To drive diverse participation in precision medicine efforts, providers and patient advocacy groups must identify and break down the barriers that exclude minority communities — beginning with the lack of awareness.
Actively encouraging minority patients to sign up for clinical trials and research studies is key, said Dr. Elizabeth Heath, associate center director of translational sciences and chair of the genitourinary oncology multidisciplinary team at Karmanos Cancer Institute in Detroit. She was speaking at the MedCity INVEST Precision Medicine virtual conference on Wednesday. Health participated in a panel on health equity in precision medicine moderated by Dr. Kemi Olugemo, executive medical director of neurology clinical development, Ionis Pharmaceuticals.
“We have fliers in our clinic [saying] ‘Ask me about a clinical trial,'” Heath said. “It’s one of those things that is the last to get brought up. Everybody is under a time crunch, or you may or may not have given bad news [to your patient] and it’s really hard to weave that into the conversation. But if we don’t put that as an expectation and be intentional about doing it, it won’t ever happen.”
Many individuals, especially people of color, navigate an unfamiliar and often hostile healthcare landscape on their own. These patients are not even aware of the full spectrum of treatment options available to them, including ones that can help personalize their care. So, providers must be intentional about making their patients aware of the availability of clinical trials for their conditions, Heath said.
Awareness is not the only issue when it comes to diversifying clinical trial participation and boosting health equity in precision medicine.
Trust is a key factor, especially among Black people who have a longstanding suspicion of the U.S. healthcare system, said Alyshia Merchant, a lupus survivor who after facing several challenges in her care journey established nonprofit Making Lupus Look Good to create a community for people with the condition.
To develop that trust, those conducting research and clinical trials must be transparent about the goals of the trial, the consequences of dropping out and data use and privacy, she said.
But it’s not just up to the researchers to address patient mistrust. Black people must become advocates themselves to encourage their community to participate in precision medicine-focused studies, Merchant said.
In fact, Merchant is keen on educating and creating awareness of clinical trials and studies, like the National Institutes of Health’s All of Us Research Program, through Black voices.
“I’m just having someone come out and say ‘Hey, I’m participating in these trials and I’m okay, and if I can do it, you can do it too,'” she said.
The final major hurdle to encouraging clinical trial participation is access to care and health insurance coverage.
It is important to note that just because a patient has coverage, it doesn’t mean they are very engaged in their care and have knowledge of how the health system works, said Dr. Kate Burke, senior medical advisor of patient advocacy group PatientsLikeMe, during the panel.
“If you are someone who doesn’t even go to a primary care physician to help with your diabetes or your hypertension, it’s highly unlikely you’re someone who will be signing up for a clinical trial,” she said.
This, once again, is where patient groups can step in and help connect people to the resources they need.
PatientsLikeMe provides a digital home for patients, bringing them together to share advice and support, and enabling them to make informed care choices. The platform also allows patients to sign up for research projects.
By working together, providers, researchers and patient advocates can make a dent in the longstanding issue of diversifying clinical trials. And this could ultimately help unlock the promise of precision medicine for all.
Photo: Warchi, Getty Images