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 prioriti...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2019-08-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.12931 |
| _version_ | 1818202678320168960 |
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| author | Susan Dorr Goold Marion Danis Julia Abelson Michelle Gornick Lisa Szymecko C. Daniel Myers Zachary Rowe Hyungjin Myra Kim Cengiz Salman |
| author_facet | Susan Dorr Goold Marion Danis Julia Abelson Michelle Gornick Lisa Szymecko C. Daniel Myers Zachary Rowe Hyungjin Myra Kim Cengiz Salman |
| author_sort | Susan Dorr Goold |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-12T03:13:16Z |
| format | Article |
| id | doaj.art-8d7c2d8ac31e4d6fbc9f69e4150bda5c |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-12-12T03:13:16Z |
| publishDate | 2019-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-8d7c2d8ac31e4d6fbc9f69e4150bda5c2022-12-22T00:40:21ZengWileyHealth Expectations1369-65131369-76252019-08-0122477278410.1111/hex.12931Evaluating community deliberations about health research prioritiesSusan Dorr Goold0Marion Danis1Julia Abelson2Michelle Gornick3Lisa Szymecko4C. Daniel Myers5Zachary Rowe6Hyungjin Myra Kim7Cengiz Salman8Department of Internal Medicine, Division of General Medicine, Institute for Healthcare Policy and Innovation Center for Bioethics and Social Sciences in Medicine Ann Arbor MichiganWarren Magnuson Clinical Center National Institutes of Health Bethesda MarylandDepartment of Clinical Epidemiology and Biostatistics McMaster University Hamilton Ontario CanadaCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor MichiganCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor MichiganDepartment of Political Science University of Minnesota Minneapolis MinnesotaFriends of Parkside Detroit MichiganCenter for Statistical Computation and Research University of Michigan Ann Arbor MichiganCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor MichiganAbstract 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.https://doi.org/10.1111/hex.12931community‐based participatory researchhealth prioritiesresearch prioritiesresource allocation |
| spellingShingle | Susan Dorr Goold Marion Danis Julia Abelson Michelle Gornick Lisa Szymecko C. Daniel Myers Zachary Rowe Hyungjin Myra Kim Cengiz Salman Evaluating community deliberations about health research priorities Health Expectations community‐based participatory research health priorities research priorities resource allocation |
| title | Evaluating community deliberations about health research priorities |
| title_full | Evaluating community deliberations about health research priorities |
| title_fullStr | Evaluating community deliberations about health research priorities |
| title_full_unstemmed | Evaluating community deliberations about health research priorities |
| title_short | Evaluating community deliberations about health research priorities |
| title_sort | evaluating community deliberations about health research priorities |
| topic | community‐based participatory research health priorities research priorities resource allocation |
| url | https://doi.org/10.1111/hex.12931 |
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