BlackDoctor.org’s Clinical Trials Day Summit brought together healthcare professionals, researchers, and patient advocates to address a critical healthcare disparity: the significant underrepresentation of Black Americans in clinical trials. For healthcare providers, the summit offered valuable insights into improving clinical trial diversity and ultimately providing better care for all patients.
Black Americans are missing in the data
Dr. Angela James, Founder & CEO, Diversity Health NetWoRx, highlighted the fundamental scientific problem with homogeneous clinical trials: “We’re using drugs for other populations that aren’t being studied [in Black Americans] in the clinical trials. And that as a scientist, is very difficult to say I can predict what would happen based on the data that I have.”
This lack of diversity has real clinical implications. Dr. James explained, “Not just how the drug behaves
in our bodies can be different, but how our bodies behave on the drug. How we absorb it, how we metabolize it, those types of things that really all play into what kind of dose you get, how frequently do you get the dose.”
Dr. Keith Crawford, Director of Clinical Trials and Patient Education at the Prostate Health Education Network shared striking evidence of these differences: “A drug, a clinical trial was conducted at a reputable institution… When you combine [two drugs] together, it had no impact on white men. But when you combine it together for black men, it doubled the life expectancy.” Without diverse participation, such critical findings remain undiscovered.
Healthcare providers can be complicit
Healthcare providers were challenged to examine their own practices. Dr. Wendy Garvin Mayo, CEO & Founder of Collaborative Cancer Care, noted: “I think organizations have to take responsibility of who they’re hiring and how passionate they are about really inclusion, diversity. Yes. I’m saying it. And equity. These things are important.”
Dr. Michael Farkouh, Associate Dean for Research and Clinical Trials and Cedars-Sinai shared systemic approaches to improving diversity: “We’re working on a new strategy to be able to through the medical record, to reach out to patients when they’re eligible for studies… By having an opt-in system, it opens up the possibility they can learn about clinical trials.”
He also emphasized the importance of congruency between providers and patients: “If they have a black patient, patients are more receptive to clinical trials if the investigator and or the research coordinator also come from the same ethnic groups.”
Dr. Tony Lozama, Medical Director at Novartis, shared a concerning anecdote about provider bias: “I was sitting with a provider one time, and they just assumed that an African American woman who was older on paper had everything that they needed to be part of a study, but didn’t think that they’d be able to really commit to the study because they just had the assumption that they don’t have transportation… And I asked a very simple question of, well, the Caucasian woman that was just in here before that also fit that profile, did you think the same way of them?”
Putting patients first
Patient advocates provided powerful testimony about their struggle to access clinical trials, even as healthcare professionals themselves. Latoya Bolds-Johnson, a physician assistant diagnosed with triple-negative breast cancer, shared: “I was pushing for trials on my own from the very beginning. I understood the importance of clinical research as a PA, and I was dismissed a lot by my oncologist whom I fired.”
Dr. Yelba Castellon-Lopez, a research scientist at Cedars-Sinai, emphasized the importance of patient-centered approaches: “Transparency in both the risks and the benefits of trials, making information and trial-relevant information available to the public in accessible language, explaining the process, expectations, and risks and benefits.”
She also stressed the value of working with the community and listening. “We come into communities and we sort of, you know, think that we know. But I think if we stop and listen, that’s a really great way to start to build trust.”
For healthcare providers seeking to improve clinical trial diversity, the summit offered this crucial insight from Nader Daoud, Associate Director, Clinical Trial Health Equity at Moderna: “It’s about not copy and pasting in reality… When we talk about going to these sites, when we talk about going to investigators, when we talk about engaging trusted voices and communities, it’s about thinking about it very intentionally from every trial lens.”
The message was clear: inclusive science is better science, and healthcare providers have a crucial role in ensuring all patients have access to cutting-edge treatments through clinical trials.