social relations into research planning and conduct. Many of these essential relational elements of ethical practice, and of producing quality data, are given stronger emphasis in social science research ethics than in epidemiological, clinical or biomedical research ethics, and are particularly relevant where health systems are understood as social and political constructs. We conclude with practical and research implications. © 2016 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd.
Full Text Available Abstract Background The emergent international practice of involving consumers in health research is driven, in part, by the growing share of health research that can only be applied in and emerge from knowledge that is shaped by human values and societal contexts. This is the first investigation of its kind to identify the current prevalence, challenges, enabling factors and range of approaches to consumer involvement in health and medical research in Australia. Methods A nation-wide survey of research funding organisations and organisations that conduct research was performed during 2008-2009. Results Marked variation in consumer involvement experience and perceptions exists between research funders and researchers. Research funders were over eight times more likely than organisations conducting research to involve consumers in identifying research needs and prioritising research topics. Across both groups, practical and time constraints were reported as key challenges to involving consumers, while guidelines on consumer involvement and evidence of effect were the most important potential enablers. More than a third of research organisations indicated that when consumer involvement was a condition of research funding, it was an important facilitator of involvement. Conclusion It is no longer simply enough to keep society informed of important scientific breakthroughs. If Australian health research is to take into account important social contexts and consequences, it must involve consumers. A set of minimum consumer involvement standards and associated guidelines, that are agreed and routinely adopted, could ensure that consumers and the Australian community they represent, are given an opportunity to shed light on experiences and local circumstance, and express views and concerns relevant to health research.
Jao, Irene; Kombe, Francis; Mwalukore, Salim; Bull, Susan; Parker, Michael; Kamuya, Dorcas; Molyneux, Sassy
Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders’ attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere. In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework. PMID:26297748
Public involvement is required for applied health research funded in the UK. One of the largest funders, the National Institute of Health Research (NIHR), makes it clear that it values the knowledge of patients and the public. As a result, there are now many resources to make sure that the public voice is included in decision-making about research. However, there is concern that the public voice still has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It looks at how much power and impact patients and members of the public have about research by asking: How do the public contribute to deciding which research areas and which research projects should be funded? How do they influence how the research is carried out? The article argues that there is evidence that the public voice is present in research decision-making. However, there is less evidence of a change in the power dynamic between the scientific research community and the public. The public involved in research are not always equal partners. The scientific research community still has the loudest voice and patients and the public do not always feel sufficiently empowered to challenge it. Public involvement in applied health research is a pre-requisite for funding from many funding bodies. In particular the National Institute of Health Research (NIHR) in the UK, clearly states that it values lay knowledge and there is an expectation that members of the public will participate as research partners in research. As a result a large public involvement infrastructure has emerged to facilitate this. However, there is concern that despite the flurry of activity in promoting public involvement, lay knowledge is marginalised and has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It discusses the meaning of power and
Delin, Catherine R.
Medicine has a long research tradition, whereas allied health areas have only recently become involved in research. A questionnaire study was conducted to investigate the attitudes to research of a total of 314 students of medicine, dentistry, occupational therapy, physiotherapy, and nursing courses on the city campuses of two South Australian…
In this paper the author considers the lessons to be drawn from what is termed "inclusive" learning disability research for user involvement around health improvement. Inclusive learning disability research refers to research where people with learning difficulties (intellectual disability) are involved as active participants, as opposed to passive subjects. There is by now a considerable body of such research, developed over the past 25 years. From the review, the author draws attention to areas which can inform practice in involvement of users in a way that adds value.
Paul, C; Holt, J
WHAT IS KNOWN ON THE SUBJECT?: UK health policy is clear that researchers should involve the public throughout the research process. The public, including patients, carers and/or local citizens can bring a different and valuable perspective to the research process and improve the quality of research undertaken. Conducting health research is demanding with tight deadlines and scarce resources. This can make involving the public in research very challenging. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This is the first time the attitudes of researchers working in mental health and learning disability services towards PPI have been investigated. The principles of service user involvement in mental health and learning disability services may support PPI in research as a tool of collaboration and empowerment. This article extends our understanding of the cultural and attitudinal barriers to implementing PPI guidelines in mental health and learning disability services. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Researchers in mental health and learning disability services need to champion, share and publish effective involvement work. Structural barriers to PPI work should be addressed locally and successful strategies shared nationally and internationally. Where PPI guidelines are being developed, attention needs to be paid to cultural factors in the research community to win "hearts and minds" and support the effective integration of PPI across the whole research process. Introduction Patient and public involvement (PPI) is integral to UK health research guidance; however, implementation is inconsistent. There is little research into the attitudes of NHS health researchers towards PPI. Aim This study explored the attitude of researchers working in mental health and learning disability services in the UK towards PPI in health research. Method Using a qualitative methodology, semi-structured interviews were conducted with a purposive sample of eight researchers. A
Schilling, Imke; Gerhardus, Ansgar
Demographic change has increased the need for research on healthcare for older people. Recently there has been a growing awareness that research might benefit from actively involving patients and the public in study design and conduct. Besides empowering patients and democratizing research, involvement enhances the quality of research and the development of equitable healthcare solutions. Little is known about how to involve older people. This review aims to support scientists intending to involve older people in health research by systematically identifying and describing studies involving older people and analyzing associated facilitators and challenges. Old people were operationalized as people living with old-age-related conditions. We conducted a systematic search in PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane library for the period 2007 to July 2017 and also manually searched reference lists of the nine retrieved articles and other relevant sources. While involvement of older people in research is feasible, specific challenges related to this group need be taken into account. Strategies to enhance effective involvement comprise a thoughtful choice of location, use of visualization and accessible communication, building good relationships and flexible approaches. Further research is needed on the involvement of people in care homes or with vision, hearing or mobility limitations.
Campbell, Theresa Diane
To explore the issues of data management and data ownership with regard to health research conducted in aboriginal or indigenous populations in Canada. Research with aboriginal communities in Canada has often been conducted by researchers who had little or no understanding of the community in which the research was taking place. This led to 'helicopter' research, which benefitted the researcher but not the community. National aboriginal leadership developed the ownership, control, access, and possession (OCAP) principles, which outline how to manage research data regarding aboriginal people and to counteract disrespectful methodologies. However, these principles present their own set of challenges to those who would conduct research with aboriginal populations. Documents from the Assembly of First Nations, the Government of Canada, Aboriginal writers and researchers, and Nursing theorists and researchers. This is a methodology paper that reviews the issues of data ownership when conducting research with Aboriginal populations. The authors explore indigenous and Western views of knowledge development, outline and discuss the OCAP principles, and present the Canadian Institute of Health Research's guidelines for health research involving aboriginal people as a guide for those who want to carry out ethical and culturally competent research, do no harm and produce research that can benefit aboriginal peoples. There are special considerations associated with conducting research with Aboriginal populations. The Assembly of First Nations wants researchers to use the Ownership, Control, Access and Possession (OCAP) principles with First Nations data. These principles are restrictive and need to be discussed with stakeholders before research is undertaken. In Canada, it is imperative that researchers use the Canadian Institute of Health Research Guidelines for Health Research Involving Aboriginal People to ensure culturally sensitive and ethical conduct during the course of
Locock, Louise; Boylan, Anne-Marie; Snow, Rosamund; Staniszewska, Sophie
Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Using a participatory and dynamic approach to involve people with lived experience of homelessness and exclusion is an effective public engagement methodology for complex topics such as EHR research and data linkage. Information provided in the workshop was useful for interpreting findings, identifying strengths and gaps in health and social services, and developing research and practice recommendations.
Banner, Davina; Grant, Lyle G
The need for quality nursing research to promote evidence-based practice and optimize patient care is well recognized. This is particularly pertinent in cardiovascular nursing, where cardiovascular disease continues to be the leading cause of morbidity and mortality worldwide (World Health Organization, 2007). Across the spectrum of academic, clinical, and health care administration nursing roles, research remains fundamental to bridging theory, practice, and education (LoBiondo-Wood, Haber, Cameron, & Singh, 2009). Despite recognition of the importance of nursing research, the gap between research and practice continues to be an ongoing issue (Funk, Tornquist, & Champagne, 1995; Pettengill, Gillies, & Clark, 1994; Rizzuto, Bostrom, Suterm, & Chenitz, 1994; Rolfe, 1998). Nurses are appropriately situated to contribute to research that improves clinical outcomes and health service delivery. However, the majority of nurses in clinical practice do not have a significant research component structured into their nursing role. In this research column, the authors outline the importance of nurses being engaged in research and present some different levels of involvement that nurses may assume. A continuum of nursing research involvement includes asking researchable questions, being a savvy consumer of research evidence, finding your own level of research involvement, and aspiring to lead.
Garfield, S; Jheeta, S; Husson, F; Jacklin, A; Bischler, A; Norton, C; Franklin, B D
lead researcher to create a synergistic output. Some challenges arose, including difficulties in recruiting a diverse range of members of the public to carry out the role; however there were generally fewer challenges in data analysis than there had been with our previous experience of lay partners' involvement in data collection. Conclusions Lay members can add value to health services research by being involved in qualitative data analysis.
McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec
Plain English Summary In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical research involve more consumers (patients) and community members (the public) in their research. In 2012, workshop attendees were invited to do an online survey to find out the effect, if any, that attending a workshop had on their awareness of and attitudes to con...
McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec
In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical research involve more consumers (patients) and community members (the public) in their research. In 2012, workshop attendees were invited to do an online survey to find out the effect, if any, that attending a workshop had on their awareness of and attitudes to consumer and community involvement. They were also asked about changes in their behaviour when it came to the involvement of consumers and the community in their work. The study found that, for people who answered the survey, more than double the number found consumer and community involvement very relevant after attending a workshop, compared with the number who thought that before attending one. Also, amongst those who answered the survey, 94 % thought that the workshop increased their understanding about involvement. Background There is limited evidence of the benefits of providing training workshops for researchers on how to involve consumers (patients) and the community (public) in health and medical research. Australian training workshops were evaluated to contribute to the evidence base. The key objective was to evaluate the impact of the workshops in increasing awareness of consumer and community involvement; changing attitudes to future implementation of involvement activities and influencing behaviour in the methods of involvement used. A secondary objective was to use a formal evaluation survey to build on the anecdotal feedback received from researchers about changes in awareness, attitudes and behaviours. Methods The study used a cross-sectional, online survey of researchers, students, clinicians, administrators and members of non-government organisations who attended Consumer and Community Involvement Program training workshops between 2009 and 2012 to ascertain changes to awareness
Uneke, Chigozie Jesse; Ezeoha, Abel Ebeh; Ndukwe, Chinwendu Daniel; Oyibo, Patrick Gold; Onwe, Friday; Aulakh, Bhupinder Kaur
Nigeria is one of the low and middle income countries (LMICs) facing severe resource constraint, making it impossible for adequate resources to be allocated to the health sector. Priority setting becomes imperative because it guides investments in health care, health research and respects resource constraints. The objective of this study was to enhance the knowledge and understanding of policymakers on research priority setting and to conduct a research priority setting exercise. A one-day evidence-to-policy research priority setting meeting was held. The meeting participants included senior and middle level policymakers and key decision makers/stakeholders in the health sector in Ebonyi State southeastern Nigeria. The priorities setting meeting involved a training session on priority setting process and conduction of priority setting exercise using the essential national health research (ENHR) approach. The focus was on the health systems building blocks (health workforce; health finance; leadership/governance; medical products/technology; service delivery; and health information/evidence). Of the total of 92 policymakers invited 90(97.8%) attended the meeting. It was the consensus of the policymakers that research should focus on the challenges of optimal access to health products and technology; effective health service delivery and disease control under a national emergency situation; the shortfalls in the supply of professional personnel; and the issues of governance in the health sector management. Research priority setting exercise involving policymakers is an example of demand driven strategy in the health policymaking process capable of reversing inequities and strengthening the health systems in LMICs.
Parkes, Jacqueline H; Pyer, Michelle; Wray, Paula; Taylor, Jane
In recent years, several UK and, international funders of health and social care related research have adopted the policy of requiring explicit evidence of the 'public' voice in all aspects of project design. For many academic researchers engaged within research, evaluations or audit projects, this formal requirement to actively engage members of the public will present them with both benefits and challenges to securing knowledgeable, skilled, and confident lay representation onto project teams. This could potentially lead to the exploitation of those individuals who are available, appropriately informed, and adequately prepared for such activities. Currently, much of the preparation of patients or members of the public for research involvement tends to be aligned to specific projects; however, with the call for greater active and meaningful involvement of lay representatives in future national and international funding applications, there is clearly a growing need to 'train' sufficient numbers of confident and competent representatives to meet this growing demand. This paper describes the development of a specifically designed research awareness training programme and underpinning theoretical model, which has been specifically designed to support active and meaningful lay involvement in research, evaluations and audit projects. Developed over a four year period, the course is a culmination of learning extracted from a series of four completed research projects, which have incorporated an element of public and patient involvement (PPI) training in their overall design. Crown Copyright © 2014. Published by Elsevier Ireland Ltd. All rights reserved.
The majority of studies included in recent reviews of impact for public and patient involvement (PPI) in health research had a qualitative design. PPI in solely quantitative designs is underexplored, particularly its impact on statistical analysis. Statisticians in practice have a long history of working in both consultative (indirect) and collaborative (direct) roles in health research, yet their perspective on PPI in quantitative health research has never been explicitly examined. To explore the potential and challenges of PPI from a statistical perspective at distinct stages of quantitative research, that is sampling, measurement and statistical analysis, distinguishing between indirect and direct PPI. Statistical analysis is underpinned by having a representative sample, and a collaborative or direct approach to PPI may help achieve that by supporting access to and increasing participation of under-represented groups in the population. Acknowledging and valuing the role of lay knowledge of the context in statistical analysis and in deciding what variables to measure may support collective learning and advance scientific understanding, as evidenced by the use of participatory modelling in other disciplines. A recurring issue for quantitative researchers, which reflects quantitative sampling methods, is the selection and required number of PPI contributors, and this requires further methodological development. Direct approaches to PPI in quantitative health research may potentially increase its impact, but the facilitation and partnership skills required may require further training for all stakeholders, including statisticians. © 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.
Moule, Pam; Davies, Rosie
Patient and public involvement in all aspects of research is espoused and there is a continued interest in understanding its wider impact. Existing investigations have identified both beneficial outcomes and remaining issues. This paper presents the impact of public involvement in one case study led by a mental health charity conducted as part of a larger research project. The case study used a devolved model of working, contracting with service user-led organizations to maximize the benefits of local knowledge on the implementation of personalized budgets, support recruitment and local user-led organizations. To understand the processes and impact of public involvement in a devolved model of working with user-led organizations. Multiple data collection methods were employed throughout 2012. These included interviews with the researchers (n = 10) and research partners (n = 5), observation of two case study meetings and the review of key case study documentation. Analysis was conducted in NVivo10 using a coding framework developed following a literature review. Five key themes emerged from the data; Devolved model, Nature of involvement, Enabling factors, Implementation challenges and Impact. While there were some challenges of implementing the devolved model it is clear that our findings add to the growing understanding of the positive benefits research partners can bring to complex research. A devolved model can support the involvement of user-led organizations in research if there is a clear understanding of the underpinning philosophy and support mechanisms are in place. © 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Full Text Available Abstract This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals, including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.
Boulos, Maged N Kamel; Curtis, Andrew J; Abdelmalik, Philip
This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic) of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association) workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals), including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.
Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A
Research with hazardous biologic materials (biohazards) is essential to the progress of medicine and science. The field of microbiology has rapidly advanced over the years, partially due to the development of new scientific methods such as recombinant DNA technology, synthetic biology, viral vectors, and the use of genetically modified animals. This research poses a potential risk to personnel as well as the public and the environment. Institutions must have appropriate oversight and take appropriate steps to mitigate the risks of working with these biologic hazards. This article will review responsibilities for institutional oversight of occupational health and safety for research involving biologic hazards.
Rawson, Timothy M; Castro-Sánchez, Enrique; Charani, Esmita; Husson, Fran; Moore, Luke S P; Holmes, Alison H; Ahmad, Raheelah
Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research. A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool. 188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of "non-experts" as decision makers were expressed. Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Lees, David; Procter, Nicholas; Fassett, Denise; Handley, Christine
To describe the research model developed and successfully deployed as part of a multi-method qualitative study investigating suicidal service-users' experiences of mental health nursing care. Quality mental health care is essential to limiting the occurrence and burden of suicide, however there is a lack of relevant research informing practice in this context. Research utilising first-person accounts of suicidality is of particular importance to expanding the existing evidence base. However, conducting ethical research to support this imperative is challenging. The model discussed here illustrates specific and more generally applicable principles for qualitative research regarding sensitive topics and involving potentially vulnerable service-users. Researching into mental health service users with first-person experience of suicidality requires stakeholder and institutional support, researcher competency, and participant recruitment, consent, confidentiality, support and protection. Research with service users into their experiences of sensitive issues such as suicidality can result in rich and valuable data, and may also provide positive experiences of collaboration and inclusivity. If challenges are not met, objectification and marginalisation of service-users may be reinforced, and limitations in the evidence base and service provision may be perpetuated.
From an ethical perspective, good governance involves the translation of collective moral intentions into effective and accountable institutional actions. With respect to the use of human subjects in Canadian health research, I contend that there have been many good intentions but very little in the way of appropriate governance arrangements. Hence, the question, "who minds the store?" is especially acute with respect to the protection of vulnerable individuals and groups that are typically recruited as subjects for health research in Canada. Beyond diagnosing failures in governance and their causes, I offer suggestions for significant reforms, including evidence-based ethics assessment, independent oversight, and greater participation of research subjects in governance. I will close with some more general reflections on ethics, law, and governance.
Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana E.
Background: Despite experiencing health inequalities, people with intellectual disabilities are under-represented in health research. Previous research has identified barriers but has typically focused on under-recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual…
Hassan, Lamiece; Swarbrick, Caroline; Sanders, Caroline; Parker, Angela; Machin, Matt; Tully, Mary P; Ainsworth, John
There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research. Background Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool
Wilson, Patricia; Mathie, Elspeth; Poland, Fiona; Keenan, Julia; Howe, Amanda; Munday, Diane; Kendall, Sally; Cowe, Marion; Staniszewska, Sophie; Goodman, Claire
Objectives To explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England. Methods Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects. Results In research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as 'authentically' lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science. Conclusions While patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.
Iyer, Sharat P; Pancake, Laura S; Dandino, Elizabeth S; Wells, Kenneth B
Barriers to sustainably implementing general medical interventions in community mental health (CMH) settings include role uncertainty, consumer engagement, workforce limitations, and sustainable reimbursement. To address these barriers, this project used a community-partnered participatory research framework to create a stakeholder-based general medical and wellness intervention in a large CMH organization, with consumers involved in all decision-making processes. Consumers faced practical barriers to participating in organizational decision making, but their narratives were critical in establishing priorities and ensuring sustainability. Addressing baseline knowledge and readiness of stakeholders and functional challenges to consumer involvement can aid stakeholder-based approaches to implementing general medical interventions in CMH settings.
McCabe, O Lee; Marum, Felicity; Semon, Natalie; Mosley, Adrian; Gwon, Howard; Perry, Charlene; Moore, Suzanne Straub; Links, Jonathan M
Concerns have arisen over recent years about the absence of empirically derived evidence on which to base policy and practice in the public health system, in general, and to meet the challenge of public health emergency preparedness, in particular. Related issues include the challenge of disaster-caused, behavioral health surge, and the frequent exclusion of populations from studies that the research is meant to aid. To characterize the contributions of nonacademic collaborators to a series of projects validating a set of interventions to enhance capacity and competency of public mental health preparedness planning and response. Urban, suburban, and rural communities of the state of Maryland and rural communities of the state of Iowa. Study partners and participants (both of this project and the studies examined) were representatives of academic health centers (AHCs), local health departments (LHDs), and faith-based organizations (FBOs) and their communities. A multiple-project, case study analysis was conducted, that is, four research projects implemented by the authors from 2005 through 2011 to determine the types and impact of contributions made by nonacademic collaborators to those projects. The analysis involved reviewing research records, conceptualizing contributions (and providing examples) for government, faith, and (nonacademic) institutional collaborators. Ten areas were identified where partners made valuable contributions to the study series; these "value-areas" were as follows: 1) leadership and management of the projects; 2) formulation and refinement of research topics, aims, etc; 3) recruitment and retention of participants; 4) design and enhancement of interventions; 5) delivery of interventions; 6) collection, analysis, and interpretation of data; 7) dissemination of findings; 8) ensuring sustainability of faith/government preparedness planning relationships; 9) optimizing scalability and portability of the model; and 10) facilitating
Gibson, Andy; Welsman, Jo; Britten, Nicky
There is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future. © 2017 The Authors Health Expectations published by John Wiley & Sons Ltd.
Full Text Available Setting health research priorities is a complex and value–driven process. The introduction of the Child Health and Nutrition Research Initiative (CHNRI method has made the process of setting research priorities more transparent and inclusive, but much of the process remains in the hands of funders and researchers, as described in the previous two papers in this series. However, the value systems of numerous other important stakeholders, particularly those on the receiving end of health research products, are very rarely addressed in any process of priority setting. Inclusion of a larger and more diverse group of stakeholders in the process would result in a better reflection of the system of values of the broader community, resulting in recommendations that are more legitimate and acceptable.
Full Text Available In 2007 and 2008, the World Health Organization's Department for Child and Adolescent Health and Development commissioned five large research priority setting exercises using the CHNRI (Child Health and Nutrition Research Initiative method. The aim was to define research priorities related to the five major causes of child deaths for the period up to the year 2015. The selected causes were childhood pneumonia, diarrhoea, birth asphyxia, neonatal infections and preterm birth/low birth weight. The criteria used for prioritization in all five exercises were the “standard” CHNRI criteria: answerability, effectiveness, deliverability, potential for mortality burden reduction and the effect on equity. Having completed the exercises, the WHO officers were left with another question: how “fundable” were the identified priorities, i.e. how attractive were they to research funders?
Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).
Boote, Jonathan D; Twiddy, Maureen; Baird, Wendy; Birks, Yvonne; Clarke, Clare; Beever, Daniel
It is good practice for the public to be involved in developing health research. Resources should be available for researchers to fund the involvement of the public in the development of their grants. To describe a funding award scheme to support public involvement in grant development, managed by an NIHR Research Design Service (RDS). Case examples of how the award contributed to successful grant applications and findings from a recent evaluation of the scheme are presented. A case study of resource provision to support public involvement activities in one region of England. University and NHS-based researchers, and members of the public. Between 2009 and 2012, the RDS approved 45 public involvement funding awards (totalling nearly £19,000). These awards contributed to 27 submitted applications at the time of writing, of which 11 were successful (totalling over £7.5 million). The evaluation revealed difficulties encountered by some researchers when involving the public in grant development, which led to suggestions about how the scheme could be improved. This award scheme represents an efficient method of providing researchers with resources to involve the public in grant development and would appear to represent good value for money. © 2013 John Wiley & Sons Ltd.
Full Text Available Abstract Background There is some evidence that medical students consider population health issues less important than other domains in the health sciences and attitudes to this field may become more negative as training progresses. A need to improve research skills among medical students has also been suggested. Therefore we piloted an integrative teaching exercise that combined teaching of research skills and public health, with real-world research. Methods Third year medical students at the University of Otago (Dunedin, New Zealand filled in a questionnaire on their housing conditions and health. The students were given the results of the survey to discuss in a subsequent class. Student response to this teaching exercise was assessed using a Course Evaluation Questionnaire. Results Of the 210 students in the class, 136 completed the Course Evaluation Questionnaire (65%. A majority of those who responded (77% greatly supported or supported the use of the survey and seminar discussion for future third year classes. Most (70% thought that the session had made them more aware and concerned about societal problems, and 72% felt that they now had an improved understanding of the environmental determinants of health. Students liked the relevance and interaction of the session, but thought it could be improved by the inclusion of small group discussion. The findings of the students' housing and health were considered by the tutors to be of sufficient value to submit to a scientific journal and are now contributing to community action to improve student housing in the city. Conclusion In this pilot study it was feasible to integrate medical student teaching with real-world research. A large majority of the students responded favourably to the teaching exercise and this was generally successful in raising the profile of public health and research. This approach to integrated teaching/research should be considered further in health sciences training and
Goodwin, Elizabeth; Boddy, Kate; Tatnell, Lynn; Hawton, Annie
Over recent years, public involvement in health research has expanded considerably. However, public involvement in designing and conducting health economics research is seldom reported. Here we describe the development, delivery and assessment of an approach for involving people in a clearly defined piece of health economics research: selecting health states for valuation in estimating quality-adjusted life-years (QALYs). This involvement formed part of a study to develop a condition-specific preference-based measure of health-related quality of life, the Multiple Sclerosis Impact Scale (MSIS-8D), and the work reported here relates to the identification of plausible, or realistic, health states for valuation. An Expert Panel of three people with multiple sclerosis (MS) was recruited from a local involvement network, and two health economists designed an interactive task that enabled the Panel to identify health states that were implausible, or unlikely to be experienced. Following some initial confusion over terminology, which was resolved by discussion with the Panel, the task worked well and can be adapted to select health states for valuation in the development of any preference-based measure. As part of the involvement process, five themes were identified by the Panel members and the researchers which summarised our experiences of public involvement in this health economics research example: proportionality, task design, prior involvement, protectiveness and partnerships. These are described in the paper, along with their practical implications for involving members of the public in health economics research. Our experience demonstrates how members of the public and health economists can work together to improve the validity of health economics research. Plain Language Summary It has become commonplace to involve members of the public in health service research. However, published reports of involving people in designing health economics research are rare. We
Research involving prisoners repeatedly went astray during the last century, culminating in the cruel medical experiments inside the Nazi concentration camps that gave rise to the Nuremberg Code. However, prisoners continued to become victims of scientific exploitation by the rapidly evolving biomedical research industry. The common roots of these abuses were the flawed philosophy that the needs of the society outweigh the needs of the individual and the researchers' view that prisoners are cheap, easy to motivate and stable research subjects. Prisoners are vulnerable to exploitation and abuse by research because their freedom for consent can easily be undermined, and because of learning disabilities, illiteracy and language barriers prevailing within prisoner populations. Therefore, penal laws of some countries supported by a number of internationally agreed documents prohibit research involving prisoners completely. However, prisoners must also be regarded as vulnerable to the specific health problems in prisons, e.g. transmissible diseases, mental disorders and suicide - problems that need to be addressed by research involving prisoners. Additionally, the participation of prisoner patients in research they directly can benefit from should be provided. Hence, it must be a common objective to find the right balance between protection from exploitation and access to research beneficial to prisoners.
Frankel, M. S.
The policy making process which led to development of the Public Health Service Guidelines governing research involving human subjects is outlined. Part 1 examines the evolution of PHS Guidelines, tracing (1) evolution of thought and legal interpretation regarding research using human subjects; (2) initial involvement of the Federal government; (3) development of the government's research program; (4) the social-political environment in which formal government policy was developed; and (5) various policy statements issued by the government. Part 2 analyzes the process by which PHS Guidelines were developed and examines the values and other underlying factors which contributed to their development. It was concluded that the evolution of the Guidelines is best understood within the context of a mixed-scanning strategy. In such a strategy, policy makers make fundamental decisions regarding the basic direction of policy and subsequent decisions are made incrementally and within the contexts set by the original fundamental decisions.
Mockford, Carole; Murray, Matt; Seers, Kate; Oyebode, Jan; Grant, Richard; Boex, Sue; Staniszewska, Sophie; Diment, Yvonne; Leach, Jim; Sharma, Uma; Clarke, Rosemary; Suleman, Rashida
In the United Kingdom (UK), official bodies such as the Department of Health and research funders such as the National Institute for Health Research support and encourage lay involvement in all stages of research studies. The SHARED study has had substantial patient and public involvement (PPI) from developing the idea to dissemination. The aim of the study has been to develop recommendations led by service users for health and social care professionals to use at hospital discharge and in care planning for people living with memory loss and their carers. This article is about how the study started and the benefits, costs and challenges we encountered as the lead and lay co-researchers. Once we were successful with the grant application, we had to recruit and train the lay co-researchers and obtain various approvals before we could start the project. We had various support from funders, the Research Ethics Committee, lay members of Alzheimer's Society and from the lay co-researchers. However, we encountered some challenges with paying the lay co-researchers and with getting the approval for the co-researchers to interview staff on NHS premises. The challenges were overcome eventually but some aspects of the study changed because of this. We suggest that some changes could be made to the research system which would lead to greater inclusion of the lay co-researchers in research studies and would make the process more straightforward for the research team. Background Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led recommendations for people with
Anderson de Cuevas, Rachel; Nylén, Lotta; Burström, Bo; Whitehead, Margaret
Public involvement in research is considered good practice by European funders; however, evidence of its research impact is sparse, particularly in relation to large-scale epidemiological research. To explore what difference public and stakeholder involvement made to the interpretation of findings from an evaluation of a natural policy experiment to influence the wider social determinants of health: 'Flexicurity'. Stockholm County, Sweden. Members of the public from different occupational groups represented by blue-collar and white-collar trade union representatives. Also, members of three stakeholder groups: the Swedish national employment agency; an employers' association and politicians sitting on a national labour market committee. Total: 17 participants. Qualitative study of process and outcomes of public and stakeholder participation in four focused workshops on the interpretation of initial findings from the flexicurity evaluation. New insights from participants benefiting the interpretation of our research findings or conceptualisation of future research. Participants sensed more drastic and nuanced change in the Swedish welfare system over recent decades than was evident from our literature reviews and policy analysis. They also elaborated hidden developments in the Swedish labour market that were increasingly leading to 'insiders' and 'outsiders', with differing experiences and consequences for financial and job security. Their explanation of the differential effects of the various collective agreements for different occupational groups was new and raised further potential research questions. Their first-hand experience provided new insights into how changes to the social protection system were contributing to the increasing trends in poverty among unemployed people with limiting long-standing illness. The politicians provided further reasoning behind some of the policy changes and their intended and unintended consequences. These insights fed into
Rogers, Morwenna; Bethel, Alison; Boddy, Kate
Research involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively. To design a search filter to identify literature where patient and public involvement (PPI) was used in health research. A reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review. The search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a 'real-life' systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%. The PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI. © 2016 Health Libraries Group.
Davison, Kirsten K; Charles, Jo N; Khandpur, Neha; Nelson, Timothy J
Purpose Examine fathers' perceived reasons for their lack of inclusion in pediatric research and strategies to increase their participation. Description We conducted expert interviews with researchers and practitioners (N = 13) working with fathers to inform the development of an online survey. The survey-which measured fathers' perceived reasons for their underrepresentation in pediatric research, recommended recruitment venues, and research personnel and study characteristics valued by fathers-was distributed online and in-person to fathers. Assessment Respondents included 303 fathers. Over 80 % of respondents reported that fathers are underrepresented in pediatric research because they have not been asked to participate. Frequently recommended recruitment venues included community sports events (52 %), social service programs (48 %) and the internet (60 %). Compared with white fathers, more non-white fathers recommended public transit (19 % vs. 10 %, p = .02), playgrounds (16 % vs. 6 %, p = .007) and barber shops (34 % vs. 14 %, p research may increase if researchers explicitly invite father to participate, target father-focused recruitment venues, clearly communicate the benefits of the research for fathers and their families and adopt streamlined study procedures.
Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A
Research with hazardous biologic materials (biohazards) is essential to the progress of medicine and science. The field of microbiology has rapidly advanced over the years, partially due to the development of new scientific methods such as recombinant DNA technology, synthetic biology, viral vectors, and the use of genetically modified animals. This research poses a potential risk to personnel as well as the public and the environment. Institutions must have appropriate oversight and take app...
George, Asha S; Mehra, Vrinda; Scott, Kerry; Sriram, Veena
Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research. To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries. We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out of the remaining 160 articles with rich community participation, we further examined 64 articles focused on service delivery and governance within health systems research. Most articles were led by authors in high income countries and many did not consistently list critical aspects of study quality. Articles were most likely to describe community participation in health promotion interventions (78%, 202/260), even though they were less participatory than other health systems areas. Community involvement in governance and supply chain management was less common (12%, 30/260 and 9%, 24/260 respectively), but more participatory. Articles cut across all health conditions and varied by scale and duration, with those that were implemented at national scale or over more than five years being mainstreamed by government. Most articles detailed improvements in service availability, accessibility and
M. van der Werf (Marloes); S.G. Heumann (Silke); E.M.H. Mitchell
textabstractWhile communities at risk have been both drivers and partners in HIV research, their important role in TB research is yet to be fully realized. Involvement of communities in tuberculosis care and prevention is currently on the international agenda. This creates opportunities and
Crocker, Joanna C; Boylan, Anne-Marie; Bostock, Jennifer; Locock, Louise
There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. Qualitative interview study. Thirty-eight PPI contributors involved in health research across the UK. Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Thornton, Hazel; Edwards, Adrian; Elwyn, Glyn
This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision making and risk communication in general practice' incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change.
Snape, D; Kirkham, J; Preston, J; Popay, J; Britten, N; Collins, M; Froggatt, K; Gibson, A; Lobban, F; Wyatt, K; Jacoby, A
Objective There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. Design Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. Setting The UK health and social care research community. Participants Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. Results We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. Conclusions Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for ‘best practice’ standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the
PURPOSE: The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. DESIGN/METHODOLOGY/APPROACH: The paper presents a preliminary framework for anal......PURPOSE: The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. DESIGN/METHODOLOGY/APPROACH: The paper presents a preliminary framework...... for analysis of patient involvement in health care. This framework is used to analyze key governance features of patient involvement in Denmark based on previous research papers and reports describing patient involvement in Danish health care. FINDINGS: Patient involvement is important in Denmark...... be identified when pursuing the strategies at the same time. RESEARCH LIMITATIONS/IMPLICATIONS: Because of the chosen research approach, the research results may lack generalizability. Therefore, researchers are encouraged to test the proposed framework further. PRACTICAL IMPLICATIONS: The paper includes...
Tierney, Edel; McEvoy, Rachel; O'Reilly-de Brún, Mary; de Brún, Tomas; Okonkwo, Ekaterina; Rooney, Michelle; Dowrick, Chris; Rogers, Anne; MacFarlane, Anne
There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine - normalized - way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization - definition, enrolment, enactment and appraisal. Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Twenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co-governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co-governance and dissemination of research processes and findings. © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Pandya-Wood, Raksha; Barron, Duncan S; Elliott, Jim
Researchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in. The process of ethical review does not consider how researchers work with patients and the public early on to design their studies. Furthermore, there is no requirement for researchers to seek ethical approval for public involvement. However, in our work advising researchers about public involvement we have found that the ways in which researchers involve the public in the design of their studies are sometimes unintentionally unethical, and this is the focus of our paper. We have observed ten areas where ethical issues may arise because of the actions researchers may or may not take and which might consequently have a negative impact. Therefore, we have used these observations to develop a "framework" to help researchers and the public work together at the early design stage in ways that are ethical. Our intention for the framework is to help researchers be mindful of these ten areas and how easily ethical issues can arise. The framework suggests some ways to overcome the potential issues in each of the ten areas. The ten areas are: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding
Maman Joyce Dogba
Full Text Available Despite the growing interest in understanding the psycho-social impact of rare genetic diseases, few studies examine this concept and even fewer seek to obtain feedback from families who have lived the experience. The aim of this project was to involve families of children living with osteogenesis imperfecta (OI in the development of a tool to assess the impact of OI on the lives of patients and their families.This project used an integrated knowledge translation approach in which knowledge users (clinicians and people living with OI and their families were consulted throughout the four steps of development, that is: content mapping, item generation, tool appraisal and pre-testing of the questionnaires. The International Classification of Functioning and Health was used as a framework for content mapping. Based on a scoping review we selected two validated tools to use as a basis for developing the questionnaire. The final parent self-report version measured six domains: experience of diagnosis; use of health services; use of social and psychological support services; expectations about tertiary specialized centers; and socio-demographic information.A total of 27 out of 40 families receiving care at the Shriners Hospital for Children-Canada and invited to participate in the pre-test returned the completed questionnaires. In more than two-thirds of families (69%; n = 18 OI was suspected either at or within the first 3 months after birth. Up to 46% of families consulted between 3 and 5 doctors (46%; n = 12 prior to final diagnosis. The use of services by families varied from 0 to 16 consultations, 0 to 9 exploratory examinations and 1 to 10 types of allied health services. In the 12 months prior to the study, fewer than a quarter of children had been admitted, for treatment, for hospital stays of longer than 8 hours or to an emergency department (24% and 9% respectively. Only 29% of parents received psychological support.This joint development
Hudon, Catherine; Loignon, Christine; Grabovschi, Cristina; Bush, Paula; Lambert, Mireille; Goulet, Émilie; Boyer, Sophie; De Laat, Marianne; Fournier, Nathalie
Improving the knowledge and competencies of healthcare professionals is crucial to better address the specific needs of persons living in poverty and avoid stigmatization. This study aimed to explore the needs and expectations of persons living in poverty and healthcare professionals in terms of medical training regarding poverty and its effects on health and healthcare. We conducted a participatory action research study using photovoice, a method using photography, together with merging of knowledge and practice, an approach promoting dialogue between different sources of knowledge. Nineteen healthcare professionals and persons from an international community organization against poverty participated in the study. The first phase included 60 meetings and group sessions to identify the perceived barriers between persons living in poverty and healthcare teams. In the second phase, sub-committees deployed action plans in academic teaching units to overcome barriers identified in the first phase. Data were analysed through thematic analysis, using NVivo, in collaboration with five non-academic co-researchers. Four themes in regard to medical training were highlighted: improving medical students' and residents' knowledge on poverty and the living conditions of persons living in poverty; improving their understanding of the reality of those people; improving their relational skills pertaining to communication and interaction with persons living in poverty; improving their awareness and capacity for self-reflection. At the end of the second phase, actions were undertaken such as improving knowledge of the living conditions of persons living in poverty by posting social assistance rates, and tailoring interventions to patients' reality by including sociodemographic information in electronic medical records. Our findings also led to a participatory research project aiming to improve the skills and competency of residents and health professionals in regard to the quality of
Lawn, Sharon; Venning, Anthony; Winsall, Megan; Jones, Gabrielle M; Wyld, Kaisha; Damarell, Raechel A; Antezana, Gaston; Schrader, Geoffrey; Smith, David; Collin, Philippa; Bidargaddi, Niranjan
Background Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth. Objective To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth. Methods Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis. Results A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable
Shimmin, Carolyn; Wittmeier, Kristy D M; Lavoie, Josée G; Wicklund, Evan D; Sibley, Kathryn M
The concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people's lives. Though patient engagement conceptually begins to disrupt the identity of "researcher," and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of "patient" as a homogenous group, denying the reality that individuals' economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways. Patient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness - the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis. This article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both "patient" and "researcher," spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and
EPA scientists are helping communities and policymakers develop and implement policies and practices designed to improve public health, especially for groups such as children, the elderly or the socioeconomically disadvantaged.
Devonport, Tracey J; Nicholls, Wendy; Johnston, Lynne H; Gutteridge, Robin; Watt, Angela
This article presents a reflective account of Patient and Public Involvement (PPI) in the development of obesity and binge eating research. We established Patient Advisory Groups (PAGs) at two English regional National Health Service (NHS) weight management services. PPI was evaluated as follows: (i) PAG members completed a Post Participation Evaluation Questionnaire, (ii) PAG meetings captured group discussion on PPI involvement, (iii) practitioner and researchers produced written reflections on PPI and (iv) sources one to three were consolidated during reflections that took place via e-mail and telephone correspondence between researchers and practitioners, culminating in a summary SKYPE meeting between one practitioner and one researcher involved in the PAGs. Results in the form of reflections suggest guidelines on undertaking PPI were helpful with regard 'what to do', but less helpful on 'how'. For example, suggestions for the management of interpersonal factors such as eliciting self-disclosure and managing power differentials are insufficiently addressed in existing guidelines. The present case study illustrated how interpersonal considerations can help or hinder the optimal use of PPI. Recommendations for practitioners and researchers planning PPI are offered.
Nielsen, Karen Dam
With e-health technologies, patients are invited as co-producers of data and information. The invitation sparks new expectations, yet often results in disappointments. With persistent ambitions to involve patients by means of e-health, it seems crucial to gain a better understanding of the nature......, sources and workings of the expectations that come with being invited. I analyse the use of an e-health system for ICD-patients, focusing on how patients sought to serve as information providers. Continuing STS-research on invisible work in technology use, I show how using the system involved complex work...... that understanding the dialogic dynamics and ‘overflows’ of information filtration work can help unpack the challenges of facilitating (patient) participation with e-health and other filtration devices....
Snape, D; Kirkham, J; Britten, N; Froggatt, K; Gradinger, F; Lobban, F; Popay, Jennie; Wyatt, K; Jacoby, Ann
Objective To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers
Sotis, J J
Since the human embryonic stem cell research involves destruction of human embryos and, therefore, hinges on the fundamental question of the status of the embryo, it is essential to examine this status carefully in order to establish fitting guidelines for research. The US National Institutes of Health has proposed its own guidelines on the matter recently (1999). The document, rooted in current pluralistic perspectives in moral philosophy (or bioethics), is criticised in this paper as morally inadequate. The argumentation of the criticism stems from the theological perspective on human personhood, which focuses on a continuity of personal identity from embryos to adult human beings. An additional concern for the author is the moral complicity in which the research dependent upon the destruction of human embryonic life is sanctioned.
Éder Oliveira Rocha
Full Text Available Objective: To analyze the social representations of occupational risks involving students in the area of health. Method: Exploratory research with 160 students from nursing, medicine and dentistry, through interviews. The data were processed in ALCESTE 4.8 and lexical analysis done by descending hierarchical classification. Results: In four semantic classes, namely: occupational risks involving students in the area of health, the work environment and occupational risks, exposure to accidents with sharps and adoption of standard precautions as biosecurity measures. Conclusion: Students healthcare represent occupational risks, such as a concern for the prevention of cross infection in the workplace, should both professionals and students of health, adopt standard precautions and biosecurity measures in the environment work.
Patall, Erika A.; Cooper, Harris; Robinson, Jorgianne Civey
New emphasis is being placed on the importance of parent involvement in children's education. In a synthesis of research on the effects of parent involvement in homework, a meta-analysis of 14 studies that manipulated parent training for homework involvement reveals that training parents to be involved in their child's homework results in (a)…
The purpose of this article is to describe the methodological issues involved in conducting qualitative research to explore and describe nurses' experience of being directly involved with termination of pregnancies and developing guidelines for support for these nurses. The article points out the sensitivity and responsibility ...
[An intergenerational health promotion program involving older adults in urban areas. "Research of Productivity by Intergenerational Sympathy (REPRINTS)": first-year experience and short-term effects].
Fujiwara, Yoshinori; Nishi, Mariko; Watanabe, Naoki; Lee, Sangyoon; Inoue, Kazuko; Yoshida, Hiroto; Sakuma, Naoko; Kureta, Youichi; Ishii, Kenji; Uchida, Hayato; Kakuno, Fumihiko; Shinkai, Shoji
We have launched a new intervention study, called "Research of Productivity by Intergenerational Sympathy (REPRINTS)" in which senior volunteers engage in reading picture books to children. The "REPRINTS" program consistently involves social roles and intellectual activity, two higher-level functional capacities. This study reported findings and problems experienced through "REPRINTS" during the first year, ascertained potential effectiveness of social activity, and proposed methods for continued activity. Basic concepts of "REPRINTS"program include "contribution to society", "life-long learning", and "group activity." Sixty seven volunteers and 74 controls, all aged 60 years and over living in three areas, ie., Chuo-ku, central Tokyo, Kawasaki city, suburb of Tokyo and Nagahama city, a local city, participated in a baseline health check-up in June, 2004. After completion of 3-month training seminars (once a week, 2 hr per session), volunteers visited public elementary schools and kindergartens in groups of 6-10 persons for 6 months. They were assessed again by follow-up health check-up in March, 2005. At baseline, the proportion of those who had no grand children (41.8% vs. 20.3%, P= 0.006), average school years (13.4 +/- 2.5 vs. 12.3 +/- 2.5 years, P= 0.008), having any experience of volunteer activities (79.1% vs. 52.7%, P=0.001), and an usual walking speed (86.7 +/- 12.3 vs. 81.3 +/- 12.9 m/min, P=0.012) were significantly higher in volunteers than in controls. There was no significant difference in other baseline characteristics between the two groups. At follow-up, social network scores for 56 volunteers were significantly improved: frequency of contact with grandchildren and others around neighborhood and size of circles of friends and acquaintances were increased, as compared to controls. Social support scores for the volunteers significantly decreased in the receiving aspect, while increased in the giving aspect. In addition, consciousness of loving
Piil, Karin; Jarden, Mary
Introduction: Patient involvement in healthcare has expanded from the clinical practice setting to include collaboration during the research process. There has been a growing international interest in patient and public involvement in setting research priorities to reduce the risk of discrepancy...... between what patients with cancer and their relatives experience as important unanswered questions and those which are actually researched. This study aims to challenge the conventional research process by inviting patients with life-threatening cancer (primary malignant brain tumours or acute leukaemia......), relatives and patient organisations to join forces with clinical specialists and researchers to identify, discuss and prioritise supportive care and rehabilitation issues in future research. Methods and analysis: This is an exploratory qualitative study comprising two sets of three focus group interviews...
