by Esther Bush
This month, the “Take Charge of Your Health Today” page discusses vaccine trials and their relationship with Pittsburgh’s African American community. The current COVID-19 pandemic has increased pressure for the medical community to develop a vaccine to combat COVID-19. The development of a new vaccine means that clinical trials will eventually begin to recruit participants. We must ensure that COVID-19 clinical trials will include African American participants. Systemic racism in the United States is responsible for the medical mistrust among African Americans and could be part of the reason for their historically low participation in clinical trials.
In my role as codirector of the Community PARTners core at the University of Pittsburgh’s Clinical and Translational Science Institute (CTSI) and as president and CEO of the Urban League of Greater Pittsburgh, I have made a commitment to inform and educate people about how they can take charge of their health. State-sanctioned violence has been perpetuated against African Americans in the name of medicine since the United States’ inception. The “Tuskegee Study of Untreated Syphilis in the Negro Male,” a United States’ Public Health Service-led research study from 1932 to 1972, intentionally infected African American males with syphilis without their consent. The study’s participants were not adequately treated, and, in some cases, not treated at all, even by 1947 when penicillin was commonly used to treat the disease. We may not have any unethical historical precedents like Tuskegee in our city or universities; however, the public health’s sector failure to establish trust keeps the Tuskegee stigma alive.
The Community PARTners core and the Urban League are vigilant and hold our medical system accountable, ensuring Pittsburgh’s African American community that this will never happen again.
In a 2015-16 Food and Drug Administration report, of the women who participated in cardiovascular trials in the United States, only 3.2% identified as African American, while 78.7% of participants identified as white. The racial makeup of these studies does not reflect the 13.7% of African American women in the country. This does not seem to be an adequate sample of African American women and raises red flags on the accuracy of treatment outcomes for all women. Because we want studies of the current coronavirus pandemic to apply to all of us, African American participation in clinical trials is essential. African Americans make up 25% of all COVID-19 cases in Allegheny County (according to the Allegheny County Health Department), yet only make up about 13% of its population. We can’t afford not to be included in the COVID-19 vaccine clinical trials.
In order to gain footing in research-inclusive spaces, it is my hope that studies include opportunities for community input on topics like the value of participation. What is in it for community members who are asked to share their lived experiences? What is the plan for returning results, including closing the loop on the work in and with communities—particularly black and brown communities that have been historically marginalized—to ensure that researchers are doing the work they set out to do? Accountability in research environment means so much. When possible, thinking about offering both day and evening hours to participate in the research, providing childcare and offering inroads to break down definitions and ethical considerations and exploring safety and privacy in ways that all participants understand, are critical to making research inclusive.
I have two recommendations for researchers who want to increase African American participation in clinical trials. Be mindful that these suggestions are not a complete list and are only intended to initiate the dialogue.
Include us throughout the entire research process. Hiring a research recruiter that looks like us does not help to overcome the barrier of mistrust. Even if the recruiter can connect with the African American community, that relationship ends after the recruitment phase. African American participants are then typically interacting with an all-white research team. This could lead to lower retention rates. Including African Americans throughout the entire process looks like garnering input around recruitment and retention plans, protocols and the dissemination process.
Establish pipelines for researchers from the community. African Americans are usually an afterthought when conducting research studies. Most researchers who are receiving funding to study our communities often decide on a research question based on surface knowledge. However, we know that this is not an equitable process. Researchers are instead contributing to the medical mistrust by doing research on African American communities instead of with them. The Urban League of Greater Pittsburgh has been partnering with CTSI for more than 14 years now. In that time, I have learned so much from CTSI leaders like Dr. Steve Reis and my friend Dr. Elizabeth Miller. In turn, they have also learned a lot from the African American community. This reciprocal relationship between our two organizations has helped to build a pipeline between researchers and the African American community. I am extremely proud of the mutual trust and respect our organizations have built. I look forward to what we will continue to accomplish together.
Thank you, readers. Please join the Take Charge of Your Health page next month when we talk about food insecurity, with particular insight into access during the COVID-19 pandemic.