Literature DB >> 30537366

Members of Minority and Underserved Communities Set Priorities for Health Research.

Susan Dorr Goold1, C Daniel Myers2, Marion Danis3, Julia Abelson4, Steve Barnett5, Karen Calhoun6, Eric G Campbell7, Lynette LaHAHNN8, Adnan Hammad9, René Pérez Rosenbaum10, Hyungjin Myra Kim11, Cengiz Salman1, Lisa Szymecko12, Zachary E Rowe13.   

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.
© 2018 Milbank Memorial Fund.

Entities:  

Keywords:  minority groups, decision making, research priorities, deliberation, deliberative democracy, community engagement; resource allocation

Mesh:

Year:  2018        PMID: 30537366      PMCID: PMC6287077          DOI: 10.1111/1468-0009.12354

Source DB:  PubMed          Journal:  Milbank Q        ISSN: 0887-378X            Impact factor:   4.911


  21 in total

1.  Setting biomedical research priorities: justice, science, and public participation.

Authors:  D Resnik
Journal:  Kennedy Inst Ethics J       Date:  2001-06

2.  The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda.

Authors:  Joe V Selby; Anne C Beal; Lori Frank
Journal:  JAMA       Date:  2012-04-18       Impact factor: 56.272

3.  Shaping biomedical research priorities: the case of the National Institutes of Health.

Authors:  D Callahan
Journal:  Health Care Anal       Date:  1999

4.  Public participation in regional health policy: a theoretical framework.

Authors:  Wilfreda E Thurston; Gail MacKean; Ardene Vollman; Ann Casebeer; Myron Weber; Bretta Maloff; Judy Bader
Journal:  Health Policy       Date:  2004-12-16       Impact factor: 2.980

Review 5.  On being a good listener: setting priorities for applied health services research.

Authors:  Jonathan Lomas; Naomi Fulop; Diane Gagnon; Pauline Allen
Journal:  Milbank Q       Date:  2003       Impact factor: 4.911

Review 6.  A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

Authors:  Sheba George; Nelida Duran; Keith Norris
Journal:  Am J Public Health       Date:  2013-12-12       Impact factor: 9.308

7.  (De)constructing 'basic' benefits: citizens define the limits of coverage.

Authors:  Marjorie Ginsburg; Susan Dorr Goold; Marion Danis
Journal:  Health Aff (Millwood)       Date:  2006 Nov-Dec       Impact factor: 6.301

8.  Social relationships among persons who have experienced serious mental illness, substance abuse, and homelessness: Implications for recovery.

Authors:  Deborah K Padgett; Ben Henwood; Courtney Abrams; Robert E Drake
Journal:  Am J Orthopsychiatry       Date:  2008-07

9.  The 10 largest public and philanthropic funders of health research in the world: what they fund and how they distribute their funds.

Authors:  Roderik F Viergever; Thom C C Hendriks
Journal:  Health Res Policy Syst       Date:  2016-02-18

10.  Community representatives' involvement in Clinical and Translational Science Awardee activities.

Authors:  Consuelo H Wilkins; Mark Spofford; Neely Williams; Corliss McKeever; Shauntice Allen; Jen Brown; Jennifer Opp; Alan Richmond; A Hal Strelnick
Journal:  Clin Transl Sci       Date:  2013-06-10       Impact factor: 4.689

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  5 in total

1.  CHAT SA: Modification of a Public Engagement Tool for Priority Setting for a South African Rural Context.

Authors:  Aviva Tugendhaft; Marion Danis; Nicola Christofides; Kathleen Kahn; Agnes Erzse; Marthe Gold; Rhian Twine; Audrey Khosa; Karen Hofman
Journal:  Int J Health Policy Manag       Date:  2022-02-01

2.  Evaluating community deliberations about health research priorities.

Authors:  Susan Dorr Goold; Marion Danis; Julia Abelson; Michelle Gornick; Lisa Szymecko; C Daniel Myers; Zachary Rowe; Hyungjin Myra Kim; Cengiz Salman
Journal:  Health Expect       Date:  2019-06-28       Impact factor: 3.377

Review 3.  What do end-users want to know about managing the performance of healthcare delivery systems? Co-designing a context-specific and practice-relevant research agenda.

Authors:  Jenna M Evans; Julie E Gilbert; Jasmine Bacola; Victoria Hagens; Vicky Simanovski; Philip Holm; Rebecca Harvey; Peter G Blake; Garth Matheson
Journal:  Health Res Policy Syst       Date:  2021-10-11

4.  A systematic review to identify research priority setting in Black and minority ethnic health and evaluate their processes.

Authors:  Halima Iqbal; Jane West; Melanie Haith-Cooper; Rosemary R C McEachan
Journal:  PLoS One       Date:  2021-05-28       Impact factor: 3.752

5.  The Value of Engaging the Public in CHATing About Healthcare Priorities: A Response to Recent Commentaries.

Authors:  Marion Danis; Susan D Goold; Melinee Schindler; Samia A Hurst
Journal:  Int J Health Policy Manag       Date:  2019-04-01
  5 in total

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