Thornton, H.; Edwards, A.; Elwyn, G.
OBJECTIVE: This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision
Mjøsund, Nina Helen; Vinje, Hege Forbech; Eriksson, Monica; Haaland-Øverby, Mette; Jensen, Sven Liang; Kjus, Solveig; Norheim, Irene; Portaasen, Inger-Lill; Espnes, Geir Arild
The aim was to explore the process of involving mental healthcare service users in a mental health promotion research project as research advisors and to articulate features of the collaboration which encouraged and empowered the advisors to make significant contributions to the research process and outcome. There is an increasing interest in evaluating aspects of service user involvement in nursing research. Few descriptions exist of features that enable meaningful service user involvement. We draw on experiences from conducting research which used the methodology interpretative phenomenological analysis to explore how persons with mental disorders perceived mental health. Aside from the participants in the project, five research advisors with service user experience were involved in the entire research process. We applied a case study design to explore the ongoing processes of service user involvement. Documents and texts produced while conducting the project (2012-2016), as well as transcripts from multistage focus group discussions with the research advisors, were analysed. The level of involvement was dynamic and varied throughout the different stages of the research process. Six features: leadership, meeting structure, role clarification, being members of a team, a focus on possibilities and being seen and treated as holistic individuals, were guiding principles for a salutogenic service user involvement. These features strengthened the advisors' perception of themselves as valuable and competent contributors. Significant contributions from research advisors were promoted by facilitating the process of involvement. A supporting structure and atmosphere were consistent with a salutogenic service user involvement. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Full Text Available A major requirement both of national and international ethical codes for human experimentation, and of national legislation in many cases, is that new substances or devices should not be used for the first time on human beings unless previous tests on animals have provided a reasonable presumption of their safety. That is so called: Good Clinical Praxis (GCP. There are two international ethical codes intended principally for the guidance of countries or institutions that have not yet formulated their own ethical requirements for human experimentation: The Declaration of Helsinki of the World Medical Association and The Proposed International Guidelines for Biomedical Research Involving Human Subjects of the Council for International Organizations of Medical Sciences and the World Health Organization.Animal experimentation is fundamental to the biomedical sciences, not only for the advancement of specific vital processes, but also for the improvement of methods of prevention, diagnosis, and treatment of disease both in man and in animals. The use of animals is also indispensable for testing the potency and safety of biological substances used in human and veterinary medicine, as well as for determining the toxicity of the rapidly growing number of molecules that never existed before in nature and which may represent a hazard to health. This extensive exploitation by man of animals implies philosophical and moral problems that are not peculiar to their use for scientific purposes, and there are no objective ethical criteria by which to judge claims and counterclaims in such matters. However, there is a consensus that „deliberate cruelty is repugnant”.While many countries have general laws or regulations imposing penalties for ill-treatment of animals, relatively few make specific provision for their use for scientific purposes. Because of differing legal systems and cultural backgrounds there are varying approaches to the use of
Platt, Stephen David; Watson, Jonathan
... the progress towards developing and implementing health promotion interventions that: * * * * are theoretically grounded, socio-culturally appropriate and sustainable involve the redistribution of resources towards those most in need reflect the principles of equity, participation and empowerment incorporate rigorous, methodologically ...
Rohde, A. [CONCAWE, Brussels (Belgium)
CONCAWE has been working on health issues since its formation in 1963. In the early years, the focus of this work was on occupational health hazards and risks in the refining industry. Over the years, especially in the past decade, broader human health issues have been at the centre of environmental and regulatory debate, with 'health effects' increasingly being the driver behind environmental improvement and occupational health initiatives. Against this background, CONCAWE's health research has expanded to deal with these new and emerging issues. Health issues are complex and need to be addressed by experts in several different areas. Through its member companies, CONCAWE has been able to maintain, as its 'Health Management Group', a strong team of occupational physicians, toxicologists, industrial hygienists, exposure and risk assessors, and product stewards with particular expertise in oil industry-related issues. Academic researchers are also called upon to undertake specialised research, as appropriate. In the 40th anniversary Review (October 2003), we reviewed CONCAWE's involvement in three initiatives: (1) the Clean Air for Europe Programme (CAFE), an EU strategy for air quality management; (2) chemicals legislation and the increasing demand to inform the public about health and environmental hazards of chemicals; and (3) a global environment and health strategy with a special focus on children (EU SCALE initiative). Interestingly, these initiatives from 10 years ago continue to influence CONCAWE's work on health research, its objectives being to identify key healthrelated issues and gaps, develop cost-effective, leveraged research programmes to address these gaps, and provide CONCAWE members with advice, guidance and support on the significance of these issues based on scientific and professional evaluations. In this 50th anniversary article, we summarise CONCAWE's involvement in three new or expanded areas: chemicals legislation and its requirements under
Hossne, William Saad; Vieira, Sonia; De Freitas, Corina Bontempo Duca
In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.
Stratford, Anthony; Brophy, Lisa; Castle, David; Harvey, Carol; Robertson, Joanne; Corlett, Philip; Davidson, Larry; Everall, Ian
This paper highlights the importance and value of involving people with a lived experience of mental ill health and recovery in neuroscience research activity. In this era of recovery oriented service delivery, involving people with the lived experience of mental illness in neuroscience research extends beyond their participation as "subjects". The recovery paradigm reconceptualises people with the lived experience of mental ill health as experts by experience. To support this contribution, local policies and procedures, recovery-oriented training for neuroscience researchers, and dialogue about the practical applications of neuroscience research, are required.
Larouche, Annie; Potvin, Louise
The Global Working Group on Health Promotion Research (GWG HPR) of the International Union for Health Promotion and Education (IUHPE) presents a collection of four articles illustrating innovative avenues for health promotion research. This commentary synthesizes the contributions of these articles while attempting to define the contours of research in health promotion. We propose that innovation in research involves the adoption of a reflexive approach wherein consideration of context plays different roles. The reflexive process consists of questioning what is taken for granted in the conceptualization and operationalization of research. It involves linking research findings and its theoretical foundations to characteristics and goals of the field and observed realities, while orienting reflection on specific objects. The reflexive nature of the research activity is of paramount importance for innovation in health promotion. With the publication of this series, the GWG HPR wishes to strengthen health promotion research capacity at the global level and reaffirm health promotion as a specific research domain.
Fahy, AE; Stansfeld, SA; Smuk, M; Smith, NR; Cummins, S; Clark, C
: Cyberbullying differs from face-to-face bullying and may negatively influence adolescent mental health, but there is a lack of definitive research on this topic. This study examines longitudinal associations between cyberbullying involvement and adolescent mental health. : Participants were 2,480 teenagers taking part in the Olympic Regeneration in East London study. We collected information from participants when they were 12-13 years old and again 1 year later to examine links between inv...
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Background: The problem of obesity in children and adults has been widely recognised and described in the literature . There are several challenges leading to an augmentation of the problem. Firstly, the aetiology of overweight and obesity is not clear. Secondly, the long term effectiveness of prevention programmes is low. Only in some groups and for a short period of time an effect may be visible . Thirdly, little is known about what children should learn when . A proper concept of educating children in regard to healthy eating or physical activity does not exist. As far as we know an essential pre-requisite for health education programmes is that they are lifestyleoriented and easily transferable into daily family life . For this, working together with the parents would be essential. The main goal of this article will be 1 to get a better understanding of what parents and nurses/ teachers want 2 to strengthen the point that this method is one way to involve the target groups and thus it is likely to increase the acceptance of health education programmes 3 to describe that focus group discussions are a useful tool to identify the opinions of the target group.
Methods: In the frame of three projects, focus groups with nurses/ teachers and parents have been carried out.
Results and Conclusions: Results from different focus group discussions with pedagogues and parents will be discussed and conclusions for health education programmes relevant to all key players involved will be identified.
Tanzania Journal of Health Research (TJHR) aims to facilitate the advance of health sciences by publishing high quality research and review articles that communicate new ideas and developments in biomedical and health research. TJHR is ...
Shanmugam, A V
In discussing the lessons learned from research in the area of health communication, focus is on basic strategic issues; the scope of health communications in terms of audience, information, education and motivation approaces and India's satellite Instructional Television Experiment (SITE). Health communication is the process by which a health idea is transferred from a source, such as a primary health center, to a receiver, community, with the intention of changing the community's behavior. This involves the formulation of specific strategies for the conduct of health and family welfare communication. In the processs of health communication, it has been a common practice in India as well as in other developing countries to depend upon a plethora of communication media. Yet, despite maximum utilization of the mass media and interpersonal channels of communication, questions remain about the efficacy of the system in bringing about change. Thus, the need to draw upon lessons from research becomes obvious. Communication effectiveness researches have concentrated on 3 basic strategic issues: the question of physical reception of messages by the audience; interpretation or understanding of messages on the part of the audience in accordance with the intention of the communicator; and effectiveness of communication on the cognitive, affective and behavioral dimensions of the audience. Innumberable researches in communication have provided several lessons which have expanded the scope of health communication. This expansion can be observed in terms of audiences reached, information disseminated, education undertaken, and motivation provided. Research has identified several distinct groups to whom specific health messages have to be addressed. These include government and political elites, health and family welfare program administrators, and the medical profession and clinical staff. Information on health needs to include both the concept of health and the pertinent ideas
Chiodi, Mônica Bonagamba; Marziale, Maria Helena Palucci; Robazzi, Maria Lúcia do Carmo Cruz
This descriptive research aimed to recognize the occurrence of work accidents (WA) involving exposure to biological material among health workers at Public Health Units in Ribeirão Preto-SP, Brazil. A quantitative approach was adopted. In 2004, 155 accidents were notified by means of the Work Accident Communication (WAC). Sixty-two accidents (40%) involved exposure to biological material that could cause infections like Hepatitis and Aids. The highest number of victims (42 accidents) came from the category of nursing aids and technicians. Needles were responsible for 80.6% of accidents and blood was the biological material involved in a majority of occupational exposure cases. This subject needs greater attention, so that prevention measures can be implemented, which consider the peculiarities of the activities carried out by the different professional categories.
Wyatt, Katrina; Carter, Mary; Mahtani, Vinita; Barnard, Angela; Hawton, Annie; Britten, Nicky
The value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. To evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. A multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. An in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. Of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.
Royle, Jane; Oliver, Sandy
This study aims to describe a cycle of development leading to sustainable methods for involving consumers in the management of a program commissioning health technology assessment. Staff time was dedicated to developing procedures for recruiting and briefing consumers to participate in prioritizing, commissioning, and reporting research. Resources and support were developed in light of early feedback from consumers and those working with them. These were piloted and amended before being used routinely. Over 4 years, procedures and resources have been developed to support six consumers attending seven to eight prioritization meetings a year; thirty to forty-five consumers each year commenting on research need for particular topics; thirty consumers a year commenting on research proposals, and twenty a year commenting on research reports. The procedures include clear job descriptions, induction and development days, clear briefing materials, payment for substantial tasks, and regularly seeking feedback to improve procedures. Explicit, inclusive, and reproducible methods for supporting consumer involvement that satisfy National Health Service policy recommendations for involving consumers in research require dedicated staff time to support a cycle of organizational development.
Towle, Angela; Bainbridge, Lesley; Godolphin, William; Katz, Arlene; Kline, Cathy; Lown, Beth; Madularu, Ioana; Solomon, Patricia; Thistlethwaite, Jill
Patients as educators (teaching intimate physical examination) first appeared in the 1960s. Since then, rationales for the active involvement of patients as educators have been well articulated. There is great potential to promote the learning of patient-centred practice, interprofessional collaboration, community involvement, shared decision making and how to support self-care. We reviewed and summarised the literature on active patient involvement in health professional education. A synthesis of the literature reveals increasing diversity in the ways in which patients are involved in education, but also the movement's weaknesses. Most initiatives are 'one-off' events and are reported as basic descriptions. There is little rigorous research or theory of practice or investigation of behavioural outcomes. The literature is scattered and uses terms (such as 'patient'!) that are contentious and confusing. We propose future directions for research and development, including a taxonomy to facilitate dialogue, an outline of a research strategy and reference to a comprehensive bibliography covering all health and human services.
Ricardo Eccard da Silva
Full Text Available Developing countries have experienced a dramatic increase in the number of clinical studies in the last decades. The aim of this study was to describe 1 the number of clinical trials submitted to the Brazilian Health Surveillance Agency (Agência Nacional de Vigilância Sanitária, Anvisa from 2007 to 2012 and the number of human-subject research projects approved by research ethics committees (RECs and the National Research Ethics Committee (Comissão Nacional de Ética em Pesquisa, CONEP in Brazil from 2007 to 2011 and 2 the diseases most frequently studied in Brazilian states in clinical trials approved in the country from 2009 to 2012, based on information from an Anvisa databank. Two databases were used: 1 the National Information System on Research Ethics Involving Human Beings (Sistema Nacional de Informação Sobre Ética em Pesquisa envolvendo Seres Humanos, SISNEP and 2 Anvisa's Clinical Research Control System (Sistema de Controle de Pesquisa Clínica, SCPC. Data from the SCPC indicated an increase of 32.7% in the number of clinical trials submitted to Anvisa, and data from the SISNEP showed an increase of 69.9% in those approved by RECs and CONEP (from 18 160 in 2007 to 30 860 in 2011. Type 2 diabetes (26.0% and breast cancer (20.5%-related to the main causes of mortality in Brazil-were the two most frequently studied diseases. The so-called “neglected diseases,” such as dengue fever, were among the least studied diseases in approved clinical trials, despite their significant impact on social, economic, and health indicators in Brazil. Overall, the data indicated 1 a clear trend toward more research involving human beings in Brazil, 2 good correspondence between diseases most studied in clinical trials approved by Anvisa and the main causes of death in Brazil, and 3 a low level of attention to neglected diseases, an issue that should be considered in setting future research priorities, given their socioeconomic and health effects.
Harm H. Tillema
Full Text Available Educational research acknowledges that researcher’s beliefs and training play a role in framing the outcomes of any study. Research not only consists of defining objectives and following certain methods (search but also of making decisions over the steps taking during the inquiry process (research.Establishing a conceptual framework to guide actions on the subjective processes in research is then crucial to control them. With that purpose in mind we offer researchers and Teacher Educators a heuristic tool to be conscious on the risks that can be taken when immersed in research interpretative process. This instrument could be utilised in PhD programs, masters and research projects.
Petersen, Kirsten; Hounsgaard, Lise; Borg, Tove
reading, structural analysis, and critical interpretation. Findings: The study showed that user involvement in rehabilitation was experienced by the users as a struggle for self-determination and recognition. Being able to decide and to have influence on daily activities and everyday life, together...... with having goals to reach during rehabilitation, were viewed as valuable. Situations without influence or involving coercion were reported especially during periods of illness or hospitalization. Conclusions: The results of this study contribute to knowledge about user involvement from service users...
Fleischman, Alan R
Research involving critically ill neonates creates many ethical challenges. Neonatal clinical research has always been hard to perform, is very expensive, and may generate some unique ethical concerns. This article describes some examples of historical and modern controversies in neonatal research, discusses the justification for research involving such vulnerable and fragile patients, clarifies current federal regulations that govern research involving neonates, and suggests ways that clinical investigators can develop and implement ethically grounded human subjects research. Copyright © 2016 Elsevier Inc. All rights reserved.
Vahdat, Shaghayegh; Hamzehgardeshi, Leila; Hessam, Somayeh; Hamzehgardeshi, Zeinab
Patient participation means involvement of the patient in decision making or expressing opinions about different treatment methods, which includes sharing information, feelings and signs and accepting health team instructions. Given the importance of patient participation in healthcare decision making which empowers patients and improves services and health outcomes, this study was performed to review previous studies on patient participation in healthcare decision making. To prepare this narrative review article, researchers used general and specific search engines, as well as textbooks addressing this subject for an in-depth study of patient involvement in healthcare decision-making. As a result, 35 (out of 100 relevant) articles and also two books were selected for writing this review article. BASED ON THE REVIEW OF ARTICLES AND BOOKS, TOPICS WERE DIVIDED INTO SIX GENERAL CATEGORIES: definition of participation, importance of patient participation, factors influencing participation of patients in healthcare decisions, method of patient participation, tools for evaluating participation, and benefits and consequences of patient participation in health care decision-making. IN MOST STUDIES, FACTORS INFLUENCING PATIENT PARTICIPATION CONSISTED OF: factors associated with health care professionals such as doctor-patient relationship, recognition of patient's knowledge, allocation of sufficient time for participation, and also factors related to patients such as having knowledge, physical and cognitive ability, and emotional connections, beliefs, values and their experiences in relation to health services.
AFRICAN JOURNALS ONLINE (AJOL) · Journals · Advanced Search · USING AJOL ... The Research Journal of Health Sciences is dedicated to promoting high quality research work in the field of health and related biological sciences. It aligns ...
Price, Marva M
Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) is a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...
Price, Marva M
Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) was a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...
Price, Marva M
Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) is a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...
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Article 12 of the UN Convention on the Rights of the Child, states that children should be involved in decisions that directly affect them.1 Research involving children should ensure that the opinions and assistance of children and young people is sought at the beginning of the project as their perspectives may influence all aspects of the research design. To describe the challenges recruiting paediatric patients and members of the public to consult on the design of a research project. Posters were put up around the Children's Hospital including pharmacy to recruit paediatric patients and parents to review a research proposal involving children with long-term conditions. There were two responses to the poster, a father and his 15 year old daughter, and a father with a 2 year old child. The father of the 15 year old attended the initial planning meeting, unfortunately the 15 year old and the father of the 2 year old were unable to attend on the day although both agreed to participate in the project. The meeting gave the opportunity to explain the research proposal and answer questions. It was established that the lay team would review the lay summary, participant information leaflet (PIL), and questionnaires that would be sent to the participants. It was arranged that all further contact would be via email due to travel constraints.Patient and public involvement (PPI) in research requires the individuals to be reimbursed for their time. The National Institute for Health Research rate is £18.75 per hour. The lay team members were informed of this and were reimbursed for attending the planning meeting. The use of posters to recruit PPI into the research design had limited success. Since recruitment, the Children's Hospital has launched a youth partnership which may be able to assist in recruitment of lay team members in the future.The logistics of how to pay the lay team members needed to be resolved before their recruitment to ensure timely payment. A form has been
Garbutt, Ruth; Tattersall, John; Dunn, Jo; Boycott-Garnett, Rachel
This is an article that talks about our research about sex and relationships for people with learning disabilities. It talks about how people with learning disabilities have been fully involved in the research. (Contains 2 footnotes.)
Greco, Dirceu; Diniz, Nilza Maria
Conflicts of interest are inherent to the majority of relationships among individuals and of these with companies and institutions and, certainly, research involving human beings is no exception. In relation to clinical research, the main focus of this manuscript, conflicts of interest occur at different levels and usually permeate among them: In the pharmaceutical industry in their decisions to invest to develop new products, especially vaccines and drugs, and also in relation to marketing of these products; Among the investigators the conflicts may be related to the financial gains to participate in pharma sponsored trials, or to the expected academic career boost attained with the publication of the results of the trials and also to personal interests such as the financial support for trips to international conferences. Often the participation of host country investigators is restricted to performing phase III or IV protocols developed abroad, many times with low scientific relevance, and even lower relevance to public health; Universities or research institutes themselves also have conflicts of interest, as the sponsored projects may help increase their budgets, both directly (taxes) and indirectly (e.g., improvement of physical infrastructure of laboratories or out patient clinics); For the trial volunteers in developing countries, and Brazil is no exception despite free and universal access to its health system, participation in clinical trials is many times seen as, and can really be, an unique opportunity of receiving better health care, better treatment by the health professionals, easier access to costly lab exams and also to receiving certain medications which would otherwise be difficult to have access to. In order to handle these conflicts of interest, Brazil has a well-established and respected legal support and ethical normatization. The latter is represented by Resolution 196/96 of the Brazilian National Research Ethics Committee (CONEP). This
Williamson, Tracey; Kenney, Laurence; Barker, Anthony T; Cooper, Glen; Good, Tim; Healey, Jamie; Heller, Ben; Howard, David; Matthews, Martin; Prenton, Sarah; Ryan, Julia; Smith, Christine
To appraise the application of accepted good practice guidance on public involvement in assistive technology research and to identify its impact on the research team, the public, device and trial design. Critical reflection and within-project evaluation were undertaken in a case study of the development of a functional electrical stimulation device. Individual and group interviews were undertaken with lay members of a 10 strong study user advisory group and also research team members. Public involvement was seen positively by research team members, who reported a positive impact on device and study designs. The public identified positive impact on confidence, skills, self-esteem, enjoyment, contribution to improving the care of others and opportunities for further involvement in research. A negative impact concerned the challenge of engaging the public in dissemination after the study end. The public were able to impact significantly on the design of an assistive technology device which was made more fit for purpose. Research team attitudes to public involvement were more positive after having witnessed its potential first hand. Within-project evaluation underpins this case study which presents a much needed detailed account of public involvement in assistive technology design research to add to the existing weak evidence base. The evidence base for impact of public involvement in rehabilitation technology design is in need of development. Public involvement in co-design of rehabilitation devices can lead to technologies that are fit for purpose. Rehabilitation researchers need to consider the merits of active public involvement in research.
Parsons, Jim; Bergin, Tiffany
The aftermath of violent crime can leave victims with persistent emotional and mental health problems. Although research has shown the potential benefits of prosecuting cases through the courts, there is also a substantial literature that suggests that common features of the criminal justice system can exacerbate the impact of the initial crime, leading to a secondary victimization. The authors present a review of the research on the positive and negative impact of criminal justice involvement, and common points of failure in the efforts of justice institutions to meet the needs of victims. They conclude with recommendations for future work, including the need for research on restorative justice, victim impact statements, court notification systems, victim services, and victim advocates.
Fahy, Amanda E; Stansfeld, Stephen A; Smuk, Melanie; Smith, Neil R; Cummins, Steven; Clark, Charlotte
Cyberbullying differs from face-to-face bullying and may negatively influence adolescent mental health, but there is a lack of definitive research on this topic. This study examines longitudinal associations between cyberbullying involvement and adolescent mental health. Participants were 2,480 teenagers taking part in the Olympic Regeneration in East London study. We collected information from participants when they were 12-13 years old and again 1 year later to examine links between involvement in cyberbullying and future symptoms of depression and social anxiety, and mental well-being. At baseline, 14% reported being cybervictims, 8% reported being cyberbullies, and 20% reported being cyberbully-victims in the previous year. Compared to uninvolved adolescents, cybervictims and cyberbully-victims were significantly more likely to report symptoms of depression (cybervictims: odds ratio [OR] = 1.44, 95% confidence interval [CI] [1.00, 2.06]; cyberbully-victims: OR = 1.54, 95% CI [1.13, 2.09]) and social anxiety (cybervictims: OR = 1.52, 95% CI [1.11, 2.07]; cyberbully-victims: OR = 1.44, 95% CI [1.10, 1.89]) but not below average well-being (cybervictims: relative risk ratio = 1.28, 95% CI [.86, 1.91]; cyberbully-victims: relative risk ratio = 1.38, 95% CI [.95, 1.99]) at 1 year follow-up, after adjustment for confounding factors including baseline mental health. This study emphasizes the high prevalence of cyberbullying and the potential of cybervictimization as a risk factor for future depressive symptoms, social anxiety symptoms, and below average well-being among adolescents. Future research should identify protective factors and possible interventions to reduce adolescent cyberbullying. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.
The International Journal of Health Research is an online international journal ... The journal is devoted to the promotion of health sciences and related disciplines (including medicine, pharmacy, nursing, biotechnology, cell and molecular ...
The International Journal of Health Research is an online international journal ... disciplines (including medicine, pharmacy, nursing, biotechnology, cell and ... collaboration among scientists, the industry and the healthcare professionals.
The International Journal of Health Research is an online international ... The journal welcomes original research papers, reviews and case reports on ..... mediator generated by endothelial cells, ... Springer Science and Business Media,.
The International Journal of Health Research is an online international journal ... research papers, reviews and case reports on current topics of special ... formulated as Gastroretentive Drug Delivery System ...... In vivo gastric studies were run.
Brabers, A.E.M.; Rademakers, J.J.D.J.M.; Groenewegen, P.P.; Dijk, L. van; Jong, J.D. de
Patients vary in their preferences towards involvement in medical decision-making. Previous research, however, gives no clear explanation for this observed variation in their involvement. One possible explanation might be health literacy. Health literacy refers to personal characteristics and social
It seeks particularly (but not exclusively) to encourage multidisciplinary research and collaboration ... Submission of Manuscript: The International Journal of Health Research uses a journal management software to allow authors ... access to medicine, infrastructural decay, quality of health professional, poor adherence to ...
This article identifies the key ethical issues that need to be addressed in any research study involving children and young people, accessed through the NHS. It makes specific reference to the Declaration of Helsinki and to additional guidance developed for researchers from a variety of disciplines, both within healthcare and in other fields of study. The focus of the paper is on defining the key ethical issues, identifying the complexities in the legislative framework underpinning research involving this patient group and offering practical advice on when, and how, ethical approval needs to be sought
Trials, 2006; and Ethics in Health Research Principles, Structures and Procedures, 2015) regarding caregivers' consent in research involving minors as research ..... 11. Jeff H, Ramesh R, Sanjay MB. Pediatric airway management.
Tse, Samson; Tang, Jessica; Kan, Alice
Patient or service user involvement in mental health services (MHS) is a hallmark of the recovery approach. In this viewpoint article, we review Tambuyzer et al. paper 'Patient involvement in mental health care: One size does not fit all' in order to express our opinion of their work. We also suggest specific actions that may enhance the implementation of patient involvement in MHS. We make three main points about Tambuyzer et al. model. First, the cultural dimension of patient involvement seems underemphasized in the model. Second, the model might be improved if the increasing role of communications technology in patient involvement is taken into consideration. Third, it is important to acknowledge that the process of patient involvement is not linear, and participation is not a homogeneous experience. We suggest that the model be expanded and that further work be carried out on the implementation of patient involvement in MHS. © 2012 John Wiley & Sons Ltd.
Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah
Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Mixed methods including a two-round Delphi study with pre-specified 80% consensus criterion, with follow-up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self-selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. © 2011 Blackwell Publishing Ltd.
Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah
Abstract Background Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. Objective To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Methods Mixed methods including a two‐round Delphi study with pre‐specified 80% consensus criterion, with follow‐up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self‐selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Results Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. Conclusions This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. PMID:21324054
Elberse, J.E.; Pittens, C.A.C.M.; de Cock Buning, J.T.; Broerse, J.E.W.
Patient involvement in scientific advisory processes could lead to more societally relevant advice. This article describes a case study wherein the Health Council of the Netherlands involved patient groups in an advisory process with a predefined focus: setting a research agenda for medical products
Linda M. Ferguson
Full Text Available Faculty who engage students as participants in their qualitative research often encounter methodological and ethical problems. Ethical issues arise from the fiduciary relationship between faculty and their students, and violations of that relationship occur when the educator has a dual role as researcher with those students. Methodological issues arise from research designs to address these ethical issues. This conflict is particularly evident in faculty research on pedagogy in their own disciplines, for which students are necessary as participants but are captive in the relationship. In this article, the authors explore the issues of double agency when faculty involve students as participants in their research.
Full Text Available Research in public health is a range that includes from fundamental research to research in clinical practice, including novel advances, evaluation of results and their spreading. Actually, public health research is considered multidisciplinary incorporating numerous factors in its development. Establishing as a mainstay the scientific method, deepens in basic research, clinical epidemiological research and health services. The premise of quality and relevance is reflected in international scientific research, and in the daily work and good biomedical practices that should be included in the research as a common task. Therefore, the research must take a proactive stance of inquiry, integrating a concern planned and ongoing development of knowledge. This requires improve international coordination, seeking a balance between basic and applied research as well as science and technology. Thus research cannot be considered without innovation, weighing up the people and society needs. Acting on knowledge of scientific production processes requires greater procedures thoroughness and the effective expression of the results. It is noted as essential to establish explicit principles in review and evaluation of the adjustments of actions, always within the standards of scientific conduct and fairness of the research process. In the biomedical scientific lines it have to be consider general assessments that occur related to the impact and quality of health research, mostly leading efforts to areas that require further attention. However, other subject areas that may be deficient or with lower incidence in the population should not be overlook. Health research as a source of new applications and development provides knowledge, improving well-being. However, it is understandable without considering the needs and social demands. Therefore, in public health research and to improve the health of the population, we must refine and optimize the prevention and
a systematic mapping review methodology, the focus was to map and examine research in these types of games or game environments, and to identify potentials and gaps in the field to inform future research. 89 studies were identified through iterative searching and identification processes applying keywords......Due to the increasing significance of games where lay people are involved in generating knowledge for research or development, the current paper presents a mapping review of status and trends in research of games designed for citizen science, crowdsourcing or community driven research. Using...... they were involved and studies where participants develop knowledge for professional use. The 32 studies were selected for a grounded theory inspired qualitative review and six themes were identified: 1. Motivation; 2. Quality of participant contribution; 3. Learning/education; 4. System/task analysis; 5...
Bailes, Marion J; Minas, I Harry; Klimidis, Steven
In this paper we examine ethical issues relevant to conducting mental health research with refugees and immigrant communities that have cultural orientations and social organisation that are substantially different to those of the broader Australian community, and we relate these issues to NH&MRC Guidelines. We describe the development and conduct of a mental health research project carried out recently in Melbourne with the Somali community, focusing on ethical principles involved, and relating these to the NH&MRC National Statement on Ethical Conduct in Research Involving Humans, and the NH&MRC document Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. The experience of conducting mental health research with the Somali community highlights the fact that the principles of inclusion and benefit enunciated in the NH&MRC document Values and Ethics are particularly pertinent when conducting research with refugees and immigrant communities that are culturally distant to those of the broader Australian community. These principles inform issues of research design and consent, as well as guiding respectful engagement with the participating community and communication of the research findings.
relatable to health educational development. The overall value theme is elucidated by two development projects that transform as well as challenge specific health-educational practices. This forms the basis of the development of a critical, constructive and practice-oriented perspective on competence......Health professionals working in the field of health promotion and education experience certain value conflicts: their professional and personal values, the values of their clients or of the health services clash with pedagogic values such as participation, involvement, learning and competence...... development. My educational research is concerned with the exploration and development of the knowledge about values and health education related to competence development among health professionals. The purpose is to contribute to systematic knowledge development with a view to support and diversify...
Reference Ranges for Fasting Profiles and Oral Glucose Tolerance Test ... Submission of Manuscript: The International Journal of Health Research uses a journal management software to allow .... medical textbooks [4, 5] and internet. In the.
collaboration among scientists, the industry and the healthcare professionals. ... forum for the communication and evaluation of data, methods and findings in health ... research articles, 3,000 for technical notes, case reports, commentaries and ...
Nov 3, 2008 ... The International Journal of Health Research is an online ... forum for the communication and evaluation of data, methods and findings ... Introduction ... worms are pathogenic for human beings. .... McGraw Hill Co., New York,.
The International Journal of Health Research is an online international journal allowing ... forum for the communication and evaluation of data, methods and findings in health sciences and related ... Conclusion: Permeation rate of drugs across the ..... New Delhi, McGraw Hill Medical Publishing ... Human skin permeation of.
Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean
This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration...... with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote...
van der Scheer, Lieke; Garcia, Elisa; van der Laan, A.L.; van der Burg, Simone; Boenink, Marianne
The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) of basic scientific findings to relevant and
Scheer, L. van der; Garcia, E.; Laan, A.L. van der; Burg, S. van der; Boenink, M.
The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and
Nuclear engineering is one of the modern and rapidly advancing technologies. Those already involved in it are continually updating their knowledge to keep abreast of the developments. Of course the sound basic principles of engineering still apply but the scene of application can be transformed in a few years. In fact, because of this, many engineers from more traditional industries often express the view that presently the total range of nuclear engineering is research and development. How can students be trained for such a rapidly advancing technology. Is not the answer early involvement. Effective early involvement for students can only come about by the close co-operation and involvement of the staff of universities and industry. The theme is developed. (author)
Sormunen, Marjorita; Tossavainen, Kerttu; Turunen, Hannele
A 2-year, participatory action research school health study focused on developing components for home-school partnerships to support children's health learning process. Two intervention schools implemented strengthened health and collaboration-orientated activities; two control schools followed the national core curriculum without extracurricular activities. The parents of fourth-grade pupils (10-11 years at baseline) completed questionnaires before intervention in spring 2008 (N = 348) and after intervention in spring 2010 (N = 358). A two-way analysis of variance was conducted to determine whether time (2008/2010) and group (intervention/control) influenced parents' perceptions and experiences of parental involvement, health education and health support received from the school. Compared with controls, the intervention schools' parents experienced greater involvement ethos (Cohen's d = 0.57, P education (Cohen's d = 0.60, P = 0.02) and health support (Cohen's d = 0.35, P = 0.02). Health education participation among parents increased only partially during the intervention (Cohen's d = -0.12, P = 0.193). School health interventions based on schools' needs may have the potential to influence positively the relationship between home and school and increase the visibility of health education. The study was undertaken within the Schools for Health in Europe program.
Research on this matter should also be encouraged to inform future practice. Keywords: Volunteering; Health research; Nonprofit organization. Mohammad A Al- ... “organizations”. According to Porter and Kramer. , the number of volunteer organizations in the. USA is increasing which might help address the society's high ...
Nordentoft, Helle Merete; Nanna, Kappel
Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research. The guid......Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research...... and problems of vulnerable patients and - at the same time - respect their integrity without exposing them unnecessarily? The article illuminates the interactional construction of roles and relationships and how they affect the contextual construction of vulnerability. In this respect we demonstrate...
Millar, Samantha L; Chambers, Mary; Giles, Melanie
The concept of service user involvement is an evolving concept in the mental health-care literature. This study sought to explore and analyse the concept of service user involvement as used in within the field of mental health care. An evolutionary concept analysis was conducted using a literature-based sample extracted from an electronic database search. One hundred and thirty-four papers met the inclusion criteria and were analysed to discover key attributes, antecedents and consequences of service user involvement and to produce a definition of the concept. Five key attributes of service user involvement within the context of mental health care were identified: a person-centred approach, informed decision making, advocacy, obtaining service user views and feedback and working in partnership. Clarity of the attributes and definition of the concept of service user involvement aims to promote understanding of the concept among key stakeholders including mental health professionals, service users and community and voluntary organizations. The findings of the research have utility in the areas of theory and policy development, research on service user involvement in mental health care and service user involvement in mental health practice. Directions for further research regarding the concept are identified. © 2015 John Wiley & Sons Ltd.
McFarland, Michael J
Few studies explore how the relationship between religious involvement and mental health varies by gender among the aging population. This article outlines a series of arguments concerning the effects of gender in moderating the effect of religious involvement on mental health and examines them empirically. Using two waves (2001 and 2004) of the Religion, Aging, and Health Survey, this study estimates the differential effect of gender in the religion-mental health connection using multivariate analyses for a nationally representative sample of U.S. adults aged 66-95 years. Results suggest that (a) men obtain more mental health benefits from religious involvement than women, (b) women with higher levels of organizational religious involvement have similar levels of mental health as those with moderate and lower levels of organizational religious involvement, (c) men with very high levels of organizational religious involvement tend to have much higher levels of mental health than all other men. The relationship between organizational religious involvement and mental health is found to be mostly a nonlinear one such that those with the highest levels of religiosity receive all the benefits. The findings suggest a number of promising research directions on the religion-mental health connection among older Americans.
Cărăuşu, Elena Mihaela; Mihăilă, C B; Indrei, L L
Education for oral-dental health in children is that component of general health education aimed at creating cultural health models, cultivating in the young generation a healthy hygienic behaviour and outlying the opinions about the ways dental disorders can be prevented and treated. The most important goal of health education is to contribute to the preservation/improvement of children's oral health status. This study has two main goals: to assess the exact health education knowledge of the questioned parents and to evaluate their involvement in the oral health education and promotion. This study included 95 parents, aged between 25 and 49 years, with children in primary schools. For data collection a questionnaire was used. The questions were grouped on common features: food habits and healthy diet, causes of oral disease, prevention of oral disease, dental visit habits, oral hygiene habits. The study revealed that parents have a moderate knowledge about dental health education and dental caries prevention, no significant sex differences being found, and poor knowledge about periodontal diseases prevention. As to food hygiene, parents proved a sound knowledge about healthy and unhealthy diet. Our conclusions at the end of this study is that the family with children in primary schools do not get involved in oral/dental health education.
Lazarus, Jeff; Wallace, Samantha A; Liljestrand, Jerker
The issue of strengthening local research capacity in Africa is again high on the health and development agenda. The latest initiative comes from the Wellcome Trust. But when it comes to capacity development, one of the chief obstacles that health sectors in the region must confront is the migrat......The issue of strengthening local research capacity in Africa is again high on the health and development agenda. The latest initiative comes from the Wellcome Trust. But when it comes to capacity development, one of the chief obstacles that health sectors in the region must confront...... is the migration of health professionals to countries that offer more lucrative opportunities, like those in western Europe. To combat this ''brain drain'', already back in 1984, the Swedish International Development Cooperation Agency (Sida) created a training programme in which healthcare professionals from...... Africa conducted the bulk of their research in their own countries. However, the model was only partly successful. Several years ago, we assessed the preconditions for the renewal of Sida support for research and research training activities in the region. Based on our work to develop a critical mass...
Jivraj, Jamil; Sacrey, Lori-Ann; Newton, Amanda; Nicholas, David; Zwaigenbaum, Lonnie
Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify…
Full Text Available Participatory-action research encourages the involvement of all key stakeholders in the research process and is especially well suited to mental health research. Previous literature outlines the importance of engaging stakeholders in the development of research questions and methodologies, but little has been written about ensuring the involvement of all stakeholders (especially non-academic members in dissemination opportunities such as publication development. The Article Idea Chart was developed as a specific methodology for engaging all stakeholders in data analysis and publication development. It has been successfully utilised in a number of studies and is an effective tool for ensuring the dissemination process of participatory-action research results is both inclusive and transparent to all team members, regardless of stakeholder group. Keywords: participatory-action research, mental health, dissemination, community capacity building, publications, authorship
Angood, Peter; Dingman, Jennifer; Foley, Mary E; Ford, Dan; Martins, Becky; O'Regan, Patti; Salamendra, Arlene; Sheridan, Sue; Denham, Charles R
The objective of this article was to provide a guide to health care providers on patient and family involvement in health care. This article evaluated the latest published studies for patient and family involvement and reexamined the objectives, the requirements for achieving these objectives, and the evidence of how to involve patients and families. Critical components for patient safety include changing the organizational culture; including patients and families on teams; listening to patients and families; incorporating their input into leadership structures and systems; providing full detail about treatment, procedures, and medication adverse effects; involving them on patient safety and performance improvement committees; and disclosing medical errors. The conclusion of this article is that, for the future, patient and family involvement starts with educating patients and families and ends with listening to them and taking them seriously. If patient and family input is emphatically built into systems of performance improvement, and if patients and families are taken seriously and are respected for their valuable perspectives about how care can be improved, then organizations can improve at improving. Resources in health care are in short supply, yet the resources of patient and family help and time are almost limitless, are ready to be tapped, and can have a huge impact on improving the reliability and overall success for any health care organization.
Full Text Available There has been a dramatic rise in the scale and scope of collaborative global health research. A number of structural and scientific factors explain this growth and there has been much discussion of these in the literature. Little, if any, attention has been paid, however, to the factors identified by scientists and other research actors as important to successful research collaboration. This is surprising given that their decisions are likely to play a key role in the sustainability and effectiveness of global health research initiatives. In this paper, we report on qualitative research with leading scientists involved in major international research collaborations about their views on good and bad collaborations and the factors that inform their decision-making about joining and participating actively in research networks. We identify and discuss eight factors that researchers see as essential in judging the merits of active participation in global health research collaborations: opportunities for active involvement in cutting-edge, interesting science; effective leadership; competence of potential partners in and commitment to good scientific practice; capacity building; respect for the needs, interests and agendas of partners; opportunities for discussion and disagreement; trust and confidence; and, justice and fairness in collaboration. Our findings suggest that the sustainability and effectiveness of global health research collaborations has an important ethical or moral dimension for the research actors involved.
Parker, Michael; Kingori, Patricia
There has been a dramatic rise in the scale and scope of collaborative global health research. A number of structural and scientific factors explain this growth and there has been much discussion of these in the literature. Little, if any, attention has been paid, however, to the factors identified by scientists and other research actors as important to successful research collaboration. This is surprising given that their decisions are likely to play a key role in the sustainability and effectiveness of global health research initiatives. In this paper, we report on qualitative research with leading scientists involved in major international research collaborations about their views on good and bad collaborations and the factors that inform their decision-making about joining and participating actively in research networks. We identify and discuss eight factors that researchers see as essential in judging the merits of active participation in global health research collaborations: opportunities for active involvement in cutting-edge, interesting science; effective leadership; competence of potential partners in and commitment to good scientific practice; capacity building; respect for the needs, interests and agendas of partners; opportunities for discussion and disagreement; trust and confidence; and, justice and fairness in collaboration. Our findings suggest that the sustainability and effectiveness of global health research collaborations has an important ethical or moral dimension for the research actors involved.
Fowler, Cathrine; Wu, Cynthia; Lam, Winsome
Competition for scarce clinical placements has increased requiring new and innovative models to be developed to meet the growing need. A participatory action research project was used to provide a community nursing clinical experience of involvement in parent education. Nine Hong Kong nursing students self-selected to participate in the project to implement a parenting program called Parenting Young Children in a Digital World. Three project cycles were used: needs identification, skills development and program implementation. Students were fully involved in each cycle's planning, action and reflection phase. Qualitative and quantitative data were collected to inform the project. The overall outcome of the project was the provision of a rich and viable clinical placement experience that created significant learning opportunities for the students and researchers. This paper will explore the student's participation in this PAR project as an innovative clinical practice opportunity. Copyright © 2013 Elsevier Ltd. All rights reserved.
Claims are gaining in importance as a tool of communication in the growing sector of health-related foods. In order to target the right consumers, it is crucial to determine their key characteristics. A realistically designed choice experiment aims at analysing the role of various determinants...... of choice for foods with claims. Logistic regression reveals that while product-involvement plays only a minor role, health-related food-involvement appears to be a better explanatory factor than e.g. sociodemographic variables. It is concluded that items measuring the latter type of involvement might...... be helpful for practical market research in the area of health-related foods....
Full Text Available Demographic change has increased the need for research on healthcare for older people. Recently there has been a growing awareness that research might benefit from actively involving patients and the public in study design and conduct. Besides empowering patients and democratizing research, involvement enhances the quality of research and the development of equitable healthcare solutions. Little is known about how to involve older people. This review aims to support scientists intending to involve older people in health research by systematically identifying and describing studies involving older people and analyzing associated facilitators and challenges. Old people were operationalized as people living with old-age-related conditions. We conducted a systematic search in PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature, and Cochrane library for the period 2007 to July 2017 and also manually searched reference lists of the nine retrieved articles and other relevant sources. While involvement of older people in research is feasible, specific challenges related to this group need be taken into account. Strategies to enhance effective involvement comprise a thoughtful choice of location, use of visualization and accessible communication, building good relationships and flexible approaches. Further research is needed on the involvement of people in care homes or with vision, hearing or mobility limitations.
Yu, Hua-Yin; Ulmer, William; Kowalczyk, Keith J; Hu, Jim C
Health services research (HSR) is increasingly important given the focus on patient-centered, cost-effective, high-quality health care. We examine how HSR affects contemporary evidence-based urologic practice and its role in shaping future urologic research and care. PubMed, urologic texts, and lay literature were reviewed for terms pertaining to HSR/outcomes research and urologic disease processes. HSR is a broad discipline that focuses on access, cost, and outcomes of Health care. Its use has been applied to a myriad of urologic conditions to identify deficiencies in access, to evaluate cost-effectiveness of therapies, and to evaluate structural, process, and outcome quality measures. HSR utilizes an evidence-based approach to identify the most effective ways to organize/manage, finance, and deliver high-quality urologic care and to tailor care optimized to individuals.
Kapp, Marshall B
The conduct of hematology/oncology research, particularly clinical trials involving human participants, is an extensively regulated enterprise. Professionals in the specialty of hematology/oncology have important stakes in the success of biomedical research endeavors. Knowledge about and compliance strategies regarding the pertinent regulatory parameters are essential for avoiding negative legal repercussions for involved professionals. At the same time, there is a need to be aware of and actively resist the danger that strong [legal] protectionism might inadvertently result in undermining physician investigators' sense of personal moral responsibility in the conduct of human experiments. For all the limitations of that virtue in the protection of human subjects, it is surely not one that we would want medical scientists to be without . Members of the potential participant pool, financial sponsors, and the general public must be convinced that everyone involved in the research enterprise is committed to operating within acceptable legal and ethical boundaries if the atmosphere of confidence and trust that is indispensable to the continued process and progress of investigation aimed at extending and improving quality of life for all of us in the future is to continue and flourish .
