What are Important Ways of Sharing Power in Health Research Priority Setting? Perspectives From People With Lived Experience and Members of the Public

2021 ◽  
pp. 155626462110132
Author(s):  
Bridget Pratt
Keyword(s):  
Lived Experience ◽  
Thematic Analysis ◽  
Priority Setting ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
The United Kingdom ◽  
Research Priority ◽  
Health Research Priority Setting

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.

scholarly journals Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Bridget Pratt
Keyword(s):  
Decision Making ◽  
Lived Experience ◽  
Shared Decision Making ◽  
Priority Setting ◽  
Health Research ◽  
Shared Decision ◽  
Research Projects ◽  
The Public ◽  
Research Priority ◽  
Health Research Priority Setting

Abstract Background Engagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly. Methods An exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia. Results Three main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees. Conclusions Based on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings.

scholarly journals Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Bridget Pratt
Keyword(s):  
Global Health ◽  
Priority Setting ◽  
Health Research ◽  
Reflective Equilibrium ◽  
Empirical Work ◽  
The Philippines ◽  
Project Planning ◽  
Global Health Research ◽  
Research Priority ◽  
Health Research Priority Setting

AbstractTo promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how to share power with communities in health research priority-setting. This paper presents an “ethical toolkit” for academic researchers and their community partners to use to design priority-setting processes that meaningfully include the communities impacted by their projects. An empirical reflective equilibrium approach was employed to develop the toolkit. Conceptual work articulated ethical considerations related to sharing power in g0l0o0bal health research priority-setting, developed guidance on how to address them, and created an initial version of the toolkit. Empirical work (51 in-depth interviews, 1 focus group, 2 case studies in India and the Philippines) conducted in 2018 and 2019 then tested those findings against information from global health research practice. The final ethical toolkit is a reflective project planning aid. It consists of 4 worksheets (Worksheet 1- Selecting Partners; Worksheet 2- Deciding to Partner; Worksheet 3- Deciding to Engage with the Wider Community; Worksheet 4- Designing Priority-setting) and a Companion Document detailing how to use them. Reflecting on and discussing the questions in Worksheets 1 to 4 before priority-setting will help deliver priority-setting processes that share power with communities and projects with research topics and questions that more accurately reflect their healthcare and system needs.

The Social Value of Research and Health Research Priority-Setting

2021 ◽  
Author(s):  
D.M. Wenner
Keyword(s):  
Clinical Research ◽  
Priority Setting ◽  
Health Research ◽  
Human Subjects ◽  
Social Value ◽  
Research Priority ◽  
The Social ◽  
Research Questions ◽  
Social Scientific ◽  
Health Research Priority Setting

This chapter discusses the social value requirement in clinical research and its intersection with health research priority-setting. The social value requirement states that clinical research involving human subjects is only ethical if it has the potential to produce socially valuable knowledge. The chapter discusses various ways to specify both the justification for and the content of the social value requirement. It goes on to consider the implications of various accounts of the content and justification for the requirement for the ethics of health research priority-setting, showing that while some accounts of the requirement are largely silent with respect to how research questions should be prioritized, others entail robust obligations to prioritize research that might benefit particular groups. The chapter also briefly examines potential arguments for something like a social value requirement in other kinds of research, specifically social scientific research.

Towards inclusive priority-setting for global health research projects: recommendations for sharing power with communities

2019 ◽  
Vol 34 (5) ◽  
pp. 346-357 ◽  
Author(s):  
Bridget Pratt
Keyword(s):  
Global Health ◽  
Priority Setting ◽  
Health Research ◽  
Contextual Factors ◽  
Global Health Research ◽  
Power Dynamics ◽  
Research Projects ◽  
Structured Interviews ◽  
Research Priority ◽  
Health Research Priority Setting

Abstract Global health research priority-setting is dominated by funders and researchers, often from high-income countries. Engaging communities that are considered disadvantaged and marginalized in priority-setting is essential to making their voices and concerns visible in global health research projects’ topics and questions. However, without attention to power dynamics, their engagement can often lead to presence without voice and voice without influence. Global health research priority-setting must be designed to share power with such communities to ensure that research projects’ topics and questions reflect the health care and system inequities they face. To better understand what sharing ‘power over’ priority-setting requires, 29 in-depth, semi-structured interviews and one focus group were undertaken with researchers, ethicists, community engagement practitioners and community-based organization staff. The study shows that, before moving ahead with priority-setting for global health research projects, it is vital to assess whether contextual factors necessary for meaningful engagement between researchers and marginalized communities are present or can be built in the research setting. Study findings describe several such contextual factors and 12 features of priority-setting that affect how processes are run, who participates in them, and who influences their outputs. During priority-setting for global health research projects, it is essential to implement ways of sharing power with communities in relation to these features. Study findings describe a multitude of such strategies that are employed in practice. After priority-setting, it is important to demonstrate respect and accountability to communities.

scholarly journals ‘I’m sure we made it a better study…’: Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study

2017 ◽  
Vol 23 (1) ◽  
pp. 78-96 ◽  
Author(s):  
Carole Beighton ◽  
Christina Victor ◽  
Iain M Carey ◽  
Fay Hosking ◽  
Steve DeWilde ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Self Confidence ◽  
The United Kingdom ◽  
Working Together ◽  
Adults With Intellectual Disabilities ◽  
Group Interviews

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups’ unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

scholarly journals Health Research Priority Setting in Uganda: A Qualitative Study Describing and Evaluating the Processes

2020 ◽  
Author(s):  
Lydia Kapiriri ◽  
Elizabeth Asege Ekochu ◽  
Harriet Nabudere
Keyword(s):  
Priority Setting ◽  
Health Research ◽  
National Level ◽  
Stakeholder Involvement ◽  
Research Priorities ◽  
Political Commitment ◽  
Policy Practice ◽  
Research Priority ◽  
National Priority ◽  
Health Research Priority Setting

Abstract Background: Over the years, several approaches to health research priority setting (HRPS) have been devised and applied in low-incomes countries for national level research prioritization. However, there is often a disconnect between the evidence that health policymakers require for decision-making and the research that receives funding. There is a need for countries to evaluate their prioritization processes to support strategies to translate priority setting into policy practice. While health research priority setting is continuously carried out in Uganda, these processes are rarely reported on the scholarly literature and have not been evaluated. This study aimed to describe and evaluate HRPS in Uganda. Methods: This was a qualitative case study consisting of document review and key informant interviews with stakeholders who had either directly participated in or had specialized knowledge of HRPS in Uganda.Results: While Uganda has established and legitimized a National health research organization to set health research priorities, coordinate and provide oversight for health research in the country, several institutions independently conduct their own health research priority setting. The evaluation revealed that while the priority setting processes are often based on systematic approaches and tools and tended to be evidence based, most of the prioritization processes lacked stakeholder involvement and implementation. Moreover, the priorities were not publicized and none had mechanisms for appeals or revisions. In only one case were the priorities implemented.Conclusions: The availability of strong political commitment and a national priority setting institution is an opportunity for strengthening health research priority setting. There should be increased support for the institution to enable it to carry out its duties. The institution should not only invest in participatory, systematic health research priority setting and implementation but evaluation as well in order for them to identify areas for improvement.

scholarly journals Approaches to Health Research Priority Setting in the Philippines across the Years

2019 ◽  
Vol 53 (3) ◽  
Author(s):  
Alain Jason A. Generale ◽  
Reneepearl Kim P. Sales ◽  
Teddy S. Dizon ◽  
Alan B. Feranil
Keyword(s):  
Priority Setting ◽  
Health Research ◽  
Research Agenda ◽  
Policy Formulation ◽  
The Philippines ◽  
Lessons Learned ◽  
Gradual Change ◽  
Research Priority ◽  
The Impact ◽  
Health Research Priority Setting

Background. As one of the research councils under the Department of Science and Technology (DOST), health research priority setting has been the mandate of the Philippine Council for Health Research and Development (PCHRD) since its establishment in 1982. The development of the National Unified Health Research Agenda (NUHRA) convenes the major stakeholders for health in the country to establish the priorities for health research. The NUHRA aims to address the most urgent health issues in the country for the generation of solutions to the health concerns of the country. Objectives and Method. Through document review, this paper describes the approaches and lessons learned in research priority setting since the establishment of the Philippine National Health Research System. Results. The Philippines has employed a bottoms-up, top-down, and a combination of both approaches to develop its health research agenda. Conclusion. The health research agenda-setting must consider evolving funding sources, its link to production of researches with high probability of knowledge translation to health technology innovation, and policy formulation. Measuring the impact of the NUHRA to the health systems and health situation of the country is a difficult assessment, but the gradual change in healthcare technology utilization and evidence-informed policies towards health equity can be a subjective measurement of the NUHRA’s success.

