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. 2019 Aug;22(4):772-784.
doi: 10.1111/hex.12931. Epub 2019 Jun 28.

Evaluating community deliberations about health research priorities

Susan Dorr Goold  1 , Marion Danis  2 , Julia Abelson  3 , Michelle Gornick  4 , Lisa Szymecko  4 , C Daniel Myers  5 , Zachary Rowe  6 , Hyungjin Myra Kim  7 , Cengiz Salman  4
Affiliations

Evaluating community deliberations about health research priorities

Susan Dorr Goold et al. Health Expect. 2019 Aug.

Abstract

Context: Engaging underrepresented communities in health research priority setting could make the scientific agenda more equitable and more responsive to their needs.

Objective: Evaluate democratic deliberations engaging minority and underserved communities in setting health research priorities.

Methods: Participants from underrepresented communities throughout Michigan (47 groups, n = 519) engaged in structured deliberations about health research priorities in professionally facilitated groups. We evaluated some aspects of the structure, process, and outcomes of deliberations, including representation, equality of participation, participants' views of deliberations, and the impact of group deliberations on individual participants' knowledge, attitudes, and points of view. Follow-up interviews elicited richer descriptions of these and also explored later effects on deliberators.

Results: Deliberators (age 18-88 years) overrepresented minority groups. Participation in discussions was well distributed. Deliberators improved their knowledge about disparities, but not about health research. Participants, on average, supported using their group's decision to inform decision makers and would trust a process like this to inform funding decisions. Views of deliberations were the strongest predictor of these outcomes. Follow-up interviews revealed deliberators were particularly struck by their experience hearing and understanding other points of view, sometimes surprised at the group's ability to reach agreement, and occasionally activated to volunteer or advocate.

Conclusions: Deliberations using a structured group exercise to engage minority and underserved community members in setting health research priorities met some important criteria for a fair, credible process that could inform policy. Deliberations appeared to change some opinions, improved some knowledge, and were judged by participants worth using to inform policymakers.

Keywords: community-based participatory research; health priorities; research priorities; resource allocation.

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Conflict of interest statement

All authors have completed the ICMJE Form for Disclosure of Potential Conflicts of Interest. C. Daniel Meyers reports grants from the Agency for Healthcare Research and Quality and the Patient‐Centered Outcome Research Institute outside the scope of this work. Marion Danis reported that the National Institutes of Health may receive royalties from licensing of the CHAT exercise and that part of these royalties are given to her as a component of her salary. Susan Goold reported that she could receive a portion of royalties for any paid licenses from the University of Michigan Office of Technology Transfer.

Figures

Figure 1
Figure 1
Screenshot of the CHAT wheel. Each wedge represents a category of research. Descriptions of each category and what is provided by the different levels of investment (level 1 = outer ring, level 2 = outer + middle rings, level 3 = outer + middle + inner rings) appear with clicking on a wedge. For each wedge, participants can choose not to allocate any of their 50 available markers, or they can use the number of markers needed for level 1, 2 or 3
See this image and copyright information in PMC

References

    1. Davey S.The 10/90 Report on Health Research 2003‐3004. Global Forum for Health Research; 2004.
    1. Viergever RF, Hendriks T. The 10 largest public and philanthropic funders of health research in the world: what they fund and how they distribute their funds. Heal Res Policy Syst. 2016;14:12. - PMC - PubMed
    1. Callahan D. Shaping biomedical research priorities: the case of the National Institutes of Health. Heal Care Anal. 1999;7:115‐129. - PubMed
    1. Resnik DB. Setting biomedical research priorities: justice, science, and public participation. Kennedy Inst Ethics J. 2001;11:181‐204. - PubMed
    1. Fleck L. Healthcare justice and rational democratic deliberation. Am J Bioeth. 2001;1:20‐21. - PubMed

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