New Survey Uncovers Distrust as Key Factor in Enrollment Declines Among Black Patients
Findings from two Baltimore medical centers presented at the American Society for Radiation Oncology Annual Meeting suggest spiritual themes and distrust may be behind the decline in trial participation.
Results from a survey conducted by two Baltimore medical centers suggest spiritual beliefs and a historically-based distrust of clinical research may factor into patient enrollment declines among Black patients. The findings, presented at the American Society for Radiation Oncology (ASTRO) Annual Meeting, show these factors could have a significant impact on Black patients’ decisions to participate in clinical research.1
“When you offer someone participation in a clinical trial, the conversation has to go beyond the consent form,” Charlyn Gomez, lead author of the study and a medical student at the University of Maryland School of Medicine in Baltimore said in a press release. “If we want to improve recruitment of underrepresented people in clinical research, we cannot just talk about trial goals. We have to look beyond that to understand where the patient is coming from and what their priorities are.”
The cross-sectional, descriptive study had a goal of demystifying the growing underrepresentation of Black people in oncology trials and identifying how researchers can improve their recruitment efforts. Despite self-reported trust, results showed a lingering distrust in clinical research among the patient population.
Gomez continued, “Our research has identified some really important themes that should be discussed with patients as part of the recruitment process, such as spirituality or faith, as well as recognizing the elephant in the room that is a justifiable mistrust stemming from structural racism and historical practices in clinical trial programs. But on the positive side, we also found there is trust in the medical care team and perhaps we can build from there.”
The study took place between October 2023 and February 2024. Of the 97 participants, 30% were Black. The participants were asked if they would participate in a clinical trial and describe the factors they might consider when making this decision. There were no differences in insurance coverage, education, employment status, cancer stage, or cancer treatments between Black and non-Black participants.
According to the results, Black patients were more than five times as likely to agree with statements that death or illnesses were determined by God’s will and that God, not research, determined wellness. Additionally, one-third of Black patients said they felt research would provide information about their health they would rather not know about, compared to just 4% of non-Black participants.
“Physicians need to be more intentional in their efforts to gain the trust of Black patients so they may be better represented in clinical trials. Unfortunately, due to a host of issues such as systemic racism and fewer access points into the healthcare system, we are seeing that Black patients tend to experience poor outcomes with certain cancers,” Gomez said in the press release. “This reality should raise a lot of alarms, because if we're trying to develop new treatments and the patients who need them the most aren't part of the clinical trials testing them, then we're missing a big group of important people.”
Looking forward, there is hope that the findings of this study can guide improved training for researchers and physicians on patient recruitment.
“It's crucial for us to improve the recruitment of Black patients into cancer clinical trials,” Gomez concluded. “But to do that, we have to understand the values and priorities of patients in this underserved population.”
Reference
1. Spiritual themes, distrust may factor into Black patients’ reluctance to participate in cancer clinical trials. News release. American Society for Radiation Oncology. September 30, 2024. Accessed October 2, 2024. https://www.eurekalert.org/news-releases/1059414
