TY - JOUR
T1 - Members of Minority and Underserved Communities Set Priorities for Health Research
AU - Goold, Susan Dorr
AU - Myers, C. Daniel
AU - Danis, Marion
AU - Abelson, Julia
AU - Barnett, Steve
AU - Calhoun, Karen
AU - Campbell, Eric G.
AU - Lahahnn, Lynette
AU - Hammad, Adnan
AU - Rosenbaum, René Pérez
AU - Kim, Hyungjin Myra
AU - Salman, Cengiz
AU - Szymecko, Lisa
AU - Rowe, Zachary E.
N1 - Publisher Copyright:
© 2018 Milbank Memorial Fund
PY - 2018/12
Y1 - 2018/12
N2 - 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.
AB - 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.
KW - minority groups, decision making, research priorities, deliberation, deliberative democracy, community engagement
KW - resource allocation
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U2 - 10.1111/1468-0009.12354
DO - 10.1111/1468-0009.12354
M3 - Article
C2 - 30537366
AN - SCOPUS:85058243766
SN - 0887-378X
VL - 96
SP - 675
EP - 705
JO - Milbank Quarterly
JF - Milbank Quarterly
IS - 4
ER -