Trust-Building, Community Connection Still Essential to DE&I Efforts, Experts Say
Great progress has been made in the movement to improve diversity, equity and inclusion (DE&I) in clinical research, but experts say more work is needed improving trust and scaling down to the community level to continue making strides.
To patient advocate and inspirational speaker Loretta Veney, continued education and engagement within underrepresented communities is still a necessary and critical path forward for making trials more representative.
Don’t just rely on general practitioners to talk trials with potential participants; not everyone will have one, Veney said during the 2023 Avoca Quality Consortium (AQC) Summit last week. For this reason, it’s essential to think of where you can best reach members of underrepresented communities. Senior centers where retired people socialize, churches on Sundays and libraries are all prime examples of locations to effectively connect with communities, educate them on trials and share trial opportunities, while public transportation can be a great advertising avenue for reaching underrepresented populations, she noted. Even canvassing should be considered.
“We have to go where the people are who are underrepresented,” Veney said. “If we have to go door to door, which we kind of learned during COVID, we need to do that.”
Trust-building, too, is still highly critical, added panelist Jameka Hill, senior director of clinical trial health equity for Moderna. To her, effectively sharing information about trials, educating communities and arming them with the ability to make informed decisions begins with strong efforts to partner with trusted, familiar groups “that are really localized and meet people where they are.” Think about who the trusted groups and figures are in underrepresented communities and work together with them on education and outreach efforts.
“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 [underrepresented communities] actually hear and believe.”
In connecting effectively with any given community, William Maybee, community relations coordinator for Roswell Park’s Center for Indigenous Cancer Research, offered this pithy advice: “Assume less and listen more.”
“Don’t assume that communities need or want anything,” Maybee said. “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.”
It’s particularly important to honor the community you’re trying to reach, Maybee advised, and understand the population may not be welcoming of research. That’s largely been the case, in his experience, with the tribal communities he works with, as these communities have few educational resources for clinical research and what it means. Despite this, Maybee has found ways to break through and connect effectively, and the Center for Indigenous Cancer Research has continued its efforts to educate and encourage those communities.
In one National Cancer Institute-led initiative, Maybee personally helped select and present trials he felt would be palatable to the indigenous communities he works with. By coming to the communities with trials on exercise, nutrition and meditation, concepts that resonated well with them, he was able to educate community members on clinical research without making them feel pressured or overwhelmed, he said.
“I was able to talk about trials without seeming like I was imposing our beliefs about trials and who should participate on them, and that seems to go much further, [though] it takes much longer, I think, to make progress,” he said.
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.”