Members of Minority and Underserved Communities Set Priorities for Health Research

Susan Dorr Goold, C. Daniel Myers, Marion Danis, Julia Abelson, Steve Barnett, Karen Calhoun, Eric G. Campbell, Lynette Lahahnn, Adnan Hammad, René Pérez Rosenbaum, Hyungjin Myra Kim, Cengiz Salman, Lisa Szymecko, Zachary E. Rowe

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

Abstract

Policy Points Engaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level. Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research. Context: A major contributor to health disparities is the relative lack of resources—including resources for science—allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. Methods: Academic-community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. Findings: The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p =.005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p <.001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. Conclusions: Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.

Original languageEnglish (US)
Pages (from-to)675-705
Number of pages31
JournalMilbank Quarterly
Volume96
Issue number4
DOIs
StatePublished - Dec 2018

Bibliographical note

Funding Information:
The authors were supported by a grant from the National Institute on Aging (Grant #1RO1AG040138-01). Conflict of Interest Disclosures: All authors have completed the ICMJE Form for Disclosure of Potential Conflicts of Interest. C. Daniel Myers reported 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 is given to her as a component of her salary. Susan Dorr Goold reported that she could receive a portion of royalties for any paid licenses from the University of Michigan Office of Technology Transfer. Acknowledgments: We would like to thank the many Michiganders who participated in regional advisory groups and in CHAT sessions.

Publisher Copyright:
© 2018 Milbank Memorial Fund

Keywords

  • minority groups, decision making, research priorities, deliberation, deliberative democracy, community engagement
  • resource allocation

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