Froggatt, Katherine; Goodman, Claire; Morbey, Hazel; Davies, Sue L; Masey, Helen; Dickinson, Angela; Martin, Wendy; Victor, Christina
Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health-care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. A prospective case study design, with an embedded qualitative evaluation of PIR activity. Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Qualitative data collection involved discussion groups, and site-specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Early engagement in research can transform the undergraduate experience and has a positive effect on minority student recruitment to graduate school. Multiple strategies used to involve undergraduates in research at a large R1 university are presented. During my first four years as an assistant professor, my lab has hosted 14 undergraduates, 9 of them women and 4 of them Hispanic. Institutional support has been critical for undergraduate student involvement. UW supports a research program for incoming underrepresented students. An advantage of this program is very early research participation, with the opportunity for long-term training. One disadvantage is that many first year students have not yet identified their interests. The Biology major also requires students to complete an independent project, which culminates in a research symposium. Competitive research fellowships and grants are available for students to conduct work under faculty mentorship. We have been successful at keeping students on even when their majors are very different from our research discipline, mainly by providing flexibility and a welcoming lab environment. This mentoring culture is strongly fostered by graduate student interest and involvement with all undergraduates as well as active mentor training. By offering multiple pathways for involvement, we can accommodate students' changing schedules and priorities as well as changing lab needs. Students can volunteer, receive course credit, conduct an independent project or honors thesis, contribute to an existing project, do lab work or write a literature review, work with one mentor or on multiple projects. We often provide employment over the summer and subsequent semesters for continuing students. Some will increase their commitment over time and work more closely with me. Others reduce down to a few hours a week as they gain experience elsewhere. Most students stay multiple semesters and multiple years because they 'enjoy being in the
Planojević, Nina; Zivojinović, Dragica
Participation in clinical trials can be useful for the health of a person, in who it is conducted, but it does not have to be - it can even be harmful. Therefore, primary motive to accept such risk is humanity and human wish to contribute to the progress of medicine; this is expressed by personal consent. The consent, however, can be an expression of personal humanity, and for this, it is not logical that someone can give consent on behalf of someone else, as it is done by a legally authorized representative on behalf of a minor. Therefore, authors raise 3 questions: What are the reasons to consider representative's consent acceptable? How should a model of regulations look like in order to provide the most complete possible protection to a minor? Is actual regulation of minors' position within international and Serbian law, analyzed here by authors for their specific solutions, acceptable? Representative's consent is acceptable only for therapeutic research, because these can bring benefits to everyone's health, including a minor in which those are conducted - this is an acceptable (secondary) motive of participation in the research. Expression of humanity on other's behalf, typical for non-therapeutic research, is not acceptable; this makes ban of minors' participation in non-therapeutic research more appropriate regulation model. International regulations are not in accordance to results presented in the paper for allowing participation of minors both in therapeutic and non-therapeutic research. Serbian regulation is closer to the most acceptable regulation model.
Ndong, I; Steele, C; Mahony, E
When men are provided with information about reproductive health issues, they are more likely to support their partners' family planning decisions. Such support is particularly important in cultures where women are unable to negotiate sexual relationships, and may therefore be exposing themselves to sexually transmitted diseases (STDs) and unwanted pregnancies. Good communication between partners ensures that women receive the reproductive health care they need. AVSC International developed the Men As Partners (MAP) initiative with the goals of increasing men's awareness and support of their partners' reproductive health choices; men's awareness of the need to safeguard reproductive health, especially through the prevention of STDs; and the use of contraceptive methods which require the participation and cooperation of men among couples who want to use them. In May 1997, AVSC organized the first-ever interregional workshop on men's involvement in reproductive health. More than 150 participants from 5 continents attended the event in Mombasa, Kenya, where they discussed ways to involve men in the health of their female partners. Main workshop themes were gender issues, reproductive health services for men, community outreach and workplace programs, access to services, and adolescents.
Lee, Soo; Knight, Denise
This article reports on a survey of district nurses' involvement in mental health interventions in one county. Seventy-nine questionnaires were sent and 46 were returned. Descriptive analysis was carried out using statistical software. The DNs reported encountering a wide range of mental health issues and interventions in practice: dementia, anxiety and depression featured highly. Over half (55%) of the respondents reported involvement in bereavement counselling, and 28% and 23% of respondents reported encountering anxiety management, and problem solving and alcohol advice respectively. A large proportion, however, reported no involvement in mental health interventions. Among the psychiatric professionals, district nurses tended to have most frequent contacts with social workers. GPs were the most likely person to whom DNs made referrals, followed by community psychiatric nurses. Despite the apparent awareness of the values of psychosocial interventions, DNs were equally influenced by the medical model of treatment. In order to realize the potential contribution of district nurses in mental health interventions, there is a need for primary care teams to foster a closer working relationship with mental health specialist services.
Jun 6, 2009 ... disciplines (including medicine, pharmacy, nursing, biotechnology, cell and molecular biology, and related engineering fields). ... International Journal of Health Research, June 2009; 2(2): 195-199 (e2213p91-95) ... were measured in the diabetic and non-diabetic rats. .... People with Type 2 diabetes are at.
The central objective of GFHR is "to help correct the 10/90 gap" (GFHR 1999, p. ...... reports on health inequities as mediated by gender, ethnic group, and geography, ...... Yet, research with strong elements of community participation may be ...
Karlsson, Leena Eklund; Jakobsen, Mette Winge; Winblad, Malin; Aro, Arja R.
Collaboration between research and policy is an essential element for knowledge-based public health. However, only half of the Danish municipalities have experience with collaborating with researchers or other stakeholders. Through content analysis of interviews and policy documents the study explores the involvement of external stakeholders in…
Full text: The lives of selected people involved in radiation research are covered in two parts: 1. history of radiation and radioactivity; and 2. historical aspects of radiation and radiation protection in Western Australia. History of radiation/radioactivity: The background of some of the key people involved in early radiation research is discussed. These include Rontgen and Becqucrel who undertook early research into X-rays and radioactivity respectively. As well as the radiation hazards which early radiation scientists faced, there were also social pressures, as exemplified by the life of women such as Marie Curie, particularly after the death of her husband Pierre. Despite this being the time of the so-called 'beautiful years' in Europe, where there was a friendly exchange of ideas between scientists from various countries, there were also protracted disagreements. Some of the scientific findings of the Curies' daughter (Irene Joliot-Curie) and husband (Frederic Joliot-Curie) were vigorously disputed by Lisa Meitner (and colleague Otto Hahn) in Vienna. The 'beautiful years' came to an end when politics intruded and scientists such as Lisa Meitner had to flee from persecution. The splitting of the atom and realisation (by Leo Szilard) that a chain reaction was possible, led to political barriers being erected around scientists. With Europe poised for war, the implication of this science for warfare application was cause for concern among many of the normally free thinking and co-operative scientists. Secrecy now prevailed.
Twine, Rhian; Kahn, Kathleen; Scholtz, Alexandra; Norris, Shane A
When developing intervention research, it is important to explore issues from the community perspective. Interventions that promote adolescent health in South Africa are urgently needed, and Project Ntshembo ('hope') aims to improve the health of young women and their offspring in the Agincourt sub-district of rural northeast South Africa, actively using stakeholder involvement throughout the research process. This study aimed to determine adolescent health priorities according to key stakeholders, to align stakeholder and researcher priorities, and to form a stakeholder forum, which would be active throughout the intervention. Thirty-two stakeholders were purposefully identified as community members interested in the health of adolescents. An adapted Delphi incorporating face-to-face discussions, as well as participatory visualisation, was used in a series of three workshops. Consensus was determined through non-parametric analysis. Stakeholders and researchers agreed that peer pressure and lack of information, or having information but not acting on it, were the root causes of adolescent health problems. Pregnancy, HIV, school dropout, alcohol and drug abuse, not accessing health services, and unhealthy lifestyle (leading to obesity) were identified as priority adolescent health issues. A diagram was developed showing how these eight priorities relate to one another, which was useful in the development of the intervention. A stakeholder forum was founded, comprising 12 of the stakeholders involved in the stakeholder involvement process. The process brought researchers and stakeholders to consensus on the most important health issues facing adolescents, and a stakeholder forum was developed within which to address the issues. Stakeholder involvement as part of a research engagement strategy can be of mutual benefit to the researchers and the community in which the research is taking place.
Rennie, Stuart; Groves, Allison K; Hallfors, Denise Dion; Iritani, Bonita J; Odongo, Fredrick S; Luseno, Winnie K
Assessment of benefits is traditionally regarded as crucial to the ethical evaluation of research involving human participants. We conducted focus group discussions (FGDs) with health and other professionals engaged with adolescents, caregivers/parents, and adolescents in Siaya County, Kenya, to solicit opinions about appropriate ways of conducting HIV research with adolescents. Our data revealed that many focus group participants have a profoundly positive conception of participation in health research, including studies conferring seemingly few benefits. In this article, we identify and analyze five different but interrelated types of benefits as perceived by Kenyan adolescent and adult stakeholders in HIV research, and discuss their ethical significance. Our findings suggest that future empirical and conceptual research should concentrate on factors that may trigger researcher obligations to improve benefit perceptions among research participants.
Brandon, Anna R; Shivakumar, Geetha; Lee, Simon Craddock; Inrig, Stephen J; Sadler, John Z
To review the background of current ethical standards for the conduct of perinatal mental health research and describe the ethical challenges in this research domain. Current literature reflects a growing sentiment in the scientific community that having no information regarding the impact of psychiatric treatment on the mother and developing fetus/infant poses dangers that may exceed the risks involved in research. However, without sufficient consensus across the scientific community, both regulatory bodies and perinatal researchers find themselves without a framework for decision making that satisfactorily limits the risks and facilitates the benefits of participation of pregnant and lactating women in clinical research. Psychiatric research in perinatal mental health is critically important as it enables clinicians and patients to participate in informed decision-making concerning treatment for psychiatric disorders. Specific areas of concern include fetal safety, maternal risk, the therapeutic misconception, commercial interests, forensic/legal issues, the informed consent process, and study design. Developing guidelines that address ethical challenges and include the views and concerns of multiple stakeholders could improve the access of perinatal women to the benefits of participation in mental health research in addition to providing evidence-based mental healthcare for this subpopulation.
Development of a Decision Aid for Cardiopulmonary Resuscitation Involving Intensive Care Unit Patients' and Health Professionals' Participation Using User-Centered Design and a Wiki Platform for Rapid Prototyping: A Research Protocol
Heyland, Daren Keith; Ebell, Mark H; Dupuis, Audrey; Lavoie-Bérard, Carole-Anne; Légaré, France; Archambault, Patrick Michel
Background Cardiopulmonary resuscitation (CPR) is an intervention used in cases of cardiac arrest to revive patients whose heart has stopped. Because cardiac arrest can have potentially devastating outcomes such as severe neurological deficits even if CPR is performed, patients must be involved in determining in advance if they want CPR in the case of an unexpected arrest. Shared decision making (SDM) facilitates discussions about goals of care regarding CPR in intensive care units (ICUs). Patient decision aids (DAs) are proven to support the implementation of SDM. Many patient DAs about CPR exist, but they are not universally implemented in ICUs in part due to lack of context and cultural adaptation. Adaptation to local context is an important phase of implementing any type of knowledge tool such as patient DAs. User-centered design supported by a wiki platform to perform rapid prototyping has previously been successful in creating knowledge tools adapted to the needs of patients and health professionals (eg, asthma action plans). This project aims to explore how user-centered design and a wiki platform can support the adaptation of an existing DA for CPR to the local context. Objective The primary objective is to use an existing DA about CPR to create a wiki-based DA that is adapted to the context of a single ICU and tailorable to individual patient’s risk factors while employing user-centered design. The secondary objective is to document the use of a wiki platform for the adaptation of patient DAs. Methods This study will be conducted in a mixed surgical and medical ICU at Hôtel-Dieu de Lévis, Quebec, Canada. We plan to involve all 5 intensivists and recruit at least 20 alert and oriented patients admitted to the ICU and their family members if available. In the first phase of this study, we will observe 3 weeks of daily interactions between patients, families, intensivists, and other allied health professionals. We will specifically observe 5 dyads of
Vreeman, Rachel; Kamaara, Eunice; Kamanda, Allan; Ayuku, David; Nyandiko, Winstone; Atwoli, Lukoye; Ayaya, Samuel; Gisore, Peter; Scanlon, Michael; Braitstein, Paula
Involving vulnerable pediatric populations in international research requires culturally appropriate ethical protections. We sought to use mabaraza, traditional East African community assemblies, to understand how a community in western Kenya viewed participation of children in health research and informed consent and assent processes. Results from 108 participants revealed generally positive attitudes towards involving vulnerable children in research, largely because they assumed children would directly benefit. Consent from parents or guardians was understood as necessary for participation while gaining child assent was not. They felt other caregivers, community leaders, and even community assemblies could participate in the consent process. Community members believed research involving orphans and street children could benefit these vulnerable populations, but would require special processes for consent.
Hitchen, Sherrie; Watkins, Mary; Williamson, Graham R; Ambury, Susan; Bemrose, Gillian; Cook, David; Taylor, Maureen
The purpose of this paper is to describe learning gained from involving service users and carers as researchers in an action research study. The researchers aimed to introduce self-directed support in mental health services--part of the government's personalisation agenda, which requires a move from current social care commissioning, where a person is matched to available services, to one where a person self-assesses, has an agreed support plan and then with appropriate help, purchases his or her own services to lead as independent a life as possible. This development is allied closely with the mental health service recovery approach. Three service users and two carers were recruited to work alongside the lead researcher. Service users were fully involved in the steering group - part of participatory action research project. Data were collected from: debriefing meetings with co-researchers between April and December 2007; a group interview held by the lead researcher; and participants' journal comments and self-reflections. The main areas in which service users and carers found involvement difficult were: overcoming professional language barriers; emotional impact; and power imbalances between themselves and professionals. Findings suggest that considerable improvement is required by mental health professionals and managers if service users and carers are successfully involved in projects. This is a small study within a larger action research project. Findings are not generalisable owing to the small sample; however, findings are supported by the service-user involvement literature. Few studies explore participation effects on service users and carers from their perspective. This research provides insights into what needs to be addressed to improve service user and carer involvement to improve mental health services.
Swanberg, Jennifer E; Nichols, Helen M; Clouser, Jessica M; Check, Pietra; Edwards, Lori; Bush, Ashley M; Padilla, Yancy; Betz, Gail
We systematically reviewed the literature to describe how community health workers (CHWs) are involved in occupational health and safety research and to identify areas for future research and research practice strategies. We searched five electronic databases from July 2015 through July 2016. Inclusion criteria were as follows: (1) study took place in the United States, (2) published as a full peer-review manuscript in English, (3) conducted occupational health and safety research, and (4) CHWs were involved in the research. The majority of 17 included studies took place in the agriculture industry (76%). CHWs were often involved in study implementation/design and research participant contact. Rationale for CHW involvement in research was due to local connections/acceptance, existing knowledge/skills, communication ability, and access to participants. Barriers to CHW involvement in research included competing demands on CHWs, recruitment and training difficulties, problems about research rigor and issues with proper data collection. Involving CHWs in occupational health and safety research has potential for improving inclusion of diverse, vulnerable and geographically isolated populations. Further research is needed to assess the challenges and opportunities of involving CHWs in this research and to develop evidence-based training strategies to teach CHWs to be lay-health researchers.
This paper considers the role of ethics and ethics review processes in the development of health promotion quality assurance and evaluation activities involving human participants. The Australian National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research and associated documents provide the framework for the ethical conduct and independent review of research (including quality assurance and evaluation) involving humans in Australia. Identifying the level of risk to which participants may be exposed by participation in quality assurance and evaluation activities is essential for health promotion workers undertaking such activities. Organisations can establish processes other than review by a Human Research Ethics Committee for negligible and low risk research activities. Health promotion quality assurance and evaluation activities often involve negligible and low risk to participants. Seven triggers that indicate the need for ethics review of quality assurance and evaluation activities and a procedural checklist for developing ethical quality assurance and evaluation activities are provided. Health promotion workers should be familiar with the NHMRC's National Statement on Ethical Conduct in Human Research. When ethical considerations underpin the planning and conduct of all quality assurance and evaluation from the very beginning, the activity is the better for it, independent 'ethics approval' can mostly be secured without much trouble and workers' frustration levels are reduced. So what? Health promotion quality assurance and evaluation activities must be ethically justified. Health promotion workers should be familiar with the NHMRC's National Statement on Ethical Conduct in Human Research and should use it when developing health promotion quality assurance and evaluation activities.
Dec 1, 2017 ... CIOMS International Ethical Guidelines for Biomedical Research Involving ... mention of public health in relation to social value. • The new guideline 7, .... reports, can be obtained from conventional media sources such as.
Song, Hui; Li, Vivian; Gillespie, Suzanne; Laws, Reesa; Massimino, Stefan; Nelson, Christine; Singal, Robbie; Wagaw, Fikirte; Jester, Michelle; Weir, Rosy Chang
The mission of the Community Health Applied Research Network (CHARN) is to build capacity to carry out Patient-Centered Outcomes Research at community health centers (CHCs), with the ultimate goal to improve health care for vulnerable populations. The CHARN Needs Assessment Staff Survey investigates CHCs' involvement in research, as well as their need for research training and resources. Results will be used to guide future training. The survey was developed and implemented in partnership with CHARN CHCs. Data were collected across CHARN CHCs. Data analysis and reports were conducted by the CHARN data coordinating center (DCC). Survey results highlighted gaps in staff research training, and these gaps varied by staff role. There is considerable variation in research involvement, partnerships, and focus both within and across CHCs. Development of training programs to increase research capacity should be tailored to address the specific needs and roles of staff involved in research.
Almeida, Cristiane Andrea Locatelli de; Tanaka, Oswaldo Yoshimi
To analyze scopes and limits of the use of participatory methodology of evaluation with municipal health managers and administrators. Qualitative research with health policymakers and managers of the Comissão Intergestores Regional (CIR - Regional Interagency Commission) of a health region of the state of Sao Paulo in Brazil. Representatives from seven member cities participated in seven workshops facilitated by the researchers, with the aim of assessing a specific problem of the care line, which would be used as a tracer of the system integrality. The analysis of the collected empirical material was based on the hermeneutic-dialectic methodology and aimed at the evaluation of the applied participatory methodology, according to its capacity of promoting a process of assessment capable to be used as a support for municipal management. With the participatory approach of evaluation, we were able to promote in-depth discussions with the group, especially related to the construction of integral care and to the inclusion of the user's perspective in decision-making, linked to the search for solution to concrete problems of managers. By joint exploration, the possibility of using data from electronic information systems was opened, as well as information coming directly from the users of the services, to enhance discussions and negotiations between partners. The participants were disbelievers of the replication potential of this type of evaluation without the direct monitoring of the academy, given the difficulty of organizing the process in everyday life, already taken by emergency and political issues. Evaluations of programs and services carried out within the Regional Interagency Commission, starting from the local interest and facilitating the involvement of its members by the use of participatory methodologies, can contribute to the construction of integral care. To the extent that the act of evaluating stay invested with greater significance to the local actors
Decision making with respect to safety is becoming more and more complex. The risk involved must be taken into account together with numerous other factors such as the benefits, the uncertainties and the public perception. Can the decision maker be aided by some kind of system, general rules of thumb, or broader perspective on similar decisions? This question has been addressed in a joint Nordic project relating to nuclear power. Modern techniques for risk assessment and management have been studied and parallels drawn to such areas as offshore safety and management of genotoxic chemicals in the environment. The topics include synoptic vs. incrementalistic approaches to decision making, health hazards from radiation and genotoxic chemicals, value judgments in decision making, definitions of low risks, risk comparisons, and principles for decision making when risks are involved. (author) 47 refs
Full Text Available Objectives. To report on a participatory research process in southwest Alaska focusing on youth involvement as a means to facilitate health promotion. We propose youth-guided community-based participatory research (CBPR as way to involve young people in health promotion and prevention strategizing as part of translational science practice at the community-level. Study design. We utilized a CBPR approach that allowed youth to contribute at all stages. Methods. Implementation of the CBPR approach involved the advancement of three key strategies including: (a the local steering committee made up of youth, tribal leaders, and elders, (b youth-researcher partnerships, and (c youth action-groups to translate findings. Results. The addition of a local youth-action and translation group to the CBPR process in the southwest Alaska site represents an innovative strategy for disseminating findings to youth from a research project that focuses on youth resilience and wellbeing. This strategy drew from two community-based action activities: (a being useful by helping elders and (b being proud of our village. Conclusions. In our study, youth informed the research process at every stage, but most significantly youth guided the translation and application of the research findings at the community level. Findings from the research project were translated by youth into serviceable action in the community where they live. The research created an experience for youth to spend time engaged in activities that, from their perspectives, are important and contribute to their wellbeing and healthy living. Youth-guided CBPR meant involving youth in the process of not only understanding the research process but living through it as well.
Full Text Available The goal of this study was to establish the understanding and appreciation of the essence of PHC principles in the two Primary Health Care (PHC communities. The PHC communities in this study referred to the people who were involved in the operation of the phenomenon, that is health professionals working in the health care centers and the communities served by these health care centers. It was hoped that the study would enhance the understanding of the importance of community involvement in health (CIH in health care delivery, for both community members and health professionals. A case study method was used to conduct the study. Two community health centers in the Ethekwini health district, in Kwa Zulu Natal, were studied. One health center was urban based, the other was rural based. A sample of 31 participants participated in the study. The sample comprised of 8 registered nurses, 2 enrolled nurses, 13 community members and 8 community health workers. Data was collected using individual interviews and focus groups, and was guided by the case study protocol. The findings of the study revealed that in both communities, participants had different, albeit complementary, understanding of the term ‘Community Involvement in Health’ (CIH. Essentially, for these participants, CIH meant collaboration, co-operation and involvement in decision-making.
A basic problem in dental health education (DHE) is that the effect usually disappears shortly after the termination of a program. The purpose of the present study was to obtain long-term effect of a DHE-program by emphasizing the active involvement of the participants. The sample comprised...... an experimental and a control group, each of 68 unskilled workers, aged 18-64. Active participation was obtained by various means: Teaching was carried out in pre-existing peer groups, the participants' own goals and needs were included, the traditional dentist-patient barriers were excluded, the traditional...
Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert
People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.
Harris, Katherine M; Edlund, Mark J; Larson, Sharon L
Objectives To examine the association between religious involvement and mental health care use by adults age 18 or older with mental health problems. Methods We used data from the 2001–2003 National Surveys on Drug Use and Health. We defined two subgroups with moderate (n=49,902) and serious mental or emotional distress (n=14,548). For each subgroup, we estimated a series of bivariate probit models of past year use of outpatient care and prescription medications using indicators of the frequency of religious service attendance and two measures of the strength and influence of religious beliefs as independent variables. Covariates included common Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, disorders symptoms, substance use and related disorders, self-rated health status, and sociodemographic characteristics. Results Among those with moderate distress, we found some evidence of a positive relationship between religious service attendance and outpatient mental health care use and of a negative relationship between the importance of religious beliefs and outpatient use. Among those with serious distress, use of outpatient care and medication was more strongly associated with service attendance and with the importance of religious beliefs. By contrast, we found a negative association between outpatient use and the influence of religious beliefs on decisions. Conclusion The positive relationship between religious service participation and service use for those with serious distress suggests that policy initiatives aimed at increasing the timely and appropriate use of mental health care may be able to build upon structures and referral processes that currently exist in many religious organizations. PMID:16584455
Truman, Carole; Raine, Pamela
With an increased interest in and policy commitment to involving service users in the planning and delivery of health service provision, there is a clear need to explore both the rhetoric and realities of what user involvement entails. In the present paper, by drawing upon an evaluation of a community-based exercise facility for people with mental health problems, the authors explore ways in which the reality of user involvement is subject to a range of configurations within health services. The paper describes a piece of qualitative research that was undertaken within a participatory framework to explore the nature of user involvement within the facility. The data have been analysed using a grounded theory approach to provide insights into: the organisational context in which user involvement takes place; factors which encourage meaningful participation on the part of service users; perceived barriers to user involvement; and issues of sustainability and continuity. This research approach has enabled the authors to explore the views and experiences of users, service providers and referral agencies in relation to the nature and potential for user involvement. The findings illustrate ways in which user involvement may take place under both flexible and formal arrangements across a variety of activities. The present paper provides an account of some of the meanings and experiences of what 'successful' user participation may involve and the conditions which underpin 'success'. The authors conclude that successful and meaningful user involvement should enable and support users to recognise their existing skills, and to develop new ones, at a pace that suits their particular circumstances and personal resources. This process may require adaptation not only by organisations, but also by service providers and non-involved users.
Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F
The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.
Pearl, Gill; Cruice, Madeline
People with aphasia can be marginalized by a communicatively inaccessible society. Compounding this problem, routinized exclusion from stroke research leads to bias in the evidence base and subsequent inequalities in service provision. Within the United Kingdom, the Clinical Research Network of the National Institute of Health identified this…
Huang, Z; Ning, P S; Cheng, P X; Hu, G Q
With the rapid development of mobile communication technology and the growing popularity of smartphones worldwide, mobile health has become an extension of e-Health and Tele-Health, and is of value in the research and practice of public health. In this paper, we systematically assessed research literature of mobile health' s application on disease prevention and control as well as health promotion. Based on the characteristics of current literature, this paper focused on the application of mobile health in maternal health promotion, chronic disease management, and communicable disease prevention and control to provide reference for the mobile health intervention research in China.
Full Text Available Abstract Background Patient and public involvement (PPI is framed as positive for individuals, the health system, public health, as well as for communities and society as a whole. We investigated whether preferences for PPI differed between two countries with Beveridge type health systems–Sweden and England. We measured willingness to be involved in individual treatment decisions and in decisions about the organization and provision of local health and social care services. Methods This was a comparative cross-sectional study of the general population’s preferences. Together, the two samples included 3125 respondents; 1625 in England and 1500 in Sweden. Country differences were analysed in a multinomial regression model controlling for gender, age and educational attainment. Results Overall, 68% of respondents wanted a passive patient role and 44% wanted to be involved in local decisions about organization and provision of services. In comparison with in Sweden, they were in England less likely to want a health professional such as a GP or consultant to make decisions about their treatment and also more likely to want to make their own decisions. They were also less likely to want to be involved in local service development decisions. An increased likelihood of wanting to be involved in organizational decision-making was associated with individuals wanting to make their own treatment decisions. Women were less likely to want health professionals to make decisions and more likely to want to be involved in organizational decisions. Conclusions An effective health system that ensures public health must integrate an effective approach to PPI both in individual treatment decisions and shaping local health and social care priorities. To be effective, involvement activities must take in to account the variation in the desire for involvement and the implications that this has for equity. More work is needed to understand the relationship between the
Aug 7, 2013 ... IDRC is one of the world's leaders in generang new knowledge to meet global challenges. We offer a number of research awards providing a unique opportunity to enhance research skills and gain a fresh perspecve on crucial development issues. These one‐year, paid, in‐house programs of training and ...
Ethical Medical and Biomedical Practice in Health Research in Africa. African countries have an urgent need for research to battle the diseases that ravage their populations and hamper their economic and social development. This research entails both benefits and risks for the people involved. Particular effort must be ...
Eidhammer, Gunnar; Fluttert, Frans A J; Bjørkly, Stål
To examine empirical literature on user involvement in collaboration between patients and nurses. The scope of the review was limited to structured violence risk management interventions in forensic mental health settings. Violence in forensic mental health settings represents a significant problem for patients and staff. Structured violence risk management interventions in forensic mental health have been reported to ignore patient participation, despite the growing attention on user involvement in clinical practice. A systematic review. Searches were conducted in six databases: the Cochrane Systematic Reviews, MEDLINE, CINAHL, ProQuest, ScienceDirect and PsycINFO. Papers were assessed according to a predetermined set of inclusion and exclusion criteria. After searches of the reference lists of retrieved articles were conducted, only three papers met the inclusion criteria. This review has shown that empirical research on the topic of risk management interventions in which patients are involved is scarce. There is barely any research evidence of the clinical effect of user involvement approaches on violence risk management in forensic mental health practice. Therefore, we suggest that clinicians may learn from positive experiences concerning user involvement in general psychiatry and carefully adapt and test them out in the forensic treatment context. © 2014 John Wiley & Sons Ltd.
Vieira Netto, Moysés Francisco; Deslandes, Suely Ferreira
The Family Health Strategy (FHS) has an acknowledged potential for the promotion of health and the prevention of violence. This is an integrative bibliographic review with the aim of evaluating the performance of FHS professionals in tackling and preventing violence involving adolescents. It is an integrative review of dissertations and theses on healthcare published from 1994 to 2014. The collection of 17 dissertations and 2 doctoral theses reveals that these studies are recent. The FHS professionals acknowledge the vulnerability of adolescents to inflicting and being subject to violence, however the FHS proves ineffective in tackling and preventing such violence. The predominance of the medical technical care model, the deficiencies in Public Health education in professional training and the lack of institutional support are seen as the main obstacles. Many of these professionals are unaware of the files for notification of violence. The existence of family violence and criminal groups were the aspects most mentioned in the territories. The social representation of adolescents as being "problematic" and the lack of ESF actions that promote an increase youth leadership and empowerment were clearly detected.
Salway, Sarah; Chowbey, Punita; Such, Elizabeth; Ferguson, Beverly
Public health research sometimes uses members of communities as researchers. These are called Community Researchers. The advantage of using Community Researchers is that it enables people who live in communities to participate in research by designing the research, gathering data and being involved in analysis. This 'participatory' approach also has the potential to reach communities that might otherwise not be included in research. There are few studies that report the experiences of Community Researchers who take part in such research. This study helps fill this gap by exploring the issues and challenges faced by Community Researchers involved in a study of health and poverty in ethnically mixed areas of east London, UK. Through the accounts of 12 researchers, the study reveals that being a community 'insider' had advantages: many felt they had been able to gain the trust of respondents and access people for the research that would have otherwise been missed. The role of Community Researcher was, however, difficult to manage with some researchers feeling burdened by their role and the increased knowledge they had about the lives of those in their community. In addition to the personal challenges for the Community Researchers, the findings raise various ethical and methodological issues that need consideration in participatory research. Background Inclusive research approaches are increasingly employed by public health researchers. Recent methodological development includes the engagement of Community Researchers (CRs), who use their knowledge and networks to facilitate research with the community with which they identify. Few studies have explored the experiences of CRs in the research process, an important element of any comprehensive assessment of the pros and cons of such research endeavours. We report here on the experiences of CRs engaged in a study of health inequalities and poverty in ethnically diverse and disadvantaged areas of London, UK. Methods We
Office 2004 Test Drive User
goals and work in one of IDRC's dynamic program or division teams. IDRC's Maternal and Child Health program supports research that seeks to address health ... Interrelationships and root causes of poor health outcomes and dysfunctional ...
V?zquez Navarrete, M. Luisa
Introduction Research in the area of health has been traditionally dominated by quantitative research. However, the complexity of ill-health, which is socially constructed by individuals, health personnel and health authorities have motivated the search for other forms to approach knowledge. Aim To discuss the complementarities of qualitative and quantitative research methods in the generation of knowledge. Contents The purpose of quantitative research is to measure the magnitude of an event,...
Gollin, Lisa X; Harrigan, Rosanne C; Calderón, José L; Perez, John; Easa, David
Investigate the barriers to participation in medical research that involves Asian and Pacific Islander (API) populations in Hawai'i. Fifty people (27 Filipinos, 23 Hawaiian/Pacific Islanders) in five different communities on Oahu. Nine focus groups with an ethnically matched moderator were held to explore people's feelings, problems, and recommendations regarding medical research. Sessions were audiotaped, transcribed, and qualitatively analyzed with the constant comparison method. Only 12% of study participants said that they absolutely would not participate in a clinical study. Most agreed that research is vital. Filipino participants were more optimistic about the safety and value of joining in medical research. Hawaiian groups were more hesitant and fearful. Reasons for nonparticipation included negative feelings about the purpose and intent of clinical trials and language and cultural barriers. Suggestions on how to encourage API populations to participate in research investigations included improving peoples' understanding of the benefits to family and community. Hawaiian and Filipino groups differed only slightly in their assessments of the type of research needed in their communities. Recruitment campaigns must improve people's awareness of the process of informed consent, research safeguards, and benefits to family and community. Attention should focus on K-12 health education to use members of the younger generations to access and educate elders, involving persons with medical research experience as a recruitment resource, returning results to study participants, and increasing the number of healthcare professionals and researchers that are culturally and linguistically matched to the community.
Full Text Available Even though it is considered a 21st century term, translational research has been present for much longer. Idea of translating experimental discovery to its’ clinical application and use is old as research itself. However, it is the understanding of missing links between the basic science research and clinical research that emerged in the past decade and mobilized scientific and clinical communities and organizations worldwide. Hence term, translational research, which represents an “enterprise of harnessing knowledge from basic sciences to produce new drugs, devices, and treatment options for patients” (1. It has been also characterized as “effective translation of the new knowledge, mechanisms, and techniques generated by advances in basic science research into new approaches for prevention, diagnosis, and treatment of disease, which is essential for improving health” (2.This translation is a complex process and involves more than one step for transfer of research knowledge. At least 3 such roadblocks have been identified (Figure 1 ; T1 translation: “The transfer of new understandings of disease mechanisms gained in the laboratory into the development of new methods for diagnosis, therapy, and prevention and their first testing in humans”, T2 translation: “The translation of results from clinical studies into everyday clinical practice and health decision making”, and T3 translation: “Practice-based research, which is often necessary before distilled knowledge (e.g., systematic reviews, guidelines can be implemented in practice” (3-5.The international research community rapidly recognized importance for promotion of translational research and made it their priority(5. In the USA, National Institutes of Health, (NIH expects to fund 60 translational research centers with a budget of $500 million per year by 2012 (6. Besides academic centers, foundations, industry, disease-related organizations, and individual hospitals and
Building National Health Research Information Systems (COHRED). This grant will allow the Council on Health Research for Development (COHRED) to create, host and maintain a web-based resource on national health research in low- and middle-income countries in partnership with institutions in the South. Called ...
Pérez Jolles, Mónica; Martinez, Maria; Garcia, San Juanita; Stein, Gabriela L; Thomas, Kathleen C
Comparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence-based information to make better health-care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators. The purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation). Researchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results. Mentor parents' contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies. Mentor parents' guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Ross, Joseph S
The International Committee of Medical Journal Editors (ICMJE) recently announced a bold step forward to require data generated by interventional clinical trials that are published in its member journals to be responsibly shared with external investigators. The movement toward a clinical research culture that supports data sharing has important implications for the design, conduct, and reporting of systematic reviews and meta-analyses. While data sharing is likely to enhance the science of evidence synthesis, facilitating the identification and inclusion of all relevant research, it will also pose key challenges, such as requiring broader search strategies and more thorough scrutiny of identified research. Furthermore, the adoption of data sharing initiatives by the clinical research community should challenge the community of researchers involved in evidence synthesis to follow suit, including the widespread adoption of systematic review registration, results reporting, and data sharing, to promote transparency and enhance the integrity of the research process.
Abstract Objective This study compares the process and outcomes of two approaches to engaging mental health (MH) service users in the quality assurance (QA) process. Background QA plays a significant role in health and care services, including those delivered in the voluntary sector. The importance of actively, rather than passively, involving service users in evaluation and service development has been increasingly recognized during the last decade. Design This retrospective small‐scale study uses document analysis to compare two QA reviews of a MH Day Centre, one that took place in 1998 as a traditional inspection‐type event and one that took place in 2000 as a collaborative process with a user‐led QA agenda. Setting and participants The project was undertaken with staff, volunteers and service users in a voluntary sector MH Day Centre. Intervention The study compares the management, style, evaluation tools and service user responses for the two reviews; it considers staff perspectives and discusses the implications of a collaborative, user‐led QA process for service development. Results The first traditional top–down inspection‐type QA event had less ownership from service users and staff and served the main purpose of demonstrating that services met organizational standards. The second review, undertaken collaboratively with a user‐led agenda focused on different priorities, evolving a new approach to seeking users’ views and achieving a higher response rate. Conclusions Because both users and staff had participated in most aspects of the second review they were more willing to work together and action plan to improve the service. It is suggested that the process contributed to an evolving ethos of more effective quality improvement and user involvement within the organization. PMID:16677189
Storm, Marianne; Edwards, Adrian
Patient-centered care, shared decision-making, patient participation and the recovery model are models of care which incorporate user involvement and patients' perspectives on their treatment and care. The aims of this paper are to examine these different care models and their association with user involvement in the mental health context and discuss some of the challenges associated with their implementation. The sources used are health policy documents and published literature and research on patient-centered care, shared decision-making, patient participation and recovery. The policy documents advocate that mental health services should be oriented towards patients' or users' needs, participation and involvement. These policies also emphasize recovery and integration of people with mental disorders in the community. However, these collaborative care models have generally been subject to limited empirical research about effectiveness. There are also challenges to implementation of the models in inpatient care. What evidence there is indicates tensions between patients' and providers' perspectives on treatment and care. There are issues related to risk and the person's capacity for user involvement, and concerns about what role patients themselves wish to play in decision-making. Lack of competence and awareness among providers are further issues. Further work on training, evaluation and implementation is needed to ensure that inpatient mental health services are adapting user oriented care models at all levels of services.
Tambuyzer, Else; Van Audenhove, Chantal
Patients increasingly assume active roles in their mental health care. While there is a growing interest in patient involvement and patient-reported outcomes, there is insufficient research on the outcomes of patient involvement. The research questions in this study are as follows: 'To what extent is perceived patient involvement associated with satisfaction and empowerment?'; 'What is the nature of the relationship between satisfaction and empowerment?'; and 'To what extent are background variables associated with satisfaction and empowerment?'. We assumed that a higher degree of patient involvement is associated with higher satisfaction and empowerment scores and that satisfaction and empowerment are positively associated. Data were gathered using surveys of 111 patients of 36 multidisciplinary care networks for persons with serious and persistent mental illness. Demographic characteristics, patient involvement and satisfaction were measured using a new questionnaire. Empowerment was assessed using the Dutch Empowerment Scale. Descriptive, univariate (Pearson's r and independent-samples t-tests), multivariate (hierarchical forced entry regression) and mixed-model analyses were conducted. The hypotheses of positive associations between patient involvement, satisfaction and empowerment are confirmed. The demographics are not significantly related to satisfaction or empowerment, except for gender. Men reported higher empowerment scores than did women. Making patient involvement a reality is more than just an ethical imperative. It provides an opportunity to enhance patient-reported outcomes such as satisfaction and empowerment. Future research should focus on the nature of the association between satisfaction and empowerment. © 2013 John Wiley & Sons Ltd.
Hunt, Matthew; Schwartz, Lisa; Pringle, John; Boulanger, Renaud; Nouvet, Elysée; O'Mathúna, Dónal; Arya, Neil; Bernard, Carrie; Beukeboom, Carolyn; Calain, Philippe; de Laat, Sonya; Eckenwiler, Lisa; Elit, Laurie; Fraser, Veronique; Gillespie, Leigh-Anne; Johnson, Kirsten; Meagher, Rachel; Nixon, Stephanie; Olivier, Catherine; Pakes, Barry; Redwood-Campbell, Lynda; Reis, Andreas; Renaldi, Teuku; Singh, Jerome; Smith, Maxwell; Von Schreeb, Johan
This paper maps key research questions for humanitarian health ethics: the ethical dimensions of healthcare provision and public health activities during international responses to situations of humanitarian crisis. Development of this research agenda was initiated at the Humanitarian Health Ethics Forum (HHE Forum) convened in Hamilton, Canada in November 2012. The HHE Forum identified priority avenues for advancing policy and practice for ethics in humanitarian health action. The main topic areas examined were: experiences and perceptions of humanitarian health ethics; training and professional development initiatives for humanitarian health ethics; ethics support for humanitarian health workers; impact of policies and project structures on humanitarian health ethics; and theoretical frameworks and ethics lenses. Key research questions for each topic area are presented, as well as proposed strategies for advancing this research agenda. Pursuing the research agenda will help strengthen the ethical foundations of humanitarian health action. PMID:25687273
Walker, Sarah Cusworth; Bishop, Asia S; Pullmann, Michael D; Bauer, Grace
Family involvement is recognized as a critical element of service planning for children's mental health, welfare and education. For the juvenile justice system, however, parents' roles in this system are complex due to youths' legal rights, public safety, a process which can legally position parents as plaintiffs, and a historical legacy of blaming parents for youth indiscretions. Three recent national surveys of juvenile justice-involved parents reveal that the current paradigm elicits feelings of stress, shame and distrust among parents and is likely leading to worse outcomes for youth, families and communities. While research on the impact of family involvement in the justice system is starting to emerge, the field currently has no organizing framework to guide a research agenda, interpret outcomes or translate findings for practitioners. We propose a research framework for family involvement that is informed by a comprehensive review and content analysis of current, published arguments for family involvement in juvenile justice along with a synthesis of family involvement efforts in other child-serving systems. In this model, family involvement is presented as an ascending, ordinal concept beginning with (1) exclusion, and moving toward climates characterized by (2) information-giving, (3) information-eliciting and (4) full, decision-making partnerships. Specific examples of how courts and facilities might align with these levels are described. Further, the model makes predictions for how involvement will impact outcomes at multiple levels with applications for other child-serving systems.
The journal is devoted to the promotion of health sciences and related disciplines ... women of African and Asian ancestry were also transported from their home countries to. America to work. Movement from ... barriers to health care utilization.
Jorge, Maria Salete Bessa; Pinto, Diego Muniz; Quinderé, Paulo Henrique Dias; Pinto, Antonio Germane Alves; Sousa, Fernando Sérgio Pereira de; Cavalcante, Cinthia Mendonça
Healthcare relations serve as efficient devices for the promotion of mental health and the development of comprehensive practices. This study seeks to analyze the measures that make mental healthcare possible in the daily operations of a Psychosocial Healthcare Center (CAPS). It is qualitative research adopting a critical and reflexive approach conducted in CAPS in the municipality of Sobral in the State of Ceará. Complying with regulations, the study was submitted for analysis by the Committee for Ethics in Research adhering to norms for research involving human beings. For data gathering, conducted between May and July 2008, semi-structured and systematic observation interview techniques were used. The research subjects involved 20 people, distributed into three groups: group I (mental health workers-8); group II (users-7) and group III (relatives of users-5). The material was organized and analyzed using principles of critical hermeneutics. According to the results, in the daily operations of CAPS, the relations of care and its devices (reception, emotional involvement, co-responsibility and autonomy) make the transversal adaptation of psychosocial practices possible. The dialogues were derived from meetings of mental health workers, users and relatives in their quest for healthcare solutions.
Tariq, S.; Woodman, J.
Mixed methods research is the use of quantitative and qualitative methods in a single study or series of studies. It is an emergent methodology which is increasingly used by health researchers, especially within health services research. There is a growing literature on the theory, design and critical appraisal of mixed methods research. However, there are few papers that summarize this methodological approach for health practitioners who wish to conduct or critically engage with mixed method...
Flouri, Eirini; Buchanan, Ann
Explores links between father involvement at age 7 and emotional and behavioral problems at age 16, and between father involvement at age 16 and psychological distress at age 33. Father involvement at age 7 protected against psychological maladjustment in adolescents from non-intact families, and father involvement at age 16 protected against…
Kumar, Maya M; Nisenbaum, Rosane; Barozzino, Tony; Sgro, Michael; Bonifacio, Herbert J; Maguire, Jonathon L
Street-involved youth (SIY) carry a disproportionate burden of sexually transmitted diseases (STD). Studies among adults suggest that improving housing stability may be an effective primary prevention strategy for improving sexual health. Housing options available to SIY offer varying degrees of stability and adult supervision. This study investigated whether housing options offering more stability and adult supervision are associated with fewer STD and related risk behaviors among SIY. A cross-sectional study was performed using public health survey and laboratory data collected from Toronto SIY in 2010. Three exposure categories were defined a priori based on housing situation: (1) stable and supervised housing, (2) stable and unsupervised housing, and (3) unstable and unsupervised housing. Multivariate logistic regression was used to test the association between housing category and current or recent STD. Secondary analyses were performed using the following secondary outcomes: blood-borne infection, recent binge-drinking, and recent high-risk sexual behavior. The final analysis included 184 SIY. Of these, 28.8 % had a current or recent STD. Housing situation was stable and supervised for 12.5 %, stable and unsupervised for 46.2 %, and unstable and unsupervised for 41.3 %. Compared to stable and supervised housing, there was no significant association between current or recent STD among stable and unsupervised housing or unstable and unsupervised housing. There was no significant association between housing category and risk of blood-borne infection, binge-drinking, or high-risk sexual behavior. Although we did not demonstrate a significant association between stable and supervised housing and lower STD risk, our incorporation of both housing stability and adult supervision into a priori defined exposure groups may inform future studies of housing-related prevention strategies among SIY. Multi-modal interventions beyond housing alone may also be required to
Research interventions to expand the scope of the farmers have shown that greater efficiency of land utilization is exhibited. New areas of research for the evaluation, as well as suggests consideration for intercropping with fruit trees are suggested. The current challenges to fruit production were also identified, while the ...
