Members of Minority and Underserved Communities Set Priorities for Health Research

Abstract

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.

Evaluating community deliberations about health research priorities

“…To adapt CHAT to the unique needs and objectives of research priority setting with minority and underserved communities, we utilized a participatory process, led by a Steering Committee comprised of a † We describe the priorities for health research spending selected by participants using this exercise elsewhere. 35,47…”

“…Categories and levels are described in Table S1 and previously published work. 35 Participants chose a level of funding for each category by allocating markers required for the particular level. However, participants were given a limited number of markers (50 markers for 92 open spaces) so choosing high levels of funding in one category required lower or no funding in another.…”

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

“…20,21,23 Some previous CHAT work has included initial preparatory discussions with experts and patient representatives to identify key issues/questions to include in the various versions of CHAT. 25,27 The iterative participatory approach that we followed involved a high degree of consultation with experts/ policy-makers and community members over time, and drew on lessons from the CHAT exercise itself to engage with the different stakeholders.…”

“…This has included, among others, engaging community members in California to define a basic health coverage package, engaging low-income employees in the United States to identify employee benefits packages, including low-income urban residents in identifying priorities to address the socio-economic determinants of health, involving patients in developing a coverage package for advanced cancer care and for mental health, engaging members of the public in Switzerland to identify a health insurance package and engaging low-income rural residents in India in developing a micro-insurance package. [20][21][22][23][24][25][26][27] Beyond health related issues CHAT has been used more broadly for other types of priority setting, for example identifying priorities for research. 25 The application of CHAT in India demonstrates that the tool can be useful for low-and middle-income countries and for rural communities.…”

“…[20][21][22][23][24][25][26][27] Beyond health related issues CHAT has been used more broadly for other types of priority setting, for example identifying priorities for research. 25 The application of CHAT in India demonstrates that the tool can be useful for low-and middle-income countries and for rural communities. The need for the tool in the Indian rural setting arose from the gap between benefit packages available and those reflecting the priorities of the poor.…”