“to Represent a Black Point of View”: Willingness of Black Persons with Multiple Myeloma to Participate in Clinical Trials
Authors: S. Grant; Milenka Jean-Baptiste; Jiona A Mills; Shanghong Wang; P. Mihas
Year: 2023


 Background
 Cancer clinical trials are essential for advancing scientific knowledge and improving patient-centered clinical outcomes, but racial-ethnic diversity is often lacking (Ajewole et al., 2021; Alqazaqi et al., 2022). In multiple myeloma (MM) trials leading to Food and Drug Administration (FDA) approvals, only about 4% of participants are African American (AA)/Black (Kanapuru et al., 2022) despite higher incidence rates in this group. Barriers, like medical mistrust, communication issues, trial location, and eligibility criteria, contribute to underrepresentation (Grant, Jansen, et al., 2022; Grant, Jean-Baptiste, et al., 2022b; a; Kanapuru et al., 2023). Understanding factors influencing participation is critical for recruitment (Sheridan et al., 2020), yet a focus on the willingness of Black persons to participate in clinical trials remains underreported. Therefore, our objective was to understand factors influencing the willingness of AA/Black persons diagnosed with MM to participate in clinical trials.
 Methods
 We conducted a descriptive qualitative study between August 2021 and February 2022, recruiting 23 patients diagnosed with MM from a Comprehensive Cancer Center in North Carolina. For comparison, participants were grouped into three types of focus group discussants (FGDs), those with and without prior clinical trial enrollment and one group with a mixture of trial experience. All enrolled participants completed a researcher-captured sociodemographic survey, followed by the remote semi-structured FGD, lasting between 90-120 minutes. We used ATLAS.ti v9 and later v 23.2.1 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc).
 Results
 We conducted six focus groups: three with 13 participants without trial experience, two with 7 participants with prior experience, and one with a mix of trial experience. Participants without trial experience were younger (mean age 61 years, median 65 years, range 40-71) than those with trial experience (mean age 68 years, median 69.5 years, range 55-83). Most participants with trial experience had an associate degree or higher and higher annual pre-tax incomes ($100,000 to $149,999). Participants without experience had varied education levels but significantly lower annual incomes (<$30,000). All recruited participants had health insurance, with only two enrolled participants without trial experience having Medicaid insurance coverage. Factors influencing willingness to participate (Table 1) included: 1) awareness of clinical trials, 2) perceptions about trials, 3) interest in representing AA/Black persons in trials, 4) altruistic motives, and 5) perceived benefits (beneficiaries).
 Participants with prior trial experience often regarded clinical trials as crucial for their survival, emphasizing the significance of research in benefiting themselves and others. One participant even used the phrase “to represent a Black viewpoint” when explaining their decision to enroll in a clinical trial. While discussing perceptions, participants generally brought up unethical research practices that have affected AA/Black persons. However, they also highlighted the importance of having AA/Black representation in clinical trials. All FGDs emphasized their willingness to participate in future clinical trials, and many showed altruism by viewing it as an opportunity to “pay it forward” and contribute to the greater good, leading to positive feelings and outlooks for some. Additionally, many FGDs highlighted safety concerns for interventional therapies and the need to weigh the benefits of participation in this regard carefully .
 Conclusion
 Our study reveals that AA/Black persons with MM are willing to participate in clinical trials, regardless of prior experience, although some may initially have limited awareness of such trials. This underscores the importance of implementing multilevel approaches (individual, interpersonal, healthcare system, and policy) to enhance awareness and influence perceptions. Moving forward, we emphasize the significance of establishing community partnerships to shape educational and outreach efforts, promoting diversity in research participants. Furthermore, additional efforts are needed to ensure equitable participation opportunities for AA/Black individuals within healthcare system interactions.