For many Black Americans, clinical trials evoke legitimate concerns rooted in historical mistreatment within the healthcare system. Healthcare providers play a crucial role in addressing these myths and misconceptions while building trust with communities that have been historically underrepresented in medical research. Clinical trials editor Taylyn Washington-Harmon moderated this discussion on Clinical Trials Day, addressing common myths and misconceptions that Black Americans believe about clinical trials.
Acknowledging History and Building Trust
The first step for healthcare providers is acknowledging the historical context that has led to mistrust. As Michael Farkouh, MD, Associate Dean for Research and Clinical Trials and Cedars-Sinai, explains, “There are many myths and many historical events that have occurred that have led to mistrust, and I think we need to acknowledge that.”
Yelba Castellon-Lopez, MD, MS, a research scientist at Cedars-Sinai, emphasizes that providers must approach communities with humility: “I think we have to acknowledge the historical context… working with the community and listening. A lot of times, we come into communities and we sort of think that we know. But I think if we stop and listen, that’s a really great way to start to build trust.”
Creating Representation Within Research Teams
Research shows that patients are more receptive when they see themselves represented in the healthcare teams recruiting for clinical trials. “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 group,” says Dr. Farkouh. “They see someone that’s like them and they identify with them, and there’s already a bond there that you have to build on.”
Providing Complete, Transparent Information
Amanda Bishop, Clinical Trial Diversity Program Lead, Associate Director, Clinical Operations at Merck, stresses the importance of comprehensive education: “We really have to do a better job is to help the community feel knowledgeable about what a clinical trial entails. Because if you know what it entails, then you can make a decision for yourself.”
This includes clarifying that “clinical trials follow strict guidelines, regulatory standards. They’re designed to protect participants’ rights and safety,” and ensuring patients understand “you can ask questions in the beginning, or you can ask questions later and throughout the whole process.”
Engaging Communities Where They Are
Healthcare providers must move beyond clinic walls to build relationships with communities. “The second element is to bring the community into the perspective, to go out to the churches, to the community centers, and enlist the participation of the community in the clinical trial,” Dr. Farkouh advises.
Dr. Castellon-Lopez adds that “decentralizing and coming and meeting people where they are” is crucial for addressing barriers like “transportation, childcare concerns, and some of the barriers that we know exist.”
Implementing Systemic Solutions
Healthcare systems can implement technological solutions to help providers identify eligible patients without bias. “We have some novel artificial intelligence technology that is gonna allow us to identify patients when they’re eligible for a trial,” explains Dr. Farkouh. “That’s gonna make it convenient for the doctors not to have inherent bias where they may only approach patients that they think would be interested in participating.”
Creating Support Networks
Creating peer support systems can help patients navigate clinical trial participation. “We are developing a strategy through our community engagement that we have a buddy system,” Dr. Farkouh shares. “Black patients who have participated in trials before could be supportive for patients who are considering randomizing in a clinical trial and understand the experiences.”
Establishing Long-Term Relationships
Perhaps most importantly, providers must commit to ongoing community engagement. “Having relationships and building trust over time is also important, not just coming to a community that one time when you’re trying to recruit, but really establishing long-term relationships of give and take,” says Dr. Castellon-Lopez.
She also emphasizes the importance of following up with communities about research outcomes: “Circle back around with our communities and let them know what we learned from your participation because I think that can help build trust also.”
By implementing these approaches, healthcare providers can help address misconceptions about clinical trials while ensuring that research benefits and includes all communities. As Eleanor Sales, Director of Clinical Research Operations and Board Member at Diversity Health NetWoRx, notes, these efforts ultimately create “building trust, providing the transparency, and really just building the network” necessary for inclusive healthcare research.