Baxter, Susan; Muir, Delia; Brereton, Louise; Allmark, Christine; Barber, Rosemary; Harris, Lydia; Hodges, Brian; Khan, Samaira; Baird, Wendy
The National Institute for Health Research (NIHR) Research Design Service (RDS) for Yorkshire and Humber has been running a public involvement funding scheme since 2008. This scheme awards researchers a small amount of money to help them get involvement from patients and/or the public. Involvement activities take place at the time when researchers are planning studies, and when they are completing application forms to request funding for a proposed research project. After the public involvement activities researchers are asked to write a report for the RDS describing what they did with the public involvement funding. This study analysed those reports using an approach which included members of a public involvement panel in the data analysis process. The aim of the work was to see what the views and experiences of researchers who received funding were, and what might be learned for the future of the scheme. Twenty five reports were analysed. Four main themes were identified, these described: the added value of public involvement; aspects to consider when planning and designing public involvement; different roles of public contributors; and aspects of valuing public member contributions. The group approach to analysis was successful in enabling involvement of a variety of individuals in the process. The findings of the study provide evidence of the value of public involvement during the development of applications for research funding. The results also indicate that researchers recognise the variety in potential roles for the public in research, and acknowledge how involvement adds value to studies. Background A regional Research Design Service, funded by the National Institute for Health Research, introduced a small grant in 2008, to support public involvement (often known as patient and public involvement [PPI]) activities during the development of applications for research funding. Successful applicants are requested to submit a report detailing how the grant
, scientific writing and information literacy to make fair and accurate critique. As mentioned earlier, health researches are involved in the human health, so paying attention to their quality is necessary. Therefore, it is suggested that medical universities and centers of information production should hold writing critique workshop for researchers, set up critique journals, and encourage the researchers to publish reviews and focus on their training and research programs.
Bjerregaard, Peter; Curtis, Tine
research. Two health surveys have been carried out in Greenland by the National Institute of Public Health, and a follow-up is being planned together with the Directorate of Health. The results have been widely used by politicians, administrators, and health care professionals.......In 1992, the Greenland Home Rule Government took over the responsibility for health care. There has since been a growing cooperation between the Directorate of Health and researchers in Denmark and Greenland, for instance by the Directorate supporting workshops and funding a chair in health...
Litva, Andrea; Coast, Joanna; Donovan, Jenny; Eyles, John; Shepherd, Michael; Tacchi, Jo; Abelson, Julia; Morgan, Kieran
There are a number of impulses towards public participation in health care decision making including instrumentalist, communitarian, educative and expressive impulses and the desire for increased accountability. There has, however, been little research looking systematically at the public's preferences for being involved in particular types of rationing decisions, nor indeed, has there been a critical examination of the degree of involvement desired by the public. The research reported here uses findings from focus groups and in-depth interviews to explore these questions. Eight focus groups were conducted with a total of 57 informants, four amongst randomly selected members of the public and four with informants from health and non-health related organisations. Nineteen interviews were conducted to allow the elaboration of focus group comments, to probe views more deeply and to pursue emerging themes. The findings show variations in the willingness of members of the public to be involved in health care decisions and consistency across the different forms of the public as represented by the focus groups with randomly selected citizens and pre-existing organisations. There was a strong desire in all the groups for the public to be involved both at the system and programme levels, with much less willingness to be involved at the individual level. At the system and programme levels informants generally favoured consultation, without responsibility for decisions, but with the guarantee that their contribution would be heard and that decisions taken following consultation would be explained. At the patient level informants felt that the public should participate only by setting criteria for deciding between potential beneficiaries of treatment. The public has much to contribute, particularly at the system and programme levels, to supplement the inputs of health care professionals.
... 21 Food and Drugs 1 2010-04-01 2010-04-01 false Expedited review procedures for certain kinds of research involving no more than minimal risk, and for minor changes in approved research. 56.110 Section 56.110 Food and Drugs FOOD AND DRUG ADMINISTRATION, DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL...
research , including a Business Cell; 87 Research Development, 88 Research Oversight, 89 and Research Compliance offices;90 and the Center...needed for DHP medical research , such as the Army’s Clinical and Translational Research Program Office, 38 the Navy’s Research Methods Training Program... research stated, “key infrastructure for a learning health system will encompass three core elements: data networks, methods , and workforce.” 221
Thoft, Diana Schack
Involving people with early-stage dementia in qualitative research about their lifeworld perspectives......Involving people with early-stage dementia in qualitative research about their lifeworld perspectives...
(27.9%) and 17.0% for general/teaching hospitals and only. 12.3% for primary ... and that within the public sector, the higher levels of health facilities are ... health facilities attributed mostly to issues of easy access ..... and tertiary education.
Dec 2, 2014 ... Home · Resources · Publications ... A new publication, Participatory Action Research in Health Systems: a methods ... organizations, most African countries adopted direct payment for health services as the primary means.
Ringsberg, Karin C
The Nordic Health Promotion Research Network (NHPRN) was established in 2007 at the Nordic School of Public Health (NHV). This article aims to describe the foundation of the NHPRN, the development and the present status of the work of NHPRN. The NHPRN consists of about 50 senior and junior researchers from all Nordic countries. It is a working network that aims to develop the theoretical understanding of health promotion, to create research cooperation in health promotion from a Nordic perspective and to extend the scope of health promotion through education. Network members meet biannually to discuss and further develop research within the field and are also responsible for the Nordic conference on Health Promotion, organized every 3 years. The NHV hosted the network between 2007 and 2014; and the World Health Organisation (WHO) will assume this role in 2015. © 2015 the Nordic Societies of Public Health.
Davis, Dena S
As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) the creation of cohorts of 'study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants' welfare if the information is obtained by insurance companies or long-term care providers; (5) the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Jensen, Olaf Chresten
. The area is regulated by international standards based on international research-based knowledge on health and safety. Moreover, many of the world's seafarers come from developing countries with specific disease problems like HIV and no possibility of independent maritime health research. The international......The new ILO-2006-convention and the EU Commission's strategic objectives for the EU maritime transport policy 2008-2018, mentions the necessity of a modern health and safety system for maritime transportation. However, there is no specific strategy for the development of maritime health and safety...... maritime health research is sparse, and an increase in such research is necessary to help benefit needed shipping as a highly globalized industry. This paper presents an example of such research, accompanied by a discussion of methods and opportunities to increase international maritime health research....
Dai, Zheng; Ómarsson, Ólafur
With changing times, new technologies and more opinionated consumers, the modern industrial designer has found himself in need of fresher and more up to date approaches in his daily work. In a fast moving industry, the designer needs to keep a thinking process of dynamic and subjective attitude...... will give the grounding for believing that the industrial designer needs to adopt user research methods to a level where he can still continue to work under the very nature of industrial design that has made it a successful practice for the last century. The combing of the approaches and attitude will help....... User research is part of user centered design (UCD). UCD has a reputation for subjective and reflective practice. In this paper there are two example cases. One is conducted by a classical industrial design process, and another is costing half of energy and time in user research. These examples...
Goggins, Kathryn M; Wallston, Kenneth A; Nwosu, Samuel; Schildcrout, Jonathan S; Castel, Liana; Kripalani, Sunil
Little research has examined the association of health literacy and numeracy with patients' preferred involvement in the problem-solving and decision-making process in the hospital. Using a sample of 1,249 patients hospitalized with cardiovascular disease from the Vanderbilt Inpatient Cohort Study (VICS), we assessed patients' preferred level of involvement using responses to two scenarios of differing symptom severity from the Problem-Solving Decision-Making Scale. Using multivariable modeling, we determined the relationship of health literacy, subjective numeracy, and other patient characteristics with preferences for involvement in decisions, and how this differed by scenario. The authors found that patients with higher levels of health literacy desired more participation in the problem-solving and decision-making process, as did patients with higher subjective numeracy skills, greater educational attainment, female gender, less perceived social support, or greater health care system distrust (pparticipate more in the decision-making process when the hypothetical symptom they were experiencing was less severe (i.e., they deferred more to their physician when the hypothetical symptom was more severe). These findings underscore the role that patient characteristics, especially health literacy and numeracy, play in decisional preferences among hospitalized patients.
This paper discusses the need for the Society of Toxicology (SOT) to develop a policy for ethical research in humans, and a review for publication of these studies. Observations on human beings have been the foundation upon which toxicologic knowledge has been built since the in...
Journal Home > Vol 5, No 1 (2012) ... pharmacy, nursing, biotechnology, cell and molecular biology, and related engineering and social science fields. ... Public Health Implication of Mycotoxin Contaminated Pawpaw (Carica papaya L) on ...
Dec 28, 2009 ... forum for the communication and evaluation of data, methods and findings in health sciences and related disciplines. .... al  for the detection of schistosome DNA in faeces. ..... save the inhabitants from the socio- economic ...
Marriott, Lisa K; Nelson, David A; Allen, Shauntice; Calhoun, Karen; Eldredge, Christina E; Kimminau, Kim S; Lucero, Robert J; Pineda-Reyes, Fernando; Rumala, Bernice B; Varanasi, Arti P; Wasser, June S; Shannon, Jackilen
The August 2011 Clinical and Translational Science Awards conference "Using IT to Improve Community Health: How Health Care Reform Supports Innovation" convened four "Think Tank" sessions. Thirty individuals, representing various perspectives on community engagement, attended the "Health information technology (HIT) as a resource to improve community health and education" session, which focused on using HIT to improve patient health, education, and research involvement. Participants discussed a range of topics using a semistructured format. This article describes themes and lessons that emerged from that session, with a particular focus on using HIT to engage communities to improve health and reduce health disparities in populations.
Espinoza, Manuel Antonio; Cabieses, Báltica; Paraje, Guillermo
Health research is considered an essential element for the improvement of population health and it has been recommended that a share of the national health budget should be allocated to develop this field. Chile has undertaken efforts in the last decades in order to improve the governmental structure created to promote the development of health research, which has increased human resources and funding opportunities. On the other hand, the sustained economic growth of Chile in the last decades suggests that the health expenditure will maintain its increasing trend in the following years. This additional funding could be used to improve coverage of current activities performed in the health system, but also to address the incorporation of new strategies. More recently, health technology assessment (HTA) has been proposed as a process to support decisions about allocation of resources based on scientific evidence. This paper examines the relationship between the development of health research and the HTA process. First, it presents a brief diagnosis of the situation of health research in Chile. Second, it reviews the conceptual basis and the methods that account for the relationship between a HTA process and the development of health research. In particular, it emphasizes the relevance of identifying information gaps where funding additional research can be considered a good use of public resources. Finally, it discusses the challenges and possible courses of action that Chile could take in order to guarantee the continuous improvement of an articulated structure for health research and HTA.
Roslind Preethi George
Full Text Available The use of Qualitative Research (QR methods are now getting common in various aspects of health and healthcare research and they can be used to interpret, explore, or obtain a deeper understanding of certain aspects of human beliefs, attitudes, or behavior through personal experiences and perspectives. The potential scope of QR in the field of dental public health is immense, but unfortunately, it has remained underutilized. However, there are a number of studies which have used this type of research to probe into some unanswered questions in the field of public health dentistry ranging from workforce issues to attitudes of patients. In recent health research, evidence gathered through QR methods provide understanding to the social, cultural, and economic factors affecting the health status and healthcare of an individual and the population as a whole. This study will provide an overview of what QR is and discuss its contributions to dental public health research.
Barr, Jennieffer; Welch, Anthony
This article is a report of a qualitative study of workplace health and safety issues in nursing research. Researcher health and safety have become increasing concerns as there is an increased amount of research undertaken in the community and yet there is a lack of appropriate guidelines on how to keep researchers safe when undertaking fieldwork. This study employed a descriptive qualitative approach, using different sources of data to find any references to researcher health and safety issues. A simple descriptive approach to inquiry was used for this study. Three approaches to data collection were used: interviews with 15 researchers, audits of 18 ethics applications, and exploration of the literature between 1992 and 2010 for examples of researcher safety issues. Data analysis from the three approaches identified participant comments, narrative descriptions or statements focused on researcher health and safety. Nurse researchers' health and safety may be at risk when conducting research in the community. Particular concern involves conducting sensitive research where researchers are physically at risk of being harmed, or being exposed to the development of somatic symptoms. Nurse researchers may perceive the level of risk of harm as lower than the actual or potential harm present in research. Nurse researchers do not consistently implement risk assessment before and during research. Researcher health and safety should be carefully considered at all stages of the research process. Research focusing on sensitive data and vulnerable populations need to consider risk minimization through strategies such as appropriate researcher preparation, safety during data collection, and debriefing if required. © 2012 Blackwell Publishing Ltd.
Frankena, T K; Naaldenberg, J; Cardol, M; Garcia Iriarte, E; Buchner, T; Brooker, K; Embregts, P; Joosa, E; Crowther, F; Fudge Schormans, A; Schippers, A; Walmsley, J; O'Brien, P; Linehan, C; Northway, R; van Schrojenstein Lantman-de Valk, H; Leusink, G
The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas. © 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Forsman, Anna K; Wahlbeck, Kristian; Aarø, Leif Edvard
experts were involved in the priority setting process. RESULTS: Twenty priorities for public mental health research were identified through the consensus process. The research priorities were divided into summary principles-encompassing overall recommendations for future public mental health research...... field. METHODS: Experts were invited to compile and discuss research priorities in a series of topic-based scientific workshops. In addition, a Delphi process was carried out to reach consensus on the list of research priorities and their rank order. Three web-based surveys were conducted. Nearly 60...... in Europe-and thematic research priorities, including area-specific top priorities on research topics and methods. The priorities represent three overarching goals mirroring societal challenges, that is, to identify causes, risk and protective factors for mental health across the lifespan; to advance...
Ameri, Cinzia; Fiorini, Fulvio
Marketing research is the systematic and objective search for, and analysis of, information relevant to the identification and solution of any problem in the field of marketing. The key words in this definition are: systematic, objective and analysis. Marketing research seeks to set about its task in a systematic and objective fashion. This means that a detailed and carefully designed research plan is developed in which each stage of the research is specified. Such a research plan is only considered adequate if it specifies: the research problem in concise and precise terms, the information necessary to address the problem, the methods to be employed in gathering the information and the analytical techniques to be used to interpret it. Maintaining objectivity in marketing research is essential if marketing management is to have sufficient confidence in its results to be prepared to take risky decisions based upon those results. To this end, as far as possible, marketing researchers employ the scientific method. The characteristics of the scientific method are that it translates personal prejudices, notions and opinions into explicit propositions (or hypotheses). These are tested empirically. At the same time alternative explanations of the event or phenomena of interest are given equal consideration.
engineering fields). It seeks particularly (but not exclusively) to encourage multidisciplinary research and collaboration among scientists, the industry and the healthcare ... The journal welcomes original research papers, reviews and case reports on current topics of special .... software package version 6.1 (CDC, Atlanta,.
González Block Miguel
Full Text Available Abstract Health research systems can link knowledge generation with practical concerns to improve health and health equity. Interest in health research, and in how health research systems should best be organised, is moving up the agenda of bodies such as the World Health Organisation. Pioneering health research systems, for example those in Canada and the UK, show that progress is possible. However, radical steps are required to achieve this. Such steps should be based on evidence not anecdotes. Health Research Policy and Systems (HARPS provides a vehicle for the publication of research, and informed opinion, on a range of topics related to the organisation of health research systems and the enormous benefits that can be achieved. Following the Mexico ministerial summit on health research, WHO has been identifying ways in which it could itself improve the use of research evidence. The results from this activity are soon to be published as a series of articles in HARPS. This editorial provides an account of some of these recent key developments in health research systems but places them in the context of a distinguished tradition of debate about the role of science in society. It also identifies some of the main issues on which 'research on health research' has already been conducted and published, in some cases in HARPS. Finding and retaining adequate financial and human resources to conduct health research is a major problem, especially in low and middle income countries where the need is often greatest. Research ethics and agenda-setting that responds to the demands of the public are issues of growing concern. Innovative and collaborative ways are being found to organise the conduct and utilisation of research so as to inform policy, and improve health and health equity. This is crucial, not least to achieve the health-related Millennium Development Goals. But much more progress is needed. The editorial ends by listing a wide range of topics
Full Text Available Abstract Background Global health research is essential for development. A major issue is the inequitable distribution of research efforts and funds directed towards populations suffering the world's greatest health problems. This imbalance is fostering major attempts at redirecting research to the health problems of low and middle income countries. Following the creation of the Coalition for Global Health Research – Canada (CGHRC in 2001, the Canadian Society for International Health (CSIH decided to review the role of non-governmental organizations (NGOs in global health research. This paper highlights some of the prevalent thinking and is intended to encourage new thinking on how NGOs can further this role. Approach This paper was prepared by members of the Research Committee of the CSIH, with input from other members of the Society. Persons working in various international NGOs participated in individual interviews or group discussions on their involvement in different types of research activities. Case studies illustrate the roles of NGOs in global health research, their perceived strengths and weaknesses, and the constraints and opportunities to build capacity and develop partnerships for research. Highlights NGOs are contributing at all stages of the research cycle, fostering the relevance and effectiveness of the research, priority setting, and knowledge translation to action. They have a key role in stewardship (promoting and advocating for relevant global health research, resource mobilization for research, the generation, utilization and management of knowledge, and capacity development. Yet, typically, the involvement of NGOs in research is downstream from knowledge production and it usually takes the form of a partnership with universities or dedicated research agencies. Conclusion There is a need to more effectively include NGOs in all aspects of health research in order to maximize the potential benefits of research. NGOs
Full Text Available Abstract In the rapidly changing context of research on animal health, INRA launched a collective discussion on the challenges facing the field, its distinguishing features, and synergies with biomedical research. As has been declared forcibly by the heads of WHO, FAO and OIE, the challenges facing animal health, beyond diseases transmissible to humans, are critically important and involve food security, agriculture economics, and the ensemble of economic activities associated with agriculture. There are in addition issues related to public health (zoonoses, xenobiotics, antimicrobial resistance, the environment, and animal welfare. Animal health research is distinguished by particular methodologies and scientific questions that stem from the specific biological features of domestic species and from animal husbandry practices. It generally does not explore the same scientific questions as research on human biology, even when the same pathogens are being studied, and the discipline is rooted in a very specific agricultural and economic context. Generic and methodological synergies nevertheless exist with biomedical research, particularly with regard to tools and biological models. Certain domestic species furthermore present more functional similarities with humans than laboratory rodents. The singularity of animal health research in relation to biomedical research should be taken into account in the organization, evaluation, and funding of the field through a policy that clearly recognizes the specific issues at stake. At the same time, the One Health approach should facilitate closer collaboration between biomedical and animal health research at the level of research teams and programmes.
Ducrot, Christian; Bed'hom, Bertrand; Béringue, Vincent; Coulon, Jean-Baptiste; Fourichon, Christine; Guérin, Jean-Luc; Krebs, Stéphane; Rainard, Pascal; Schwartz-Cornil, Isabelle; Torny, Didier; Vayssier-Taussat, Muriel; Zientara, Stephan; Zundel, Etienne; Pineau, Thierry
In the rapidly changing context of research on animal health, INRA launched a collective discussion on the challenges facing the field, its distinguishing features, and synergies with biomedical research. As has been declared forcibly by the heads of WHO, FAO and OIE, the challenges facing animal health, beyond diseases transmissible to humans, are critically important and involve food security, agriculture economics, and the ensemble of economic activities associated with agriculture. There are in addition issues related to public health (zoonoses, xenobiotics, antimicrobial resistance), the environment, and animal welfare.Animal health research is distinguished by particular methodologies and scientific questions that stem from the specific biological features of domestic species and from animal husbandry practices. It generally does not explore the same scientific questions as research on human biology, even when the same pathogens are being studied, and the discipline is rooted in a very specific agricultural and economic context.Generic and methodological synergies nevertheless exist with biomedical research, particularly with regard to tools and biological models. Certain domestic species furthermore present more functional similarities with humans than laboratory rodents.The singularity of animal health research in relation to biomedical research should be taken into account in the organization, evaluation, and funding of the field through a policy that clearly recognizes the specific issues at stake. At the same time, the One Health approach should facilitate closer collaboration between biomedical and animal health research at the level of research teams and programmes.
Abstract The goal of universal health coverage is to “ensure that all people obtain the health services they need without suffering financial hardship when paying for them.” There are many connections between this goal and the state’s legal obligation to realize the human right to health. In the context of this goal, it is important to assess private actors’ involvement in the health sector. For example, private actors may not always have the incentives to deal with externalities that affect the availability, accessibility, acceptability, and quality of health care services; they may not be in a position to provide “public goods”; or they may operate under imperfect information. This paper sets out to answer the question, what legal human rights obligations do states have in terms of regulating private sector involvement in health care? PMID:28559678
Hallo De Wolf, Antenor; Toebes, Brigit
The goal of universal health coverage is to "ensure that all people obtain the health services they need without suffering financial hardship when paying for them." There are many connections between this goal and the state's legal obligation to realize the human right to health. In the context of this goal, it is important to assess private actors' involvement in the health sector. For example, private actors may not always have the incentives to deal with externalities that affect the availability, accessibility, acceptability, and quality of health care services; they may not be in a position to provide "public goods"; or they may operate under imperfect information. This paper sets out to answer the question, what legal human rights obligations do states have in terms of regulating private sector involvement in health care?
Karbach, U; Stamer, M; Holmberg, C; Güthlin, C; Patzelt, C; Meyer, T
This is the second part of a 3-part discussion paper by the working group on "Qualitative Methods" in the German network of health services research (DNVF) that shall contribute to the development of a memorandum concerning qualitative health services research. It aims to depict the different types of qualitative research that are conducted in health services research in Germany. In addition, the authors present a specific set of qualitative data collection and analysis tools to demonstrate the potential of qualitative research for health services research. QUALITATIVE RESEARCH IN HEALTH SERVICES RESEARCH - AN OVERVIEW: To give an overview of the types of qualitative research conducted in German health services research, the abstracts of the 8th German Conference on Health Services Research were filtered to identify qualitative or mixed-methods studies. These were then analysed by looking at the context which was studied, who was studied, the aims of the studies, and what type of methods were used. Those methods that were mentioned most often for data collection and analysis are described in detail. QUALITATIVE RESEARCH AT THE CONFERENCE FOR HEALTH SERVICES RESEARCH 2009: Approximately a fifth of all abstracts (n=74) had a qualitative (n=47) or a mixed-methods approach combining quantitative and qualitative methods (n=27). Research aims included needs assessment (41%), survey development (36%), evaluation (22%), and theorizing (1%). Data collection mostly consisted of one-on-one interviews (n=45) and group discussions (n=29). Qualitative content analysis was named in 35 abstracts, 30 abstracts did not reference their method of analysis. In addition to a quantitative summary of the abstract findings, the diversity of fields addressed by qualitative methods is highlighted. Although drawing conclusions on the use of qualitative methods in German health services research from the analysis of conference abstracts is not possible, the overview we present demonstrates the
Pieniak, Zuzanna; Verbeke, Wim; Scholderer, Joachim
Purpose - To investigate the impact of consumers' health beliefs, involvement, and risk perception on fish consumption in five European countries. Design/methodology/approach - Cross-sectional data were collected through the SEAFOODplus pan-European consumer survey (n=4,786) with samples represen......Purpose - To investigate the impact of consumers' health beliefs, involvement, and risk perception on fish consumption in five European countries. Design/methodology/approach - Cross-sectional data were collected through the SEAFOODplus pan-European consumer survey (n=4,786) with samples...... representative for age and region in Belgium, the Netherlands, Denmark, Spain and Poland. Structural equation modeling (LISREL) was used in order to simultaneously estimate the strength and direction of all relationships in our model.- Our model contributes to a better understanding of factors influencing fish...... consumption. Health involvement is found as an indirect whilst interest in healthy eating emerges as a direct driver of fish consumption behaviour. On the contrary, risk perception has a negative impact on fish consumption. Research limitations/implications - Further research using survey questionnaires could...
Arora, Shifali; Yttri, Jennifer; Nilse, Wendy
Research on the use of mobile technologies for alcohol use problems is a developing field. Rapid technological advances in mobile health (or mHealth) research generate both opportunities and challenges, including how to create scalable systems capable of collecting unprecedented amounts of data and conducting interventions-some in real time-while at the same time protecting the privacy and safety of research participants. Although the research literature in this area is sparse, lessons can be borrowed from other communities, such as cybersecurity or Internet security, which offer many techniques to reduce the potential risk of data breaches or tampering in mHealth. More research into measures to minimize risk to privacy and security effectively in mHealth is needed. Even so, progress in mHealth research should not stop while the field waits for perfect solutions.
Kettles, A M; Creswell, J W; Zhang, W
Mixed methods research is becoming more widely used in order to answer research questions and to investigate research problems in mental health and psychiatric nursing. However, two separate literature searches, one in Scotland and one in the USA, revealed that few mental health nursing studies identified mixed methods research in their titles. Many studies used the term 'embedded' but few studies identified in the literature were mixed methods embedded studies. The history, philosophical underpinnings, definition, types of mixed methods research and associated pragmatism are discussed, as well as the need for mixed methods research. Examples of mental health nursing mixed methods research are used to illustrate the different types of mixed methods: convergent parallel, embedded, explanatory and exploratory in their sequential and concurrent combinations. Implementing mixed methods research is also discussed briefly and the problem of identifying mixed methods research in mental and psychiatric nursing are discussed with some possible solutions to the problem proposed. © 2011 Blackwell Publishing.
Mar 4, 2008 ... international forum for the communication and evaluation of data, methods and findings in health sciences and related disciplines. ... school students in Benin City is still poor and the adolescents still engage in ... people often have to overcome the stigma and discrimination, and address some of the most ...
in relation to the use of liquefied petroleum gas (LPG) as car fuel. Methods: ... Public health and environmental impact of. LPG were not .... and valid insurance was reported for 78.7%. (N=181) ... economical point of view for advertising and.
Sep 19, 2008 ... forum for the communication and evaluation of data, methods and findings in health sciences and related disciplines. .... Table: Effect of hepatoprotective activity of the fruits of Coccinia grandis against CCl4-induced hepatotoxicity in rats. Bilurubin. Treatment. SGOT ... and loss of functional integrity of the cell.
Quick, Annie; Böhnke, Jan R; Wright, John; Pickett, Kate E
Evidence suggests that the process of taking part in health research can improve participants' health, independent of any intended intervention. However, no research has yet explored whether these effects differ across socioeconomic groups. If the effect of mere participation in health research also has a social gradient this could increase health inequalities and bias research results. This study used the Born in Bradford family cohort (BIB) to explore whether simply taking part in BIB had improved participants' health and, if so, whether this effect was mediated by socioeconomic status. Survey data on self-reported health behaviours were collected between 2007 and 2010 as part of BIB. These were augmented by clinical data on birth weight. Pregnant women on their second pregnancy, joining BIB for the first time formed the control group. Their health was compared to women on their second pregnancy who had both pregnancies within the study, who formed the exposed group. In order to limit the inherent bias in a non-randomised study, propensity score analysis was used, matching on age, ethnicity, education and date of questionnaire. The results were then compared according to mothers' education. Of six outcomes tested, only alcohol consumption showed a statistically significant reduction with exposure to BIB (OR: 0.35, 95% CIs 0.13, 0.92). Although effect estimates were larger for women with higher education compared to lower education, these effects were not statistically significant. Despite one significant finding, these results overall are insufficient to conclude that simply taking part in BIB affected participants' health. We recommend that socioeconomic status is considered in future studies testing effects of research participation, and that randomised studies with larger sample sizes are conducted.
The journal welcomes original research papers, reviews and case reports on current topics of special interest and relevance. ... Lipid solubility and molecular size are the major limiting factors for ... as natural digestive aids and as carriers for.
It seeks particularly (but not exclusively) to encourage multidisciplinary research and collaboration ... teaching of the subject and their self-rated unseriousness about the subject. ..... ac.nz/~iase/publications/5/stan0219.pdf. 4. Wakeford RE.
It seeks particularly (but not exclusively) to encourage multidisciplinary research and collaboration among ... in the medical wards of a teaching hospital and to generate discussions .... Manual data entry which is the current practice in most ...
disciplines (including medicine, pharmacy, nursing, biotechnology, cell and ... The journal welcomes original research papers, reviews and case reports on current ..... Asian J. Pharm. 2008; 2:73-76. 5. Rasenack N, Muller BW. Dissolution rate.
Jun 12, 2008 ... The journal welcomes original research papers, reviews and case reports on current ... serpentine, reserpine, narcotine, caffeine, ... were fed on healthy diet and maintained in ... (i) Effect of methanolic extract of Plumeria.
Aug 2, 2015 ...  Those who contribute to scientific research ought to share in its benefits. .... women to form new relationships, social networks and develop a sense of ... or discoveries about the indigenous biological resources before.
Sormunen, Marjorita; Tossavainen, Kerttu; Turunen, Hannele
A 2-year, participatory action research school health study focused on developing components for home-school partnerships to support children's health learning process. Two intervention schools implemented strengthened health and collaboration-orientated activities; two control schools followed the national core curriculum without extracurricular…
Bjerregaard, Peter; Curtis, Tine
In 1992, the Greenland Home Rule Government took over the responsibility for health care. There has since been a growing cooperation between the Directorate of Health and researchers in Denmark and Greenland, for instance by the Directorate supporting workshops and funding a chair in health resea...
Wright, Nicola; Rowley, Emma; Chopra, Arun; Gregoriou, Kyriakos; Waring, Justin
User involvement and recovery are now widely used terms within the mental health policy, research and practice discourse. However, there is a question mark about the impact these ideas have in everyday practice. Of interest is the degree of involvement in key transitions of care. In particular, admission to and discharge from acute inpatient mental health wards. To explore the nature of service user involvement in the admission and discharge process into and out of acute inpatient mental health care. A qualitative study using focus groups. One acute, inpatient mental health ward was the focus of the study. Seven uniprofessional focus group interviews were conducted with ward staff, community staff and service users (total number of participants = 52). Conventional, thematic qualitative techniques were used to analyse the data. The data analysed and presented in this article relate to the loss of the service user voice at the key transition points into and out of acute inpatient care. Due to the lack of resources (inpatient beds and community care follow-up), the role service users could play was diminished. In their narratives, clinical staff associated the person with the process and used language which dehumanized the individual. Service users experience numerous care transitions into and out of hospital. As there is the potential for these encounters to have a lasting negative effect, the importance of ensuring service users have a voice in what is happening to them is crucial. © 2015 John Wiley & Sons Ltd.
Curtis, Valerie A.; Garbrah-Aidoo, Nana; Scott, Beth
Skill in marketing is a scarce resource in public health, especially in developing countries. The Global Public–Private Partnership for Handwashing with Soap set out to tap the consumer marketing skills of industry for national handwashing programs. Lessons learned from commercial marketers included how to (1) understand consumer motivation, (2) employ 1 single unifying idea, (3) plan for effective reach, and (4) ensure effectiveness before national launch. After the first marketing program, 71% of Ghanaian mothers knew the television ad and the reported rates of handwashing with soap increased. Conditions for the expansion of such partnerships include a wider appreciation of what consumer marketing is, what it can do for public health, and the potential benefits to industry. Although there are practical and philosophical difficulties, there are many opportunities for such partnerships. PMID:17329646
... Clinicians & Providers Data & Measures Education & Training Health Information Technology ... Sources Available from AHRQ Healthcare Cost and Utilization Project (HCUP) Medical Expenditure Panel ...
Hollederer, A; Wildner, M
There is a great need for health services research in the public health system and in the German public health service. However, the public health service is underrepresented in health services research in Germany. This has several structural, historical and disciplinary-related reasons. The public health service is characterised by a broad range of activities, high qualification requirements and changing framework conditions. The concept of health services research is similar to that of the public health service and public health system, because it includes the principles of multidisciplinarity, multiprofessionalism and daily routine orientation. This article focuses on a specified system theory based model of health services research for the public health system and public health service. The model is based on established models of the health services research and health system research, which are further developed according to specific requirements of the public health service. It provides a theoretical foundation for health services research on the macro-, meso- and microlevels in public health service and the public health system. Prospects for public health service are seen in the development from "old public health" to "new public health" as well as in the integration of health services research and health system research. There is a significant potential for development in a better linkage between university research and public health service as is the case for the "Pettenkofer School of Public Health Munich". © Georg Thieme Verlag KG Stuttgart · New York.
Supper, I; Catala, O; Lustman, M; Chemla, C; Bourgueil, Y; Letrilliart, L
The epidemiological transition calls for redefining the roles of the various professionals involved in primary health care towards greater collaboration. We aimed to identify facilitators of, and barriers to, interprofessional collaboration in primary health care as perceived by the actors involved, other than nurses. Systematic review using synthetic thematic analysis of qualitative research. Articles were retrieved from Medline, Web of science, Psychinfo and The Cochrane library up to July 2013. Quality and relevance of the studies were assessed according to the Dixon-Woods criteria. The following stakeholders were targeted: general practitioners, pharmacists, mental health workers, midwives, physiotherapists, social workers and receptionists. Forty-four articles were included. The principal facilitator of interprofessional collaboration in primary care was the different actors' common interest in collaboration, perceiving opportunities to improve quality of care and to develop new professional fields. The main barriers were the challenges of definition and awareness of one another's roles and competences, shared information, confidentiality and responsibility, team building and interprofessional training, long-term funding and joint monitoring. Interprofessional organization and training based on appropriate models should support collaboration development. The active participation of the patient is required to go beyond professional boundaries and hierarchies. Multidisciplinary research projects are recommended. © The Author 2014. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Introduction: Health Policy and Systems Research and Analysis (HPSR&A) is an applied science that deals with complexity as it tries to provide lessons, tools and methods to understand and improve health systems and health policy. It is defined by the kinds of questions asked rather than a particular methodology.
Sparrow, E. B.; Kopplin, M.; Gazal, R. M.; Robin, J. H.; Boger, R. A.
Phenology plays a key role in the environment and ecosystem. Primary and secondary students around the world have been collecting vegetation phenology data and contributing to ongoing scientific investigations. They have increased research capacity by increasing spatial coverage of ground observations that can be useful for validation of remotely sensed data. The green-up and green-down phenology measurement protocols developed at the University of Alaska Fairbanks (UAF) as part of the Global Learning and Observations to Benefit the Environment (GLOBE) program, have been used in more than 250 schools in over 20 countries. In addition to contributing their data, students have conducted their own investigations and presented them at science fairs and symposiums, and international conferences. An elementary school student in Alaska conducted a comprehensive study on the green-down rates of native and introduced trees and shrubs. Her project earned her a one-year college scholarship at UAF. Students from the Model Secondary School for the Deaf in Washington, D. C. and from the Indiana School for the Deaf collaborated on a comparative green-up study, and were chosen to present at an international conference where students from more than 20 countries participated. Similarly, students in Thailand presented at national conferences, their studies such as "The Relationship between Environmental Conditions and Green-down of Teak Trees (Tectona grandis L.)" at Roong Aroon School, Bangkok and "The Comparison of Budburst and Green-up of Leab Trees (Ficus infectoria Roxb.) at Rob Wiang and Mae Khao Tom Sub-district in Chiang Rai Province". Some challenges in engaging students in phenological studies include the mismatch in timing of the start and end of the plant growing season with that of the school year in northern latitudes and the need for scientists and teachers to work with students to ensure accurate measurements. However these are outweighed by benefits to the scientists
Brereton, Louise; Wahlster, Philip; Mozygemba, Kati; Lysdahl, Kristin Bakke; Burns, Jake; Polus, Stephanie; Tummers, Marcia; Refolo, Pietro; Sacchini, Dario; Leppert, Wojciech; Chilcott, James; Ingleton, Christine; Gardiner, Clare; Goyder, Elizabeth
Internationally, funders require stakeholder involvement throughout health technology assessment (HTA). We report successes, challenges, and lessons learned from extensive stakeholder involvement throughout a palliative care case study that demonstrates new concepts and methods for HTA. A 5-step "INTEGRATE-HTA Model" developed within the INTEGRATE-HTA project guided the case study. Using convenience or purposive sampling or directly / indirectly identifying and approaching individuals / groups, stakeholders participated in qualitative research or consultation meetings. During scoping, 132 stakeholders, aged ≥ 18 years in seven countries (England, Italy, Germany, The Netherlands, Norway, Lithuania, and Poland), highlighted key issues in palliative care that assisted identification of the intervention and comparator. Subsequently stakeholders in four countries participated in face-face, telephone and / or video Skype meetings to inform evidence collection and / or review assessment results. An applicability assessment to identify contextual and implementation barriers and enablers for the case study findings involved twelve professionals in the three countries. Finally, thirteen stakeholders participated in a mock decision-making meeting in England. Views about the best methods of stakeholder involvement vary internationally. Stakeholders make valuable contributions in all stages of HTA; assisting decision making about interventions, comparators, research questions; providing evidence and insights into findings, gap analyses and applicability assessments. Key challenges exist regarding inclusivity, time, and resource use. Stakeholder involvement is feasible and worthwhile throughout HTA, sometimes providing unique insights. Various methods can be used to include stakeholders, although challenges exist. Recognition of stakeholder expertise and further guidance about stakeholder consultation methods is needed.
The journal welcomes original research papers, reviews and case reports on current topics of special ... demand in the market. .... Phase solubility studies showed the effect of three CD .... can be easily scaled up to the industrial level ... the drug caused by kneading process and ... Influence of cyclodextrins and chitosan on.
disciplines. The journal welcomes original research papers, reviews and case reports on current topics of special ... software to allow authors track the changes to their submission. All manuscripts must ... and Drug Development, University .... Table 2: Knowledge of emergency contraception methods among the study group.
Wilson, Christine Brown; Clissett, Philip
Aim The purpose of this paper is to identify practical suggestions that could enable other researchers to consider how quality may be evidenced using constructivist principles including the perspectives of older people and their caregivers. Background Constructivism suggests that reality is part of a social construction, which holds different meanings for each person, in which people are active agents, making autonomous decisions. This approach to research has been identified as suitable for health and social care professionals because these underpinning principles reflect the values of these professions, facilitating the involvement of users and carers. The authenticity criteria have been developed to reflect these philosophical principles but have been criticized for their inaccessible language. To incorporate user and carer perspectives, the criteria have been revised into a more accessible model matrix known as the AldreVast Sjuharad criteria. Discussion This paper reports on two constructivist studies that explored relationships between older people, families and staff in different settings – the community and care homes. Examples from both settings demonstrate how the perspectives of users and carers were incorporated throughout the research process. Following the AldreVast Sjuharad model matrix, practical guidance is provided on how the quality of constructivist research may be implemented in nursing research. Conclusions The different settings in this paper influenced how the AldreVast Sjuharad model matrix was applied. Further work is needed in exploring how the perspective of users and carers may be incorporated into the quality process of constructivist research. PMID:21073505
Veale, Jaimie; Watson, Ryan J; Adjei, Jones; Saewyc, Elizabeth
While little research has been conducted into the reproductive experiences of transgender people, available evidence suggests that like cisgender people, most transgender people endorse a desire for these experiences. This study explores the pregnancy experiences and related health factors among transgender and gender-diverse 14-25 year olds using a national Canadian sample ( N = 923). Results indicated that 26 (5%) transgender youth reported a pregnancy experience in the past and the prevalence among 14-18 year olds was comparable to population-based estimates using the same question in the British Columbia Adolescent Health Survey. Transgender youth with a history of pregnancy involvement reported a diverse range of gender identities, and this group did not differ from the remainder of the sample on general mental health, social supports, and living in felt gender. This group did report over six times greater likelihood of having been diagnosed with a sexually transmitted infection by a doctor (19%), but did they not differ in reported contraception use during last sexual intercourse. These findings suggest that pregnancy involvement is an issue that should not be overlooked by health professionals working with transgender youth and that this group has particular sexual health needs.
Remington, Patrick L; Moberg, D Paul; Booske, Bridget C; Ceraso, Marion; Friedsam, Donna; Kindig, David A
Despite significant accomplishments in basic, clinical, and population health research, a wide gap persists between research discoveries (ie, what we know) and actual practice (ie, what we do). The University of Wisconsin Population Health Institute (Institute) researchers study the process and outcomes of disseminating evidence-based public health programs and policies into practice. This paper briefly describes the approach and experience of the Institute's programs in population health assessment, health policy, program evaluation, and education and training. An essential component of this dissemination research program is the active engagement of the practitioners and policymakers. Each of the Institute's programs conducts data collection, analysis, education, and dialogue with practitioners that is closely tied to the planning, implementation, and evaluation of programs and policies. Our approach involves a reciprocal exchange of knowledge with non-academic partners, such that research informs practice and practice informs research. Dissemination research serves an important role along the continuum of research and is increasingly recognized as an important way to improve population health by accelerating the translation of research into practice.
Bailey, S; Boddy, K; Briscoe, S; Morris, C
Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather
Woodall, James; Warwick-Booth, Louise; South, Jane; Cross, Ruth
There have been concerns about the decline of health promotion as a practice and discipline and, alongside this, calls for a clearer articulation of health promotion research and what, if anything, makes it distinct. This discussion paper, based on a review of the literature, the authors' own experiences in the field, and a workshop delivered by two of the authors at the 8th Nordic Health Promotion Conference, seeks to state the reasons why health promotion research is distinctive. While by no means exhaustive, the paper suggests four distinctive features. The paper hopes to be a catalyst to enable health promotion researchers to be explicit in their practice and to begin the process of developing an agreed set of research principles.
Brainard, Julii Suzanne; Al Assaf, Enana; Omasete, Judith; Leach, Steve; Hammer, Charlotte C; Hunter, Paul R
The UK's National Institute for Health Research (NIHR) Health Protection Research Unit in Emergency Preparedness and Response was asked to undertake research on how to reduce the impact of complex national/international emergencies on public health. How to focus the research and decide on priority topics was challenging, given the nature of complex events. Using a type of structured brain-storming, the researchers identified the ongoing UK, European and international migration crisis as both complex and worthy of deeper research. To further focus the research, two representatives of forced migrant communities were invited to join the project team as patient and public (PPI) representatives. They attended regular project meetings, insightfully contributed to and advised on practical aspects of potential research areas. The representatives identified cultural obstacles and community needs and helped choose the final research study design, which was to interview forced migrants about their strategies to build emotional resilience and prevent mental illness. The representatives also helped design recruitment documents, and undertake recruitment and interviewer training. Many events with wide-ranging negative health impacts are notable for complexity: lack of predictability, non-linear feedback mechanisms and unexpected consequences. A multi-disciplinary research team was tasked with reducing the public health impacts from complex events, but without a pre-specified topic area or research design. This report describes using patient and public involvement within an adaptable but structured development process to set research objectives and aspects of implementation. An agile adaptive development approach, sometimes described as swarm , was used to identify possible research areas. Swarm is meant to quickly identify strengths and weaknesses of any candidate project, to accelerate early failure before resources are invested. When aspects of the European migration crisis
IDRC frequently supports collaborative Canada-South research on subjects of vital ... to structure and manage Canada-South research partnerships more effectively. ... Africa, Latin America and Canada leading to region-specific working papers on ... for the Joint Canada-Israel Health Research Program 2018 competition.
Lisa J. Moran
Full Text Available The Robinson Research Institute of the University of Adelaide convened a multidisciplinary group of n = 33 clinicians, researchers and representatives of government organisations on the 2 October 2014 for a workshop entitled “Promoting fertility and healthy conception. How do we generate greater reproductive health awareness?” The key aim of the workshop was to assess the body of knowledge that informs clinical practice and government policy, and to identify questions and additional information needed by health practitioners and government representatives working in the field of reproductive health and to frame future research and policy. The workshop identified topics that fell mostly into three categories: lifestyle-related, societal and biological factors. The lifestyle topics included nutrition and diet, exercise, obesity, shift work and other factors deemed to be modifiable at the level of the individual. The societal topics included discussions of matters that are structural, and resistant to change by individuals, including specific ethical issues, social disadvantage, government and educational policies. The biological factors are intrinsic physical states of the individual, and included many factors where there is a dense body of scientific knowledge which may not be readily accessible in less academic language. This workshop thus provided an opportunity to identify further actions that could be undertaken to meet the needs of diverse organisations and groups of professionals with an interest in human fertility. Since so many factors in our social and biological environment can impact fertility and preconception health, it is imperative to involve many disciplines or levels of government or societal organisations that have not traditionally been involved in this area.
