Lack of diversity in clinical trials can impair quality, increase costs, and put patient safety at risk. Many medicines work differently depending on a person’s gender, race, and ethnicity, so without diverse participants, scientists and clinicians have only a limited understanding of the effectiveness and suitability of treatments for underrepresented populations.
These critical differences are eventually discovered — after the therapeutic has been approved and is in widespread use.
The barriers to diversity have been well-documented, but, despite significant progress, the industry still struggles to overcome them. Much work remains to be done, especially around building trust, according to experts at the recent WCG Avoca Quality Consortium Summit.
They discussed how we must truly listen to patients and their needs, making the case that diversity is not just “nice to have”, but essential.
Among the speakers were:
- Loretta Veney, Patient Advocate and Inspirational Speaker
- Jameka Hill, Senior Director, Clinical Trial Equity, Moderna
- William Maybee, Community Relations Coordinator, Roswell Park’s Center for Indigenous Cancer Research
Veney: Focus on Outreach and Engagement
Ongoing education and engagement within underrepresented communities remains a necessary and critical path forward for making trials more representative, Veney said. That requires active outreach: You can’t rely on primary care physicians to talk about trials with potential participants; not everyone has one. “We have to go where the people are” to effectively connect with communities, teach them about clinical research, and share trial opportunities, she said.
Prime locations include senior centers, churches, and libraries. She also pointed out that advertising on public transportation is a good way to reach underrepresented populations. Sometimes, it takes finding people one by one. “If we have to go door to door [which we did during COVID], we need to do that.”
Hill: Build Trust
For outreach to work, trust-building is crucial, said Hill. Identify the trusted groups and individuals in underrepresented communities. You want to partner with trusted, familiar groups “that are really localized and meet people where they are.”
Then, actively collaborate with them on education and outreach efforts. These efforts include effectively sharing information about trials, educating communities, and equipping community members to make informed decisions.
Like Veney, she drew on some of the lessons from the pandemic. “When I think of COVID and the light it shone on the disparities globally, it didn’t really matter how much we talked about the disparities,” she said. “What matters, a lot of times, is who is talking about the solutions and if those trusted solutions are being presented by a voice [that underrepresented communities] actually hear and believe.”
Maybee: Listen More
Keep in mind that the population you are working with may not be welcoming of research. “Don’t assume that communities need or want anything,” said Maybee, who is a member of the Seneca Nation. “Go into the community with good intentions — as we say, ‘a good mind’ — and I think at the end of the day, we can sleep soundly knowing we did the right thing for the community.”
Honor the community you’re trying to reach, he counseled. “Assume less and listen more.”
In a National Cancer Institute-led initiative, Maybee helped select and present trials he believed would be of interest to indigenous communities. By approaching them with trials on exercise, nutrition, and meditation, concepts that resonated well with them, he was able to educate community members about clinical research without pressuring them. “I was able to talk about trials without seeming like I was imposing our beliefs about trials and who should participate in them.” That approach takes longer, he says, but it’s more effective.
Overall, there’s no one-size-fits-all strategy for building trust, comfort, and connection, Maybee said. Be ready for tough, uncomfortable conversations and questions, and be prepared to start fresh going from one community to the next.
“I don’t take my knowledge from my community into [another] community and expect it to work. I come in with fresh eyes, a fresh perspective, as a new person, as an outsider,” he said. “I’m a new person to that community so I respect the values. Of course, patience goes a long way in cultivating any of the trust as it relates to clinical trial inclusion in my community.”
Ensure Diversity in Your Next Trial
Diversity is not only the right thing to do: It’s good business. You want your clinical trial population to reflect your product’s future consumers. We can help. WCG’s DEI solution has defined policies and processes to engage, educate, enroll, and retain diverse populations in clinical trials.
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