Abstract
BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously proposed checklist version of the toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.MethodsA two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.ResultsThe conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit’s content and language. The implications of these suggestions and the analytic process for the toolkit are described.ConclusionsThe resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting.
Highlights
Communities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them
Global health research priority-setting is dominated by funders and researchers, often from high-income countries
Global health research is defined as research addressing health problems worldwide, especially those of the most marginalised, who live primarily in low and middle-income countries
Summary
Communities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. Global health research priority-setting is dominated by funders and researchers, often from high-income countries Communities, those considered disadvantaged and marginalised, rarely have a say in setting the research topics and questions of global health research projects. As a matter of health and social justice, bioethicists have argued that global health research should improve the health and well-being of those considered disadvantaged and marginalised and foster their participation in decision-making about its conduct [4, 17, 26] This entails engaging such communities throughout research projects, including when setting research topics and formulating research questions [21, 26]. The community is defined broadly to encompass policymakers, local leaders, community organisations, health providers and managers, patients, their families, and other community members [22]
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