Zengul, Ferhat; Oner, Nurettin; Delen, Dursun
In recent years, because of the advancements in communication and networking technologies, mobile technologies have been developing at an unprecedented rate. mHealth, the use of mobile technologies in medicine, and the related research has also surged parallel to these technological advancements. Although there have been several attempts to review mHealth research through manual processes such as systematic reviews, the sheer magnitude of the number of studies published in recent years makes this task very challenging. The most recent developments in machine learning and text mining offer some potential solutions to address this challenge by allowing analyses of large volumes of texts through semi-automated processes. The objective of this study is to analyze the evolution of mHealth research by utilizing text-mining and natural language processing (NLP) analyses. The study sample included abstracts of 5,644 mHealth research articles, which were gathered from five academic search engines by using search terms such as mobile health, and mHealth. The analysis used the Text Explorer module of JMP Pro 13 and an iterative semi-automated process involving tokenizing, phrasing, and terming. After developing the document term matrix (DTM) analyses such as single value decomposition (SVD), topic, and hierarchical document clustering were performed, along with the topic-informed document clustering approach. The results were presented in the form of word-clouds and trend analyses. There were several major findings regarding research clusters and trends. First, our results confirmed time-dependent nature of terminology use in mHealth research. For example, in earlier versus recent years the use of terminology changed from “mobile phone” to “smartphone” and from “applications” to “apps”. Second, ten clusters for mHealth research were identified including (I) Clinical Research on Lifestyle Management, (II) Community Health, (III) Literature Review, (IV) Medical
Ozaydin, Bunyamin; Zengul, Ferhat; Oner, Nurettin; Delen, Dursun
In recent years, because of the advancements in communication and networking technologies, mobile technologies have been developing at an unprecedented rate. mHealth, the use of mobile technologies in medicine, and the related research has also surged parallel to these technological advancements. Although there have been several attempts to review mHealth research through manual processes such as systematic reviews, the sheer magnitude of the number of studies published in recent years makes this task very challenging. The most recent developments in machine learning and text mining offer some potential solutions to address this challenge by allowing analyses of large volumes of texts through semi-automated processes. The objective of this study is to analyze the evolution of mHealth research by utilizing text-mining and natural language processing (NLP) analyses. The study sample included abstracts of 5,644 mHealth research articles, which were gathered from five academic search engines by using search terms such as mobile health, and mHealth. The analysis used the Text Explorer module of JMP Pro 13 and an iterative semi-automated process involving tokenizing, phrasing, and terming. After developing the document term matrix (DTM) analyses such as single value decomposition (SVD), topic, and hierarchical document clustering were performed, along with the topic-informed document clustering approach. The results were presented in the form of word-clouds and trend analyses. There were several major findings regarding research clusters and trends. First, our results confirmed time-dependent nature of terminology use in mHealth research. For example, in earlier versus recent years the use of terminology changed from "mobile phone" to "smartphone" and from "applications" to "apps". Second, ten clusters for mHealth research were identified including (I) Clinical Research on Lifestyle Management, (II) Community Health, (III) Literature Review, (IV) Medical Interventions
Pratt, Bridget; Hyder, Adnan A
Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically aim to reduce health disparities between and within countries, what is required for them to do so has not been clearly defined. This article takes a conceptual approach to explore how the governance of transnational global health research consortia should be structured to advance health equity. To do so, it applies an account called shared health governance to derive procedural and substantive guidance. A checklist based on this guidance is proposed to assist research consortia determine where their governance practices strongly promote equity and where they may fall short.
Mental health research has received relatively little philanthropic support in Australia compared with other areas of health research. Philanthropic trusts do not generally provide recurrent funding or make grants for that perceived to be the responsibility of the state or the market. The emergence of 'strategic philanthropy' however, provides potential for mental health researchers to form partnerships with philanthropic foundations, particularly on initiatives that are focused on prevention and innovative and sustainable models with the capacity to 'go to scale' across the service system.
Gentles, Stephen James; Lokker, Cynthia; McKibbon, K Ann
Pediatric patients with health conditions requiring follow-up typically depend on a caregiver to mediate at least part of the necessary two-way communication with health care providers on their behalf. Health information technology (HIT) and its subset, information communication technology (ICT), are increasingly being applied to facilitate communication between health care provider and caregiver in these situations. Awareness of the extent and nature of published research involving HIT interventions used in this way is currently lacking. This scoping review was designed to map the health literature about HIT used to facilitate communication involving health care providers and caregivers (who are usually family members) of pediatric patients with health conditions requiring follow-up. Terms relating to care delivery, information technology, and pediatrics were combined to search MEDLINE, EMBASE, and CINAHL for the years 1996 to 2008. Eligible studies were selected after three rounds of duplicate screening in which all authors participated. Data regarding patient, caregiver, health care provider, HIT intervention, outcomes studied, and study design were extracted and maintained in a Microsoft Access database. Stage of research was categorized using the UK's Medical Research Council (MRC) framework for developing and evaluating complex interventions. Quantitative and qualitative descriptive summaries are presented. We included 104 eligible studies (112 articles) conducted in 17 different countries and representing 30 different health conditions. The most common conditions were asthma, type 1 diabetes, special needs, and psychiatric disorder. Most studies (88, 85%) included children 2 to 12 years of age, and 73 (71%) involved home care settings. Health care providers operated in hospital settings in 96 (92%) of the studies. Interventions featured 12 modes of communication (eg, Internet, intranets, telephone, video conferencing, email, short message service [SMS], and
Kurtz-Rossi, Sabrina; Funk, Carla J.
Objectives: This research studied hospital administrators' and hospital-based health care providers' (collectively, the target group) perceived value of consumer health information resources and of librarians' roles in promoting health information literacy in their institutions. Methods: A web-based needs survey was developed and administered to hospital administrators and health care providers. Multiple health information literacy curricula were developed. One was pilot-tested by nine hospital libraries in the United States and Canada. Quantitative and qualitative methods were used to evaluate the curriculum and its impact on the target group. Results: A majority of survey respondents believed that providing consumer health information resources was critically important to fulfilling their institutions' missions and that their hospitals could improve health information literacy by increasing awareness of its impact on patient care and by training staff to become more knowledgeable about health literacy barriers. The study showed that a librarian-taught health information literacy curriculum did raise awareness about the issue among the target group and increased both the use of National Library of Medicine consumer health resources and referrals to librarians for health information literacy support. Conclusions: It is hoped that many hospital administrators and health care providers will take the health information literacy curricula and recognize that librarians can educate about the topic and that providers will use related consumer health services and resources. PMID:19851494
Detmer Don E
Full Text Available Abstract Background Improving health in our nation requires strengthening four major domains of the health care system: personal health management, health care delivery, public health, and health-related research. Many avoidable shortcomings in the health sector that result in poor quality are due to inaccessible data, information, and knowledge. A national health information infrastructure (NHII offers the connectivity and knowledge management essential to correct these shortcomings. Better health and a better health system are within our reach. Discussion A national health information infrastructure for the United States should address the needs of personal health management, health care delivery, public health, and research. It should also address relevant global dimensions (e.g., standards for sharing data and knowledge across national boundaries. The public and private sectors will need to collaborate to build a robust national health information infrastructure, essentially a 'paperless' health care system, for the United States. The federal government should assume leadership for assuring a national health information infrastructure as recommended by the National Committee on Vital and Health Statistics and the President's Information Technology Advisory Committee. Progress is needed in the areas of funding, incentives, standards, and continued refinement of a privacy (i.e., confidentiality and security framework to facilitate personal identification for health purposes. Particular attention should be paid to NHII leadership and change management challenges. Summary A national health information infrastructure is a necessary step for improved health in the U.S. It will require a concerted, collaborative effort by both public and private sectors. If you cannot measure it, you cannot improve it. Lord Kelvin
Full Text Available Abstract The Bamako Call for Action on Research for Health stresses the importance of inter-disciplinary, inter-ministerial and inter-sectoral working. This challenges much of our current research and postgraduate research training in health, which mostly seeks to produce narrowly focused content specialists. We now need to compliment this type of research and research training, by offering alternative pathways that seek to create expertise, not only in specific narrow content areas, but also in the process and context of research, as well as in the interaction of these different facets of knowledge. Such an approach, developing 'integrative expertise', could greatly facilitate better research utilisation, helping policy makers and practitioners work through more evidence-based practice and across traditional research boundaries.
Hankivsky, Olena; Reid, Colleen; Cormier, Renee; Varcoe, Colleen; Clark, Natalie; Benoit, Cecilia; Brotman, Shari
Women's health research strives to make change. It seeks to produce knowledge that promotes action on the variety of factors that affect women's lives and their health. As part of this general movement, important strides have been made to raise awareness of the health effects of sex and gender. The resultant base of knowledge has been used to inform health research, policy, and practice. Increasingly, however, the need to pay better attention to the inequities among women that are caused by racism, colonialism, ethnocentrism, heterosexism, and able-bodism, is confronting feminist health researchers and activists. Researchers are seeking new conceptual frameworks that can transform the design of research to produce knowledge that captures how systems of discrimination or subordination overlap and "articulate" with one another. An emerging paradigm for women's health research is intersectionality. Intersectionality places an explicit focus on differences among groups and seeks to illuminate various interacting social factors that affect human lives, including social locations, health status, and quality of life. This paper will draw on recently emerging intersectionality research in the Canadian women's health context in order to explore the promises and practical challenges of the processes involved in applying an intersectionality paradigm. We begin with a brief overview of why the need for an intersectionality approach has emerged within the context of women's health research and introduce current thinking about how intersectionality can inform and transform health research more broadly. We then highlight novel Canadian research that is grappling with the challenges in addressing issues of difference and diversity. In the analysis of these examples, we focus on a largely uninvestigated aspect of intersectionality research - the challenges involved in the process of initiating and developing such projects and, in particular, the meaning and significance of social
Full Text Available Abstract Women's health research strives to make change. It seeks to produce knowledge that promotes action on the variety of factors that affect women's lives and their health. As part of this general movement, important strides have been made to raise awareness of the health effects of sex and gender. The resultant base of knowledge has been used to inform health research, policy, and practice. Increasingly, however, the need to pay better attention to the inequities among women that are caused by racism, colonialism, ethnocentrism, heterosexism, and able-bodism, is confronting feminist health researchers and activists. Researchers are seeking new conceptual frameworks that can transform the design of research to produce knowledge that captures how systems of discrimination or subordination overlap and "articulate" with one another. An emerging paradigm for women's health research is intersectionality. Intersectionality places an explicit focus on differences among groups and seeks to illuminate various interacting social factors that affect human lives, including social locations, health status, and quality of life. This paper will draw on recently emerging intersectionality research in the Canadian women's health context in order to explore the promises and practical challenges of the processes involved in applying an intersectionality paradigm. We begin with a brief overview of why the need for an intersectionality approach has emerged within the context of women's health research and introduce current thinking about how intersectionality can inform and transform health research more broadly. We then highlight novel Canadian research that is grappling with the challenges in addressing issues of difference and diversity. In the analysis of these examples, we focus on a largely uninvestigated aspect of intersectionality research - the challenges involved in the process of initiating and developing such projects and, in particular, the meaning
Vance, Connie; Larson, Elaine
To summarize research on leadership in the health care and business literature and to identify the outcomes of leadership on individuals, groups, and organizations. A computerized search and review of research studies was conducted in the health care and business literature from 1970-1999. Studies were categorized and analyzed according to participants, design, primary topic area, and effects or outcomes of leadership. Most of the health care and business literature on leadership consisted of anecdotal or theoretical discussion. Only 4.4% (n = 290) of 6,628 articles reviewed were data-based. Further, the largest proportion of the research (120/290, 41.4%) was purely descriptive of the demographic characteristics or personality traits of leaders. Other studies showed the influence of leadership on subordinates (27.9%). Only 15 (5.2%) of 290 research articles include correlations of qualities or styles of leadership with measurable outcomes on the recipients of services or positive changes in organizations. Research on leadership in the health care and business literature to date has been primarily descriptive. Although work in the social sciences indicates that leadership styles can have a major influence on performance and outcomes, minimal transfer of this work to the health care system is evident. Limited research on leadership and health care outcomes exists, such as changes in patient care or improvements in organizational outputs. In this era of evidence-based practice, such research, although difficult to conduct, is urgently needed.
Koenig, Harold G.
This paper provides a concise but comprehensive review of research on religion/spirituality (R/S) and both mental health and physical health. It is based on a systematic review of original data-based quantitative research published in peer-reviewed journals between 1872 and 2010, including a few seminal articles published since 2010. First, I provide a brief historical background to set the stage. Then I review research on R/S and mental health, examining relationships with both positive and negative mental health outcomes, where positive outcomes include well-being, happiness, hope, optimism, and gratefulness, and negative outcomes involve depression, suicide, anxiety, psychosis, substance abuse, delinquency/crime, marital instability, and personality traits (positive and negative). I then explain how and why R/S might influence mental health. Next, I review research on R/S and health behaviors such as physical activity, cigarette smoking, diet, and sexual practices, followed by a review of relationships between R/S and heart disease, hypertension, cerebrovascular disease, Alzheimer's disease and dementia, immune functions, endocrine functions, cancer, overall mortality, physical disability, pain, and somatic symptoms. I then present a theoretical model explaining how R/S might influence physical health. Finally, I discuss what health professionals should do in light of these research findings and make recommendations in this regard. PMID:23762764
Townsend, Elizabeth; Birch, Diane E.; Langley, Jack; Langille, Lynn
A 2-year ethnographic study of a clubhouse for people with long-term mental illness involved club members in particpatory research. The study explored questions of what is research and who drives it. A critical perspective on the social organization of knowledge and power inequities between participants was highlighted. (SK)
Mjøsund, Nina Helen; Eriksson, Monica; Espnes, Geir Arild; Haaland-Øverby, Mette; Jensen, Sven Liang; Norheim, Irene; Kjus, Solveig Helene Høymork; Portaasen, Inger-Lill; Vinje, Hege Forbech
The aim of this study was to examine how service user involvement can contribute to the development of interpretative phenomenological analysis methodology and enhance research quality. Interpretative phenomenological analysis is a qualitative methodology used in nursing research internationally to understand human experiences that are essential to the participants. Service user involvement is requested in nursing research. We share experiences from 4 years of collaboration (2012-2015) on a mental health promotion project, which involved an advisory team. Five research advisors either with a diagnosis or related to a person with severe mental illness constituted the team. They collaborated with the research fellow throughout the entire research process and have co-authored this article. We examined the joint process of analysing the empirical data from interviews. Our analytical discussions were audiotaped, transcribed and subsequently interpreted following the guidelines for good qualitative analysis in interpretative phenomenological analysis studies. The advisory team became 'the researcher's helping hand'. Multiple perspectives influenced the qualitative analysis, which gave more insightful interpretations of nuances, complexity, richness or ambiguity in the interviewed participants' accounts. The outcome of the service user involvement was increased breadth and depth in findings. Service user involvement improved the research quality in a nursing research project on mental health promotion. The interpretative element of interpretative phenomenological analysis was enhanced by the emergence of multiple perspectives in the qualitative analysis of the empirical data. We argue that service user involvement and interpretative phenomenological analysis methodology can mutually reinforce each other and strengthen qualitative methodology. © 2016 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.
Fouzi El Magraoui
Full Text Available Autophagy is an evolutionarily-conserved process that delivers diverse cytoplasmic components to the lysosomal compartment for either recycling or degradation. This involves the removal of protein aggregates, the turnover of organelles, as well as the elimination of intracellular pathogens. In this situation, when only specific cargoes should be targeted to the lysosome, the potential targets can be selectively marked by the attachment of ubiquitin in order to be recognized by autophagy-receptors. Ubiquitination plays a central role in this process, because it regulates early signaling events during the induction of autophagy and is also used as a degradation-tag on the potential autophagic cargo protein. Here, we review how the ubiquitin-dependent steps of autophagy are balanced or counteracted by deubiquitination events. Moreover, we highlight the functional role of the corresponding deubiquitinating enzymes and discuss how they might be involved in the occurrence of cancer, neurodegenerative diseases or infection with pathogenic bacteria.
Each year in Canada, the costs of disability arising from work-related causes – including workers’ compensation and health-care costs – exceed $6.7 billion. Despite the significant financial and social impacts of worker injury and illness, only a small fraction of Canadian researchers are dedicated...... to examining work disability prevention issues. An innovative program that attracts international students, the Work Disability Prevention Canadian Institutes of Health Research (CIHR) Strategic Training Program, aims to build research capacity in young researchers and to create a strong network that examines...
Milnes, Linda; Kendal, Sarah
Latif et al’s (2017) paper is a valuable addition to knowledge in this field. It highlights the need to improve the education of registered children’s nurses in the care of children and young people (CYP) with physical health problems related to self-harm.
Roeser, Robert W.; Midgley, Carol
Examined elementary teachers' views regarding students' mental health needs. Found that almost all believed that addressing these needs was part of their role but also felt somewhat burdened by this responsibility. Sense of efficacy and reported use of task-focused instruction were negatively associated with feelings of burden. Teachers were good…
Spitters, H.P.E.M.; van de Goor, L.A.M.; Juel Lau, C.; Sandu, P.; Eklund Karlsson, L.; Jansen, J.; van Oers, J.A.M.
Since public health problems are complex and the related policies need to address a wide range of sectors, cross-sectoral collaboration is beneficial. One intervention focusing on stimulating collaboration is a 'policy game'. The focus on specific problems facilitates relationships between the
El Magraoui, Fouzi; Reidick, Christina; Meyer, Hemut E.; Platta, Harald W.
Autophagy is an evolutionarily-conserved process that delivers diverse cytoplasmic components to the lysosomal compartment for either recycling or degradation. This involves the removal of protein aggregates, the turnover of organelles, as well as the elimination of intracellular pathogens. In this situation, when only specific cargoes should be targeted to the lysosome, the potential targets can be selectively marked by the attachment of ubiquitin in order to be recognized by autophagy-recep...
Sep 12, 2012 ... Research Award: Ecosystems and Human Health (Ecohealth) ... Your proposal should demonstrate an understanding of the ... demonstrated ability to work independently, and strong written and oral communications skills are ...
These technical specifications define the key limitations that must be observed for safe operation of the Health Physics Research Reactor (HPRR) and an envelope of operation within which there is assurance that these limits will not be exceeded
International Journal of Health Research: Submissions ... The journal is devoted to the promotion of pharmaceutical sciences and related disciplines ... adverse drug events, medical and other life sciences, and related engineering fields).
Giving girls and women the power to decide. Addressing Africa's unmet need for family planning by intensifying sexual and reproductive and adolescent health research. View moreGiving girls and women the power to decide ...
Abma, T.A.; Pittens, C.A.C.M.; Visse, M.; Elberse, J.E.; Broerse, J.E.W.
Background: The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research
Cowie, Martin R.; Blomster, Juuso I.; Curtis, Lesley H.; Duclaux, Sylvie; Ford, Ian; Fritz, Fleur; Goldman, Samantha; Janmohamed, Salim; Kreuzer, J?rg; Leenay, Mark; Michel, Alexander; Ong, Seleen; Pell, Jill P.; Southworth, Mary Ross; Stough, Wendy Gattis
Electronic health records (EHRs) provide opportunities to enhance patient care, embed performance measures in clinical practice, and facilitate clinical research. Concerns have been raised about the increasing recruitment challenges in trials, burdensome and obtrusive data collection, and uncertain generalizability of the results. Leveraging electronic health records to counterbalance these trends is an area of intense interest. The initial applications of electronic health records, as the pr...
Cowie, Martin R; Blomster, Juuso I; Curtis, Lesley H; Duclaux, Sylvie; Ford, Ian; Fritz, Fleur; Goldman, Samantha; Janmohamed, Salim; Kreuzer, Jörg; Leenay, Mark; Michel, Alexander; Ong, Seleen; Pell, Jill P; Southworth, Mary Ross; Stough, Wendy Gattis; Thoenes, Martin; Zannad, Faiez; Zalewski, Andrew
Electronic health records (EHRs) provide opportunities to enhance patient care, embed performance measures in clinical practice, and facilitate clinical research. Concerns have been raised about the increasing recruitment challenges in trials, burdensome and obtrusive data collection, and uncertain generalizability of the results. Leveraging electronic health records to counterbalance these trends is an area of intense interest. The initial applications of electronic health records, as the primary data source is envisioned for observational studies, embedded pragmatic or post-marketing registry-based randomized studies, or comparative effectiveness studies. Advancing this approach to randomized clinical trials, electronic health records may potentially be used to assess study feasibility, to facilitate patient recruitment, and streamline data collection at baseline and follow-up. Ensuring data security and privacy, overcoming the challenges associated with linking diverse systems and maintaining infrastructure for repeat use of high quality data, are some of the challenges associated with using electronic health records in clinical research. Collaboration between academia, industry, regulatory bodies, policy makers, patients, and electronic health record vendors is critical for the greater use of electronic health records in clinical research. This manuscript identifies the key steps required to advance the role of electronic health records in cardiovascular clinical research.
Vrijheid, M.; Casas, M.; Bergström, A.; Carmichael, A.; Cordier, S.; Eggesbø, M.; Eller, E.; Fantini, M. P.; Fernández, M. F.; Fernández-Somoano, A.; Gehring, U.; Grazuleviciene, R.; Hohmann, C.; Karvonen, A. M.; Keil, T.; Kogevinas, M.; Koppen, G.; Krämer, U.; Kuehni, C. E.; Magnus, P.; Majewska, R.; Andersen, A. M. N.; Patelarou, E.; Petersen, M. S.; Pierik, F. H.; Polanska, K.; Porta, D.; Richiardi, L.; Santos, A. C.; Slama, R.; Šrám, Radim; Thijs, C.; Tischer, C.; Toft, G.; Trnovec, T.; Vandentorren, S.; Vrijkotte, T. G. M.; Wilhelm, M.; Wright, J.; Nieuwenhuijsen, M.
Roč. 120, č. 1 (2012), s. 29-37 ISSN 0091-6765 Institutional research plan: CEZ:AV0Z50390703 Keywords : environment pollution * child health * European birth cohorts Subject RIV: DN - Health Impact of the Environment Quality Impact factor: 7.260, year: 2012
Siegenthaler, K. L.
Research indicates that leisure participation enhances health at various levels, reducing stress and promoting better physical and mental health. Participation in personally meaningful leisure activities serves as a buffer to life's stressful events. Leisure professionals must work to promote leisure as a priority in people's lives. (SM)
Maes, Kenneth; Closser, Svea; Kalofonos, Ippolytos
Many actors in global health are concerned with improving community health worker (CHW) policy and practice to achieve universal health care. Ethnographic research can play an important role in providing information critical to the formation of effective CHW programs, by elucidating the life histories that shape CHWs' desires for alleviation of their own and others' economic and health challenges, and by addressing the working relationships that exist among CHWs, intended beneficiaries, and health officials. We briefly discuss ethnographic research with 3 groups of CHWs: volunteers involved in HIV/AIDS care and treatment support in Ethiopia and Mozambique and Lady Health Workers in Pakistan. We call for a broader application of ethnographic research to inform working relationships among CHWs, communities, and health institutions.
Spitters, Hilde; van de Goor, Ien; Juel Lau, Cathrine
Since public health problems are complex and the related policies need to address a wide range of sectors, cross-sectoral collaboration is beneficial. One intervention focusing on stimulating collaboration is a ‘policy game’. The focus on specific problems facilitates relationships between...... the stakeholders and stimulates cross-sectoral policymaking. The present study explores stakeholders’ learning experiences with respect to the collaboration process in public health policymaking. This was achieved via their game participation, carried out in real-life stakeholder networks in the Netherlands...... the collaboration processes in local policymaking. Specific learning experiences were related to: (i) the stakeholder network, (ii) interaction and (iii) relationships. The game also increased participant’s understanding of group dynamics and need for a coordinator in policymaking. This exploratory study shows...
Kearney, Anna; Williamson, Paula; Young, Bridget; Bagley, Heather; Gamble, Carrol; Denegri, Simon; Muir, Delia; Simon, Natalie A; Thomas, Stephen; Elliot, Jim T; Bulbeck, Helen; Crocker, Joanna C; Planner, Claire; Vale, Claire; Clarke, Mike; Sprosen, Tim; Woolfall, Kerry
Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement (PPI) in clinical trials. To identify the priorities of UK PPI stakeholders for methodological research to help resolve uncertainties about PPI in clinical trials. A modified Delphi process including a two round online survey and a stakeholder consensus meeting. In total, 237 people registered of whom 219 (92%) completed the first round. One hundred and eighty-seven of 219 (85%) completed the second; 25 stakeholders attended the consensus meeting. Round 1 of the survey comprised 36 topics; 42 topics were considered in round 2 and at the consensus meeting. Approximately 96% of meeting participants rated the top three topics as equally important. These were as follows: developing strong and productive working relationships between researchers and PPI contributors; exploring PPI practices in selecting trial outcomes of importance to patients; and a systematic review of PPI activity to improve the accessibility and usefulness of trial information (eg participant information sheets) for participants. The prioritized methodological research topics indicate important areas of uncertainty about PPI in trials. Addressing these uncertainties will be critical to enhancing PPI. Our findings should be used in the planning and funding of PPI in clinical trials to help focus research efforts and minimize waste. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
The World Health Organization (WHO) has been a leading intergovernmental organization in the effort to prevent diseases related to food and improve global food safety and security. These efforts have been focused on the provision of independent scientific advice on foodborne risks, the development...... the focus on simple and efficient messaging toward preventing food risks through a better understanding of good food preparation practices in all sectors....
Resnik, David B
Environmental health researchers often need to make difficult decisions on how to protect privacy and confidentiality when they conduct research in the home or workplace. These dilemmas are different from those normally encountered in clinical research. Although protecting privacy and confidentiality is one of the most important principles of research involving human subjects, it can be overridden to prevent imminent harm to individuals or if required by law. Investigators should carefully consider the facts and circumstances and use good judgment when deciding whether to breach privacy or confidentiality.
Full Text Available The directive 2001/20/UE and the research involving patients with docs. Research involving patients with disorders of consciousness (DOCs deserves special ethical and legal attention because of its Janus-faced nature. On the one hand, it raises concerns about the risk to expose the involved subjects to disproportionate risks not respecting their individual dignity, particularly their right to be cared for; on the other hand, research is an essential tool in order to improve the clinical condition of patients with DOCs. The present paper concerns the ethical and legal dimensions of biomedical research involving patients with disorders of consciousness. In particular, it focuses on informed consent to experimental treatments, which is a challenging issue both from an ethical and legal point of view. The first part reads the Directive 2001/20/EU in the light of the experimentation of patients with DOCs, and suggests a revision in order to better assess the issue of informed consent. The particular case of informed consent for observational studies of non-communicative patients. The second part presents an informed consent form for studies through video-recording of patients unable to communicate their own consent. This form has been elaborated by the bioethics unit of the project "Review of the nosography of vegetative states: application of methods of behavioral analysis to individuals in coma or vegetative state" developed at the Italian National Institute of Health. Relevance of the suggested form. The paper describes the conceptual framework of the form for informed consent to studies through video-recoding, which is a relevant example of what issues should be included in an informed consent for any type of studies through video-recording of patients unable to express their own consent. The article has been sent on November the 7th 2013, before the adoption of the Regulation (EU no. 536/2014 (and consequent abrogation of the Directive 2001
de Beer, Marie; Mason, Roger B.
This paper investigates a method for increasing the involvement of marketing fourth year learners in academic research, by encouraging greater participation in, and commitment to, their research project in the Applied Marketing IV subject. It is assumed that greater involvement will result in a greater pass rate. The main reasons for this lack of…
This commentary describes how the Brazilian Ministry of Health's (MoH) research support policy fulfilled the National Agenda of Priorities in Health Research (NAPHR). In 2003, the MoH started a democratic process in order to establish a priority agenda in health research involving investigators, health managers and community leaders. The Agenda was launched in 2004 and is guiding budget allocations in an attempt to reduce the gap between scientific knowledge and health practice and activities, aiming to contribute to improving Brazilian quality of life. Many strategies were developed, for instance: Cooperation Agreements between the Ministry of Health and the Ministry of Science and Technology; the decentralization of research support at state levels with the participation of local Health Secretariats and Science and Technology Institutions; Health Technology Assessment; innovation in neglected diseases; research networks and multicenter studies in adult, women's and children's health; cardiovascular risk in adolescents; clinical research and stem cell therapy. The budget allocated by the Ministry of Health and partners was expressive: US$419 million to support almost 3,600 projects. The three sub-agenda with the higher proportion of resources were "industrial health complex", "clinical research" and "communicable diseases", which are considered strategic for innovation and national development. The Southeast region conducted 40.5% of all projects and detained 59.7% of the resources, attributable to the concentration of the most traditional health research institutes and universities in the states of São Paulo and Rio de Janeiro. The second most granted region was the Northeast, which reflects the result of a governmental policy to integrate and modernize this densely populated area and the poorest region in the country. Although Brazil began the design and implementation of the NAPHR in 2003, it has done so in accordance with the 'good practice principles
Full Text Available Abstract This commentary describes how the Brazilian Ministry of Health's (MoH research support policy fulfilled the National Agenda of Priorities in Health Research (NAPHR. In 2003, the MoH started a democratic process in order to establish a priority agenda in health research involving investigators, health managers and community leaders. The Agenda was launched in 2004 and is guiding budget allocations in an attempt to reduce the gap between scientific knowledge and health practice and activities, aiming to contribute to improving Brazilian quality of life. Many strategies were developed, for instance: Cooperation Agreements between the Ministry of Health and the Ministry of Science and Technology; the decentralization of research support at state levels with the participation of local Health Secretariats and Science and Technology Institutions; Health Technology Assessment; innovation in neglected diseases; research networks and multicenter studies in adult, women's and children's health; cardiovascular risk in adolescents; clinical research and stem cell therapy. The budget allocated by the Ministry of Health and partners was expressive: US$419 million to support almost 3,600 projects. The three sub-agenda with the higher proportion of resources were "industrial health complex", "clinical research" and "communicable diseases", which are considered strategic for innovation and national development. The Southeast region conducted 40.5% of all projects and detained 59.7% of the resources, attributable to the concentration of the most traditional health research institutes and universities in the states of São Paulo and Rio de Janeiro. The second most granted region was the Northeast, which reflects the result of a governmental policy to integrate and modernize this densely populated area and the poorest region in the country. Although Brazil began the design and implementation of the NAPHR in 2003, it has done so in accordance with the 'good
Armour, Carol; Brillant, Martha; Krass, Ines
In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted. Three themes emerged around pharmacists' attitudes towards research: pharmacists' perception of the purpose of research, pharmacists' motivation for involvement in research, and pharmacists' desired role in research. Barriers to research participation were grouped into four themes: pharmacists' mindset, communication, infrastructure (time, money and staff), and skills/knowledge. Strategies to address each of these barriers were suggested. Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research projects.
Full Text Available In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. Objectives: To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. Methods: A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted.Results: Three themes emerged around pharmacists’ attitudes towards research: pharmacists’ perception of the purpose of research, pharmacists’ motivation for involvement in research, and pharmacists’ desired role in research. Barriers to research participation were grouped into four themes: pharmacists’ mindset, communication, infrastructure (time, money and staff, and skills/knowledge. Strategies to address each of these barriers were suggested.Conclusions: Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research
Fox, Molly; Thayer, Zaneta; Wadhwa, Pathik D
Acculturation represents an important construct in the context of health disparities. Although several studies have reported relationships between various aspects of acculturation and health in minority populations, crucial inconsistencies remain. One likely reason for these inconsistencies may relate to limitations in the conceptualization and operationalization of acculturation, particularly in the context of health research. The acculturation construct underwent major conceptual and operational change when it was adapted from anthropology to psychology, and we argue another major shift is now required for use of this construct in health research. Issues include determining whether acculturation measures should focus on an individual's internal attitudes or overt behaviors; whether they should characterize cultural orientation status at a given point in time or change over time; whether measures should be culture-specific or more global in nature; how the issue of multiculturalism should be addressed; how measures can optimally incorporate multiple dimensions of acculturation; and whether proxy measures should be used. These issues are important in the context of health research because of their implications for determining the direct and indirect effects of cultural change on health-related biological and behavioral processes. We elaborate on and address each of these issues from a perspective that spans multiple disciplines across the biological and social sciences, and offer concrete recommendations with the ultimate goal of achieving a better understanding of the role of acculturation in minority health and health disparities. Copyright © 2017 Elsevier Ltd. All rights reserved.
Fox, Molly; Thayer, Zaneta; Wadhwa, Pathik D.
Acculturation represents an important construct in the context of health disparities. Although several studies have reported relationships between various aspects of acculturation and health in minority populations, crucial inconsistencies remain. One likely reason for these inconsistencies may relate to limitations in the conceptualization and operationalization of acculturation, particularly in the context of health research. The acculturation construct underwent major conceptual and operational change when it was adapted from anthropology to psychology, and we argue another major shift is now required for use of this construct in health research. Issues include determining whether acculturation measures should focus on an individual’s internal attitudes or overt behaviors; whether they should characterize cultural orientation status at a given point in time or change over time; whether measures should be culture-specific or more global in nature; how the issue of multiculturalism should be addressed; how measures can optimally incorporate multiple dimensions of acculturation; and whether proxy measures should be used. These issues are important in the context of health research because of their implications for determining the direct and indirect effects of cultural change on health-related biological and behavioral processes. We elaborate on and address each of these issues from a perspective that spans multiple disciplines across the biological and social sciences, and offer concrete recommendations with the ultimate goal of achieving a better understanding of the role of acculturation in minority health and health disparities. PMID:28135691
... addressed in EPA science and ethics reviews of proposed and completed human research for pesticides, based... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides; Notification to... protection of human subjects of research that apply to third parties who conduct or support research for...
Bradley, Eleanor; Green, Debra
A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice. This UK study aimed to better understand how the family caregivers of those diagnosed with SMI are currently involved in decision making, particularly decisions about treatment options including prescribed medication. Objectives were to Explore the extent to which family members wish to be involved in decisions about prescribed medication Determine how and when professionals engage family in these decisions Identify barriers and facilitators associated with the engagement of family in decisions about treatment. Open-ended questions were sent to professionals and family members to elicit written responses. Qualitative responses were analysed thematically. Themes included the definition of involvement and "rules of engagement." Staff members are gatekeepers for family involvement, and the process is not democratic. Family and staff ascribe practical, rather than recovery-oriented roles to family, with pre-occupation around notions of adherence. Staff members need support, training and education to apply SDM. Time to exchange information is vital but practically difficult. Negotiated teams, comprising of staff, service users, family, peers as applicable, with ascribed roles and responsibilities could support SDM. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
No. 13 of Health Physics Research Abstracts is the continuation of a series of bulletins published by the IAEA since 1967 and which collect reports from Member States on health physics research in progress or just completed. The present issue contains 370 reports received up to March 1987 and covers the following topics: Personnel monitoring, dosimetry, assessment of dose to man, operational radiation protection techniques, radiation levels, effects of radiation, environmental studies, pathways and monitoring, analysis and evaluation of radiation hazards resulting from the operation of nuclear facilities, radiation accidents and emergency preparedness, epidemiology of radiation damage, optimization of radiation protection, research programmes and projects
The No. 12 of Health Physics Research Abstracts is the continuation of a series of Bulletins published by the IAEA since 1967 and which collect reports from Member States on Health Physics research in progress or just completed. The present issue contains 386 reports received up to December 1984 and covering the following topics: personnel monitoring, dosimetry, assessment of dose to man, operational radiation protection techniques, biological effects of radiations, environmental studies, pathways and monitoring, radiation hazards resulting from the operation of nuclear facilities, radiation accidents and emergency plans, epidemiology of radiation damage, optimization of radiation protection, research programs and projects
Full Text Available The study sought to identify key issues regarding parental involvement within a health promoting school (HPS approach directed at addressing children’s nutrition and physical activity. A case study research design was used, involving six primary schools in Auckland, New Zealand. Data were collected via six individual interviews with principals, six group interviews with a total of 26 teachers, 13 focus groups with a total of 92 children, and a survey of 229 parents. The study found that while schools agreed on the importance of schools and parents promoting the same healthy behaviours, there was a lack of agreement on the role of school staff in educating parents. School principals identified issues around managing the food brought from home and the extent to which they should regulate types of food. Parents stressed the importance of modelling healthy food and exercise practices in the home environment but identified factors that often made this difficult, a scenario that did not go unnoticed by their children. It is recommended that parental involvement be encouraged and supported so that schools and families can achieve consistency in health promotion practices across both school and home environments.
Full Text Available Measurement of the impact and influence of medical/scientific journals, and of individual researchers has become more widely practiced in recent decades. This is driven, in part, by the increased availability of data regarding citations of research articles, and by increased competition for research funding. Digestive disease research has been identified as a particularly strong discipline in Canada. The authors collected quantitative data on the impact and influence of Canadian digestive health research. The present study involved an analysis of the research impact (Hirsch factor and research influence (Influence factor of 106 digestive health researchers in Canada. Rankings of the top 25 researchers on the basis of the two metrics were dominated by the larger research groups at the University of Toronto (Toronto, Ontario, McMaster University (Hamilton, Ontario, and the Universities of Calgary (Calgary, Alberta and Alberta (Edmonton, Alberta, but with representation by other research groups at the Universities of Manitoba (Winnipeg, Manitoba, Western Ontario (London, Ontario and McGill University (Montreal, Quebec. Female and male researchers had similar scores for the two metrics, as did basic scientists versus clinical investigators. Strategic recruitment, particularly of established investigators, can have a major impact on the ranking of research groups. Comparing these metrics over different time frames can provide insights into the vulnerabilities and strengths of research groups.
Riggs, Elisha; Yelland, Jane; Szwarc, Josef; Casey, Sue; Chesters, Donna; Duell-Piening, Philippa; Wahidi, Sayed; Fouladi, Fatema; Brown, Stephanie
With mounting evidence that poor maternal and child health outcomes are related to the social determinants of health, researchers need to engage with vulnerable and isolated communities to gather the evidence that is essential to determine appropriate solutions. Conventional research methods may not ensure the degree and quality of participation that is necessary for meaningful study findings. Participatory methods provide reciprocal opportunities for often excluded communities to both take part in, and guide the conduct of research. The Having a baby in a new country research project was undertaken to provide evidence about how women and men of refugee background experience health services at the time of having a baby. This two year, multifaceted proof of concept study comprised: 1) an organisational partnership to oversee the project; 2) a community engagement framework including: female and male Afghan community researchers, community and sector stakeholder advisory groups and community consultation and engagement. Inclusive research strategies that address power imbalances in research, and diversity of and within communities, are necessary to obtain the evidence required to address health inequalities in vulnerable populations. Such an approach involves mindfully adapting research processes to ensure that studies have regard for the advice of community members about the issues that affect them. Researchers have much to gain by committing time and resources to engaging communities in reciprocal ways in research processes.
Brender, Jytte; Nøhr, Christian; McNair, Peter
A Delphi study was accomplished on the topic "what is needed to implement the information society within healthcare? and which research topics should be given higher priority than other topics to achieve the desired evolution?", involving 29 international experts. The study was comprised of four....... In contrast, only a minority of the research issues emphasised was related to technical issues. (C) 2000 Elsevier Science Ireland Ltd. All rights reserved....... research items and 58 supplementary barriers were raised, divided into 14 topics grouped according to homogeneity. The emphasised research topics are business process re-engineering, the electronic patient record and connected inter-operating systems, (support for) evidence-based medicine and clinical...
van Teijlingen, E; Simkhada, B; Porter, M; Simkhada, P; Pitchforth, E; Bhatta, P
There has been a steady growth in recent decades in Nepal in health and health services research, much of it based on quantitative research methods. Over the same period international medical journals such as The Lancet, the British Medical Journal (BMJ), The Journal of the American Medical Association (JAMA) and the Journal of Family Planning and Reproductive Health Care and many more have published methods papers outlining and promoting qualitative methods. This paper argues in favour of more high-quality qualitative research in Nepal, either on its own or as part of a mixed-methods approach, to help strengthen the country's research capacity. After outlining the reasons for using qualitative methods, we discuss the strengths and weaknesses of the three main approaches: (a) observation; (b) in-depth interviews; and (c) focus groups. We also discuss issues around sampling, analysis, presentation of findings, reflexivity of the qualitative researcher and theory building, and highlight some misconceptions about qualitative research and mistakes commonly made.
Bedregal, Paula; Besoain, Carolina; Reinoso, Alejandro; Zubarew, Tamara
Health care research requires different methodological approaches such as qualitative and quantitative analyzes to understand the phenomena under study. Qualitative research is usually the least considered. Central elements of the qualitative method are that the object of study is constituted by perceptions, emotions and beliefs, non-random sampling by purpose, circular process of knowledge construction, and methodological rigor throughout the research process, from quality design to the consistency of results. The objective of this work is to contribute to the methodological knowledge about qualitative research in health services, based on the implementation of the study, The transition process from pediatric to adult services: perspectives from adolescents with chronic diseases, caregivers and health professionals. The information gathered through the qualitative methodology facilitated the understanding of critical points, barriers and facilitators of the transition process of adolescents with chronic diseases, considering the perspective of users and the health team. This study allowed the design of a transition services model from pediatric to adult health services based on the needs of adolescents with chronic diseases, their caregivers and the health team.
Goggins, KM; Wallston, KA; Nwosu, S; Schildcrout, JS; Castel, L; Kripalani, S
Little research has examined the association of health literacy and numeracy with patients' preferred involvement in the problem-solving and decision-making process in the hospital. Using a sample of 1,249 patients hospitalized with cardiovascular disease from the Vanderbilt Inpatient Cohort Study (VICS), we assessed patients' preferred level of involvement using responses to two scenarios of differing symptom severity from the Problem-Solving Decision-Making (PSDM) Scale. Using multivariable...
Cook, Kay E
This article contributes to the debate about the use of reliability assessments in qualitative research in general, and health promotion research in particular. In this article, I examine the use of reliability assessments in qualitative health promotion research in response to health promotion researchers' commonly held misconception that reliability assessments improve the rigor of qualitative research. All qualitative articles published in the journal Health Promotion International from 2003 to 2009 employing reliability assessments were examined. In total, 31.3% (20/64) articles employed some form of reliability assessment. The use of reliability assessments increased over the study period, ranging from qualitative articles decreased. The articles were then classified into four types of reliability assessments, including the verification of thematic codes, the use of inter-rater reliability statistics, congruence in team coding and congruence in coding across sites. The merits of each type were discussed, with the subsequent discussion focusing on the deductive nature of reliable thematic coding, the limited depth of immediately verifiable data and the usefulness of such studies to health promotion and the advancement of the qualitative paradigm.
Amy J. Elliott
Full Text Available The Collaborative Research Center for American Indian Health (CRCAIH was established in September 2012 as a unifying structure to bring together tribal communities and health researchers across South Dakota, North Dakota and Minnesota to address American Indian/Alaska Native (AI/AN health disparities. CRCAIH is based on the core values of transdisciplinary research, sustainability and tribal sovereignty. All CRCAIH resources and activities revolve around the central aim of assisting tribes with establishing and advancing their own research infrastructures and agendas, as well as increasing AI/AN health research. CRCAIH is comprised of three divisions (administrative; community engagement and innovation; research projects, three technical cores (culture, science and bioethics; regulatory knowledge; and methodology, six tribal partners and supports numerous multi-year and one-year pilot research projects. Under the ultimate goal of improving health for AI/AN, this paper describes the overarching vision and structure of CRCAIH, highlighting lessons learned in the first three years.
Haglund, Bo J A; Tillgren, Per
Based on the storytelling tradition and analyses of conference material, this article provides an overview of the evolving Nordic Health Promotion Research Network (NHPRN) and its conferences over the last 20 years. The story goes from the planning of the first conference in Bergen, Norway, back in 1996 to the eighth conference in Jyväskylä, Finland, in 2016. There have been three phases of development. During the first phase, 1996-2007, the five first conferences were initiated and implemented by departments of public health in the Nordic countries. The World Health Organization (WHO) collaborative centres of Health Promotion in Bergen University and a group at Karolinska Institute, Department of Social Medicine, creating supportive environments for health in Stockholm played key roles in initiating and supporting NHPRN. During the second phase, 2007-2014, the network was strengthened and supported by the Nordic School of Public Health (NHV) in Gothenburg. The third phase started when NHV closed down in 2015 and networking activities were transferred to the European Office of WHO in Copenhagen. The Nordic Health Promotion Research Conference series has served several purposes and will continue to do so. They are important Nordic meeting places, stimulating Health Promotion research, as well as explicitly managing ongoing concerns in the international Health Promotion community. This is reflected in the shift of foci over time. The content of the conferences has been highly responsive to whatever challenges are particularly relevant at different points in time, while also contributing to developing Health Promotion as a discipline, given that every conference has built on the previous ones.
This is a short account of a 40-year-old health and environmental research program performed in national laboratories, universities, and research institutes. Under the sponsorship of the federal agencies that were consecutively responsible for the national energy mission, this research program has contributed to the understanding of the human health and environmental effects of emergining energy technologies. In so doing, it has also evolved several nuclear techniques for the diagnosis and treatment of human ills. The form of this presentation is through examples of significant, tangible accomplishments in each of these areas at certain times to illustrate the role and impact of the research program. The narrative of this research program concludes with a perspective of its past and a prospectus on its future.
