Evaluating community deliberations about health research priorities

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.

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“…Another framework, specifically developed to guide genomics activities, uses four themes for deliberative reflection: fairness, context, heterogeneity, and recognizing tensions and conflict ( 61 ). Congruently, we found that participants' deliberation met these and other previously identified quality frameworks ( 48 , 62 , 63 ). Dissimilarly, the current study focused on aspects of quality specific to public policy such as adoption of a societal perspective or “the common good.” This is the idea that what is best for the individual is not always what is best for the larger community.…”

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study

“…Public deliberation models also vary in the number of deliberators and the length of the deliberation. For example, one recent deliberation was conducted over two 2-day periods, while others engage fewer people in a single session [ 30 ]. While it is possible that participants’ perspectives may evolve over time and as they develop comfort with their fellow participants, our analysis found that there was positive engagement and candor in the groups in a short time period, comparable to other models [ 16 , 30 ].…”

“…For example, one recent deliberation was conducted over two 2-day periods, while others engage fewer people in a single session [ 30 ]. While it is possible that participants’ perspectives may evolve over time and as they develop comfort with their fellow participants, our analysis found that there was positive engagement and candor in the groups in a short time period, comparable to other models [ 16 , 30 ]. Processes such as facilitator training were valuable, as they contributed to standardization in the conduct of small discussions across both sessions.…”

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“…Effective citizen engagement and public deliberation have been shown to provide rich and nuanced insights on issues of societal importance 32–36 . Structured and meaningful incorporation of these insights into health policy‐making processes helps to legitimize decisions that impact the populace.…”

“…Effective citizen engagement and public deliberation have been shown to provide rich and nuanced insights on issues of societal importance. [32][33][34][35][36] Structured and meaningful incorporation of these insights into health policy-making processes helps to legitimize decisions that impact the populace. In many jurisdictions, including Canada, public engagement has been embraced as a component of HTA deliberations, but implementation is variable and best practices for evidence-informed deliberation are still evolving.…”