Racial disparities are driven by numerous factors, including disease biology and access to high-quality care, such as enrollment in clinical trials. Despite being 14% of the US population, Blacks only constitute 5-7% of participants in clinical trials.
At the recent ASH meetings, Dr. Shakira Grant from The University of North Carolina at Chapel Hill presented an abstract entitled “If You Don’t Trust Your Doctor That Much…You’d Feel Less Confident Doing a Research Study: Factors Influencing Black Patient Participation in Hematology Trials."
The study’s objective was to understand factors that influenced Black participant enrollment in clinical trials by examining Black patients’ perspectives with myeloma and those of their hematologist. The study included 23 Black myeloma patients and 13 white hematologists. Data was gathered through patient focus groups and one-on-one interviews with the hematologists.
Patients were asked questions such as “What concerns, if any, do you currently have about participating in a research study?” and "Who do you trust most to talk to you about clinical research studies?”
Doctors were asked, “Based on your experience as a medical provider or anecdotal experiences of your colleagues, what do you think are factors that contribute to lower rates of engagement of Black patients in clinical trials?”
Key themes identified were financial barriers, trust and mistrust, bias and discrimination, knowledge and attitude, geographic barriers, and communication and language, particularly around the use of the word "trial", which for Black patients had a stigmatizing feel.
For the presentation, Dr. Grant focused on trust and mistrust and bias and discrimination from the hematologist’s perspective. Hematologists’ responses were based on their views of trust between the patient and doctor and trust between the patient and the healthcare system. See figures 1& 2; patient comments are in blue and hematologist comments are in red.
Figure 1 &2
The idea of hematologist bias and discrimination in terms of who they choose to offer clinical trials to were examined. Subconscious bias against Black patients, the idea of being burdened by patients with fewer resources, and assumptions were all common generalities seen. See figure 3
Another area noted in the study was that the idea of having shared racial identities between patients and their hematologists could potentially protect or enhance the likelihood of Black patients participating in clinical trials. One patient responded that when they meet the person, if they dress like them, look like them, and are of the same ethnicity, those things would help.
A doctor responded that he honestly felt that a Black physician who has a deeper understanding of the past violations of trust that have occurred in the medical field could probably do a better job alleviating the concerns of Black patients. That same doctor says that if Black patients have a Black provider who has experienced racism and knows more than what he has read, that trust would be easier established because of the commonality shared.
Participants were asked what strategies healthcare teams could take to start making strides toward increasing representation among clinical trial participants. Answers include:
- Empower patients to get their questions answered, so they don’t feel intimidated
- Increase awareness in the Black community; break the stigma surrounding past medical mistrust
- Present them with an extra benefit for participating in the trial
- Put things in layperson’s terms when speaking about research and what is proposed
The study concludes that hematologist bias, stereotyping, and discrimination influence the decision to offer clinical trials to Black patients. The use of the word "trial" for Black patients was potentially stigmatizing and left them elements of feeling like a guinea pigs or experimented on. Trust at multiple levels is critical to enhancing the enrollment of Blacks participants in clinical trials.
Dr. Grant and her team are currently working on several strategies to think about ways to address the mistrust within the Black community. One is developing a community-based intervention, looking to use community advocates as a way for newly diagnosed myeloma patients to start bridging the gap and talking about clinical trials early in the course and forge the gap when it comes to mistrust.
Valarie shares her knowledge of myeloma and available resources as a volunteer HealthTree Coach. She also leads the Black Myeloma Health Community Chapter. She is passionate about finding solutions to eliminate the barriers of access to care, inequality and disparities.
about the author
Valarie Traynham has been a myeloma survivor since 2015. Wanting to be a source of support, provide patient education and encouragement to help others along their myeloma journey, she is a volunteer myeloma coach, myeloma support group leader and patient advocate. She enjoys being outdoors, reading, and trying new recipes.