Research for impact is a key tenet of health services research, and nowhere is the need for action-oriented research more imperative than at the community level. This is particularly true for low-income communities of color, who experience a disproportionate impact of structural racism and discriminatory policies regarding housing, transportation, and access to employment. The COVID-19 pandemic has brought to light the stark reality with which underserved communities have been living for far too long—that they face dire health disparities that are rooted in deep wealth inequality. However, through an equity-focused approach, we can work with communities to better understand and address their needs to improve overall health and well-being.
Panelists at last month’s Annual Research Meeting shared lessons from the COVID-19 pandemic with an eye toward improving research to more directly address racial disparities and underlying social determinants of health. Three key lessons emerged from the session: 1) the need to center communities of color and work closely with them to address their needs; 2) the importance of appreciating the current and historical contexts within which these communities are living; and 3) the imperative to redesign the field of research so that it fosters transdisciplinary collaboration and recognizes impact.
Centering the Needs of Communities
Communities of color have valid reasons to distrust the health care system. They have historically been marginalized, and many of these communities remain underserved, resulting in poor health outcomes. Indeed, we saw disproportionately high rates of COVID-19 hospitalizations and mortality among communities of color, and the recovery too has been slow, with considerably lower vaccination rates, due in part to vaccine distrust, hesitancy, and lack of access.
The need to build trust with patients and communities is clear. One way to do this is by centering the community as the source of knowledge. By understanding the concerns of communities and working with them to explore how best to address their needs, research can not only lead to more appropriate and effective solutions, but also build the foundation for a more trusting relationship.
Illustrating the potential of community-based efforts, the Shots at the Shop initiative focuses on increasing COVID-19 vaccinations by working with Black-owned barbershops and hair salons. The initiative centers the community by bringing health care to people where they are, and in a setting that is already a trusted source of care. With a focus on informed decision making, Shots at the Shop provides an opportunity for community members to speak with a health care worker about any vaccination concerns they may have. At the ARM Panel, Dr. Stephen Thomas, of the University of Maryland, stated, “They go in, and they are treated with dignity and respect, and guess what? They roll up their sleeve, and they come out vaccinated.”
Context Matters
In addition to centering community needs and concerns, a deeper understanding of the current and historical context is necessary to fully grasp the lived experience of community members. Health disparities are closely linked to socioeconomic factors and can even worsen future prospects for patients and communities that experience them. For example, adverse birth outcomes can impact educational achievement as well as prospects for employment and income. Moreover, health and economic inequalities are intergenerational. Dr. Bina Shrimali of the Federal Reserve Bank of San Francisco noted, “Health at birth is the product of a parent’s lifetime of experiences and things that happened during critical time periods, in utero, early childhood, adolescence. These things may have implications for health decades down the road in terms of chronic disease development as well as through the next generation. We see that happening in the birth outcomes.”
Similarly, a parent’s experiences are shaped by the socioeconomic conditions around them, which are in turn driven by existing policies and systems. In fact, long after they end, policies can have lasting impacts. Historical housing policies, for example, such as redlining, continue to leave their mark today in racial wealth inequalities. Given the interconnected nature of health, wealth, and overall well-being, research must encompass the broader context to comprehend the factors that may be at play.
The disparities of the COVID-19 pandemic clearly demonstrate the importance and relevance of the interconnected social determinants of health. Dr. Pamela Owens, from the Agency for Healthcare Research and Quality (AHRQ) shared, “There’s a complex set of factors that help to explain, but not entirely, some of the differences that we saw—age…, chronic conditions, household composition/multigenerational families, living situation/nursing homes we know were particularly hard hit, the density of the population in which the people live, the reliance on public transportation, and the kinds of jobs people have.”
Promoting A Transdisciplinary Approach
The highly complex nature of the COVID-19 pandemic compelled the research community to rapidly reorganize to address the evolving threat, bringing together researchers from disparate fields and disciplines, and working closely with local leaders to meet the needs of diverse communities. It is these kinds of transdisciplinary and community collaborations that are required to address racial disparities and their underlying social determinants of health. We thus need to retain this kind of cross-sectoral and community-based research to have an impact at the community level.
Dr. Alyce Adams from the Stanford Cancer Institute asked, “How do we thoughtfully promote transdisciplinary research investigation, how do we carefully and meaningfully engage communities in the process going forward, such that…. when that next crisis comes, how can we position ourselves to be able to be more responsive and to be seen as trusted sources of information?”
A new framing for what is valued and rewarded in the realm of research is needed, with a greater impetus for collaborative research that is focused on the community and designed to have an impact.
Key Take-Aways for Designing More Equitable Research
The current research infrastructure is largely grounded in academic medical settings and framed around the importance and value of research that is published in the peer-reviewed literature. This perspective is usually at odds with community-based research that is grounded in the community and has as its primary purpose the improvement of community health and well-being. However, these approaches do not have to be mutually exclusive. There is certainly room to maintain a traditional academic approach while recognizing the value and depth of collaborative research that is based in the community.
Undoubtedly, transforming a long-standing research enterprise requires a sea change. At this moment, when we are at a crossroads and national attention is focused on the need to change entrenched systems for a more equitable future, there is a real opportunity for change and some pathways are beginning to emerge.
Researchers certainly have a role to play through the focus and design of research. However, they too are operating within established structures—structures that must evolve to facilitate a cultural and systemic shift to center equity. The real nexus for change thus lies with key leaders in the field, including funding organizations, as they set the agenda with grant opportunities and requirements for partnerships with community-based organizations; academic institutions as they educate the field, set professional advancement opportunities, and lead large-scale multi-sector research projects; and with academic publishing as it sets the standards for what research is deemed worthy of publication. It is clear that we have work to do across each of these entities for a more inclusive and equitable focus.
Interested in learning more? Registered attendees can watch the recording here.