Evaluating community deliberations about health research priorities

Susan Dorr Goold, Marion Danis, Julia Abelson, Michelle Gornick, Lisa Szymecko, C. Daniel Myers, Zachary Rowe, Hyungjin Myra Kim, Cengiz Salman

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)772-784
Number of pages13
JournalHealth Expectations
Volume22
Issue number4
Early online dateJun 28 2019
DOIs
StatePublished - Aug 1 2019

Bibliographical note

Funding Information:
Funding information This work was supported by a grant from the National Institute on Aging (Grant #1RO1AG040138-01). We would like to thank the many Michiganders who participated in Regional Advisory Groups and in CHAT sessions.

Funding Information:
The National Science Foundation Open Government Plan 4.0 | NSF – National Science Foundation

Funding Information:
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.

Publisher Copyright:
© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd

Keywords

  • community-based participatory research
  • health priorities
  • research priorities
  • resource allocation

PubMed: MeSH publication types

  • Journal Article
  • Research Support, N.I.H., Extramural

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