Two studies led by UNC Lineberger Comprehensive Cancer Center researchers and colleagues looking at relationships between Black patients with multiple myeloma and their hematologists found that trust, at multiple levels, along with perceived differences in the power structure between patients and physicians, were critical elements that needed to be addressed in order to enhance the enrollment of Black participants in cancer clinical trials.
UNC Lineberger’s Shakira Grant, MBBS, the studies’ principal investigator, shared the findings during oral presentations at the annual meeting of the American Society of Hematology (ASH) in New Orleans on Dec. 10.
Trust and patient-hematologist relationships
Between August 2021 and January 2022, the research team enrolled 13 hematologists to participate in a 60-minute virtual semi-structured interview; they also enrolled 23 patients diagnosed with multiple myeloma to participate in six focus group discussions lasting up to 90 minutes.
Hematologists perceived trust at multiple levels, between the patient-provider and the patient-health care system, as influential determinants of Black patients’ enrollment in clinical trials. Factors that fostered patient-hematologist trust included the length of the relationship, transparent and empathic communication, and shared racial identities of patients and hematologists. They also viewed lack of time, trial availability, and adequate clinical trial infrastructure as barriers to discussing and enrolling Black patients in clinical trials.
For patients, trust in the hematologist, the health care system, and the proposed research were determinants of whether Black patients enrolled in a clinical trial. Patients also emphasized the importance of hematologists acknowledging the historical events that led to the intentional harm of Black people engaged in research-related activities. Furthermore, the use of the word “trial” was perceived by patients as potentially stigmatizing as it invoked feelings of being a “guinea pig” or being “experimented on.”
Shared racial identities, addressing inequities
“Our study shows that no one intervention is capable of addressing the inequities in clinical trial participation. The idea of shared racial identities between the hematologist and patient was raised by hematologists enrolled in the study,” said Grant, assistant professor of medicine in the Division of Hematology at the UNC School of Medicine.
She gave an example of a direct quote from a hematologist who self-identified as white: “I honestly feel a Black physician who has a deeper understanding of the violations of trust that have occurred in Black patients treated through the medical profession in the United States can probably do a better job allaying the concerns of Black patients… if you had a Black provider who’s actually experienced racism and knows more than just what I’ve read, you can establish that trust between a Black provider and Black patient easier because there is that commonality.”
Grant said the study included only white hematologists because there so few Black hematologists in North Carolina and nationally. “I believe, at least from our study, that while these shared racial identities could be beneficial, we need to think about multilevel interventions tailored to patients, providers and organizational and societal practices that continue to drive inequities in cancer clinical trial participation,” Grant said.
Examining relationships between patient and hematologists
In the second study, researchers used the same qualitative dataset from patient interviews and focus group discussions to examine the influence of the power difference between patients and hematologists on clinical trial enrollment.
Both patients and hematologists expressed awareness of existing power differentials within the structure of their relationship and the influence that had on communication about clinical trial enrollment. The asymmetric relationship structure created patient discomfort about raising the possibility of clinical trial participation or asking questions from their hematologist about the clinical trial process.
Patients and hematologists acknowledged the legacy of medical mistrust induced by past research efforts, such as Tuskegee, where Black people were intentionally harmed. This and other historical events were viewed as examples of clinicians using their power to dominate and potentially manipulate research participants.
“This research reflects the uneven power structure within the patient-hematologist relationship and how these types of power could influence a Black patient’s decision to enroll in a clinical trial. While the patient-provider relationship represents only one of several determinants of trial participation, it is likely one of the most influential factors,” Grant said.
Authors and disclosures
In addition to Grant, the other authors on both abstracts at UNC are Milenka Jean-Baptiste, MPH, Mykela Moore, Jiona Mills, Lauren Bates, MA, Sascha A. Tuchman, MD, MHS, and Paul Mihas, MA.
Grant and Tuchman received funding from the Jimmy V. Foundation for Cancer Research Grant No (A21-0961-00; PI: Tuchman) to support this study’s conduct. Tuchman received funding from Prothena Corp. and honoraria from Shattuck Labs and Janssen related to both abstracts.
Abstracts
380 “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
383 “You Have Your Knowledge, but I Have My Knowledge of My Body”: The Hematologist-Patient Relationship and Enrollment of Black Participants in Clinical Trials