Rae, John; Green, Bill
A model is proposed for supporting reflexivity in qualitative health research, informed by arguments from Bourdieu and Finlay. Bourdieu refers to mastering the subjective relation to the object at three levels-the overall social space, the field of specialists, and the scholastic universe. The model overlays Bourdieu's levels of objectivation with Finlay's three stages of research (pre-research, data collection, and data analysis). The intersections of these two ways of considering reflexivity, displayed as cells of a matrix, pose questions and offer prompts to productively challenge health researchers' reflexivity. Portraiture is used to show how these challenges and prompts can facilitate such reflexivity, as illustrated in a research project. © The Author(s) 2016.
Raman, Sudha R; Curtis, Lesley H; Temple, Robert; Andersson, Tomas; Ezekowitz, Justin; Ford, Ian; James, Stefan; Marsolo, Keith; Mirhaji, Parsa; Rocca, Mitra; Rothman, Russell L; Sethuraman, Barathi; Stockbridge, Norman; Terry, Sharon; Wasserman, Scott M; Peterson, Eric D; Hernandez, Adrian F
Electronic health records (EHRs) can be a major tool in the quest to decrease costs and timelines of clinical trial research, generate better evidence for clinical decision making, and advance health care. Over the past decade, EHRs have increasingly offered opportunities to speed up, streamline, and enhance clinical research. EHRs offer a wide range of possible uses in clinical trials, including assisting with prestudy feasibility assessment, patient recruitment, and data capture in care delivery. To fully appreciate these opportunities, health care stakeholders must come together to face critical challenges in leveraging EHR data, including data quality/completeness, information security, stakeholder engagement, and increasing the scale of research infrastructure and related governance. Leaders from academia, government, industry, and professional societies representing patient, provider, researcher, industry, and regulator perspectives convened the Leveraging EHR for Clinical Research Now! Think Tank in Washington, DC (February 18-19, 2016), to identify barriers to using EHRs in clinical research and to generate potential solutions. Think tank members identified a broad range of issues surrounding the use of EHRs in research and proposed a variety of solutions. Recognizing the challenges, the participants identified the urgent need to look more deeply at previous efforts to use these data, share lessons learned, and develop a multidisciplinary agenda for best practices for using EHRs in clinical research. We report the proceedings from this think tank meeting in the following paper. Copyright © 2018 Elsevier, Inc. All rights reserved.
Nielsen, Stine Frydendal; Ottesen, Laila; Thing, Lone Friis
Established and outsider relations among students involved in a health promotion intervention in a Danish high school. Stine Frydendal Nielsen1, Laila Ottesen2, Lone Friis Thing2, 1Rysensteen Gymnasium, 2University of Copenhagen The paper considers a study in a Danish high school in which students...... that maintaining health promotion interventions is difficult (Laitakari et al 1996). Therefore, in contemporary health promotion research, there is an increasing demand for enhancing active participation by the community (Haug, Torsheim, and Samdal, 2009). The study is based on the interpretative and process......-oriented methodology developed by Baur and Ernst (2011). They base this approach on Elias’ argument on involvement and detachment (Elias 1956) and the importance of theoretical pointers to insure that the researcher doesn’t loose herself in the research field. Elias unfolds this methodological approach in “The...
In this 1977 Environmental Message, President Carter directed the establishment of a joint program to identify the health and environmental problems associated with advanced energy technologies and to review the adequacy of present research programs. In response to the President's directive, representatives of three agencies formed the Federal Interagency Committee on the Health and Environmental Effects of Energy Technologies. This report was prepared by the Health Effects Working Group on Coal Technologies for the Committee. In this report, the major health-related problems associated with conventional coal mining, storage, transportation, and combustion, and with chemical coal cleaning, in situ gasification, fluidized bed combustion, magnetohydrodynamic combustion, cocombustion of coal-oil mixtures, and cocombustion of coal with municipal solid waste are identified. The report also contains recommended research required to address the identified problems.
Kuhlmann, Ellen; Burau, Viola
There is now widespread agreement on the benefits of an integrated, people-centred health workforce, but the implementation of new models is difficult. We argue that we need to think about stakeholders and power, if we want to ensure change in the health workforce. We discuss these issues from a governance perspective and suggest a critical approach to stakeholder involvement as an indicator of good governance. Three models of involving stakeholders in health workforce governance can be identified: corporatist professional involvement either in a continental European model of conservative corporatism or in a Nordic model of public corporatism; managerialist and market-centred involvement of professions as organizational agents; and a more inclusive, network-based involvement of plural professional experts at different levels of governance. The power relations embedded in these models of stakeholder involvement have different effects on capacity building for an integrated health workforce.
Rezansoff, Stefanie N; Moniruzzaman, Akm; Clark, Elenore; Somers, Julian M
The majority of Drug Treatment Court (DTC) research has examined the impact of DTCs on criminal recidivism. Comparatively little research has addressed the association between DTC participation and engagement with community-based health and social services. The present study investigated changes in participant involvement with outpatient healthcare and income assistance within a DTC cohort. We hypothesized that involvement with community-based (outpatient) health and social services would increase post-DTC participation, and that service levels would be higher among program graduates and offenders with histories of co-occurring mental and substance use disorders. Participants were 631 offenders at the DTC in Vancouver, Canada (DTCV). Administrative data representing hospital, outpatient medical care, and income assistance were examined one-year pre/post program to assess differences over time. Generalized estimating equations were used to investigate the association between changes in service use and program involvement. We also examined the relationship between level of service use and offender characteristics. Members of the cohort were disproportionately Aboriginal (33 %), had been sentenced 2.7 times in the 2 years preceding their index offence, and 50 % had been diagnosed with a non substance-related mental disorder in the five years preceding the index offence. The mean number of outpatient services post DTCV was 51, and the mean amount of social assistance paid was $5,897. Outpatient service use increased following exposure to DTCV (Adjusted Rate Ratio (ARR) = 1.45) and was significantly higher among women (ARR = 1.47), program graduation (ARR = 1.23), and those previously diagnosed with concurrent substance use and mental disorders (ARR = 4.92). Overall, hospital admissions did not increase post-program, although rates were significantly higher among women (ARR = 1.76) and those with concurrent disorders (ARR = 2.71). Income
Osei-Twum, Jo-Ann; Wasan, Kishor M
Ensuring the health of street-involved children is a growing public health challenge. These children are vulnerable, neglected, and rarely a priority for basic service providers and governments. Sizable populations of street-involved children are present in major urban areas worldwide and current trends in urbanization suggest these populations will grow in the coming years. Although migration offers employment and training opportunities, the health and wellbeing of children is negatively impacted by their interactions with the streets. However, systemic barriers may also prevent these children from achieving an adequate health status. The situation of street-involved children in Ghana, West Africa will be discussed. Copyright © 2012 Wiley Periodicals, Inc.
Against a background of increasing demands on limited resources, health economics is gaining an increasing impact on decision making and a basic understanding of the subject is important for all those involved in headache research and service delivery at whatever level. This paper is not intended as a review of the literature in the area of headache economics but discusses some general principles of health economics from the perspective of headache, with a focus on cost of illness studies and economic evaluation.
A review is given of the uses of particle accelerators in health physics, the text being a short course given at the Health Physics Society Ninth Midyear Topical Symposium in February, 1976. Topics discussed include: (1) the radiation environment of high energy accelerators; (2) dosimetry at research accelerators; (3) shielding; (4) induced activity; (5) environmental impact of high energy accelerators; (6) population dose equivalent calculation; and (7) the application of the ''as low as practicable concept'' at accelerators
Full Text Available Abstract Introduction Atoifi Adventist Hospital is a 90 bed general hospital in East Kwaio, Malaita, Solomon Islands providing services to the population of subsistence villagers of the region. Health professionals at the hospital and attached College of Nursing have considerable human capacity and willingness to undertake health research. However they are constrained by limited research experience, training opportunities, research systems, physical infrastructure and access to resources. This brief commentary describes an 'Introduction to Health Research' workshop delivered at Atoifi Adventist Hospital in September 2009 and efforts to move from 'research workshop' to 'research work'. The Approach Using a participatory-action research approach underpinned by decolonising methodologies, staff from Atoifi Adventist Hospital and James Cook University (Queensland, Australia collaboratively designed, implemented and evaluated a health research workshop. Basic health research principles and methods were presented using active learning methodologies. Following the workshop, Atoifi Adventist Hospital and Atoifi College of Nursing staff, other professionals and community members reported an increased awareness and understanding of health research. The formation of a local Research Committee, improved ethics review procedures and the identification of local research mentors followed the week long workshop. The workshop has acted as a catalyst for research activity, increasing structural and human resource capacity for local health professionals and community leaders to engage in research. Discussion and Conclusions Participants from a variety of educational backgrounds participated in, and received benefit from, a responsive, culturally and linguistically accessible health research workshop. Improving health research systems at a remote hospital and aligning these with local and national research agendas is establishing a base to strengthen public health
Ferguson H Bruce
Full Text Available Abstract Background Children with emotional and behavioural disorders should be able to count on receiving care that meets their needs and is based on the best scientific evidence available, however, many do not receive these services. Implementation of evidence-based practice (EBP relies, in part, on the research utilization practices of mental health care providers. This study reports on a survey of research utilization practices among 80 children's mental health (CMH service provider organizations in Ontario, Canada. Methods A web-based survey was distributed to 80 CMH service provider organizations, to which 51 executive directors and 483 children's mental health practitioners responded. Research utilization was assessed using questions with Likert-type responses based on the Canadian Health Services Research Foundation's Four-A's approach: access, assess, adapt, apply. Results There was general agreement among executive directors and practitioners regarding the capacity of their organizations to use – access, assess, adapt, and apply – research evidence. Overall, both groups rated their organizations as using research information 'somewhat well.' The low response rate to the practitioner survey should be noted. Conclusion These findings provide a useful benchmark from which changes in reported research utilization in the Ontario CMH sector can be tracked over time, as a function of EBP training and implementation initiatives, for instance. The need to improve access to research evidence should be addressed because it relates to the eventual implementation and uptake of evidence-based practices. Communities of practice are recommended as a strategy that would enable practitioners to build capacity in their adaptation and application of research evidence.
Barwick, Melanie A; Boydell, Katherine M; Stasiulis, Elaine; Ferguson, H Bruce; Blase, Karen; Fixsen, Dean
Children with emotional and behavioural disorders should be able to count on receiving care that meets their needs and is based on the best scientific evidence available, however, many do not receive these services. Implementation of evidence-based practice (EBP) relies, in part, on the research utilization practices of mental health care providers. This study reports on a survey of research utilization practices among 80 children's mental health (CMH) service provider organizations in Ontario, Canada. A web-based survey was distributed to 80 CMH service provider organizations, to which 51 executive directors and 483 children's mental health practitioners responded. Research utilization was assessed using questions with Likert-type responses based on the Canadian Health Services Research Foundation's Four-A's approach: access, assess, adapt, apply. There was general agreement among executive directors and practitioners regarding the capacity of their organizations to use - access, assess, adapt, and apply - research evidence. Overall, both groups rated their organizations as using research information 'somewhat well.' The low response rate to the practitioner survey should be noted. These findings provide a useful benchmark from which changes in reported research utilization in the Ontario CMH sector can be tracked over time, as a function of EBP training and implementation initiatives, for instance. The need to improve access to research evidence should be addressed because it relates to the eventual implementation and uptake of evidence-based practices. Communities of practice are recommended as a strategy that would enable practitioners to build capacity in their adaptation and application of research evidence.
Medical research on minors entails both risks and benefits. Under Swiss law, clinical trials on children, including nontherapeutic drug trials, are permissible. However, ethics committees must systematically verify that all clinical studies have a favorable risk-benefit profile. Additional safeguards are designed to ensure that children are not unnecessarily involved in research and that proper consent is always obtained. Federal Swiss law is undergoing revision to extend these protections beyond clinical trials to a broad array of health research. The Swiss drug agency also seeks to improve the incentives for pharmaceutical firms to develop new paediatric drugs and relevant paediatric drug labels.
Carpenter, Delesha M; Geryk, Lorie L; Chen, Annie T; Nagler, Rebekah H; Dieckmann, Nathan F; Han, Paul K J
Conflicting health information is increasing in amount and visibility, as evidenced most recently by the controversy surrounding the risks and benefits of childhood vaccinations. The mechanisms through which conflicting information affects individuals are poorly understood; thus, we are unprepared to help people process conflicting information when making important health decisions. In this viewpoint article, we describe this problem, summarize insights from the existing literature on the prevalence and effects of conflicting health information, and identify important knowledge gaps. We propose a working definition of conflicting health information and describe a conceptual typology to guide future research in this area. The typology classifies conflicting information according to four fundamental dimensions: the substantive issue under conflict, the number of conflicting sources (multiplicity), the degree of evidence heterogeneity and the degree of temporal inconsistency. © 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Tuffrey-Wijne, Irene; Butler, Gary
People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. To examine the potential contribution of people with learning disabilities to data analysis in qualitative research. This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross-compared with the analysis of other members of the research team. The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers. It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for.
Semrau, Maya; Lempp, Heidi; Keynejad, Roxanne; Evans-Lacko, Sara; Mugisha, James; Raja, Shoba; Lamichhane, Jagannath; Alem, Atalay; Thornicroft, Graham; Hanlon, Charlotte
The involvement of mental health service users and their caregivers in health system policy and planning, service monitoring and research can contribute to mental health system strengthening, but as yet there have been very few efforts to do so in low- and middle-income countries (LMICs). This systematic review examined the evidence and experience of service user and caregiver involvement in mental health system strengthening, as well as models of best practice for evaluation of capacity-building activities that facilitate their greater participation. Both the peer-reviewed and the grey literature were included in the review, which were identified through database searches (MEDLINE, Embase, PsycINFO, Web of Knowledge, Web of Science, Scopus, CINAHL, LILACS, SciELO, Google Scholar and Cochrane), as well as hand-searching of reference lists and the internet, and a snowballing process of contacting experts active in the area. This review included any kind of study design that described or evaluated service user, family or caregiver (though not community) involvement in LMICs (including service users with intellectual disabilities, dementia, or child and adolescent mental health problems) and that were relevant to mental health system strengthening across five categories. Data were extracted and summarised as a narrative review. Twenty papers matched the inclusion criteria. Overall, the review found that although there were examples of service user and caregiver involvement in mental health system strengthening in numerous countries, there was a lack of high-quality research and a weak evidence base for the work that was being conducted across countries. However, there was some emerging research on the development of policies and strategies, including advocacy work, and to a lesser extent the development of services, service monitoring and evaluation, with most service user involvement having taken place within advocacy and service delivery. Research was scarce within
Represented speech refers to speech where we reference somebody. Represented speech is an important phenomenon in everyday conversation, health care communication, and qualitative research. This case will draw first from a case study on physicians’ workplace learning and second from a case study...... on nurses’ apprenticeship learning. The aim of the case is to guide the qualitative researcher to use own and others’ voices in the interview and to be sensitive to represented speech in everyday conversation. Moreover, reported speech matters to health professionals who aim to represent the voice...... of their patients. Qualitative researchers and students might learn to encourage interviewees to elaborate different voices or perspectives. Qualitative researchers working with natural speech might pay attention to how people talk and use represented speech. Finally, represented speech might be relevant...
Forsman, Anna K; Fredén, Lars; Lindqvist, Rafael; Wahlbeck, Kristian
The field of public mental health has been defined by an expert group convened by the Nordic School of Public Health (NHV) as encompassing the experience, occurrence, distribution and trajectories of positive mental health and mental health problems and their determinants; mental health promotion and prevention of mental disorders; as well as mental health system policies, governance and organization. The mental health priorities of the Nordic Council of Ministers in 2010 signalled a mutual Nordic exchange of knowledge in the following thematic areas: child and adolescent mental health; working life and mental health; mental health in older people; strengthening the role of primary care in mental health service provision; stronger involvement of users and carers; and reduction of use of coercion in psychiatric care. Efforts to realize these priorities included commissioning the Nordic Research Academy for Mental Health, an NHV-based network of research institutions with a common interest in mental health research across the Nordic countries, to develop, organize and follow-up projects on public mental health. The research initiatives included mental health policy analysis, register-based research and research focused on the users' perspective in a Nordic context, as well as EU-level research policy analysis. The public mental health research conducted at the NHV highlighted the complexity of mental health and emphasized that the broad determinants of mental health need to be increasingly addressed in both public health research and practice. For example, health promotion actions, improved access to health care, a healthy alcohol policy and prevention of suicides and violence are all needed to reduce the life expectancy gap - a red flag indicator of public health inequalities. By exchanging knowledge and best practice, the collaboration between the Nordic countries contributes to the welfare of the region. The expertise and traditions developed at the NHV are of
Mittelmark, Maurice B; Bull, Torill
Despite health promotion's enthusiasm for the salutogenic model of health, researchers have paid little attention to Antonovsky's central ideas about the ease/dis-ease continuum, defined in terms of 'breakdown' (the severity of pain and functional limitations, and the degree medical care is called for, irrespective of specific diseases). Rather, salutogenesis research has a strong focus on how sense of coherence relates to a wide range of specific diseases and illness endpoints. We address two questions: Why has Antonovsky's health concept failed to stimulate research on breakdown, and how can the present emphasis on disease be complemented by an emphasis on positive well-being in the salutogenic model? We show that (i) the breakdown concept of health as specified by Antonovsky is circular in definition, (ii) it is not measured on the 'required' ease/dis-ease continuum, (iii) it is not measureable by any validated or reliability-tested assessment tool, and (iv) it has not so much been rejected by health promotion, as it has not been considered at all. We show that Antonovsky came to view breakdown as but one aspect of well-being. He was open to the idea of well-being as something more positive than the absence of pain, suffering and need for medical care. We suggest ways to move salutogenesis research in the direction of well-being in its positive sense.
Happell, Brenda; Gordon, Sarah; Bocking, Julia; Ellis, Pete; Roper, Cath; Liggins, Jackie; Platania-Phung, Chris; Scholz, Brett
Coproduction of research between consumers of mental health services and nonconsumer mental health researchers is increasing. There is some research available describing consumer perspectives of this experience. However, there is a notable lack of research on other (nonconsumer) researcher experiences of and views about consumer involvement in coproduced research. A qualitative exploratory study was undertaken to examine perspectives of mental health researchers about consumer involvement in research. In-depth individual interviews were undertaken with 11 nonconsumer mental health researchers in Australia and New Zealand. Interview transcripts were analysed to identify major themes. There were three interacting themes: the salience of experiential difference, expanded learning, and enhanced research. The dynamic between different perspectives and learning had the effect of enhancing research across the spectrum of study phases and in ensuring research was of value to different groups. The findings emphasize the important contribution consumer researchers can make to mental health research by bringing their unique perspective and enhancing an environment of mutual learning. Findings also point to the need for foregrounding the numerous benefits of joint research between consumer and other researchers to enhance and improve clinical practice and the development of policy. © 2018 Australian College of Mental Health Nurses Inc.
Holland, Suzanne; Kydd, Angela
To discuss the methodological and ethical review challenges encountered by researchers who want to enable people with dementia to be involved in research. There has been increasing recognition of the importance of involving people with dementia in research. However, an argument has centred on the protection of these vulnerable clients versus their freedom to be involved as participants in research. People with dementia do have the right to have their experiences explored. Involving this client group in research is essential to gain a true understanding of their needs. The lead author's experience of conducting a study in which people newly diagnosed with dementia were recruited as research participants. An interpretive phenomenological approach was adopted during this qualitative study, with data collected by means of one to one interviews with people newly diagnosed with dementia. This study was completed within the set timeframe, but a large part of the work was spent gaining ethical approval. This meant that the timeframe of the study period was reduced and as a result, it was only possible to recruit three participants. However, people with dementia are perhaps one of the most vulnerable client groups and it is only right that they should not be subjected to harm. Ethical review is an important part of research. Meeting the ethical requirements of research involving people with dementia requires time and careful preparation to ensure that researchers safeguard the interests of this vulnerable client group, while also allowing the participants the opportunity to exercise their autonomy to their fullest potential. Conducting research that involves people with dementia may be time consuming, but it is only fair that this client group are afforded the freedom to be involved in research. This small time-limited study points to the need for larger pilot studies to hear from individuals what needs they have following a diagnosis of dementia.
Full Text Available Background: One of the authors living in Yelagiri Hills incidentally noticed that the one government school and two hostels there, were facing acute issues with performance and multiple student health issues. Hence the action research was undertaken to address the problem and simultaneously to empower the local community. Methods: It was a mixed-method action research study comprising of quantitative surveys (before- after design and qualitative approach (participatory intervention. At baseline survey 177 children in two residential hostels and one government school were examined using a locally adapted Global School based Student Health Survey questionnaire. The hemoglobin level was estimated using WHO hemoglobin color scale. The participatory interventions were carried out through School Health Committee. Periodic health checkup with hemoglobin levels and school performance were examined. After one year, 230 children were examined in the follow up survey using the same questionnaire. Results: There was significant improvement in the personal hygiene and reduction in related morbidity among the children. The number of students of hemoglobin level less than 12gm% decreased from 31.4% to 11.3%.The number of students of hemoglobin level more than or equal to 12gm% increased from 68.6% to 88.7%. There was significant decline in anemia from 31.4% from baseline to 11.3% at follow up survey. There was also significant decrease in the malnutrition. Conclusion: The need based participatory health promoting school initiative for tribal children at Yelagiri hills led to a significant improvement in the school performance and general health conditions of the children. The school health committee has played a vital role in the sustainability of the project. The action research could bring positive improvements in health status of school children through active participation of students, parents, teachers and community members.
Goldstein, Neal D; Sarwate, Anand D
Health data derived from electronic health records are increasingly utilized in large-scale population health analyses. Going hand in hand with this increase in data is an increasing number of data breaches. Ensuring privacy and security of these data is a shared responsibility between the public health researcher, collaborators, and their institutions. In this article, we review the requirements of data privacy and security and discuss epidemiologic implications of emerging technologies from the computer science community that can be used for health data. In order to ensure that our needs as researchers are captured in these technologies, we must engage in the dialogue surrounding the development of these tools.
Caffrey, Louise; Wolfe, Charles; McKevitt, Christopher
Internationally, there has been increasing focus on creating health research systems. This article aims to investigate the challenges of implementing apparently simple strategies to support the development of a health research system. We focus on a case study of an English National Health Service Hospital Trust that sought to implement the national recommendation that health organisations should introduce a statement about research on all patient admission letters. We apply core concepts from complexity theory to the case study and undertake a documentary analysis of the email dialogue between staff involved in implementing this initiative. The process of implementing a research statement in patient admission letters in one clinical service took 1 year and 21 days. The length of time needed was influenced firstly by adaptive self-organisation, underpinned by competing interests. Secondly, it was influenced by the relationship between systems, rather than simply being a product of issues within those systems. The relationship between the health system and the research system was weaker than might have been expected. Responsibilities were unclear, leading to confusion and delayed action. Conventional ways of thinking about organisations suggest that change happens when leaders and managers change the strategic vision, structure or procedures in an organisation and then persuade others to rationally implement the strategy. However, health research systems are complex adaptive systems characterised by high levels of unpredictability due to self-organisation and systemic interactions, which give rise to 'emergent' properties. We argue for the need to study how micro-processes of organisational dynamics may give rise to macro patterns of behaviour and strategic organisational direction and for the use of systems approaches to investigate the emergent properties of health research systems.
Haddad, F S; McLawhorn, A S
Health economic evaluations potentially provide valuable information to clinicians, health care administrators, and policy makers regarding the financial implications of decisions about the care of patients. The highest quality research should be used to inform decisions that have direct impact on the access to care and the outcome of treatment. However, economic analyses are often complex and use research methods which are relatively unfamiliar to clinicians. Furthermore, health economic data have substantial national, regional, and institutional variability, which can limit the external validity of the results of a study. Therefore, minimum guidelines that aim to standardise the quality and transparency of reporting health economic research have been developed, and instruments are available to assist in the assessment of its quality and the interpretation of results. The purpose of this editorial is to discuss the principal types of health economic studies, to review the most common instruments for judging the quality of these studies and to describe current reporting guidelines. Recommendations for the submission of these types of studies to The Bone & Joint Journal are provided. Cite this article: Bone Joint J 2016;98-B:147-51. ©2016 The British Editorial Society of Bone & Joint Surgery.
Michael A. Langston
Full Text Available Despite staggering investments made in unraveling the human genome, current estimates suggest that as much as 90% of the variance in cancer and chronic diseases can be attributed to factors outside an individual’s genetic endowment, particularly to environmental exposures experienced across his or her life course. New analytical approaches are clearly required as investigators turn to complicated systems theory and ecological, place-based and life-history perspectives in order to understand more clearly the relationships between social determinants, environmental exposures and health disparities. While traditional data analysis techniques remain foundational to health disparities research, they are easily overwhelmed by the ever-increasing size and heterogeneity of available data needed to illuminate latent gene x environment interactions. This has prompted the adaptation and application of scalable combinatorial methods, many from genome science research, to the study of population health. Most of these powerful tools are algorithmically sophisticated, highly automated and mathematically abstract. Their utility motivates the main theme of this paper, which is to describe real applications of innovative transdisciplinary models and analyses in an effort to help move the research community closer toward identifying the causal mechanisms and associated environmental contexts underlying health disparities. The public health exposome is used as a contemporary focus for addressing the complex nature of this subject.
Vries, M.C. de; Wit, J.M.; Engberts, D.P.; Kaspers, G.J.L.; Leeuwen, E. van
BACKGROUND: Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity
... involving intentional exposure of children or of pregnant or nursing women, unless relying on the data is crucial to a decision that would impose a more stringent regulatory restriction that would improve... itself to conduct or support any research involving intentional exposure of pregnant or nursing women or...
Home · Resources · Publications. Designing and Conducting Health Systems Research Projects Volume 1: Proposal Development and Fieldwork ... IDRC and the United Kingdom's Global AMR Innovation Fund—managed by the ... New website will help record vital life events to improve access to services for all.
The technical specifications define the key limitations that must be observed for safe operation of the Health Physics Research Reactor (HPRR) and an envelope of operation within which there is assurance that these limits will not be exceeded. The specifications were written to satisfy the requirements of the Department of Energy (DOE) Manual Chapter 0540, September 1, 1972
The present issue No. 11 of Health Physics Research Abstracts is the continuation of a series of Bulletins published by the Agency since 1967. They collect reports from Member States on Health Physics research in progress or just completed. The main aim in issuing such reports is to draw attention to work that is about to be published and to enable interested scientists to obtain further information through direct correspondence with the investigators. The attention of users of this publication is drawn to the fact that abstracts of published documents on Health Physics are published eventually in INIS Atomindex, which is one of the output products of the Agency's International Nuclear Information System. The present issue contains 235 reports received up to December 1983 from the following Member States. In parentheses the country's ISO code and number of reports are given
Simon, Christian; Mosavel, Maghboeba
‘Researcher identity’ affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen’s (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns. PMID:21426482
Bell, Rick; Marshall, David W
The construct of involvement has been found to influence brand loyalty, product information search processing, responses to advertising communications, diffusion of innovations, and ultimately, product choice decisions. Traditionally, involvement has been defined as being a characteristic of either a product or of an individual. In the present research, we make an assumption that an individual's 'food involvement' is a somewhat stable characteristic and we hypothesized that involvement with foods would vary between individuals, that individuals who are more highly involved with food would be better able to discriminate between a set of food samples than would less food involved individuals, and that this discrimination would operate both in affective and perceptive relative judgments. Using standard scale construction techniques, we developed a measure of the characteristic of food involvement, based on activities relating to food acquisition, preparation, cooking, eating and disposal. After several iterations, a final 12-item measure was found to have good test-retest reliability and internal consistency within two subscales. A behavioral validation study demonstrated that measures of food involvement were associated with discrimination and hedonic ratings for a range of foods in a laboratory setting. These findings suggest that food involvement, as measured by the Food Involvement Scale, may be an important mediator to consider when undertaking research with food and food habits.
Sharkey, Siobhan; Jones, Ray; Smithson, Janet; Hewis, Elaine; Emmens, Tobit; Ford, Tamsin; Owens, Christabel
The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.
In this comment, I build on Shiffman’s call for the global health community to more deeply investigate structural and productive power. I highlight two challenges we must grapple with as social scientists carrying out the types of investigation that Shiffman proposes: the politics of challenging the powerful; and the need to investigate types of expertise that have traditionally been thought of as ‘outside’ global health. In doing so, I argue that moving forward with the agenda Shiffman sets out requires social scientists interested in the global politics of health to be reflexive about our own exercise of structural and productive power and the fact that researching global health politics is itself a political undertaking. PMID:25905482
Objective. This article aims: (I) to re-examine the use and usefulness of categorisation based on 'race'. ethnicity and 'population group' membership in public heatth research; and (ii) to assess the consequences of using these categories for describing, analysing and redressing disparities in health within South Africa The ...
... scientists performing preclinical research to approaches for considering sex as a biological variable. Read the article. Pinn Symposium Celebrates Womenâ€™s Contributions to Health Read article Watch video Read event summary (PDF - 293.5KB) ORWH Director ...
Ellen, Moriah E; Horowitz, Einav; Vaknin, Sharona; Lavis, John N
The use of research evidence in health policymaking is an international challenge. Health systems, including that of Israel, are usually characterized by scarce resources and the necessity to make rapid policy decisions. Knowledge transfer and exchange (KTE) has emerged as a paradigm to start bridging the "know-do" gap. The purpose of this study was to explore the views of health system policymakers and senior executives involved in the policy development process in Israel regarding the role of health systems and policy research (HSPR) in health policymaking, the barriers and facilitators to the use of evidence in the policymaking process, and suggestions for improving the use of HSPR in the policymaking process. A survey and an interview were verbally administered in a single face-to-face meeting with health system policymakers and senior executives involved in the policy development process in Israel. The data collection period was from July to October 2014. The potential participants included members of Knesset, officials from Israel's Ministry of Health, Ministry of Finance, health services organizations, and other stakeholder organizations (i.e., National Insurance Institute). The close-ended questions were based on previous surveys that had been conducted in this field. Interviews were tape recorded and transcribed. Descriptive statistics were conducted for close ended survey-questions and thematic analysis was conducted for open-ended interview questions. There were 32 participants in this study. Participants felt that the use of HSPR helps raise awareness on policy issues, yet the actual use of HSPR was hindered for many reasons. Facilitators do exist to support the use of HSPR in the policymaking process, such as a strong foundation of relationships between researchers and policymakers. However, many barriers exist such as the lack of relevance and timeliness of much of the currently available research to support decision-making and the paucity of funding
Nielsen, Stine Frydendal; Ottesen, Laila; Thing, Lone Friis
The paper considers a study in a Danish high school in which students were involved in enhancing physical activity in their own school. International research points out that adolescents are not as physically active as recommended. Moreover, studies show that maintaining health promotion interven......The paper considers a study in a Danish high school in which students were involved in enhancing physical activity in their own school. International research points out that adolescents are not as physically active as recommended. Moreover, studies show that maintaining health promotion...... and the importance of theoretical pointers to insure that the researcher does not lose herself in the research field. Elias unfolds this methodological approach in “The Established and the Outsiders.” By applying this conceptualization, this study shows that some of the involved students found their role...... and their identity as “sports-students” difficult, and it compromised their social life in the school, which relates to aspects that does not always correspond with the current health norms. The paper discusses the relations between the involved students and the other students in the school, and what consequences...
Dhital, S R; Aro, R A; Sapkota, K
Female trafficking is a social and public health problem, associated with physical and sexual abuse, psychological trauma, injuries from violence, sexually transmitted infections, adverse reproductive outcomes and substance misuse. It faces several challenges ranging from the hidden nature of the problem to ethical and human rights issues. The objectives of this paper are to analyze health impact of trafficking; ethical and research issues and anti-trafficking strategies in the Nepalese context. We collected published and unpublished data assessing the public health, ethical burden and research needs from different sources. Trafficked female involved in sex-industry that face grave situation as depicted and it might a reservoir of sexually transmitted diseases. Ethical issues related to survey of assessing the burden are difficult to carry out. The best ways to prevent and control these problems are to enhance anti- trafficking laws and raise awareness, empower and mobilize females and establish organizational capacity.
This paper describes the evaluation of a Dental Health Mass-Media Campaign directed at 5-7-yr-old children and their mothers. It aimed at increasing knowledge and awareness of dental health by making use of three different components: inserts in women's magazines; television commercial; material...... that future national health education campaigns combine the mass-media approach to increase health awareness with active involvement activities to stimulate behavioural changes....
Baum, Frances Elaine; Margaret Anaf, Julia
Transnational corporations (TNCs) are part of an economic system of global capitalism that operates under a neoliberal regime underpinned by strong support from international organisations such as the World Trade Organization, World Bank, and most nation states. Although TNCs have grown in power and influence and have had a significant impact on population health over the past three decades, public health has not developed an integrated research agenda to study them. This article outlines the shape of such an agenda and argues that it is vital that research into the public health impact of TNCs be pursued and funded as a matter of priority. The four areas of the agenda are: assessing the health and equity impacts of TNCs; evaluating the effectiveness of government regulation to mitigate health and equity impacts of TNCs; studying the work of activist groups and networks that highlight adverse impacts of TNCs; and considering how regulation of capitalism could better promote a healthier and more equitable corporate sector. © The Author(s) 2015 Reprints and permissions:]br]sagepub.co.uk/journalsPermissions.nav.
Cooper, Karen A; Donovan, Jennifer L; Waterhouse, Andrew L; Williamson, Gary
It has been over 10 years since the first mention in a medical journal about cocoa and chocolate as potential sources of antioxidants for health. During this time, cocoa has been found to improve antioxidant status, reduce inflammation and correlate with reduced heart disease risk; with these results, and its popularity, it has received wide coverage in the press. However, after 10 years of research, what is known about the potential health benefits of cocoa and what are the important next steps in understanding this decadent source of antioxidants?
Kane, R; Dean, M; Solomon, M
Reviews the state of the art of rural health research and evaluation in the U.S. with particular emphasis on the questions of access, health personnel, and financing. The current state of knowledge both in the published and unpublished literature in each area is summarized and a series of unresolved issues is proposed. A strategy for further research to include the various types of rural health care programs is described. Major findings suggest that, although rural populations do have somewhat less access to care than do urban populations, our ability to quantify precisely the extent and importance of this discrepancy is underdeveloped. Despite a substantial investment in a variety of rural health care programs there is inadequate information as to their effectiveness. Programs designed to increase the supply of health personnel to rural areas have met with mixed success. Sites staffed by National Health Service Corps personnel show consistently lower productivity than do sites under other sponsorship. Nonphysician personnel (physician assistants and nurse practitioners) offer a promising source of primary care for rural areas: recent legislation that reimburses such care should increase their utilization. A persistent problem is the expectation (often a mandate) incorporated into many rural health care demonstration efforts that the programs become financially self-sufficient in a finite period of time. Self-sufficiency is a function of utilization, productivity, and the ability to recover charges for services. In many instances stringent enforcement of the self-sufficiency requirement may mean those who need services most will be least likely to receive them.
Sternquist, Brenda; Huddleston, Patricia; Fairhurst, Ann
We provide an overview of ways to involve undergraduate business and retailing students in faculty research projects and discuss advantages of these student-faculty collaborations. We use Kolb's experiential learning cycle to provide a framework for creating an effective and engaging undergraduate research experience and use it to classify types…
Gonzalvez, Mr V; Schlueter, Mr M; Slabe, Ms A; Schmid, Mr O
The paper presents the concepts, criteria, procedures and some methodologies to increase stakeholders involvement and participatioin in organic research Projects in the European Union, based on the experiencie and practise of the IFOAM EU Regional Group (IFOAM-EURG), in transnational Organic research Projects, enfatising in achivements, dificulties and trends for the future
Iacono, T.; Carling-Jenkins, R.
Background: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and…
... addressed in EPA science and ethics reviews of proposed and completed human research with pesticides, drawn..., which suggest ethical considerations relevant to evaluation of human studies. Third, Petitioners argued... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides AGENCY...
Full Text Available Scientific undergraduate research in higher education often yields positive outcomes for student and faculty member participants alike, with underrepresented students often showing even more substantial gains (academic, professional, and personal as a result of the experience. Significant success can be realized when involving deaf and hard-of-hearing (d/hh undergraduate students, who are also vastly underrepresented in the sciences, in interdisciplinary research projects. Even d/hh Associate degree level students and those in the first two years of their postsecondary careers can contribute to, and benefit from, the research process when faculty mentors properly plan/design projects. We discuss strategies, including the dissemination/communication of research results, for involving these students in research groups with different communication dynamics and share both findings of our research program and examples of successful chemical and biological research projects that have involved d/hh undergraduate students. We hope to stimulate a renewed interest in encouraging diversity and involving students with disabilities into higher education research experiences globally and across multiple scientific disciplines, thus strengthening the education and career pipeline of these students.
Stamer, M; Güthlin, C; Holmberg, C; Karbach, U; Patzelt, C; Meyer, T
The third and final discussion paper of the German Network of Health Services Research's (DNVF) "Qualitative Methods Working Group" demonstrates methods for the evaluation and quality of qualitative research in health services research. In this paper we discuss approaches described in evaluating qualitative studies, including: an orientation to the general principles of empirical research, an approach-specific course of action, as well as procedures based on the research-process and criteria-oriented approaches. Divided into general and specific aspects to be considered in a qualitative study quality evaluation, the central focus of the discussion paper undertakes an extensive examination of the process and criteria-oriented approaches. The general aspects include the participation of relevant groups in the research process as well as ethical aspects of the research and data protection issues. The more specific aspects in evaluating the quality of qualitative research include considerations about the research interest, research questions, and the selection of data collection methods and types of analyses. The formulated questions are intended to guide reviewers and researchers to evaluate and to develop qualitative research projects appropriately. The intention of this discussion paper is to ensure a transparent research culture, and to reflect on and discuss the methodological and research approach of qualitative studies in health services research. With this paper we aim to initiate a discussion on high quality evaluation of qualitative health services research. © Georg Thieme Verlag KG Stuttgart · New York.
Cole, Donald C; Johnson, Nancy; Mejia, Raul; McCullough, Hazel; Turcotte-Tremblay, Anne-Marie; Barnoya, Joaquin; Falabella Luco, María Soledad
Mentoring experiences and programmes are becoming increasingly recognised as important by those engaged in capacity strengthening in global health research. Using a primarily qualitative study design, we studied three experiences of mentorship and eight mentorship programmes for early career global health researchers based in high-income and low- and middle-income countries. For the latter, we drew upon programme materials, existing unpublished data and more formal mixed-method evaluations, supplemented by individual email questionnaire responses. Research team members wrote stories, and the team assembled and analysed them for key themes. Across the diverse experiences and programmes, key emergent themes included: great mentors inspire others in an inter-generational cascade, mentorship is transformative in personal and professional development and involves reciprocity, and finding the right balance in mentoring relationships and programmes includes responding creatively to failure. Among the challenges encountered were: struggling for more level playing fields for new health researchers globally, changing mindsets in institutions that do not have a culture of mentorship and building collaboration not competition. Mentoring networks spanning institutions and countries using multiple virtual and face-to-face methods are a potential avenue for fostering organisational cultures supporting quality mentorship in global health research.
de Vries, Martine C; Wit, Jan M; Engberts, Dirk P; Kaspers, Gertjan J L; van Leeuwen, Evert
Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity of research protocols and limited time. Still, up to 80% of adolescents with cancer enter onto a trial during their illness. The aim of this study was to determine clinicians' views and attitudes towards enrolling adolescents in research, considering the difficulties surrounding their involvement in decision-making. A qualitative multicenter study was performed, using in-depth semi-structured interviews on the informed consent process with 15 pediatric hemato-oncologists. Four central themes emerged that characterize clinicians' attitudes towards involving adolescents in the decision-making process: (1) clinicians regard most adolescents as not capable of participating meaningfully in discussions regarding research; (2) clinicians do not always provide adolescents with all information; (3) proxy consent from parents is obtained and is deemed sufficient; (4) clinician-investigator integrity: clinicians judge research protocols as not being harmful and even in the best interest of the adolescent. Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines.
Anthony, P; Crawford, P
A dissonance between espoused values of consumerism within mental health care and the 'reality' of clinical practice has been firmly established in the literature, not least in terms of service user involvement in care planning. In order to begin to minimize such dissonance, it is vital that mental health nurse perceptions of service user involvement in the core activity of care planning are better understood. The main findings of this qualitative study, which uses semistructured interviews, suggest that mental health nurses value the concept of user involvement but consider it to be problematic in certain circumstances. The study reveals that nurses hold similar views about the 'meaning' of patient involvement in care planning but limited resources, individual patients characteristics and limitations in nursing care are the main inhibiting factors. Factors perceived as promoting and increasing user involvement included: provision of accurate information, 'user-friendly' documentation, mechanisms for gaining service user feedback, and high staff morale.
The field of mobile health ("m-Health") is evolving rapidly and there is an explosive growth of psychological tools on the market. Exciting high-tech developments may identify symptoms, help individuals manage their own mental health, encourage help seeking, and provide both preventive and therapeutic interventions. This development has the potential to be an efficient cost-effective approach reducing waiting lists and serving a considerable portion of people globally ("g-Health"). However, few of the mobile applications (apps) have been rigorously evaluated. There is little information on how valid screening and assessment tools are, which of the mobile intervention apps are effective, or how well mobile apps compare to face-to-face treatments. But how feasible is rigorous scientific evaluation with the rising demands from policy makers, business partners, and users for their quick release? In this paper, developments in m-Health tools-targeting screening, assessment, prevention, and treatment-are reviewed with examples from the field of trauma and posttraumatic stress disorder. The academic challenges in developing and evaluating m-Health tools are being addressed. Evidence-based guidance is needed on appropriate research designs that may overcome some of the public and ethical challenges (e.g., equity, availability) and the market-driven wish to have mobile apps in the "App Store" yesterday rather than tomorrow.
Di Iorio, C T; Carinci, F; Oderkirk, J
The European Union (EU) Data Protection Regulation will have profound implications for public health, health services research and statistics in Europe. The EU Commission's Proposal was a breakthrough in balancing privacy rights and rights to health and healthcare. The European Parliament, however, has proposed extensive amendments. This paper reviews the amendments proposed by the European Parliament Committee on Civil Liberties, Justice and Home Affairs and their implications for health research and statistics. The amendments eliminate most innovations brought by the Proposal. Notably, derogation to the general prohibition of processing sensitive data shall be allowed for public interests such as the management of healthcare services,but not health research, monitoring, surveillance and governance. The processing of personal health data for historical, statistical or scientific purposes shall be allowed only with the consent of the data subject or if the processing serves an exceptionally high public interest, cannot be performed otherwise and is legally authorised. Research, be it academic, government,corporate or market research, falls under the same rule.The proposed amendments will make difficult or render impossible research and statistics involving the linkage and analysis of the wealth of data from clinical,administrative, insurance and survey sources, which have contributed to improving health outcomes and health systems performance and governance; and may illegitimise efforts that have been made in some European countries to enable privacy-respectful data use for research and statistical purposes. If the amendments stand as written, the right to privacy is likely to override the right to health and healthcare in Europe.
Festinger, David S; Dugosh, Karen L; Croft, Jason R; Arabia, Patricia L; Marlowe, Douglas B
We examined the efficacy of including a research intermediary (RI) during the consent process in reducing participants' perceptions of coercion to enroll in a research study. Eighty-four drug court clients being recruited into an ongoing study were randomized to receive a standard informed consent process alone (standard condition) or with an RI (intermediary condition). Before obtaining consent, RIs met with clients individually to discuss remaining concerns. Findings provided preliminary evidence that RIs reduced client perceptions that their participation might influence how clinical and judicial staff view them. This suggests that using RIs may improve participant autonomy in clinical studies.
Colorafi, Karen Jiggins; Evans, Bronwynne
The purpose of this methodology paper is to describe an approach to qualitative design known as qualitative descriptive that is well suited to junior health sciences researchers because it can be used with a variety of theoretical approaches, sampling techniques, and data collection strategies. It is often difficult for junior qualitative researchers to pull together the tools and resources they need to embark on a high-quality qualitative research study and to manage the volumes of data they collect during qualitative studies. This paper seeks to pull together much needed resources and provide an overview of methods. A step-by-step guide to planning a qualitative descriptive study and analyzing the data is provided, utilizing exemplars from the authors' research. This paper presents steps to conducting a qualitative descriptive study under the following headings: describing the qualitative descriptive approach, designing a qualitative descriptive study, steps to data analysis, and ensuring rigor of findings. The qualitative descriptive approach results in a summary in everyday, factual language that facilitates understanding of a selected phenomenon across disciplines of health science researchers. © The Author(s) 2016.