scholarly journals Reporting guideline for priority setting of health research (REPRISE)

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Allison Tong ◽  
Anneliese Synnot ◽  
Sally Crowe ◽  
Sophie Hill ◽  
Andrea Matus ◽  
...  
Keyword(s):  
Priority Setting ◽  
Health Research ◽  
Research Priorities ◽  
Reporting Guideline ◽  
Limited Resources ◽  
Research Topics ◽  
Diverse Range ◽  
Research Priority ◽  
Setting Process ◽  
Health Research Priority Setting

Abstract Background Research priority setting with stakeholders can help direct the limited resources for health research toward priority areas of need. Ensuring transparency of the priority setting process can strengthen legitimacy and credibility for influencing the research agenda. This study aims to develop a reporting guideline for priority setting of health research. Methods We searched electronic databases and relevant websites for sources (frameworks, guidelines, or models for conducting, appraising, reporting or evaluating health research priority setting, and reviews (including systematic reviews)), and primary studies of research priority setting to July 2019. We inductively developed a list of reporting items and piloted the preliminary guideline with a diverse range of 30 priority setting studies from the records retrieved. Results From 21,556 records, we included 26 sources for the candidate REPRISE framework and 455 primary research studies. The REporting guideline for PRIority SEtting of health research (REPRISE) has 31 reporting items that cover 10 domains: context and scope, governance and team, framework for priority setting, stakeholders/participants, identification and collection of priorities, prioritization of research topics, output, evaluation and feedback, translation and implementation, and funding and conflict of interest. Each reporting item includes a descriptor and examples. Conclusions The REPRISE guideline can facilitate comprehensive reporting of studies of research priority setting. Improved transparency in research priority setting may strengthen the acceptability and implementation of the research priorities identified, so that efforts and funding are invested in generating evidence that is of importance to all stakeholders. Trial registration Not applicable.

scholarly journals Developing a typology of the roles public contributors undertake to establish legitimacy: a longitudinal case study of patient and public involvement in a health network

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e033370
Author(s):  
Jacqueline Barker ◽  
Pam Moule ◽  
David Evans ◽  
Wendy Phillips ◽  
Nick Leggett
Keyword(s):  
Lived Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Health Science ◽  
Strategic Decision ◽  
Longitudinal Case Study ◽  
Health Network ◽  
The Public ◽  
Patient Advocate

ObjectiveTo identify how public contributors established their legitimacy in the functioning of a patient and public involvement programme at a health network.DesignA longitudinal case study with three embedded units (projects) involving public contributors. Interviews (n=24), observations (n=27) and documentary data collection occurred over 16 months.SettingThe West of England Academic Health Science Network (WEAHSN), 1 of 15 regional AHSNs in England.ParticipantsInterviews were conducted with public contributors (n=5) and professionals (n=19) who were staff from the WEAHSN, its member organisations and its partners.ResultsPublic contributors established their legitimacy by using nine distinct roles: (1) lived experience, as a patient or carer; (2) occupational knowledge, offering job-related expertise; (3) occupational skills, offering aptitude developed through employment; (4) patient advocate, promoting the interests of patients; (5) keeper of the public purse, encouraging wise spending; (6) intuitive public, piloting materials suitable for the general public; (7) fresh-eyed reviewer, critiquing materials; (8) critical friend, critiquing progress and proposing new initiatives and (9) boundary spanner, urging professionals to work across organisations. Individual public contributors occupied many, but not all, of the roles.ConclusionsLived experience is only one of nine distinct public contributor roles. The WEAHSN provided a benign context for the study because in a health network public contributors are one of many parties seeking to establish legitimacy through finding valuable roles. The nine roles can be organised into a typology according to whether the basis for legitimacy lies in: the public contributor’s knowledge, skills and experience; citizenship through the aspiration to achieve a broad public good; or being an outsider. The typology shows how public contributors can be involved in work where lived experience appears to lack relevance: strategic decision making; research unconnected to particular conditions; or acute service delivery.

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