It is a fact—Black people are severely underrepresented in clinical trials, which are critical to improving outcomes for those suffering from chronic illnesses.
But misperceptions about that underrepresentation persist. A recent summit hosted by Black Health Matters sought to debunk the myths the medical community has used to explain the lack of Black participation in clinical research, with the goal of turning the tide.
“We’re looking to get Black people more involved in clinical research, because without it, we won’t know if these medicines are effective for people like you,” Denise Bronner, Ph.D. Janssen Diversity’s director of equity and inclusion in clinical trials, told the audience.
First, a key statistic: While around 14% of Americans are Black, they account for less than 5% of trial participants. This is a major concern because there are several diseases that have a specific impact on Black populations.
Lupus, for example, disproportionately affects Black women, and its progression can vastly differ when compared to White women. That is why diverse representation in clinical trials is essential as it helps to identify treatments that work as well as the differences in disease progression across all demographics.
Dr. Bronner, along with Melanie Igwe, co-founder and chief operating officer of digital health platform ViuHealth, debunked three myths that are likely impacting the participation rates of Blacks in clinical trials as part of their call to action:
Myth #1: Black participants simply do not exist. The medical research community—trials sponsors and biotech companies who create the medicines—often say prospective Black participants do not exist. And while that is used as a justification for low participation, that simply is not true, said the panelists.
Dr. Bronner stated that intentional outreach is necessary, not only through education and raising awareness in Black communities, but also by building an enduring alliance with the people in those communities. “Because on several occasions, companies will come into communities to set up shop, get what they need in terms of patients and data then leave. And we cannot continue to let that happen,” she said.
She pointed to ViuHealth’s efforts to diversify research and make clinical data more representative. ViuHealth not only consolidates patient medical records, they also help them identify trials that are available in their area. Thus far they have ~40,000 patients in their ViuHealth database and 30% are Black (~12,000), a number that continues to grow month to month!
Myth #2: Blacks are not interested in clinical trials. It is true that Black people have a historical distrust of clinical research as a result of the Tuskegee study and other medical atrocities. But clinicians and sponsors need to make an effort to go into Black communities to gain trust, address concerns, and change the narrative about medical research, the panelists said.
“It is wholly incumbent for us to reimagine the way that we are looking at care and look at it in a more collaborative capacity,” said Igwe. “Because once you’re able to do that and once you’re building these inroads, you understand some of the myths you believe are lacking in any kind of reality.”
Igwe said of the patients ViuHealth has recruited to date, 45% have been diverse, and of that 45%, 50% of them are Black. She attributed those numbers to the explanatory information about clinical trials that is featured on the platform as well as ViuHealth’s effort to match participants with a “study buddy” for support throughout the lifecycle of the trials.
Myth #3: Patients are most likely to drop out of clinical trials. Dr. Bronner noted a common physician belief that because their Black patients often stop taking their prescribed medications, they would similarly drop out of clinical trials.
She highlighted that medical professionals fail to acknowledge how medicines are impacting the patient’s quality of life or whether insurance coverage has become an issue for the patient. As a result, they are falsely assuming Black patients will not remain in clinicals trials. In these instances, “physicians are the barrier,” said Dr. Bronner.
Igwe added that health literacy is important, that patients need to be empowered with information to have impactful conversations with their physicians. ViuHeath makes sure it provides patient-facing materials to help spark conversations between individuals and their physicians about their care. Additionally having a study buddy to guide the patient through their trial journey provides the reassurance that patients seek.
Because of that investment, Viuhealth’s patient retention is high—greater than 60% of patients are remain in a study they were eligible for. “If people feel supported…people will know you have their best interest at heart, and as a result, really demonstrate the behavior you’re trying to show to them that is good for their health.”