Radiation protection and its interplay with physical research programs are described. Differences and similarities between problems in health protection for chemicals and for radiation are discussed. The importance of dosimetry in radiation work and its relevance to chemicals are cited. A collaborative program between physical and biological scientists on the toxicity of metals is briefly described. It serves as an example of new research directed toward the development of fundamental concepts and principles as a basis for understanding and controlling occupational and population exposures to chemicals. 12 references, 4 figures
Mosavel, Maghboeba; Ahmed, Rashid; Daniels, Doria; Simon, Christian
Lay persons who are trained to conduct research in their own communities form an essential part of many research projects. However, the effects of conducting research in their own communities have not been adequately explored. This paper examines the experiences, perceptions, and challenges faced by a group of community researchers during their involvement in a research project that examined if, and how, the relationships between mothers and their adolescent daughters could be harnessed to develop a daughter-initiated cervical cancer intervention. Seven community researchers interviewed 157 mother-daughter pairs in Cape Town, South Africa. We examine the use of journaling as a tool to document the experiences of community researchers, and we consider how journaling may help the community-based researcher grapple with the research process, and, more broadly, what such journal content illustrates with respect to the nature and challenges of community-engaged health research. An analysis of the content of the journals provides a strong indication of how personal and intimate the research process can be for community researchers by virtue of the background that they bring into the process as well as the additional weight of the research process itself. The complexities of navigating dual and somewhat oppositional roles - the role of impartial scientist or researcher and the role of invested community person - has been both underestimated and insufficiently researched. Copyright © 2011 Elsevier Ltd. All rights reserved.
In this article, I trace the historical groundings of what have become methodological conventions in the use of qualitative approaches to answer questions arising from the applied health disciplines and advocate an alternative logic more strategically grounded in the epistemological orientations of the professional health disciplines. I argue for an increasing emphasis on the modification of conventional qualitative approaches to the particular knowledge demands of the applied practice domain, challenging the merits of what may have become unwarranted attachment to theorizing. Reorienting our methodological toolkits toward the questions arising within an evidence-dominated policy agenda, I encourage my applied health disciplinary colleagues to make themselves useful to that larger project by illuminating that which quantitative research renders invisible, problematizing the assumptions on which it generates conclusions, and filling in the gaps in knowledge needed to make decisions on behalf of people and populations.
Full Text Available Abstract Background Limited research exists on researchers' knowledge transfer and exchange (KTE in the eastern Mediterranean region (EMR. This multi-country study explores researchers' views and experiences regarding the role of health systems and policy research evidence in health policymaking in the EMR, including the factors that influence health policymaking, barriers and facilitators to the use of evidence, and the factors that increase researchers' engagement in KTE. Methods Researchers who published health systems and policy relevant research in 12 countries in the EMR (Bahrain, Egypt, Iran, Jordan, Lebanon, Libya, Morocco, Oman, Palestine, Sudan, Syria, and Yemen were surveyed. Descriptive analysis and Linear Mixed Regression Models were performed for quantitative sections and the simple thematic analysis approach was used for open-ended questions. Results A total of 238 researchers were asked to complete the survey (response rate 56%. Researchers indicated transferring results to other researchers (67.2% and policymakers in the government (40.5%. Less than one-quarter stated that they produced policy briefs (14.5%, disseminated messages that specified possible actions (24.4%, interacted with policymakers and stakeholders in priority-setting (16%, and involved them in their research (19.8%. Insufficient policy dialogue opportunities and collaboration between researchers and policymakers and stakeholders (67.9%, practical constraints to implementation (66%, non-receptive policy environment (61.3%, and politically sensitive findings (57.7% hindered the use of evidence. Factors that increase researchers' engagement in KTE activities in the region were associated with involving policymakers and stakeholders at various stages such as priority-setting exercises and provision of technical assistance. Conclusions Researchers in the EMR recognize the importance of using health systems evidence in health policymaking. Potential strategies to
The primary purpose of this study is to examine the connection between parent involvement and autonomy support, as well as the combined construct of autonomy supportive parent involvement, with internalized mental health symptoms. A secondary purpose of this study is to determine how certain parent demographics relate to attitudes and behaviors…
Petersen, Kirsten Schultz; Borg, Tove; Hounsgaard, Lise
The aim of the study is to gain insight into the user’s perspective on user involvement in mental health rehabilitation. The study was designed as a field study lasting 15 months in two supported housing schemes. An ethnographic approach by James Spradley was employed, involving participant...
Bennett Sara C
Full Text Available Abstract Health policy and systems research (HPSR has been identified as critical to scaling-up interventions to achieve the millennium development goals, but research priority setting exercises often do not address HPSR well. This paper aims to (i assess current priority setting methods and the extent to which they adequately include HPSR and (ii draw lessons regarding how HPSR priority setting can be enhanced to promote relevant HPSR, and to strengthen developing country leadership of research agendas. Priority setting processes can be distinguished by the level at which they occur, their degree of comprehensiveness in terms of the topic addressed, the balance between technical versus interpretive approaches and the stakeholders involved. When HPSR is considered through technical, disease-driven priority setting processes it is systematically under-valued. More successful approaches for considering HPSR are typically nationally-driven, interpretive and engage a range of stakeholders. There is still a need however for better defined approaches to enable research funders to determine the relative weight to assign to disease specific research versus HPSR and other forms of cross-cutting health research. While country-level research priority setting is key, there is likely to be a continued need for the identification of global research priorities for HPSR. The paper argues that such global priorities can and should be driven by country level priorities.
The West Africa Health Organization (WAHO), Health Research Unit, has been mandated by its member states to address this issue. ... In each member country, researchers will map existing research for health capacity/needs, formulate a plan of action, design a training curriculum for a course on research for health, and ...
Kulikowski, Casimir A.; Bakken, Suzanne; de Lusignan, Simon; Kimura, Michio; Koch, Sabine; Mantas, John; Maojo, Victor; Marschollek, Michael; Martin-Sanchez, Fernando; Moen, Anne; Park, Hyeoun-Ae; Sarkar, Indra Neil; Leong, Tze Yun; McCray, Alexa T.
Summary Background Medical informatics, or biomedical and health informatics (BMHI), has become an established scientific discipline. In all such disciplines there is a certain inertia to persist in focusing on well-established research areas and to hold on to well-known research methodologies rather than adopting new ones, which may be more appropriate. Objectives To search for answers to the following questions: What are research fields in informatics, which are not being currently adequately addressed, and which methodological approaches might be insufficiently used? Do we know about reasons? What could be consequences of change for research and for education? Methods Outstanding informatics scientists were invited to three panel sessions on this topic in leading international conferences (MIE 2015, Medinfo 2015, HEC 2016) in order to get their answers to these questions. Results A variety of themes emerged in the set of answers provided by the panellists. Some panellists took the theoretical foundations of the field for granted, while several questioned whether the field was actually grounded in a strong theoretical foundation. Panellists proposed a range of suggestions for new or improved approaches, methodologies, and techniques to enhance the BMHI research agenda. Conclusions The field of BMHI is on the one hand maturing as an academic community and intellectual endeavour. On the other hand vendor-supplied solutions may be too readily and uncritically accepted in health care practice. There is a high chance that BMHI will continue to flourish as an important discipline; its innovative interventions might then reach the original objectives of advancing science and improving health care outcomes. PMID:28119991
Petrie, W.L.; Cannon, H.L.
Increasing concern regarding the effects of the geochemical environment on health in the United States has fostered research studies in a number of universities and government agencies. The necessity to evaluate the effects of natural and man-made elemental excesses in the environment on health requires the establishment of requirements and tolerance limits for the various elements in water and crops. Maps of the geographic distribution of these elements in rocks, surficial materials and ground and surface waters are also essential for comparison with the occurrence of disease. Funding support for research projects that relate to various parameters of these problems emanates largely from a few federal agencies, and much of the work is conducted at government, university and private facilities. An example of the latter is the National Academy of Sciences-National Research Council, which has several components that are addressing a variety of comparative studies of the geochemical environment related to health; studies involve specific trace elements (like selenium and magnesium), diseases (like cancer, urolithiasis and cardiovascular disease), other health factors (like aging and nutrition) and links with timely major problems (like the health effects of greatly increasing the use of coal). ?? 1979.
Thapa, Deependra Kaji; Niehof, Anke
Both increasing women's autonomy and increasing husbands' involvement in maternal health care are promising strategies to enhance maternal health care utilization. However, these two may be at odds with each other insofar as autonomous women may not seek their husband's involvement, and involved husbands may limit women's autonomy. This study assessed the relationship between women's autonomy and husbands' involvement in maternal health care. Field work for this study was carried out during September-November 2011 in the Kailali district of Nepal. In-depth interviews and focus group discussions were used to investigate the extent of husbands' involvement in maternal health care. A survey was carried out among 341 randomly selected women who delivered a live baby within one year prior to the survey. The results show that husbands were involved in giving advice, supporting to reduce the household work burden, and making financial and transportation arrangements for the delivery. After adjustment for other covariates, economic autonomy was associated with lower likelihood of discussion with husband during pregnancy, while domestic decision-making autonomy was associated with both lower likelihood of discussion with husband during pregnancy and the husband's presence at antenatal care (ANC) visits. Movement autonomy was associated with lower likelihood of the husband's presence at ANC visits. Intra-spousal communication was associated with higher likelihood of discussing health with the husband during pregnancy, birth preparedness, and the husbands' presence at the health facility delivery. The magnitude and direction of association varied per autonomy dimension. These findings suggest that programs to improve the women's autonomy and at the same time increase the husband's involvement should be carefully planned. Despite the traditional cultural beliefs that go against the involvement of husbands, Nepalese husbands are increasingly entering into the area of maternal
Drachsler, H. (2013, 12 May). TEL4Health research at University College Cork (UCC). Invited talk given at Application of Science to Simulation, Education and Research on Training for Health Professionals Centre (ASSERT for Health Care), Cork, Ireland.
Shield, Renée; Rosenthal, Marsha; Wetle, Terrie; Tyler, Denise; Clark, Melissa; Intrator, Orna
Medical staff (physicians, nurse practitioners, physicians' assistants) involvement in nursing homes (NH) is limited by professional guidelines, government policies, regulations, and reimbursements, creating bureaucratic burden. The conceptual NH Medical Staff Involvement Model, based on our mixed-methods research, applies the Donabedian "structure-process-outcomes" framework to the NH, identifying measures for a coordinated research agenda. Quantitative surveys and qualitative interviews conducted with medical directors, administrators and directors of nursing, other experts, residents and family members and Minimum Data Set, the Online Certification and Reporting System and Medicare Part B claims data related to NH structure, process, and outcomes were analyzed. NH control of medical staff, or structure, affects medical staff involvement in care processes and is associated with better outcomes (e.g., symptom management, appropriate transitions, satisfaction). The model identifies measures clarifying the impact of NH medical staff involvement on care processes and resident outcomes and has strong potential to inform regulatory policies.
Miller, Victoria A; Werner-Lin, Allison; Walser, Sarah A; Biswas, Sawona; Bernhardt, Barbara A
The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%) of sessions, and most (75%) children also verbally participated. Provider facilitation was strongly associated with likelihood of child participation. These findings underscore that strategies such as asking for children's opinions and soliciting their questions show respect for children and may increase the likelihood that they are engaged and involved in decisions about research participation.
Brereton, L.; Goyder, E.; Ingleton, C.; Gardiner, C.; Chilcott, J.; Wilt, G.J. van der; Oortwijn, W.; Mozygemba, K.; Lysdahl, K.B.; Sacchini, D.; Lepper, W.
BACKGROUND: Patient and Public Involvement (PPI) helps to ensure that study findings are useful to end users but is under-developed in Health Technology Assessment (HTA). "INTEGRATE-HTA, (a co-funded European Union project -grant agreement 30614) is developing new methods to assess complex health
Swenson, Ingrid; And Others
Surveyed national sample of 844 community health nurses to assess their knowledge of, attitudes toward, involvement with reproductive health services. Slightly more than 50 percent of nurses provided or administered contraceptive services to adolescents. Ninety-five percent agreed that contraceptives should be available to adolescents; 90 percent…
Sprague, Courtenay; Scanlon, Michael L.; Pantalone, David W.
Justice-involved HIV-positive women have poor health outcomes that constitute health inequities. Researchers have yet to embrace the range of qualitative methods to elucidate how psychosocial histories are connected to pathways of vulnerability to HIV and incarceration for this key population. We used life course narratives and…
Taylor, Laura L.; Morgan, Robert P.
The state of public involvement in environmental, safety, and health issues at the DOE Nuclear Weapons Complex is assessed through identification of existing opportunities for public involvement and through interviews with representatives of ten local citizen groups active in these issues at weapons facilities in their communities. A framework for analyzing existing means of public involvement is developed. On the whole, opportunities for public involvement are inadequate. Provisions for public involvement are lacking in several key stages of the decision-making process. Consequently, adversarial means of public involvement have generally been more effective than cooperative means in motivating change in the Weapons Complex. Citizen advisory boards, both on the local and national level, may provide a means of improving public involvement in Weapons Complex issues. (author)
informed policies. Accordingly, a critical way of addressing these challenges facing health systems in the region is through the linking of health research findings to policy. Keywords: Evidence; Sub-Saharan Africa; Health Policy; Health Systems ...
Centre for Health Science and Social Research (CHESSORE) - Lusaka District. Institution Country ... Institution. Canadian Coalition for Global Health Research ... Institution. Kenya Medical Research Institute ... Journal articles. Tanzania ...
Patient and public involvement in health research has been promoted by the United Kingdom's Department of Health and its research funding agencies for at least a decade. The policy rhetoric through which it is promoted is based on the idea that patients' experiential knowledge can be harnessed to improve the quality and relevance of health…
Shewade, H D; Chadha, S S; Gupta, V; Tripathy, J P; Satyanarayana, S; Sagili, K; Mohanty, S; Bera, O P; Pandey, P; Rajeswaran, P; Jayaraman, G; Santhappan, A; Bajpai, U N; Mamatha, A M; Maiser, R; Naqvi, A J; Pandurangan, S; Nath, S; Ghule, V H; Das, A; Prasad, B M; Biswas, M; Singh, G; Mallick, G; Jeyakumar Jaisingh, A J; Rao, R; Kumar, A M V
Conducting multicentre operational research is challenging due to issues related to the logistics of travel, training, supervision, monitoring and troubleshooting support. This is even more burdensome in resource-constrained settings and if the research includes patient interviews. In this article, we describe an innovative model that uses open access tools such as Dropbox, TeamViewer and CamScanner for efficient, quality-assured data collection in an ongoing multicentre operational research study involving record review and patient interviews. The tools used for data collection have been shared for adaptation and use by other researchers.
Reed, Pamela G
Because human development is an integral aspect of life, pathways to mental health necessarily involve developmentally based issues or resources. This column provides an overview of self-transcendence as one developmentally based resource for mental health. The Self-Transcendence Scale is presented to encourage its use in mental health nursing practice and research.
Balbus, John M.; Christian, Carole; Haque, Ehsanul; Howe, Sally E.; Newton, Sheila A.; Reid, Britt C.; Roberts, Luci; Wilhelm, Erin; Rosenthal, Joshua P.
Background: According to a wide variety of analyses and projections, the potential effects of global climate change on human health are large and diverse. The U.S. National Institutes of Health (NIH), through its basic, clinical, and population research portfolio of grants, has been increasing efforts to understand how the complex interrelationships among humans, ecosystems, climate, climate variability, and climate change affect domestic and global health. Objectives: In this commentary we present a systematic review and categorization of the fiscal year (FY) 2008 NIH climate and health research portfolio. Methods: A list of candidate climate and health projects funded from FY 2008 budget appropriations were identified and characterized based on their relevance to climate change and health and based on climate pathway, health impact, study type, and objective. Results: This analysis identified seven FY 2008 projects focused on climate change, 85 climate-related projects, and 706 projects that focused on disease areas associated with climate change but did not study those associations. Of the nearly 53,000 awards that NIH made in 2008, approximately 0.17% focused on or were related to climate. Conclusions: Given the nature and scale of the potential effects of climate change on human health and the degree of uncertainty that we have about these effects, we think that it is helpful for the NIH to engage in open discussions with science and policy communities about government-wide needs and opportunities in climate and health, and about how NIH’s strengths in human health research can contribute to understanding the health implications of global climate change. This internal review has been used to inform more recent initiatives by the NIH in climate and health. PMID:23552460
Jessup, Christine M; Balbus, John M; Christian, Carole; Haque, Ehsanul; Howe, Sally E; Newton, Sheila A; Reid, Britt C; Roberts, Luci; Wilhelm, Erin; Rosenthal, Joshua P
According to a wide variety of analyses and projections, the potential effects of global climate change on human health are large and diverse. The U.S. National Institutes of Health (NIH), through its basic, clinical, and population research portfolio of grants, has been increasing efforts to understand how the complex interrelationships among humans, ecosystems, climate, climate variability, and climate change affect domestic and global health. In this commentary we present a systematic review and categorization of the fiscal year (FY) 2008 NIH climate and health research portfolio. A list of candidate climate and health projects funded from FY 2008 budget appropriations were identified and characterized based on their relevance to climate change and health and based on climate pathway, health impact, study type, and objective. This analysis identified seven FY 2008 projects focused on climate change, 85 climate-related projects, and 706 projects that focused on disease areas associated with climate change but did not study those associations. Of the nearly 53,000 awards that NIH made in 2008, approximately 0.17% focused on or were related to climate. Given the nature and scale of the potential effects of climate change on human health and the degree of uncertainty that we have about these effects, we think that it is helpful for the NIH to engage in open discussions with science and policy communities about government-wide needs and opportunities in climate and health, and about how NIH's strengths in human health research can contribute to understanding the health implications of global climate change. This internal review has been used to inform more recent initiatives by the NIH in climate and health.
Schwappach, David L B; Frank, Olga; Davis, Rachel E
Various authorities recommend the participation of patients in promoting patient safety, but little is known about health care professionals' (HCPs') attitudes towards patients' involvement in safety-related behaviours. To investigate how HCPs evaluate patients' behaviours and HCP responses to patient involvement in the behaviour, relative to different aspects of the patient, the involved HCP and the potential error. Cross-sectional fractional factorial survey with seven factors embedded in two error scenarios (missed hand hygiene, medication error). Each survey included two randomized vignettes that described the potential error, a patient's reaction to that error and the HCP response to the patient. Twelve hospitals in Switzerland. A total of 1141 HCPs (response rate 45%). Approval of patients' behaviour, HCP response to the patient, anticipated effects on the patient-HCP relationship, HCPs' support for being asked the question, affective response to the vignettes. Outcomes were measured on 7-point scales. Approval of patients' safety-related interventions was generally high and largely affected by patients' behaviour and correct identification of error. Anticipated effects on the patient-HCP relationship were much less positive, little correlated with approval of patients' behaviour and were mainly determined by the HCP response to intervening patients. HCPs expressed more favourable attitudes towards patients intervening about a medication error than about hand sanitation. This study provides the first insights into predictors of HCPs' attitudes towards patient engagement in safety. Future research is however required to assess the generalizability of the findings into practice before training can be designed to address critical issues. © 2012 John Wiley & Sons Ltd.
Michael K. Gusmano
Full Text Available Over half of the world’s population lives in cities and United Nations (UN demographers project an increase of 2.5 billion more urban dwellers by 2050. Yet there is too little systematic comparative research on the practice of urban health policy and management (HPAM, particularly in the megacities of middle-income and developing nations. We make a case for creating a global database on cities, population health and healthcare systems. The expenses involved in data collection would be difficult to justify without some review of previous work, some agreement on indicators worth measuring, conceptual and methodological considerations to guide the construction of the global database, and a set of research questions and hypotheses to test. We, therefore, address these issues in a manner that we hope will stimulate further discussion and collaboration.
Gusmano, Michael K; Rodwin, Victor G
Over half of the world's population lives in cities and United Nations (UN) demographers project an increase of 2.5 billion more urban dwellers by 2050. Yet there is too little systematic comparative research on the practice of urban health policy and management (HPAM), particularly in the megacities of middle-income and developing nations. We make a case for creating a global database on cities, population health and healthcare systems. The expenses involved in data collection would be difficult to justify without some review of previous work, some agreement on indicators worth measuring, conceptual and methodological considerations to guide the construction of the global database, and a set of research questions and hypotheses to test. We, therefore, address these issues in a manner that we hope will stimulate further discussion and collaboration. © 2016 by Kerman University of Medical Sciences.
Full Text Available The field of mobile health (“m-Health” is evolving rapidly and there is an explosive growth of psychological tools on the market. Exciting high-tech developments may identify symptoms, help individuals manage their own mental health, encourage help seeking, and provide both preventive and therapeutic interventions. This development has the potential to be an efficient cost-effective approach reducing waiting lists and serving a considerable portion of people globally (“g-Health”. However, few of the mobile applications (apps have been rigorously evaluated. There is little information on how valid screening and assessment tools are, which of the mobile intervention apps are effective, or how well mobile apps compare to face-to-face treatments. But how feasible is rigorous scientific evaluation with the rising demands from policy makers, business partners, and users for their quick release? In this paper, developments in m-Health tools—targeting screening, assessment, prevention, and treatment—are reviewed with examples from the field of trauma and posttraumatic stress disorder. The academic challenges in developing and evaluating m-Health tools are being addressed. Evidence-based guidance is needed on appropriate research designs that may overcome some of the public and ethical challenges (e.g., equity, availability and the market-driven wish to have mobile apps in the “App Store” yesterday rather than tomorrow.
Zulu, Joseph M; Ali, Joseph; Hallez, Kristina; Kass, Nancy; Michelo, Charles; Hyder, Adnan A
An increase in post abortion care (PAC) research with adolescents, particularly in low- and middle-income countries, has brought to attention several associated research ethics challenges. In order to better understand the ethics context of PAC research with adolescents, we conducted a scoping review of published literature. Following a systematic search of PubMed, HINARI, and Google Scholar, we analysed articles meeting inclusion criteria to determine common themes across both the ethical challenges related to PAC research with adolescents and any available guidance on the identified challenges. The literature search identified an initial 3321 records of which 14 were included in analysis following screening. Several ethical challenges stem from abortion being a controversial, sensitive, and stigmatized topic in many settings. Ethical dilemmas experienced by researchers conducting adolescent PAC research included: difficulties in convincing local health providers to permit PAC research; challenges in recruiting and seeking consent due to sensitivity of the subject; effectively protecting confidentiality; managing negative effects of interventions; creating a non-prejudicial atmosphere for research; managing emotional issues among adolescents; and dealing with uncertainty regarding the role of researchers when observing unethical health care practices. Suggested strategies for addressing some of these challenges include: using several sources to recruit study participants, using research to facilitate dialogue on abortion, briefing health workers on any observed unethical practices after data collection, fostering a comprehensive understanding of contextual norms and values, selecting staff with experience working with study populations, and avoiding collection of personal identifiers. Addressing ethical challenges that researchers face when conducting PAC research with adolescents requires guidance at the individual, institutional, community, and international
Mshelia, C; Huss, R; Mirzoev, T; Elsey, H; Baine, S O; Aikins, M; Kamuzora, P; Bosch-Capblanch, X; Raven, J; Wyss, K; Green, A; Martineau, T
The single biggest barrier for countries in sub-Saharan Africa (SSA) to scale up the necessary health services for addressing the three health-related Millennium Development Goals and achieving Universal Health Coverage is the lack of an adequate and well-performing health workforce. This deficit needs to be addressed both by training more new health personnel and by improving the performance of the existing and future health workforce. However, efforts have mostly been focused on training new staff and less on improving the performance of the existing health workforce. The purpose of this paper is to disseminate the protocol for the PERFORM project and reflect on the key challenges encountered during the development of this methodology and how they are being overcome. The overall aim of the PERFORM project is to identify ways of strengthening district management in order to address health workforce inadequacies by improving health workforce performance in SSA. The study will take place in three districts each in Ghana, Tanzania and Uganda using an action research approach. With the support of the country research teams, the district health management teams (DHMTs) will lead on planning, implementation, observation, reflection and redefinition of the activities in the study. Taking into account the national and local human resource (HR) and health systems (HS) policies and practices already in place, 'bundles' of HR/HS strategies that are feasible within the context and affordable within the districts' budget will be developed by the DHMTs to strengthen priority areas of health workforce performance. A comparative analysis of the findings from the three districts in each country will add new knowledge on the effects of these HR/HS bundles on DHMT management and workforce performance and the impact of an action research approach on improving the effectiveness of the DHMTs in implementing these interventions. Different challenges were faced during the development of
Blackburn, Steven; McLachlan, Sarah; Jowett, Sue; Kinghorn, Philip; Gill, Paramjit; Higginbottom, Adele; Rhodes, Carol; Stevenson, Fiona; Jinks, Clare
In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI. Background: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research. Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded
Palinkas, Lawrence A.
Qualitative and mixed methods play a prominent role in mental health services research. However, the standards for their use are not always evident, especially for those not trained in such methods. This paper reviews the rationale and common approaches to using qualitative and mixed methods in mental health services and implementation research based on a review of the papers included in this special series along with representative examples from the literature. Qualitative methods are used to provide a “thick description” or depth of understanding to complement breadth of understanding afforded by quantitative methods, elicit the perspective of those being studied, explore issues that have not been well studied, develop conceptual theories or test hypotheses, or evaluate the process of a phenomenon or intervention. Qualitative methods adhere to many of the same principles of scientific rigor as quantitative methods, but often differ with respect to study design, data collection and data analysis strategies. For instance, participants for qualitative studies are usually sampled purposefully rather than at random and the design usually reflects an iterative process alternating between data collection and analysis. The most common techniques for data collection are individual semi-structured interviews, focus groups, document reviews, and participant observation. Strategies for analysis are usually inductive, based on principles of grounded theory or phenomenology. Qualitative methods are also used in combination with quantitative methods in mixed method designs for convergence, complementarity, expansion, development, and sampling. Rigorously applied qualitative methods offer great potential in contributing to the scientific foundation of mental health services research. PMID:25350675
Perry, J; Watkins, M; Gilbert, A; Rawlinson, J
Service user involvement has become a common feature of education programmes for mental health students. However, little is known about the effects of this type of education on the interpersonal skills of students taking part. This paper reports findings from a systematic review that formed part of a wider investigation into service user involvement in teaching interpersonal skills. The review aimed to locate and assess the quality of the published evidence relating to the effects of service user involvement on mental health students interpersonal skills and to synthesize results, using a definition of interpersonal skill that includes attitudes, empathy and skills as its key components. Results from this study indicate that the quality of evidence in this area is poor. However, sufficient synthesis of the evidence base was possible to allow conclusions and recommendations for both research and practice. Conclusions were that the involvement of service users in this area is both acceptable and valuable for students and had specific impacts on attitudes, empathy and skills. Some difficulties and reservations about the style of involvement are discussed. Recommendations for the conduct of future research are also made. © 2012 John Wiley & Sons Ltd.
Grimaud, Olivier; McCarthy, Mark; Conceição, Claudia
'Health' is an identifiable theme within the European Union multi-annual research programmes. Public Health Innovation and Research in Europe (PHIRE), led by the European Public Health Association, sought to identify public health research strategies in EU member states. Within PHIRE, national public health associations reviewed structures for health research, held stakeholder workshops and produced reports. This information, supplemented by further web searches, including using assisted translation, was analysed for national research strategies and health research strategies. All countries described general research strategies, outlining organizational and capacity objectives. Thematic fields, including health, are mentioned in some strategies. A health research strategy was identified for 15 EU countries and not for 12. Ministries of health led research strategies for nine countries. Public health research was identified in only three strategies. National research strategies did not refer to the European Union's health research programme. Public health research strategies of European countries need to be developed by ministries of health, working with the research community to achieve the European Research Area.
This report outlines the Health, Safety and Environmental Research Program being undertaken by the CFFTP. The Program objectives, relationship to other CFFTP programs, implementation plans and expected outputs are stated. Opportunities to build upon the knowledge and experience gained in safely managing tritium in the CANDU program, by addressing generic questions pertinent to tritium safety for fusion facilities, are identified. These opportunities exist across a broad spectrum of issues covering the anticipated behaviour of tritium in fusion facilities, the surrounding environment and in man
Jinks, Clare; Carter, Pam; Rhodes, Carol; Taylor, Robert; Beech, Roger; Dziedzic, Krysia; Blackburn, Steven; Hughes, Rhian; Ong, Bie Nio
The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes. We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships. The paper concludes about the more general applicability of the Centre's model for the long-term sustainability of PPI in research.
Usta, Jinan; Antoun, Jumana; Ambuel, Bruce; Khawaja, Marwan
PURPOSE Domestic violence is prevalent among women using primary health care services in Lebanon and has a negative effect on their health, yet physicians are not inquiring about it. In this study, we explored the attitudes of these women regarding involving the health care system in domestic violence management. METHODS We undertook a qualitative focus group study. Health care professionals in 6 primary health care centers routinely screened women for domestic violence using the HITS (Hurt, Insult, Threaten, Scream) instrument. At each center, 12 women who were screened (regardless of the result) were recruited to participate in a focus group discussion. RESULTS Most of the 72 women encouraged involvement of the health care system in the management of domestic violence and considered it to be a "socially accepted way to break the silence." Women expected health care professionals to have an "active conscience"; to be open minded, ready to listen, and unhurried; and to respect confidentiality. Additionally, they recommended mass media and community awareness campaigns focusing on family relationships to address domestic violence. CONCLUSIONS Addressing domestic violence through the health care system, if done properly, may be socially acceptable and nonoffensive even to women living in conservative societies such as Lebanon. The women in this study described characteristics of health professionals that would be conducive to screening and that could be extrapolated to the health care of immigrant Arab women.
Usta, Jinan; Antoun, Jumana; Ambuel, Bruce; Khawaja, Marwan
PURPOSE Domestic violence is prevalent among women using primary health care services in Lebanon and has a negative effect on their health, yet physicians are not inquiring about it. In this study, we explored the attitudes of these women regarding involving the health care system in domestic violence management. METHODS We undertook a qualitative focus group study. Health care professionals in 6 primary health care centers routinely screened women for domestic violence using the HITS (Hurt, Insult, Threaten, Scream) instrument. At each center, 12 women who were screened (regardless of the result) were recruited to participate in a focus group discussion. RESULTS Most of the 72 women encouraged involvement of the health care system in the management of domestic violence and considered it to be a “socially accepted way to break the silence.” Women expected health care professionals to have an “active conscience”; to be open minded, ready to listen, and unhurried; and to respect confidentiality. Additionally, they recommended mass media and community awareness campaigns focusing on family relationships to address domestic violence. CONCLUSIONS Addressing domestic violence through the health care system, if done properly, may be socially acceptable and nonoffensive even to women living in conservative societies such as Lebanon. The women in this study described characteristics of health professionals that would be conducive to screening and that could be extrapolated to the health care of immigrant Arab women. PMID:22585885
Rani, Manju; Bekedam, Hendrik; Buckley, Brian S
Repeated calls have been made in recent decades to increase investments in health research, especially in low- and middle-income countries (LMIC). However, the perceived low relevance and quality of health research, poor visibility of outputs, and difficulties in tracking current levels of and returns on investments have undermined efforts to advocate for additional investments in these countries. Some of these issues emanate from inadequate governance and management systems for health research at the national level, which are ineffective in tracking and steering the research portfolio and investments, ensuring quality, and facilitating access to research outputs. In spite of this, the value, necessity, and cost of performing health research management and governance functions are not well appreciated, especially in LMIC. To address this, the World Health Organization (WHO) Regional Office for the Western Pacific organized an expert consultation in August 2011, involving experts from 14 of its developed and developing member states and from leading research organizations such as the Wellcome Trust. The consultation identified essential health research governance and management functions that must be performed by appropriate organizational entities to maximize returns on health research investments. In addition, three specific areas for intervention were considered: (1) prospective research registration in publicly accessible national health research registries; (2) systematic health research data archiving and wider access; and (3) national research ethics systems. A consensus was reached on the need to invest more in essential health research and management functions, including establishing publicly accessible web-based national health research registries for prospective registration of health research, setting up systems to archive and share health research data, and improving the governance of research ethics committees. The consultation also concluded that the
Larkan, Fiona; Uduma, Ogenna; Lawal, Saheed Akinmayọwa; van Bavel, Bianca
The Centre for Global Health, Trinity College Dublin has as one of its goals, strengthening health systems in developing countries. In realising this goal we work across more than 40 countries with third-level, civil society, government, private sector and UN partners. Each of these requires that different relationships be established. Good principles must guide all global health research partnerships. An exploratory research project was undertaken with research partners of, and staff within, the Centre for Global Health. The aim was to build an evidence-based framework. An inductive exploratory research process was undertaken using a grounded theory approach in three consecutive phases: Phase I: An open-ended questionnaire was sent via email to all identified partners. Phase II: A series of consultative meetings were held with the staff of the Centre for Global Health. Phase III: Data sets from Phases I and II were applied to the development of a unifying framework. Data was analysed using grounded theory three stage thematic analysis - open, axial and selective coding. Relational and operational aspects of partnership were highlighted as being relevant across every partnership. Seven equally important core concepts emerged (focus, values, equity, benefit, leadership, communication and resolution), and are described and discussed here. Of these, two (leadership and resolution) are less often considered in existing literature on partnerships. Large complex partnerships can work well if all parties are agreed in advance to a common minimum programme, have been involved from the design stage, and have adequate resources specifically allocated. Based on this research, a framework for partnerships has been developed and is shared.
Boote, Jonathan D; Dalgleish, Mary; Freeman, Janet; Jones, Zena; Miles, Marianne; Rodgers, Helen
It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers' ideas are abandoned. To present a case study account of when an academic-led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved. A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted. University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR's Stroke Research Network. Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process. Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research. © 2012 John Wiley & Sons Ltd.
Collins, Karen; Boote, Jonathan; Ardron, David; Gath, Jacqui; Green, Tracy; Ahmedzai, Sam H
Patient and public involvement (PPI) has become an established theme within the UK health research policy and is recognised as an essential force in the drive to improve the quality of services and research. These developments have been particularly rapid in the cancer field. This paper outlines a model of PPI in research (known as the North Trent Cancer Research Network Consumer Research Panel, NTCRN CRP; comprising 38 cancer and palliative care patients/carers) and the key benefits and challenges to effective PPI in cancer research. The PPI model has become a sustainable, inclusive and effective way of implementing PPI within the cancer context. Challenges include (1) a lack of time and funding available to support the PPI model; (2) tensions between different stakeholder groups when developing and conducting health research; (3) panel members finding it difficult to effectively integrate into research meetings when their role and contribution is not made clear at the outset or when unfamiliar language and jargon are used and not explained; (4) some professionals remain unclear about the role and practical implications of PPI in research. However, notwithstanding its financial and organisational challenges, the way that the NTCRN CRP is supported has provided a solid base for it to flourish. PPI provides considerable opportunities for patients and the public to work collaboratively with professionals to influence the cancer research agenda, with the contribution of PPI to the research process being integral to the entire process from the outset, rather than appended to it. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Hall, Alix E; Bryant, Jamie; Sanson-Fisher, Rob W; Fradgley, Elizabeth A; Proietto, Anthony M; Roos, Ian
To ensure the provision of patient-centred health care, it is essential that consumers are actively involved in the process of determining and implementing health-care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health-care improvements. We propose a new active model of consumer engagement that aims to overcome these limitations. This model involves the following: (i) the development of a new measure of consumer perceptions; (ii) low cost and frequent electronic data collection of patient views of quality improvements; (iii) efficient feedback to the health-care decision makers; and (iv) active involvement of consumers that fosters power to influence health system changes. © 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.
Moon, O R
Early in the 1970s the Korean government recognized the necessity of Health Services Research (HSR). The law of the Korea Health Development Institute was promulgated in 1975, and a contribution from the Republic was combined with an Agency for International Development loan to field test low-cost health service strategies. A program to deploy Community Health Practitioners (CHPs), similar to family nurse practitioners or Medex has been demonstrated to be effective. The CHP training program grew from 9 in 1980 to 1343 in 1984. CHP's main functions are curative, preventive, educative, and administrative. They are selected registered nurses and/or midwives, where possible from serviced communities. They are trained in 24 weeks, including 12 weeks of clinical practice, in an anticipated recruiting post. CHPs help train village health volunteers (VHVs), who are literate women chosen by their communities. They work closely with the CHPs as a liaison with the village and in information gathering. An HSR orientation workshop held in Chuncheon in 1980, discussed role, policy, status, finance components, information systems, behavioral and manpower components, staff training, protocols for project development, HSR in the future and evaluation of the conference. In 1980, a National Workshop on Biomedical Research Methodology was also held, with World Health Organization and Korean consultants. Training of junior scientists would include introduction to scientific method, statement of problems, quantitative study technics, research proposals, and interpretation of results. The Korean Institute of Public Health sponsored a 1982 experts forum on the health care system, medical facilities, organizational management, financing and medical security, and health behavioral aspects. Training of trainers and lower level field workers, orientation of program managers, researchers, and communities themselves should all be training priorities. In future, CHPs should be refresher
Collins, Chimere C; Villa-Torres, Laura; Sams, Lattice D; Zeldin, Leslie P; Divaris, Kimon
Despite the widespread acknowledgement of the importance of childhood oral health, little progress has been made in preventing early childhood caries. Limited information exists regarding specific daily-life and community-related factors that impede optimal oral hygiene, diet, care, and ultimately oral health for children. We sought to understand what parents of young children consider important and potentially modifiable factors and resources influencing their children's oral health, within the contexts of the family and the community. This qualitative study employed Photovoice among 10 English-speaking parents of infants and toddlers who were clients of an urban WIC clinic in North Carolina. The primary research question was: "What do you consider as important behaviors, as well as family and community resources to prevent cavities among young children?" Five group sessions were conducted and they were recorded, transcribed verbatim and analyzed using qualitative research methodology. Inductive analyses were based on analytical summaries, double-coding, and summary matrices and were done using Atlas.ti.7.5.9 software. Good oral health was associated with avoidance of problems or restorations for the participants. Financial constraints affected healthy food and beverage choices, as well as access to oral health care. Time constraints and occasional frustration related to children's oral hygiene emerged as additional barriers. Establishment of rules/routines and commitment to them was a successful strategy to promote their children's oral health, as well as modeling of older siblings, cooperation among caregivers and peer support. Community programs and organizations, social hubs including playgrounds, grocery stores and social media emerged as promising avenues for gaining support and sharing resources. Low-income parents of young children are faced with daily life struggles that interfere with oral health and care. Financial constraints are pervasive, but parents
Köhler, M; Emmelin, M; Hjern, A; Rosvall, M
This study investigated the impact of being in family foster care on selected health determinants and participation in Child Health Services (CHS). Two groups of 100 children, born between 1992 and 2008, were studied using data from Swedish Child Health Services for the preschool period up to the age of six. The first group had been in family foster care, and the controls, matched for age, sex and geographic location, had not. Descriptive statistics were used to describe differences in health determinants and participation in Child Health Services between the two groups. The foster care group had higher health risks, with lower rates of breastfeeding and higher levels of parental smoking. They were less likely to have received immunisations and attended key nurse or physician visits and speech and vision screening. Missing data for the phenylketonuria test were more common in children in family foster care. Children in family foster care were exposed to more health risks than the control children and had lower participation in the universal child health programme during the preschool period. These results call for secure access to high-quality preventive health care for this particularly vulnerable group of children. ©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Likumahuwa, Sonja; Song, Hui; Singal, Robbie; Weir, Rosy Chang; Crane, Heidi; Muench, John; Sim, Shao-Chee; DeVoe, Jennifer E
This article introduces the Community Health Applied Research Network (CHARN), a practice-based research network of community health centers (CHCs). Established by the Health Resources and Services Administration in 2010, CHARN is a network of 4 community research nodes, each with multiple affiliated CHCs and an academic center. The four nodes (18 individual CHCs and 4 academic partners in 9 states) are supported by a data coordinating center. Here we provide case studies detailing how CHARN is building research infrastructure and capacity in CHCs, with a particular focus on how community practice-academic partnerships were facilitated by the CHARN structure. The examples provided by the CHARN nodes include many of the building blocks of research capacity: communication capacity and "matchmaking" between providers and researchers; technology transfer; research methods tailored to community practice settings; and community institutional review board infrastructure to enable community oversight. We draw lessons learned from these case studies that we hope will serve as examples for other networks, with special relevance for community-based networks seeking to build research infrastructure in primary care settings.
Biomedical engineering is a new area of research in medicine and biology, providing new concepts and designs for the diagnosis, treatment and prevention of various diseases. There are several types of biomedical engineering, such as tissue, genetic, neural and stem cells, as well as chemical and clinical engineering for health care. Many electronic and magnetic methods and equipments are used for the biomedical engineering such as Computed Tomography (CT) scans, Magnetic Resonance Imaging (MRI) scans, Electroencephalography (EEG), Ultrasound and regenerative medicine and stem cell cultures, preparations of artificial cells and organs, such as pancreas, urinary bladders, liver cells, and fibroblasts cells of foreskin and others. The principle of tissue engineering is described with various types of cells used for tissue engineering purposes. The use of several medical devices and bionics are mentioned with scaffold, cells and tissue cultures and various materials are used for biomedical engineering. The use of biomedical engineering methods is very important for the human health, and research and development of diseases. The bioreactors and preparations of artificial cells or tissues and organs are described here.
Mozambique's health sector is dealing with system-wide challenges. ... the Ministry's work on national health accounts, resource allocation, and national health ... a combined INS-FIOCRUS program, and the master's in public health and field ...
Full Text Available Abstract Background Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma or may have a broad aim to research a range of factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years. This study examines how six birth cohort studies in North America and Europe that involve genetic research handle key ethical, legal and social (ELS issues: recruitment, especially parental authority to include a child in research; initial parental consent and subsequent assent and/or consent from the maturing child; withdrawal; confidentiality and sample/data protection; handling sensitive information; and disclosure of results. Methods Semi-structured telephone interviews were carried out in 2008/09 with investigators involved in six birth cohort studies in Canada, Denmark, England, France, the Netherlands and the United States. Interviewees self-identified as being knowledgeable about ELS aspects of the study. Interviews were conducted in English. Results The studies vary in breadth of initial consent, but none adopt a blanket consent for future use of samples/data. Ethics review of new studies is a common requirement. Studies that follow children past early childhood recognise a need to seek assent/consent as the child matures. All studies limit access to identifiable data and advise participants of the right to withdraw. The clearest differences among studies concern
Schneebeli, Carole; O'Brien, Anthony; Lampshire, Debra; Hamer, Helen P
This paper describes a service user role in the mental health component of an undergraduate nursing programme in New Zealand. The paper provides a background to mental health nursing education in New Zealand and discusses the implications of recent reforms in the mental health sector. The undergraduate nursing programme at the University of Auckland has a strong commitment to service user involvement. The programme aims to educate nurses to be responsive and skillful in meeting the mental health needs of service users in all areas of the health sector and to present mental health nursing as an attractive option for nurses upon graduation. We outline the mental health component of the programme, with an emphasis on the development of the service user role. In the second half of the paper, we present a summary of responses to a student satisfaction questionnaire. The responses indicate that the service user role is an important element of the programme and is well received by a substantial proportion of students. We consider the implications for nursing education and for recruitment into mental health nursing. Finally, we discuss some issues related to service user involvement in the development of new models of mental health service delivery.
This article examines the role of community-based schools of nursing in the promotion of public health and research in poverty-stricken areas. This was a three-phase study (questionnaire and key-informants' interviews) that surveyed representatives of prelicensure associate and baccalaureate nursing schools (n=17), nursing-school key informants (n=6) and community leaders (n=10). A 13-question web-based survey and semi-structured interview of key informants elicited data on demographics, nursing program design, exposure of faculty and students to various research and health promotion methods, and beliefs about student involvement. Nursing schools participated minimally in community-based health promotion (CBHP) and community-based participatory research saw reduced need for student involvement in such activities, cited multiple barriers to active community collaboration, and reported restricted community partnerships. CBHP was recognized to be a valuable element of health care and student education, but is obstructed by many barriers. This study suggests that nursing schools are not taking full advantage of relationships with community leaders. Recommendations for action are given. © 2013 Wiley Periodicals, Inc.
Abayneh, Sisay; Lempp, Heidi; Alem, Atalay; Alemayehu, Daniel; Eshetu, Tigist; Lund, Crick; Semrau, Maya; Thornicroft, Graham; Hanlon, Charlotte
Background It is essential to involve service users in efforts to expand access to mental health care in integrated primary care settings in low- and middle-income countries (LMICs). However, there is little evidence from LMICs to guide this process. The aim of this study was to explore barriers to, and facilitators of, service user/caregiver involvement in rural Ethiopia to inform the development of a scalable approach. Methods Thirty nine semi-structured interviews were carried out with pur...
