Opinion | Health Research Must Be Anchored in Community Narratives

There’s an effort afoot to exclude the voices of Black communities from K-12 education, evident in the recent gutting of the AP Black History course, as well as local and state legislation limiting education on race. My experiences as a health researcher and evaluator, and a Black woman from Ghana, have shown me the dangers of excluding narratives, at least in the provision of equitable health. If we hope to achieve health equity, we need to switch from a paradigm of doing research on — or “to” – communities, to doing research as community, where those we hope to help invite us in. We need to do better in our research and evaluation design by anchoring in community — creating programs that communities themselves want, help design, and execute.

In working towards creating health research and evaluation systems grounded in equity, us health scholars have to start asking ourselves if our work is in service to the communities we serve, or an extraction mill, churning evidence that perpetuates inequities and harm. Communities can be defined either from the lens of the final beneficiaries of our scholarship, or the partnerships we develop as proxies. For example, I have spent several years studying the impact of mobile health clinics. In these projects, I did not work directly with patients served by mobile health clinics, but rather the healthcare delivery teams and advocates. I developed a survey and asked these teams and community advocates to complete it, but quickly found that would not fly.

Several weeks went by with no responses to my survey even after email follow-ups. Instead, I needed to seek an invitation into the community, to build trust as someone coming in to partner with them — not to extract for my gain, advancing my own research and career. I needed to show a spirit of true partnership. I did that by seeking opportunities to attend various meetings, and sharing how my experiences and knowledge could be a collective part of their important work. I also maintained connections with the community by staying in touch with their leaders, sharing my progress, and continuing to build relationships with individuals who completed my surveys. I am glad to say that once I was invited, I was in. I still collaborate with the community and I attribute the success of a recent publication to our relationship.

Part of my approach to cultivating the success in my mobile clinic work had nothing to do with my academic training. Rather it was through my lived experiences. I was born in Ghana where solving community problems involve hearing everyone’s story and seeking solutions together. Teachings from my grandmother, who still lives in Ghana, served as my focal point in keeping my work connected to the community. She embodies intersectional facets of living through her faith, resilience, and her belief in science. These all helped hone her multi-disciplinary way of respecting and learning from indigenous wisdom in communities. It wasn’t just my grandmother’s way of doing things that I learned from. The culture was baked into her community, and seen in health initiatives there. For instance, a successful 2020 program to expand COVID-19 prevention and treatment in rural areas of Ghana began by soliciting support from the local Chief and elders, who then announced the intervention to the community.

Anchoring to community in our work as research and evaluation scholars may sound like a major shift in our approach, one that requires more work in already underfunded fields. However, in the long run, this approach provides an opportunity to shift dynamics and tap into community power, which is ultimately more efficient, cost-effective, and beneficial. Anchoring health research within communities can also help counteract decades of mistrust among Black people, created by a racist system centered on whiteness. When communities invite us in, we can build this trust while being mindful of the culture, and the way the community exists and functions. National research efforts such as the All of Us Research Program are a great way to start: more than 80% of the participants are from historically underrepresented groups. To anchor community in health equity we need to move beyond communities invited to work with us, to communities inviting us to be thought partners on issues that need evidence to inform decision making.

Frameworks already exist to guide research and evaluation scholars in anchoring communities in our work. The indigenous framework, for example, helps assess how ready programs are to move from a lens of doing work “to” the community, to doing the work “as” the community. As a result of this shift in perspective, one program in Fresno, California, successfully enlisted Latinx high school students to help educate peers and community members on COVID-19 vaccinations. Other frameworks like the I.M.P.A.C.T. approach, stress ways to honor the culture of communities in generating evidence for use in health decision making.

In the current cultural climate of denying and shaping historic truths, I urge health researchers and scholars to take the opposite approach. We must anchor our efforts more than ever within communities, allowing ourselves to be invited in, to tap into authentic narratives that reveal how communities are turning the page on structural racism by finding solutions within.

To do so, we should look to examples like Ijeoma Nnodim Opara, MD, founder of the Anti-Racism in Medicine Action Roundtable. A partnership between Opara’s team, community health workers, and mobile health units resulted in some 2,500 referrals to social service for Detroiters. Another inspiration is Alfiee Breland-Noble, PhD, founder of mental health nonprofit The AAKOMA Project, whose work on the first ever national survey of youth of color showed significant mental health disparities between different socially marginalized groups. These and other innovative leaders, like the Black Mamas Matter Alliance of 18 Black women-led organizations driving better maternal health outcomes, demonstrate the powerful change that arises from centering in community. Such initiatives anchored in community are showing the way for inclusive research and move us toward health equity.

Sharon Attipoe-Dorcoo, PhD, MPH, teaches at Texas Woman’s University, and is a 2022 Public Voices fellow of AcademyHealth in partnership with TheOpEdProject.