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— Research

Building Trust with Communities of Color: Lessons from the COVID-19 Pandemic

People of color have died disproportionally due to COVID-19, highlighting the deep socioeconomic and health disparities that persist in our country.

The pandemic produced scientific innovation, from treatments to vaccines, at an unprecedented pace. Yet, only a small proportion of people who participated in COVID-19 clinical trials and vaccine development were people of color. To overcome this pandemic, we need broad acceptance and use of COVID-19 vaccines, especially among those most affected.

Unfortunately, vaccine hesitancy historically runs high among communities of color. At the core of this lack of participation in research by communities of color and vaccine hesitancy is enduring mistrust in the systems of medical research and care.

Medical mistrust results from an evolutionary form of resilience and a survival mechanism in response to chronic oppression. It provides a sense of control for people who feel powerless in the face of discrimination or who expect to be victims of future mistreatment. Medical mistrust becomes problematic when it prevents people from engaging in healthy behaviors or accessing appropriate health care.

The COVID-19 pandemic provided painful lessons on how we can reduce mistrust in the communities we are supposed to serve.

First, we must acknowledge our mistakes from the past. We must speak frankly and honestly about the legacy of exploiting minorities through research. The notorious U.S. Public Health Service study at Tuskegee followed black Americans infected with syphilis from 1932 to 1972, never treating them despite the availability of penicillin. In a less well-known incident, researchers misused blood samples from the Havasupai tribe for purposes not authorized by participants. American researchers in Guatemala infected vulnerable people with sexually transmitted diseases to explore treatments.

These studies underscore the need to protect our vulnerable and minority communities through the establishment of robust and representative human subjects’ protection programs.

But we cannot pretend that abuses of the past are entirely in the past.

Structural racism and inequities in health care persist, as COVID-19 tragically reminded us. We must take this moment to champion UC San Diego Health as a leading center of excellence for diversity, equity and inclusion for underserved, vulnerable and historically marginalized communities.

Second, COVID-19 reminded us that treating communities of color as “research subjects” is not an adequate approach for regaining trust and engagement in research. When they are involved in framing the questions that affect them, when there is a community-based approach, we have observed that these communities are more likely to be involved and engaged.

Indeed, when people of color were involved as full partners, they helped establish testing sites in churches and vaccination sites in local auditoriums. They encouraged their community members to participate. Without their critical involvement and support, our mobile clinics in underserved communities would have remained without visitors.

We need to empower our communities of color. They need to know that they can be involved at many levels. They can participate as community members of an institutional review board, which helps ensure the rights and welfare of human research subjects. They can work with scientists in community advisory boards or with university groups for community-based research efforts that address particular concerns in their own neighborhoods.

This cannot be a neo-colonialist, paternalistic process. It must involve full partnerships that enhance the dignity and self-efficacy of the community and concomitantly reduce health disparities.

Third, COVID-19 helped facilitate the broader implementation of electronic consent documents. But this innovation became problematic for communities of color with limited computer access, challenges in health literacy and chronic suspicion of unknown processes promoted by unfamiliar entities.

Our informed consent process must strive to become more transparent and to assure full understanding of every participant. We need to make it simpler, more direct and more relevant to participants’ lives.
Finally, our academic systems encourage young investigators to prove themselves by publishing, securing extramural funding and achieving promotion and tenure through this path. We must aggressively support them in these efforts. As essential as it is to grapple with research methods and applications, it is equally important to teach awareness of cultural differences, perspectives and conflicts of interest.

One can see how real-world crises can focus and elevate speed and efficiency. Building relationships with our communities of color takes time. It requires conversation, most especially listening and commitment. We need to enhance the training of our younger investigators to minimize implicit bias and promote empathic engagement.

We must be worthy of trust in order to gain it.