Small, Will; Maher, Lisa; Kerr, Thomas
Ethnographic research among people who inject drugs (PWID) involves complex ethical issues. While ethical review frameworks have been critiqued by social scientists, there is a lack of social science research examining institutional ethical review processes, particularly in relation to ethnographic work. This case study describes the institutional ethical review of an ethnographic research project using observational fieldwork and in-depth interviews to examine injection drug use. The review process and the salient concerns of the review committee are recounted, and the investigators' responses to the committee's concerns and requests are described to illustrate how key issues were resolved. The review committee expressed concerns regarding researcher safety when conducting fieldwork, and the investigators were asked to liaise with the police regarding the proposed research. An ongoing dialogue with the institutional review committee regarding researcher safety and autonomy from police involvement, as well as formal consultation with a local drug user group and solicitation of opinions from external experts, helped to resolve these issues. This case study suggests that ethical review processes can be particularly challenging for ethnographic projects focused on illegal behaviours, and that while some challenges could be mediated by modifying existing ethical review procedures, there is a need for legislation that provides legal protection of research data and participant confidentiality. Copyright © 2013 Elsevier Ltd. All rights reserved.
This bestselling book provides an accessible introduction to the concepts and practicalities of research methods in health and health services. This new edition has been extensively re-worked and expanded and now includes expanded coverage of: Qualitative methods Social research Evaluation methodology Mixed methods Secondary data analysis Literature reviewing and critical appraisal Evidence based practiceCovering all core methodologies in detail the book looks at the following kinds of health...
Mullany, Britta C; Hindin, Michelle J; Becker, Stan
Women's empowerment programs focus primarily on increasing the decision-making power of women, while male involvement/couple-friendly programs emphasize communication and negotiation within couples in making decisions. In-depth-interviews and focus group discussions were conducted to investigate patterns of household decision-making and the context of male involvement behaviors in Katmandu, Nepal. A questionnaire focusing on household decision-making and husbands' roles during pregnancy was administered to 592 pregnant women receiving antenatal services at a large maternity hospital. Multivariate regression techniques were used to compare male involvement behaviors across varying levels of women's autonomy, represented by different decision-making patterns. Higher women's autonomy, as measured by her sole final decision-making power, was associated with significantly lower male involvement in pregnancy health. After adjustment for other covariates, each additional decision in which a woman had final say was associated with a significantly lower likelihood of her husband accompanying her to antenatal care (OR=0.70, pempowerment and/or women's health must consider the dynamics and ramifications of including or excluding males in their efforts. Involving husbands and encouraging couples' joint decision-making in reproductive and family health may provide an important strategy in achieving both women's empowerment and women's health goals.
Viergever Roderik F
Full Text Available Abstract The lack of a mechanism that aligns financial flows for global health research towards public health priorities limits the impact of health research on health and health equity. Collaborative groups of health research funders appear to be particularly well situated to ameliorate this situation and to initiate discussion on aid alignment for global health research. One such group is the Heads of International Research Organizations (HIROs, which brings together a large number of major government and philanthropic funders of biomedical research. Surprisingly, there is hardly any information publicly available on HIROs' objectives, or on how it aims to achieve more harmonization in the field of research for health. Greater transparency on HIROs' objectives and on its current efforts towards addressing the gap between global health research needs and investments would be desirable, given the enormous potential benefits of more coordination by this group.
Kim, Junhyoung; Yamada, Naoko; Heo, Jinmoo; Han, Areum
The existing literature suggests that serious engagement in leisure activities leads to happiness, life satisfaction, and successful aging among older adults. This qualitative study was used to examine the benefits of serious involvement in leisure activities among older Korean adults who were members of a sports club. Using an analytic data analysis, we identified three main themes associated with the benefits of serious engagement in leisure activities: 1) the experience of psychological benefits, 2) the creation of social support, and 3) the enhancement of physical health. These themes indicate that, through serious involvement in certain physical activities, participants gain various health benefits, which may contribute to successful aging. PMID:25059979
Kim, Junhyoung; Yamada, Naoko; Heo, Jinmoo; Han, Areum
The existing literature suggests that serious engagement in leisure activities leads to happiness, life satisfaction, and successful aging among older adults. This qualitative study was used to examine the benefits of serious involvement in leisure activities among older Korean adults who were members of a sports club. Using an analytic data analysis, we identified three main themes associated with the benefits of serious engagement in leisure activities: 1) the experience of psychological benefits, 2) the creation of social support, and 3) the enhancement of physical health. These themes indicate that, through serious involvement in certain physical activities, participants gain various health benefits, which may contribute to successful aging.
Full Text Available The existing literature suggests that serious engagement in leisure activities leads to happiness, life satisfaction, and successful aging among older adults. This qualitative study was used to examine the benefits of serious involvement in leisure activities among older Korean adults who were members of a sports club. Using an analytic data analysis, we identified three main themes associated with the benefits of serious engagement in leisure activities: 1 the experience of psychological benefits, 2 the creation of social support, and 3 the enhancement of physical health. These themes indicate that, through serious involvement in certain physical activities, participants gain various health benefits, which may contribute to successful aging.
Full Text Available Abstract Background Since the Helsinki Declaration was introduced in 1964 as a code of practice for clinical research, it has generally been agreed that research governance is also needed in the field of public health and health promotion research. Recently, a range of factors led to the development of more stringent bureaucratic procedures, governing the conduct of low-risk population-based health research in the United Kingdom. Methods Our paper highlights a case study of the application process to medical research ethics committees in the United Kingdom for a study of the promotion of physical activity by health care providers. The case study presented here is an illustration of the challenges in conducting low-risk population-based health research. Results Our mixed-methods approach involved a questionnaire survey of and semi-structured interviews with health professionals (who were all healthy volunteers. Since our study does not involve the participation of either patients or the general population, one would expect the application to the relevant research ethics committees to be a formality. This proved not to be the case! Conclusion Research ethics committees could be counter-productive, rather than protecting the vulnerable in the research process, they can stifle low-risk population-based health research. Research ethics in health services research is first and foremost the responsibility of the researcher(s, and we need to learn to trust health service researchers again. The burden of current research governance regulation to address the perceived ethical problems is neither appropriate nor adequate. Senior researchers/academics need to educate and train students and junior researchers in the area of research ethics, whilst at the same time reducing pressures on them that lead to unethical research, such as commercial funding, inappropriate government interference and the pressure to publish. We propose that non-invasive low
Walsh, Jennifer L; Ward, L Monique
These studies investigate connections between magazine reading and involvement and young people's sexual health knowledge, self-efficacy, intentions, and contraception use. Study 1 assessed sexual health behaviors and magazine reading among 579 undergraduate students (69% were female; 68% were White; M(age) = 19.73). As expected, more frequent reading of mainstream magazines was associated with greater sexual health knowledge, safe-sex self-efficacy, and consistency of using contraception, although results varied across sex and magazine genre. Study 2 replicated and expanded on these findings with a survey of 422 undergraduate students (51% were female; 71% were White; 49% were age 18 or younger), incorporating a more extensive knowledge scale, questions about safe-sex intentions, and measures of magazine involvement. Results suggest that magazine use is associated with positive sexual health outcomes among young people.
Borrell, Carme; Malmusi, Davide
This article aims to review conceptual frameworks and some principles to be considered in research on social determinants of health and health inequalities. Some indicators of research on these issues in Spain are described. General expenditure on research and development in Spain is far from the Organisation for Economic Co-operation and Development mean. In addition, both globally and within Spain, the scientific production on health inequalities is very low, especially compared with other research areas. The budget for research on health inequalities is also reduced. A striking example is provided by analysis of the projects funded by the Marató de TV3, which seems to have little interest in funding research on health inequalities. However, both the scientific production and project financing on health inequalities have increased in the last decade. Finally, to advance research on health inequalities and its contribution to the incorporation of health in all policies, recommendations are made, which include redefining priorities, ensuring resources and promoting knowledge translation. Copyright © 2010 SESPAS. Published by Elsevier Espana. All rights reserved.
Full Text Available Abstract Background Despite the increasing mobilization of researchers and funding organizations around knowledge translation (KT in Canada and elsewhere, many questions have been only partially answered, particularly in the field of population health. This article presents the results of a systematic process to draw out possible avenues of collaboration for researchers, practitioners and decision-makers who work in the area of KT. The main objective was to establish a research agenda on knowledge translation in population health. Methods Using the Concept Mapping approach, the research team wanted to identify priority themes for the development of research on KT in population health. Mapping is based on multivariate statistical analyses (multidimensional scaling and hierarchical cluster analysis in which statements produced during a brainstorming session are grouped in weighted clusters. The final maps are a visual representation of the priority themes of research on KT. Especially designed for facilitating consensus in the understanding and organization of various concepts, the Concept Mapping method proved suitable for achieving this objective. Results The maps were produced by 19 participants from university settings, and from institutions within the health and social services network. Three main perspectives emerge from this operation: (1 The evaluation of the effectiveness of KT efforts is one of the main research priorities; (2 The importance of taking into consideration user contexts in any KT effort; (3 The challenges related to sharing power for decision-making and action-taking among various stakeholder groups. These perspectives open up avenues of collaboration for stakeholders who are involved in research on KT. Besides these three main perspectives, the concept maps reveal three other trends which should be emphasized. Conclusion The Concept Mapping process reported in this article aimed to provoke collective reflection on the
Edwards, Barry; Stickney, Beth; Milat, Andrew; Campbell, Danielle; Thackway, Sarah
Issue addressed An organisational culture that values and uses research and evaluation (R&E) evidence to inform policy and practice is fundamental to improving health outcomes. The 2016 NSW Government Program Evaluation Guidelines recommend investment in training and development to improve evaluation capacity. The purpose of this paper is to outline the approaches taken by the NSW Ministry of Health to develop R&E capacity and assess these against existing models of practice. Method The Ministry of Health's Centre for Epidemiology and Evidence (CEE) takes an evidence-based approach to building R&E capacity in population health. Strategies are informed by: the NSW Population Health Research Strategy, R&E communities of practice across the Ministry and health Pillar agencies and a review of the published evidence on evaluation capacity building (ECB). An internal survey is conducted biennially to monitor research activity within the Ministry's Population and Public Health Division. One representative from each of the six centres that make up the Division coordinates completion of the survey by relevant staff members for their centre. Results The review identified several ECB success factors including: implementing a tailored multifaceted approach; an organisational commitment to R&E; and offering experiential training and ongoing technical support to the workforce. The survey of research activity found that the Division funded a mix of research assets, research funding schemes, research centres and commissioned R&E projects. CEE provides technical advice and support services for staff involved in R&E and in 2015, 22 program evaluations were supported. R&E capacity building also includes a series of guides to assist policy makers, practitioners and researchers to commission, undertake and use policy-relevant R&E. Staff training includes workshops on critical appraisal, program logic and evaluation methods. From January 2013 to June 2014 divisional staff published 84
Stuttaford, Maria Clasina; Boulle, Therese; Haricharan, Hanne Jensen; Sofayiya, Zingisa
In this paper, we reflect on public and patient involvement (PPI), the right to health and how human rights principles provide values for implementing mechanisms of participation and accountability. Globally, new models of formalized participation, imposed top-down by State institutions, have emerged in recent health system reforms. There is an on-going challenge to ensure that the prescribed mechanisms, or procedural rights, for implementing the substantive right to heath influence social ac...
Stevens, Katie; Bernal, Cathy; Devis, Kate; Southgate, Andrew
The aim of this study was to gain insight into service users' experiences of participating in recruitment for Adult, Mental Health and Child nursing studies at the authors' university; to establish potential motivations behind such participation; and to make suggestions for improved future practice. The involvement of service users in nurse education and recruitment has for some years been required by the Nursing and Midwifery Council, but there is a dearth of publications on the meaning of that involvement to participating service users. It is hoped that this study will contribute to this body of knowledge. A phenomenological approach was selected, field-specific focus groups of service users being facilitated using a semi-structured interview format; these were audio recorded and transcribed. The data was analysed using thematic analysis. Participation was subject to the service users having been involved in recruitment to nursing studies at the authors' university and the focus groups took place either at the university or at the child participants' school. Themes identified demonstrated largely positive experiences and a sense of meaningful involvement for all concerned. Findings indicated a close link between the values of the participants and those of the wider NHS, benefits to a sense of wellbeing and achievement, as well as the need for greater ownership of the recruitment process by service users. Potential lessons for academics wishing to promote greater service user involvement in student recruitment are articulated. Copyright © 2017 Elsevier Ltd. All rights reserved.
Kirigia Joses M
. Four out of the ten countries reported that they had a budget line for health research in the Ministry of Health budget document. Conclusion Governments of countries of the African Region, with the support of development partners, private sector and civil society, urgently need to improve the research policy environment by developing health research policies, strategic plans, legislations, programmes and rolling plans with the involvement of all stakeholders, e.g., relevant sectors, research organizations, communities, industry and donors. In a nutshell, development of high-performing national health research systems in the countries of the WHO African Region, though optional, is an imperative. It may be the only way of breaking free from the current vicious cycle of ill-health and poverty.
Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A
This retrospective observational study investigated the frequency of reporting ethical approval and informed consent in recently published oral and maxillofacial surgery (OMS) research involving human subjects. All research involving human subjects published in the International Journal of Oral and Maxillofacial Surgery, Journal of Oral and Maxillofacial Surgery, British Journal of Oral and Maxillofacial Surgery, and Journal of Cranio-Maxillofacial Surgery during January to June 2005-2007 were analysed for disclosure of ethical approval by a local ethical committee and obtaining informed consent from the subjects. 534 articles were identified; ethical approval was documented in 118 (22%) and individual patient consent in 135 (25%). 355 reports (67%) did not include a statement on ethical approval or informed consent and only 74 reports (14%) disclosed statements of both. Ethical documentation in retrospective and observational studies was scant; 12% of randomised controlled trials and 38% of non-random trials did not report both of ethical protections. Most recent OMS publications involving humans failed to mention ethical review or subjects' consent. Authors must adhere to the international research ethics guidelines and journal instructions, while editors should play a gatekeeper role to protect research participants, uphold scientific integrity and maintain public trust in the experimental process and OMS profession.
Porteri, Corinna; Petrini, Carlo
Alzheimer's disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder's causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer's disease. This raises the controversial issue of whether patients with Alzheimer's disease are competent to give their consent for research participation. We discuss the case of subjects with Alzheimer's disease who may have impaired decision-making capacity and who could be involved in research protocols, taking into consideration aspects of the Italian normative framework, which requires a court-appointed legal representative for patients who are not able to give consent and does not recognise the legal value of advance directives. We show that this normative framework risks preventing individuals with Alzheimer's disease from taking part in research and that a new policy that favours research while promoting respect for patients' well-being and rights needs to be implemented. We believe that concerns about the difficulty of obtaining fully valid consent of patients with Alzheimer's disease should not prevent them from participating in clinical trials and benefiting from scientific progress. Therefore, we argue that the requirement for patients to have a legal representative may not be the best solution in all countries and clinical situations, and suggest promoting the role of patients' family members in the decision-making process. In addition, we outline the possible role of advance directives and ethics committees.
Imai, H; Nakao, H; Tsuchiya, M; Kuroda, Y; Katoh, T
(1) To examine whether prevalence of burnout is higher among community psychiatric nurses working under recently introduced job specific work systems than among public health nurses (PHNs) engaged in other public health services. (2) To identify work environment factors potentially contributing to burnout. Two groups were examined. The psychiatric group comprised 525 PHNs primarily engaged in public mental health services at public health centres (PHCs) that had adopted the job specific work system. The control group comprised 525 PHNs primarily engaged in other health services. Pines' Burnout Scale was used to measure burnout. Respondents were classified by burnout score into three groups: A (mentally stable, no burnout); B (positive signs, risk of burnout); and C (burnout present, action required). Groups B and C were considered representative of "burnout". A questionnaire was also prepared to investigate systems for supporting PHNs working at PHCs and to define emergency mental health service factors contributing to burnout. Final respondents comprised 785 PHNs. Prevalence of burnout was significantly higher in the psychiatric group (59.2%) than in the control group (51.5%). Responses indicating lack of job control and increased annual frequency of emergency overtime services were significantly correlated with prevalence of burnout in the psychiatric group, but not in the control group. Prevalence of burnout is significantly higher for community psychiatric nurses than for PHNs engaged in other services. Overwork in emergency services and lack of job control appear to represent work environment factors contributing to burnout.
Gloppen, Kari; McMorris, Barbara; Gower, Amy; Eisenberg, Marla
Bullying involvement as a victim or perpetrator is associated with depression and suicidality, and American Indian (AI) youth experience a disproportionately high rate of these mental health issues. This study assessed whether AI young people involved in bullying were more likely to experience negative mental health problems than AI youth who were not involved in bullying, and identified protective factors that might support this particularly vulnerable population. Data come from 1,409 8th, 9th, and 11th Grade AI students who completed the 2013 Minnesota Student Survey. Logistic regression models estimated associations between bullying involvement and internalizing symptoms and suicidality. Selected protective factors (internal assets, empowerment, positive student-teacher relationships, and feeling safe at school) were also examined as independent variables. All forms of bullying perpetration and victimization were associated with increased risk for mental health problems (odds ratio [OR]: 1.57-2.87). AI youth who reported higher levels of protective factors were less likely to report internalizing symptoms and suicidality even in the presence of bullying involvement. For example, AI youth who reported high levels of internal assets had half the odds of reporting internalizing symptoms compared with those with low levels of internal assets (OR = 0.53, confidence interval [CI] 0.38, 0.74). Findings suggest that, similar to a general sample of students, bullying-involved AI students are significantly more likely to experience mental health problems. Promoting school as a safe place and incorporating culturally relevant programming to promote internal assets such as positive identity, social competence, and empowerment among AI students could help reduce the negative effects of bullying involvement. (PsycINFO Database Record (c) 2017 APA, all rights reserved).
Abayneh, Sisay; Lempp, Heidi; Alem, Atalay; Alemayehu, Daniel; Eshetu, Tigist; Lund, Crick; Semrau, Maya; Thornicroft, Graham; Hanlon, Charlotte
It is essential to involve service users in efforts to expand access to mental health care in integrated primary care settings in low- and middle-income countries (LMICs). However, there is little evidence from LMICs to guide this process. The aim of this study was to explore barriers to, and facilitators of, service user/caregiver involvement in rural Ethiopia to inform the development of a scalable approach. Thirty nine semi-structured interviews were carried out with purposively selected mental health service users (n = 13), caregivers (n = 10), heads of primary care facilities (n = 8) and policy makers/planners/service developers (n = 8). The interviews were audio-recorded and transcribed in Amharic, and translated into English. Thematic analysis was applied. All groups of participants supported service user and caregiver involvement in mental health system strengthening. Potential benefits were identified as (i) improved appropriateness and quality of services, and (ii) greater protection against mistreatment and promotion of respect for service users. However, hardly any respondents had prior experience of service user involvement. Stigma was considered to be a pervasive barrier, operating within the health system, the local community and individuals. Competing priorities of service users included the need to obtain adequate individual care and to work for survival. Low recognition of the potential contribution of service users seemed linked to limited empowerment and mobilization of service users. Potential health system facilitators included a culture of community oversight of primary care services. All groups of respondents identified a need for awareness-raising and training to equip service users, caregivers, service providers and local community for involvement. Empowerment at the level of individual service users (information about mental health conditions, care and rights) and the group level (for advocacy and representation) were considered
Wozney, Lori M; Baxter, Pamela; Fast, Hilary; Cleghorn, Laura; Hundert, Amos S; Newton, Amanda S
Research in the fields of human performance technology and human computer interaction are challenging the traditional macro focus of usability testing arguing for methods that help test moderators assess "use in context" (ie, cognitive skills, usability understood over time) and in authentic "real world" settings. Human factors in these complex test scenarios may impact on the quality of usability results being derived yet there is a lack of research detailing moderator experiences in these test environments. Most comparative research has focused on the impact of the physical environment on results, and rarely on how the sociotechnical elements of the test environment affect moderator and test user performance. Improving our understanding of moderator roles and experiences with conducting "real world" usability testing can lead to improved techniques and strategies To understand moderator experiences of using Web-conferencing software to conduct remote usability testing of 2 eHealth interventions. An exploratory case study approach was used to study 4 moderators' experiences using Blackboard Collaborate for remote testing sessions of 2 different eHealth interventions. Data collection involved audio-recording iterative cycles of test sessions, collecting summary notes taken by moderators, and conducting 2 90-minute focus groups via teleconference. A direct content analysis with an inductive coding approach was used to explore personal accounts, assess the credibility of data interpretation, and generate consensus on the thematic structure of the results. Following the convergence of data from the various sources, 3 major themes were identified: (1) moderators experienced and adapted to unpredictable changes in cognitive load during testing; (2) moderators experienced challenges in creating and sustaining social presence and untangling dialogue; and (3) moderators experienced diverse technical demands, but were able to collaboratively troubleshoot with test users
This article explores the recent ferment surrounding professional self-regulation in medicine and other health professions. It reviews the academic literature and sets out an agenda for research. The first section considers definitions, acknowledging the particularly complex regulatory maze in UK health care at present, in which professional self-regulation is only one part. The second section reviews academic writing, currently dispersed among the disciplines. 'The logic of light touch regulation', a feature of the 19th century establishment of the General Medical Council, can perhaps shed light on present debates. Alongside the intense political spotlight on regulation in the wake of the Bristol case, consumer-led research and consumer pressure to rethink the principles of regulation has emerged. This is examined in the third section. Finally, themes for research are advanced. First, there is a need to explore the changing relationship between the state and professions and implications, not only for the professions but for health care more broadly. Second, calls for a new professionalism need to be given clearer content. Third, the moves towards more lay involvement in regulatory bodies need study. Fourth, questions of human rights and professional registers must be explored. Fundamental questions of what professional self-regulation can hope to achieve and where it fits in relation to government ambitions as a whole, remain unresolved. Alongside the work programme of the new overarching regulator, there may well be scope for a new style of public enquiry covering the whole territory of regulation.
Hanusaik, Nancy; Sabiston, Catherine M.; Kishchuk, Natalie; Maximova, Katerina; O'Loughlin, Jennifer
In the context of the emerging field of public health services and systems research, this study (i) tested a model of the relationships between public health organizational capacity (OC) for chronic disease prevention, its determinants (organizational supports for evaluation, partnership effectiveness) and one possible outcome of OC (involvement…
Lempp, H; Abayneh, S; Gurung, D; Kola, L; Abdulmalik, J; Evans-Lacko, S; Semrau, M; Alem, A; Thornicroft, G; Hanlon, C
The aims of this paper are to: (i) explore the experiences of involvement of mental health service users, their caregivers, mental health centre heads and policy makers in mental health system strengthening in three low- and middle-income countries (LMICs) (Ethiopia, Nepal and Nigeria); (ii) analyse the potential benefits and barriers of such involvement; and (iii) identify strategies required to achieve greater service user and caregiver participation. A cross-country qualitative study was conducted, interviewing 83 stakeholders of mental health services. Our analysis showed that service user and caregiver involvement in the health system strengthening process was an alien concept for most participants. They reported very limited access to direct participation. Stigma and poverty were described as the main barriers for involvement. Several strategies were identified by participants to overcome existing hurdles to facilitate service user and caregiver involvement in the mental health system strengthening process, such as support to access treatment, mental health promotion and empowerment of service users. This study suggests that capacity building for service users, and strengthening of user groups would equip them to contribute meaningfully to policy development from informed perspectives. Involvement of service users and their caregivers in mental health decision-making is still in its infancy in LMICs. Effective strategies are required to overcome existing barriers, for example making funding more widely available for Ph.D. studies in participatory research with service users and caregivers to develop, implement and evaluate approaches to involvement that are locally and culturally acceptable in LMICs.
Graham Ian D
Full Text Available Abstract The Canadian Institutes of Health Research (CIHR is Canada's premier health-research funding agency. We fund nearly 14,000 researchers and trainees in four theme areas: biomedical, clinical, health services, and population and public-health research. Our mandate is 'to excel according to international standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system'. Knowledge synthesis is a key element of the knowledge-translation objectives of CIHR, as outlined in our definition of knowledge-translation.
Rollans, Mellanie; Kohlhoff, Jane; Meade, Tanya; Kemp, Lynn; Schmied, Virginia
Universal screening for maternal depression and assessment of psychosocial risks has been integrated into the routine perinatal care provided in many Australian hospitals, but to date, partners/fathers have been largely excluded from the process. This study explored the ways in which clinicians in health service settings include partners who attend antenatal and postnatal visits with women. Qualitative data were collected using observations (n = 54), interviews (n = 60), and discussion groups (n = 7) with midwives and child and family health nurses who conducted the appointments. Transcripts from observations, interviews, and discussion groups underwent qualitative analysis, and key themes were identified. Results showed partners to have little or no involvement in psychosocial assessment and depression screening. Thematic analysis revealed four key themes: negotiating partner exclusion, partial inclusion, women's business or a couple concern? and they know anyway. Partner involvement appeared to be challenged particularly by mandatory interpersonal violence screening, which, according to health service policy, is to be conducted confidentially. Overall, results highlighted partner involvement in perinatal depression screening and psychosocial assessment processes and identified some of the benefits such as partner disclosure, but also the challenges and complexities of inclusion of partners. Clinical implications and directions for further education and research are discussed. © 2016 Michigan Association for Infant Mental Health.
Apr 15, 2016 ... ... by the University of Ghana School of Public Health, in partnership with WAHO and IDRC. Health systems research experts and partners from across the ... adopted direct payment for health services as the primary means.
Sep 7, 2016 ... IDRC's Maternal and Child Health program supports research that seeks to ... health; and; Interrelationships and root causes of poor health outcomes and ... The successful candidate will contribute to the program's work on ...
Given limited resources policymakers need to decide about how much and in what areas of health services research (HSR) to invest. The purpose of this study is to provide guidance for priority setting of HSR projects based on economic theory. The conceptual analysis starts from the premise that competition in health care is valuable-a position that seems to predominate among Western policymakers. The principle of competition rests on economic theory and, in particular, its branch of welfare economics. Based on economic theory, the role of HSR is to detect and alleviate information asymmetry, negative externalities, and harm caused by competition and inappropriate incentives for competition. A hierarchy of HSR projects is provided; following the ethical principle of harm ('do not harm'), the detection and prevention of harm would receive highest priority among HSR projects. Agreeing that competition is valuable in achieving efficiency and quality of care (and therefore agreeing to the assumptions of economic theory) implies accepting the role of HSR in detecting market failure and the HSR hierarchy as suggested. Disagreement would require an alternative coherent concept of improving efficiency and quality of care.
Nielsen, Annemette Ljungdalh; Smith Jervelund, Signe; Villadsen, Sarah Fredsted
Aims: This paper examines the importance of recruitment site in relation to the recruitment of ethnic minorities into health research. It presents a synthesis of experiences drawn from six interlinked Danish studies which applied different methods and used healthcare facilities and educational...... study designs also depended on the possibility of singling out specific locations with a high proportion of the relevant ethnic minority target population. Conclusions:The findings, though based on a small number of cases, indicate that health professionals and healthcare institutions, despite...... settings as sites for recruitment. Methods: Inspired by interpretive reviewing, data on recruitment methods from the different studies were synthesized with a focus on the various levels of recruitment success achieved. This involved an iterative process of comparison, analysis and discussion...
Nørgaard, Lotte Stig; Sørensen, Ellen Westh
Introduction The focus in clinical pharmacy practice is and has for the last 30-35 years been on changing the role of pharmacy staff into service orientation and patient counselling. One way of doing this is by involving staff in change process and as a researcher to take part in the change process by establishing partnerships with staff. On the background of the authors' widespread action research (AR)-based experiences, recommendations and comments for how to conduct an AR-study is described, and one of their AR-based studies illustrate the methodology and the research methods used. Methodology AR is defined as an approach to research which is based on a problem-solving relationship between researchers and clients, which aims at both solving a problem and at collaboratively generating new knowledge. Research questions relevant in AR-studies are: what was the working process in this change oriented study? What learning and/or changes took place? What challenges/pitfalls had to be overcome? What were the influence/consequences for the involved parts? When to use If you want to implement new services and want to involve staff and others in the process, an AR methodology is very suitable. The basic advantages of doing AR-based studies are grounded in their participatory and democratic basis and their starting point in problems experienced in practice. Limitations Some of the limitations in AR-studies are that neither of the participants in a project steering group are the only ones to decide. Furthermore, the collective process makes the decision-making procedures relatively complex.
Wendler, David; Shah, Seema
There is wide agreement that communities in lower-income countries should benefit when they participate in multinational research. Debate now focuses on how and to what extent these communities should benefit. This debate has identified compelling reasons to reject the claim that whatever benefits a community agrees to accept are necessarily fair. Yet, those who conduct clinical research may conclude from this rejection that there is no reason to involve communities in the process of deciding how they benefit. Against this possibility, the present manuscript argues that involving host communities in this process helps to promote four important goals: (1) protecting host communities, (2) respecting host communities, (3) promoting transparency, and (4) enhancing social value. Published by Oxford University Press on behalf of the Journal of Medicine and Philosophy, Inc. 2015.
McKenzie, Monica M; Modeste, Naomi N; Marshak, Helen Hopp; Wilson, Colwick
Most studies that involve Black Seventh-Day Adventists (SDAs) have been conducted in the United States. We sought to examine the association between religious involvement and lifestyle practices among Black SDAs in Canada. A convenience sample of 509 Black SDA church members 18 years and older completed a self-administered questionnaire, assessing religious involvement and seven lifestyle practices promoted by the SDA church: diet, physical activity, water intake, exposure to sunlight, alcohol use, caffeine and tobacco use, and rest. Compliance with lifestyle practices ranged from a low of 10% meeting fitness guidelines to a high of 99% abstaining from tobacco products. Religious involvement and lifestyle were positively related (rs = .11, p < .05). Multivariate analyses indicated that private religious practice (β = .16, p =.003), importance of the health principles (β = .17, p = .003), and acceptance of health principles (β = .65, p = .00001) significantly predicted the number of behaviors practiced. Greater religious involvement is associated with positive lifestyle practices but is not an independent predictor of lifestyle practices for Black Canadian SDAs. © 2014 Society for Public Health Education.
Kretschmar, Jeff M.; Flannery, Daniel J.
This article examined the relationship between suicide behaviors and displacement, as defined by out-of-home placement, in a sample of juvenile-justice-involved youth with mental health issues. Participants included boys and girls between the ages of 10 and 18 who were enrolled in a juvenile justice diversion program for children with mental or…
Basson, J.K.; Hanekom, A.P.; Coetzee, F.C.; Lloyd, D.C.
An accident, involving the loss of an iridium-192 radiographic source and the subsequent serious overexposure of a third party, is described. Health physics aspects, particularly dosimetrical aspects are addressed and compared with results obtained by means of chromosome aberration dosimetry. Details are provided on the medical observations and treatment of the patient [af
Viergever, Roderik F; Hendriks, Thom C C
The Dutch government funds health research in several ways. One component of public funding consists of funding programmes issued by the Netherlands Organisation for Health Research and Development (ZonMw). The majority of ZonMw's programmes provide funding for research in specific health research areas. Such targeted funding plays an important role in addressing knowledge gaps and in generating products for which there is a need. Good governance of the allocation of targeted funding for health research requires three elements: a research agenda, an overview of the health research currently being conducted, and a transparent decision-making process regarding the distribution of funds. In this article, we describe how public funding for health research is organized in the Netherlands and how the allocation of targeted funds is governed. By describing the questions that the current model of governance raises, we take a first step towards a debate about the governance of targeted public funding for health research in the Netherlands.
Evans, David; Bird, Emma; Gibson, Andy; Grier, Sally; Chin, Teh Li; Stoddart, Margaret; MacGowan, Alasdair
Patient and public involvement (PPI) is increasingly recognized as bringing a range of benefits to clinical and health services research. Recent systematic reviews have identified and synthesized many benefits (eg higher recruitment rates) and some costs (eg extra time need). Much of the literature focuses on PPI in long-term conditions rather than more acute health care in which the majority of microbiological research is undertaken. The aim was to identify the extent, quality and impact of PPI in antimicrobial drug development research. Objectives were to identify any relevant reporting of PPI in antimicrobial research; appraise the quality of reporting on PPI using recognized PPI reporting and critical appraisal tools; and extract and synthesize data on the impact of PPI. A systematic review was undertaken with a search strategy based on four word groups (PPI, patients, antimicrobial drug development and outcomes). Eight online databases were searched. English language publication, publication between 1996 and 2016 and studies describing PPI in antimicrobial drug development research. No studies were found through online searching that met the search strategy and inclusion criteria. One relevant protocol paper with a brief mention of PPI was identified through expert recommendation. Commentary papers recommending PPI were identified through website searching and expert opinion. Despite strong policy guidance encouraging PPI at the international and national levels, and anecdotal accounts of PPI taking place, evidence for the extent, quality and impact of PPI in antimicrobial drug development research has not yet appeared in the peer-reviewed literature. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn
It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.
Pandey, Shilpi; Porter, Maureen; Bhattacharya, Siladitya
Researchers are being urged to involve patients in the design and conduct of studies in health care with limited insight at present into their needs, abilities or interests. This is particularly true in the field of reproductive health care where many conditions such as pregnancy, menopause and fertility problems involve women who are otherwise healthy. To ascertain the feasibility of involving patients and members of the public in research on women's reproductive health care (WRH). University and tertiary care hospital in north-east Scotland; 37 women aged 18-57. Four focus groups and one individual interview were audio-recorded and verbatim transcripts analysed thematically by two researchers using a grounded theory approach. Most participants were interested in WRH, but some participated to promote a health issue of special concern to them. Priorities for research reflected women's personal concerns: endometriosis, polycystic ovary syndrome, menopause, fertility risks of delaying parenthood and early post-natal discharge from hospital. Women were initially enthusiastic about getting involved in research on WRH at the design or delivery stage, but after discussion in focus groups, some questioned their ability to do so or the time available to commit to research. None of the respondents expected payment for any involvement, believing that the experience would be rewarding enough in itself. Involving patients and public in research would include different perspectives and priorities; however, recruiting for this purpose would be challenging. © 2014 John Wiley & Sons Ltd.
Nov 2, 2013 ... Health research. Health research is defined very broadly in section 1 of the NHA, as ... national ethical guidelines issued by the Department of Health define research as a ... This definition suggests that section 71 only applies to studies ... nursing, rehabilitative, palliative, convalescent, preventative or other.
Three public health projects in Uganda and Sierra Leone are used to illustrate a new approach to construction of health buildings in villages. Emphasis is placed on community involvement. The health projects were comprehensive and relied on health education, employment of local village health workers, and establishment of village health committees. The objective of community involvement was described as encouragement of people to change their own diets and living conditions. This approach to primary health care is considered to be a strong basis for sustainable social development. Each of the three communities initiated the building projects slightly differently. There was a range of structures: traditional meeting halls, simple rooms with imported materials and a pit latrine, new buildings combining local and imported materials and labor, new nontraditional buildings, rehabilitated existing nontraditional buildings with imported labor and materials, and temporary mobile clinics. Community involvement was at different levels. All three projects were the result of a combined effort of national governments or mission hospitals, nongovernmental organizations, and the host community. The following should be considered before beginning construction: a suitable site, appropriate staff accommodation, the likely motivation of the host community, seasonality, local materials available, availability of skilled labor, and design. A plan of work during construction should include a building design, site supervision, transportation of local and non-local materials, unskilled labor, and skilled labor. Village health committees with or without government help would be responsible for maintenance of buildings after construction. A key feature of this approach is the assessment of the community's ability and capacity to contribute.
Derek de Beurs
Full Text Available BackgroundAlthough many web-based mental health interventions are being released, the actual uptake by end users is limited. The marginal level of engagement of end users when developing these interventions is recognized as an important cause for uptake problems. In this paper, we offer our perceptive on how to improve user engagement. By doing so, we aim to stimulate a discourse on user involvement within the field of online mental health interventions.MethodsWe shortly describe three different methods (the expert-driven method, intervention mapping, and scrum that were currently used to develop web-based health interventions. We will focus to what extent the end user was involved in the developmental phase, and what the additional challenges were. In the final paragraph, lessons learned are summarized, and recommendations provided.ResultsEvery method seems to have its trade-off: if end users are highly involved, availability of end users and means become problematic. If end users are less actively involved, the product may be less appropriate for the end user. Other challenges to consider are the funding of the more active role of technological companies, and the time it takes to process the results of shorter development cycles.ConclusionThinking about user-centered design and carefully planning, the involvement of end users should become standard in the field of web-based (mental health. When deciding on the level of user involvement, one should balance the need for input from users with the availability of resources such as time and funding.
Tong, Vincent C. H.
The study of Earth Sciences requires an interdisciplinary approach as it involves understanding scientific knowledge originating from a wide spectrum of research areas. Not only does it include subjects ranging from, for instance, hydrogeology to deep crustal seismology and from climate science to oceanography, but it also has many direct applications in closely related disciplines such as environmental engineering and natural resources management. While research crossing traditional disciplinary boundaries in geosciences is becoming increasingly common, there is only limited integration of interdisciplinary research in the teaching of the subject. Given that the transition from undergraduate education based on subject modules to postgraduate interdisciplinary research is never easy, such integration is a highly desirable pedagogical approach at both undergraduate and postgraduate levels. My presentation is based on a recent teaching project involving novel design of an undergraduate course. The course is implemented in order to address the synergy between research and teaching (Tong, 2009). This project has been shown to be effective and successful in teaching geosciences undergraduates at the University of London. The module consists of studying core geophysical principles and linking them directly to a selection of recently published research papers in a wide range of interdisciplinary applications. Research reviewing and reporting techniques are systematically developed, practised and fully integrated into teaching of the core scientific theories. A fully-aligned assignment with a feedback website invites the students to reflect on the scientific knowledge and the study skills related to research literature they have acquired in the course. This teaching project has been recognized by a teaching award (http://www.clpd.bbk.ac.uk/staff/BETA). In this presentation, I will discuss how undergraduate teaching with a focus on research literature in Earth Sciences can
Griffith, Derek M; Shelton, Rachel C; Kegler, Michelle
Qualitative methods have long been a part of health education research, but how qualitative approaches advance health equity has not been well described. Qualitative research is an increasingly important methodologic tool to use in efforts to understand, inform, and advance health equity. Qualitative research provides critical insight into the subjective meaning and context of health that can be essential for understanding where and how to intervene to inform health equity research and practice. We describe the larger context for this special theme issue of Health Education & Behavior, provide brief overviews of the 15 articles that comprise the issue, and discuss the promise of qualitative research that seeks to contextualize and illuminate answers to research questions in efforts to promote health equity. We highlight the critical role that qualitative research can play in considering and incorporating a diverse array of contextual information that is difficult to capture in quantitative research.
Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O’Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J
Objective To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy). Setting International. Participants We included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Design Survey. Methods We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Results Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals
Sep 12, 2012 ... IDRC's Research Awards are a unique opportunity for master's and doctoral-level students, as well as recent graduates to enhance their research skills and gain a fresh perspective on crucial development issues. This one-year, paid in-house program of training and mentorship in research, research ...
Martin, Graham P; McNicol, Sarah; Chew, Sarah
Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) are a new UK initiative to promote collaboration between universities and healthcare organisations in carrying out and applying the findings of applied health research. But they face significant, institutionalised barriers to their success. This paper seeks to analyse these challenges and discuss prospects for overcoming them. The paper draws on in-depth qualitative interview data from the first round of an ongoing evaluation of one CLAHRC to understand the views of different stakeholders on its progress so far, challenges faced, and emergent solutions. The breadth of CLAHRCs' missions seems crucial to mobilise the diverse stakeholders needed to succeed, but also produces disagreement about what the prime goal of the Collaborations should be. A process of consensus building is necessary to instil a common vision among CLAHRC members, but deep-seated institutional divisions continue to orient them in divergent directions, which may need to be overcome through other means. This analysis suggests some of the key means by which those involved in joint enterprises such as CLAHRCs can achieve consensus and action towards a current goal, and offers recommendations for those involved in their design, commissioning and performance management.
Barthow, Christine; Jones, Bernadette; Macdonald, Lindsay; Vernall, Sue; Gallagher, Peter; McKinlay, Eileen
To describe the role, contribution and value of research nurses in New Zealand community-based or primary health care research. Research nurses are increasingly recognised as having a key role in undertaking successful research in hospitals and clinical trial units however only limited work has been undertaken to examine their role in community-based research. Undertaking health research in the community has unique challenges particularly in relation to research design and recruitment and retention of participants. We describe four community-based research projects involving research nurses, each with particular recruitment, retention and logistical problems. Vignettes are used to illustrate the role, contribution and value of research nurses in a diverse range of community research projects. The knowledge and skills used by research nurses in these projects included familiarity with communities, cultural competence, health care systems and practice philosophies and in particular with vulnerable populations. Their research actions and activities include competence with a broad range of research methodologies, organisational efficiency, family-centred approach, along with advocacy and flexibility. These are underpinned by nursing knowledge and clinical expertise contributing to an ability to work autonomously. These four projects demonstrate that research nurses in community-based research possess specific attributes which facilitate successful study development, implementation and outcome.
van Voorn, George A K; Vemer, Pepijn; Hamerlijnck, Dominique; Ramos, Isaac Corro; Teunissen, Geertruida J; Al, Maiwenn; Feenstra, Talitha L
Evaluations of healthcare interventions, e.g. new drugs or other new treatment strategies, commonly include a cost-effectiveness analysis (CEA) that is based on the application of health economic (HE) models. As end users, patients are important stakeholders regarding the outcomes of CEAs, yet their knowledge of HE model development and application, or their involvement therein, is absent. This paper considers possible benefits and risks of patient involvement in HE model development and application for modellers and patients. An exploratory review of the literature has been performed on stakeholder-involved modelling in various disciplines. In addition, Dutch patient experts have been interviewed about their experience in, and opinion about, the application of HE models. Patients have little to no knowledge of HE models and are seldom involved in HE model development and application. Benefits of becoming involved would include a greater understanding and possible acceptance by patients of HE model application, improved model validation, and a more direct infusion of patient expertise. Risks would include patient bias and increased costs of modelling. Patient involvement in HE modelling seems to carry several benefits as well as risks. We claim that the benefits may outweigh the risks and that patients should become involved.
Pichon-Riviere, Andres; Soto, Natalie; Augustovski, Federico; Sampietro-Colom, Laura
Latin American countries are taking important steps to expand and strengthen universal health coverage, and health technology assessment (HTA) has an increasingly prominent role in this process. Participation of all relevant stakeholders has become a priority in this effort. Key issues in this area were discussed during the 2017 Latin American Health Technology Assessment International (HTAi) Policy Forum. The Forum included forty-one participants from Latin American HTA agencies; public, social security, and private insurance sectors; and the pharmaceutical and medical device industry. A background paper and presentations by invited experts and Forum members supported discussions. This study presents a summary of these discussions. Stakeholder involvement in HTA remains inconsistently implemented in the region and few countries have established formal processes. Participants agreed that stakeholder involvement is key to improve the HTA process, but the form and timing of such improvements must be adapted to local contexts. The legitimization of both HTA and decision-making processes was identified as one of the main reasons to promote stakeholder involvement; but to be successful, the entire system of assessment and decision making must be properly staffed and organized, and certain basic conditions must be met, including transparency in the HTA process and a clear link between HTA and decision making. Participants suggested a need for establishing clear rules of participation in HTA that would protect HTA producers and decision makers from potentially distorting external influences. Such rules and mechanisms could help foster trust and credibility among stakeholders, supporting actual involvement in HTA processes.
Kelly, Ursula A
Persisting health disparities have lead to calls for an increase in health research to address them. Biomedical scientists call for research that stratifies individual indicators associated with health disparities, for example, ethnicity. Feminist social scientists recommend feminist intersectionality research. Intersectionality is the multiplicative effect of inequalities experienced by nondominant marginalized groups, for example, ethnic minorities, women, and the poor. The elimination of health disparities necessitates integration of both paradigms in health research. This study provides a practical application of the integration of biomedical and feminist intersectionality paradigms in nursing research, using a psychiatric intervention study with battered Latino women as an example.
Cameron, Joshua D; Ramaprasad, Arkalgud; Syn, Thant
Mobile health or mHealth research has been growing exponentially in recent years. However, the research on mHealth has been ad-hoc and selective without a clear definition of the mHealth domain. Without a roadmap for research we may not realize the full potential of mHealth. In this paper, we present an ontological framework to define the mHealth domain and illuminate a roadmap. We present an ontology of mHealth. The ontology is developed by systematically deconstructing the domain into its primary dimensions and elements. We map the extent research on mHealth in 2014 onto the ontology and highlight the bright, light, and blind/blank spots which represent the emphasis of mHealth research. The emphases of mHealth research in 2014 are very uneven. There are a few bright spots and many light spots. The research predominantly focuses on individuals' use of mobile devices and applications to capture or obtain health-related data mostly to improve quality of care through mobile intervention. We argue that the emphases can be balanced in the roadmap for mHealth research. The ontological mapping plays an integral role in developing and maintaining the roadmap which can be updated periodically to continuously assess and guide mHealth research. Copyright © 2017 Elsevier B.V. All rights reserved.
Lairumbi, Geoffrey M; Parker, Michael; Fitzpatrick, Raymond; Mike, English C
The concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya. We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospita