As the U.S. celebrates Juneteenth, Americans are amplifying conversations around where disparities still exist 156 years after the enslaved people of Galveston, Texas were freed. The holiday gives us an opportunity to pause and consider where the country must improve to reach true equality for Black Americans.
Black patients are continuously underrepresented in clinical trials across many disease areas. Despite making up at least 13% of the U.S. populations, only 2.9% of trial participants identify as Black, compared to the 83% of participants who identify as White. This issue perpetuates inequality across healthcare. Continuously excluding Black patients from trials leads to the approval of potentially lifesaving drugs that haven’t been safely tested on all individuals.
Alzheimer’s, for example, affects Black Americans twice as much as White Americans yet, Black Americans make up only 2% of Alzheimer’s trial participants. Similarly, across all cancer trials, Black Americans made up only 7% of patients, an especially discouraging number given that death from cancer is more common for Black Americans than other demographics. These added disparities reveal a devastating truth that Black Americans aren’t receiving an equal chance at treatment as White Americans.
With increased Black representation, scientists could gain a better understanding of the physiological differences affecting the ways diseases manifest or medications take effect and work to diminish these disheartening metrics.
One research site in Inato’s network, Great Lakes Research Institute, has displayed unwavering efforts to dismantle these barriers in their community. Founded on a commitment to provide patients in Detroit, Michigan with high quality research opportunities, this community site brings trials to a primarily Black American patient population. Despite historical mistreatment of Black Americans in the healthcare and the clinical trial industry, the site’s genuine patient-physician relationships have allowed Great Lakes Research to flourish since opening in 2021. With a team of investigators who not only reflect the community demographics, but have spent decades building trusting relationships with patients, their mission was welcomed by the community.
When asked about combating the possible stigma and mistrust around clinical trials, owner of Great Lakes Research, Christopher Zomerfeld, said, “It’s more the opposite. We have subjects tell their friends and family about the studies and then receive inquiries from those same friends and families on a daily basis.”
Their personalized, caring approach to research allows patients to feel confident that, when offered an opportunity, their physician has their best interest in mind. “We find it very important to share the information, give the patient the chance to speak and ask questions, then step back, and let the patient make the decision for themselves. When a community is mistreated and taken advantage of for any length of time, they are going to be far more hesitant when they feel they’re trying to be sold something,” said Zomerfeld.
Having already recruited 100 patients for trials this year, and the majority identifying as Black, it’s clear this approach is working. To Zomerfeld’s team, offering trial opportunities also means fostering strong connections and serving a vibrant, family-oriented community. When recalling such moments of connection with their patients, Zomerfeld thought back to a recent visit where he spent over an hour speaking to a patient and listening to stories of his childhood playing baseball with Smokey Robinson, his involvement with Motown, and working with Diana Ross, reiterating, “We’re fortunate to get to work with our community every day.”
It’s relationships like these that allow Great Lakes Research to stand out as an exceptional example of a community site breaking down barriers, and striving for representation in trials. They do everything in their power to provide quality care to those around them, including free COVID-19 testing for all, even after the HRSA expired.
As the conversations around inclusive trials grows more prominent, uncovering the true needs of the community will be crucial in moving into a future where diversity is expected. Sites like Great Lakes Research Institute that are actively working to bring high quality treatment into their community, and that are willing to have these conversations, are crucial in evoking change. As they raise their voices and advocate for underrepresented patients, the industry may shift towards a more patient-centric reality where Black Americans can have faith in a system that celebrates and prioritizes their representation.
At Inato, our mission is to amplify the voices of community-based sites like Great Lakes Research Institute, bringing innovative medical care to historically underrepresented populations.