Rebuilding Trust in Clinical Trials: Diverse Patient Recruitment
The health and well-being of all persons regardless of race, religion, sexual orientation, or gender is integral to public health. As a nation, the United States is slowly improving and becoming self-aware of the maladaptive behavior towards its minority citizens both past and present. Notably, BIPOC (Black, Indigenous, Person of Color) members of society have a history of fear and distrust due to poor, unethical, neglectful, and even cruel treatment received from medical and governmental research organizations1, 2, 3.
What can we do to successfully recruit patients from the BIPOC community when there are so many lingering issues that need to be addressed?
Let’s first look toward recognizing and acknowledging the concerns of the BIPOC patient. This could look like addressing concerns, understanding cultural differences and significances, and initiating productive discussions. Bridging the gap between the medical research community and minority populations is not a simple check list or a one-size fits all solution.
When interacting with different populations, whether it be African American, Asian, Latinx, Indigenous or other BIPOC peoples, it is absolutely integral to dive into the identity and culture of the community. Identities and cultures have been neglected in the past, causing communities to push against participating in healthcare systems. The needs of each community can differ from each other, though there are common parallels that can be useful to provide each group.
Several communities don’t trust the efficacy of health care (and its providers) or the science that backs it. This sort of trust is built by continued dialogue, outreach education efforts, and partnering with community leaders. Partnering and collaborating with all communities regardless of type of research, rather than strictly analyzing and doing research on the community, provides these patients autonomy, confidence, and the initial seeds of trust.
If we wish to truly incorporate and recruit patients within the BIPOC community, we must implement trust rebuilding strategies around respect, collaboration, and relationship development. CPPR, or Community Partnered Participatory Research, is an approach that addresses the needs of each individual community4. By using this method, we can begin and maintain an equitable partnership between ourselves and diverse communities. CPPR uses community partnership to develop research, implement that research and disseminate research results to the community.
What sort of steps can we make when looking toward the CPPR, ethical SOPs and cultural relativity for guidance?
- • Recognize communities as units of identity
- • Build on the already established strength, resources, and trusted members of communities
- • Facilitate collaborative partnerships with community organizations
- • Promote co-learning and education
- • Bring a balance of passive research and action for all who are affected by the research
- • Focus on and inform communities about relevant public health problems
- • Create, maintain, and update ethical research SOPs consistently
- • Share the research knowledge gained to all community organizations
- • Establish a long-term commitment to the process (continue building relationships with communities even after termination of research)
By implementing and building on certain equitable methods and concepts (as again, nothing is one-size fits all, each community will have different needs and concerns), treatment and recruitment is a duty that we ALL must undertake. Building trust and relationships is slow, but necessary, process. We need to ensure true equability and equality in ALL demographic populations, as each population is an important piece of the mosaic that is our healthcare and global community.
1 Braunstein JB, Sherber NS, Schulman SP, Ding EL, Powe NR. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine (Baltimore). 2008 Jan;87(1):1-9. doi: 10.1097/MD.0b013e3181625d78. PMID: 18204365.
2 Whitesell NR, Mousseau A, Parker M, Rasmus S, Allen J. Promising Practices for Promoting Health Equity Through Rigorous Intervention Science with Indigenous Communities. Prev Sci. 2020;21(Suppl 1):5-12. doi:10.1007/s11121-018-0954-x
3 Hong, Y.‐R., Tauscher, J. and Cardel, M. (2018), Distrust in health care and cultural factors are associated with uptake of colorectal cancer screening in Hispanic and Asian Americans. Cancer, 124: 335-345. https://doi.org/10.1002/cncr.31052
4 Sankaré, I. C., Bross, R., Brown, A. F., Del Pino, H. E., Jones, L. F., Morris, D. M., . . . Kahn, K. L. (2015). Strategies to build trust and Recruit African American and Latino community residents for Health research: A cohort study. Clinical and Translational Science, 8(5), 412-420. doi:10.1111/cts.12273