Inclusion of Marginalized Groups and Communities in Global Health Research Priority-Setting

Community engagement is gaining prominence in global health research. But community members, especially those from groups and communities that are considered disadvantaged and marginalized, rarely have a say in the agendas and priorities of the research projects that aim to help them. This article explores how to achieve their inclusion in priority-setting for global health research projects. A total of 29 in-depth interviews and one focus group were undertaken with researchers, research ethicists, community engagement practitioners, and community-based organization staff. Thematic analysis identified two core dimensions of inclusion—representation and voice—and what is necessary to realize them with marginalized groups and communities in global health research priority-setting. A set of ethical considerations is proposed to assist researchers and their partners design more inclusive priority-setting processes.

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

Health Policy and Planning ◽

10.1093/heapol/czz041 ◽

2019 ◽

Vol 34 (5) ◽

pp. 346-357 ◽

Cited By ~ 3

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.

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

International Journal for Equity in Health ◽

10.1186/s12939-021-01453-y ◽

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.

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Exploring the ethics of global health research priority-setting

BMC Medical Ethics ◽

10.1186/s12910-018-0333-y ◽

2018 ◽

Vol 19 (1) ◽

Cited By ~ 10

Author(s):

Bridget Pratt ◽

Mark Sheehan ◽

Nicola Barsdorf ◽

Adnan A. Hyder

Keyword(s):

Global Health ◽

Priority Setting ◽

Health Research ◽

Global Health Research ◽

Research Priority ◽

Health Research Priority Setting

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

BMC Medical Ethics ◽

10.1186/s12910-021-00685-5 ◽

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.

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Developing a toolkit for engagement practice: sharing power with communities in priority-setting for global health research projects

BMC Medical Ethics ◽

10.1186/s12910-020-0462-y ◽

2020 ◽

Vol 21 (1) ◽

Cited By ~ 1

Author(s):

Bridget Pratt

Keyword(s):

Global Health ◽

Priority Setting ◽

Health Research ◽

Global Health Research ◽

Research Projects

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The Social Value of Research and Health Research Priority-Setting

The Oxford Handbook of Research Ethics ◽

10.1093/oxfordhb/9780190947750.013.10 ◽

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.

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