Despite progress in cardiovascular disease prevention and treatment, black adults in the USA still face higher rates of premature CVD death compared to white adults. According to Dr. LaPrincess C. Brewer and Joshua J. Joseph of the Cobb Institute, this disparity is rooted in systemic inequities and a lack of access to clinical trials for black communities.
Their commentary published in Nature highlights several reasons for this lack of inclusion. Many clinical trials fail to prioritize black participant enrollment, and there’s a general absence of accountability for achieving diversity in research.
This negligence stems from a history of unethical research practices that has fostered a deep mistrust of clinical research among black communities. Examples like the Tuskegee Study and the forced sterilization of women from minority groups are cited as reasons for this skepticism.
The consequences of the lack of blacks in clinical trials
The lack of black representation in cardiovascular clinical trials has significant downstream effects. Firstly, researchers miss crucial opportunities to understand and address the specific health concerns identified by black communities themselves.
Secondly, the underrepresentation of black patients creates a gap in data on how they respond to various medical therapies. This lack of data hinders the development of tailored solutions to improve cardiovascular care for black communities, who are most in need. Ultimately, the absence of clack voices in research allows existing health disparities to persist and prevents the development of effective treatment strategies specifically designed for black patients.
Furthermore, the lack of black researchers and healthcare professionals in leadership roles discourages participation from black communities. This lack of diversity hinders researchers’ understanding of the challenges faced by black patients, further limiting efforts to increase enrollment.
A legacy of unethical research on black Americans
Deep mistrust permeates black communities due to a history of unethical research practices. The Tuskegee Study of Untreated Syphilis and forced sterilizations of minority women are frequently cited examples. These historical wrongs have fostered a justifiable skepticism toward clinical research among black people.
Neglectful practices by researchers
The current research landscape often fails to prioritize black participant enrollment. Many clinical trials lack clear plans for recruiting black patients, and there’s a general absence of accountability for achieving diversity. This negligence reflects a lack of understanding of the specific challenges faced by black communities.
Lack of black healthcare professionals
The underrepresentation of black researchers and healthcare professionals in leadership roles further discourages participation. This lack of diversity creates a gap in understanding between researchers and black communities.
Researchers may not be fully aware of the logistical challenges and opportunity costs that prevent black individuals from participating in research. Additionally, black patients may feel less comfortable or heard when they don’t see themselves reflected in the research team.
What can be done to improve black clinical trial participation
The cornerstone of this approach lies in rebuilding trust with black communities. Firstly, researchers and funding agencies must acknowledge past injustices and current inequities in health care.
Partnerships with trusted community organizations can facilitate open dialogue and collaboration. These partnerships can also ensure that research agendas reflect the specific health concerns identified by black communities themselves.
Funding reforms and community engagement
Funding agencies need to invest in long-term, community- engaged research projects led by diverse investigators. Current practices often favor well-resourced institutions, putting under-resourced researchers at a disadvantage.
Shifting to longer-term funding would allow for more rigorous research that better addresses the needs of minority groups.
Beyond simply increasing diversity metrics, the authors advocate for a “community in-reach” model. This approach empowers black communities to co-design research questions and address their specific health concerns. Initiatives like the ComPASS program and lay stakeholder engagement in grant review committees are examples of such practices.
Centering the patient above all else
At the patient level, solutions need to address the logistical and practical challenges that prevent black individuals from participating in research. Offering flexible scheduling options outside of regular business hours and locating research sites within black communities can significantly increase accessibility.
Additionally, providing financial compensation for time and travel can help offset the “opportunity cost” of participation.
Another key solution is the inclusion of black research ambassadors. These individuals can serve as trusted liaisons between the research team and black communities, addressing concerns and promoting awareness about the benefits of participation.
The authors argue for a paradigm shift in cardiovascular clinical trials. Moving beyond traditional research models, they propose a “community-driven” approach that tackles social and structural barriers to participation.
This will ensure equitable representation in clinical trials, leading to better research and improved cardiovascular health outcomes for black communities. Only through intentional and actionable changes can we address these disparities and achieve true health equity.
