The world changed as we knew it when the World Health Organization (WHO) declared COVID-19 a global pandemic in March 2020. With this declaration, clinical and epidemiological data became foundational for all decision-making among health researchers, physicians, pharmaceutical companies, hospital systems, and the public health apparatus of government entities. The medical community across these sectors has been working together to use data to develop new COVID-19 treatments, including vaccines and therapies, at an unprecedented speed.
The clinical trial patient populations driving the development of these vaccines and treatment therapies were predominantly white – an alarming fact, especially given the higher COVID-19 mortality rates experienced by Black and Latinx Americans. Initial data on Johnson & Johnson’s trial reveal that only 4% and 5% of trial participants ages 55 and under were Black or Latinx, respectively, despite Black Americans making up 13% of our country’s population and Latinx making up a third.
Diversity in clinical trials has been a pain point in the development of pharmacological and biomedical therapies for decades. Despite federal requirements to prioritize women and minorities in research, most clinical trials fail to adequately represent Black and Latinx populations.
As the U.S. population continues to diversify, failure to consider racial equity in clinical trial research may further exacerbate health disparities, and by default, the health of the country.
By viewing communities as partners to work with rather than patients to study, the medical industry can help deliver transformative public health outcomes for the populations most in need while improving their overall diversity, equity and inclusion efforts.
Acknowledging medical racism, past and present
The insufficient number of Black and Latinx people included in clinical trials is disheartening, but not surprising. For generations, the medical community has failed to address its own racist behavior and invest in building social capital in communities of color, which continues to contribute to the lower rates of participation in clinical trials among Black and Latinx communities.
Reporters and commentators often cite the infamous Tuskegee syphilis study as one of the root causes of the Black community’s distrust of the medical community. However, recent research has shown that it’s more likely Black distrust stems from the ongoing racism Black Americans experience in medical contexts today.
The harrowing experience of Dr. Susan Moore – who died from COVID-19 two weeks after she posted a video explaining how her repeated requests for better treatment were ignored by her white doctors – demonstrates the unequal treatment Black patients continue to receive today.
Implicit bias in the medical community impacts Black and Latinx people, whether it’s the fact that non-Hispanic Black women are three times more likely to die giving birth than white women according to the American Journal of Managed Care, or the common experience Black and Latinx people have with doctors dismissing their symptoms of pain. Knowingly or not, doctors are not giving them the same treatment.
Systemic barriers that impede participation in clinical trials
Aside from the frayed relationship people of color have with the medical industry, there are a number of interconnected, structural barriers that limit people of color’s ability to participate in clinical trials.
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Academic Exclusion: Clinical trials often rely on large academic institutions to recruit participants, which results in participant pools that are whiter, more educated, wealthier, and more male than the general population. Under-resourced hospital systems where people of color are more likely to go often lack the infrastructure and funding to conduct clinical trials.
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Lack of Insurance: Black and Latinx adults are less likely to have health insurance, which means they are less likely to see a doctor for regular checkups and are therefore less likely to be referred to clinical trials.
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Transportation: Clinical trials often require participants to travel far distances for site visits. Patients in rural areas or urban transit deserts may face heightened barriers to accessing clinical trials as a result of inadequate access to transportation.
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Individual Bias: Researchers have demonstrated widespread, racist beliefs among healthcare providers and researchers about Black patients’ likelihood of complying with medical regiments, which may influence who they deem eligible for clinical trials.
Despite a widespread recognition of these barriers, clinical trial recruitment efforts have not directly addressed them.
Moving beyond a transactional approach
Traditional clinical trial recruitment efforts often come across as transactional: researchers approach communities only when they need participants for their studies and leave after they complete their research. This sends the message that researchers are only interested in communities when it suits them and does not build trust or capital in the long run.
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To achieve greater diversity in clinical trials, medical researchers need to be intentional about bolstering relationships and communication with Black and Latinx communities. Start by actively listening to figure out what people need from the medical community. They may have a longstanding mistrust of doctors and would prefer to interact with a provider or researcher of color, or perhaps the health problems they face are not being prioritized by researchers.
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Community engagement strategies should take into consideration the social determinants of health that lead to health disparities as well as the structural barriers that prevent people of color from participating in clinical trials. When approaching communities across the country, it is important to remember that every community is unique. Take the Latinx designation for example: communities of Puerto Ricans in the Northeast are different from Mexican American populations near the southern border. Your communication and outreach need to reflect these local nuances.
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Gather feedback and input to determine if your engagement efforts have been successful. Success should be defined by both the number of people recruited, but also by the ability to make people feel seen and heard by your efforts. You may find that you need to recalibrate, which is okay. If you continue to actively listen, collaborate, assess, and adjust as needed, you will be able to develop a meaningful relationship with the communities around you.
COVID-19 teaches us that health threats can connect all people regardless of circumstance, because while the virus has a disproportionate impact on communities of color, it doesn’t discriminate.
Now is the time to promote positive health strategies, provide access to regular and competent healthcare and engage communities in ways that foster trust and create lasting partnerships.
