A long inglorious history of medical racism and mistreatment has dire health consequences. Consider the atrocities associated with experimentation on African Americans without informed consent during the Tuskegee Syphilis Study (1932-1972), which eroded the trust in the medical profession and medical research, and undermined the nation’s ability to achieve health equity.
Medical mistrust continues to worsen due to the negative health care experiences African Americans still endure today. For example, during the initial rollout of the coronavirus vaccine, some African Americans cited poor treatment by medical providers and health care institutions as a reason not to get vaccinated. This threat to vaccine equity is disturbing, given that African Americans and other people of color remain at an increased risk for COVID-19 infection, hospitalization, and death.
This long legacy of structural racism and medical mistrust threatens the nation’s ability to ensure that African Americans benefit from medical breakthroughs in research and receive novel prevention or treatment modalities.
The mistreatment of African Americans within the medical system, compounded by the lack of basic research knowledge, helps fuel much of this mistrust. A key component to building and sustaining medical trust and addressing inequities is ensuring better research literacy among African Americans. As health care professionals with expertise in health care and health communications, we have provided credible health information to patients and consumers. Because of our proximity to patients, we have witnessed firsthand the perils of being misinformed or uninformed about health-related matters, including medical research.
While it is hard to know what percentage of African Americans are research literate, we know that poor personal health literacy can perpetuate health disparities and poor health outcomes. Some individuals with lower health literacy are at an increased risk of not being able to navigate the health care system, communicate effectively with providers or adhere to health care recommendations. Low health literacy can also influence an individual’s ability to understand the research process or make an informed decision whether to participate or not participate in any research.
To complicate matters further, although Black Americans have some confidence in scientists, in one study as many as 61 percent of respondents reported being concerned about research misconduct and accountability. This lack of trust and confidence in research accountability, along with inadequate research literacy creates the perfect storm for the ongoing lack of representation by historically marginalized people in clinical research and ongoing COVID vaccination efforts.
Understanding the history of medical mistreatment is still a key part of medical distrust but can serve as a barrier to progress. The focus needs to shift to ways researchers prevent any research misconduct and ensure the protection of all human subjects.
Small gains in research literacy are being made with programs such as All of Us from the National Institutes of Health, which works to build a database of health data from a diverse group of people to accelerate research and research participation. What makes the program unique is that participants have full access to the data they share and know about all the projects that use this data.
Some African Americans learn about research by participating in community-based participatory research projects or serving as science citizens for research organizations or as research team members. This is a good start, but researchers and stakeholders must do more to ensure research literacy and transparency.
Any effort to strengthen research literacy should consider these and other factors known to influence an individual’s ability to receive, understand, and use all forms of health information. As advocates call for improved health literacy, we need a strong focus on research literacy now and beyond the COVID-19 crisis.
The lack of a solid foundation of research literacy compromises Black Americans’ ability to make sound health decisions about things like research participation and other health concerns.
To address this pressing issue, researchers and research organizations must provide opportunities for African Americans to learn about research before initiating recruitment efforts. This could be a component of health-related community outreach endeavors working to reach this population. Proposals for research funding should include ways to enhance research literacy as appropriate. Such efforts should include a focus on the advancements in the protection of human subjects. These advancements include a stronger emphasis on transparency through informed consent, greater investigator oversight and accountability, and more stringent regulations. This is especially important for members of the African American community who are influenced by prior research cruelties.
Research literacy could help support the decision-making process of African Americans by dispelling the myths associated with the current vaccine rollout and providing more assurances regarding the rigors associated with drug development and other scientific breakthroughs. New initiatives to advance research from this perspective are critical to disrupting the cycle of underrepresentation of African Americans in clinical research and improving the utilization of scientific breakthroughs by those most in need.
Ensuring research literacy is a must for achieving health equity. Anything less has the potential to perpetuate the ongoing health disparities and health inequities that have plagued communities of color for centuries.
Janice Phillips is a nurse and public policy advocate. Nikki Hopewell is a journalist.