Evaluating community deliberations about health research priorities

• Main Authors: Susan Dorr Goold (Author), Marion Danis (Author), Julia Abelson (Author), Michelle Gornick (Author), Lisa Szymecko (Author), C. Daniel Myers (Author), Zachary Rowe (Author), Hyungjin Myra Kim (Author), Cengiz Salman (Author)
• Format: Book
• Published: Wiley, 2019-08-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.
• Notes: 1369-7625; 1369-6513; 10.1111/hex.12931
• Keywords: community‐based participatory research; health priorities; research priorities; resource allocation; Medicine (General); R5-920; Public aspects of medicine; RA1-1270
• Source: Health Expectations, Vol 22, Iss 4, Pp 772-784 (2019)

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.