June 11, 2024
Clinical trials have transformed modern medicine, driving breakthrough treatments and new therapies that save lives every day and enhance quality of life for countless patients. Yet, despite significant strides, clinical trial participation does not reflect the diversity of our communities. Much work still must be done to ensure that medical research includes the patients most impacted by a disease, helping to ensure that a potentially groundbreaking therapy works for all.
To mark Clinical Trial Awareness Week in May, GCI Health co-hosted a community conversation in partnership with Health In Her HUE, a digital platform that connects women of color to culturally competent healthcare providers, titled “Beyond Recruitment: Empowering Black Women to Participate in Clinical Trials to Drive Health Innovation.”
Kianta Key, Group Senior Vice President and Head of Identity Experience at GCI Health, joined Denise Bronner, PhD, a health equity advocate, for a wide-ranging discussion on where clinical trials stand today and where they need to go in the future.
Central to the discussion was GCI Health’s groundbreaking report, “Layered: A Report on Black Women’s Perceptions of Clinical Trials.” Compelled by conversations with women in her family and community, Key launched the research to examine the prevailing hypothesis that Black women choose not to participate in clinical trials. Based on a national survey of 500 Black women across generations, the research dispelled myths and illuminated truths about Black women’s beliefs and barriers to clinical trial participation.
The Journey to Inclusivity
While women represent 50% of the U.S. population, they generally account for just 40% of clinical trial participants. And, despite having worse health outcomes than white women, Black women are largely absent from current clinical trial research.
While the road to equity in clinical trial participation is long, Dr. Bronner explained that it needs to begin by asking Black women “two simple questions” about clinical trials: “Have you heard, and would you be willing?”
“We have people on the bench that should be in the game,” noted Key, leaning into a sports metaphor to illustrate the underrepresentation of Black women in medical research. Sharing that her research was born from the realization that she, her mother and her grandmother – “three generations of Black women” – had never been asked to participate in a clinical trial, she emphasized, “We can’t opt into something if we’re not even given a chance.”
What Representation Looks Like
“When we think about representation, it can mean a wide range of things,” explained Dr. Bronner. “It can be location, socioeconomic background, male or female. You don’t want to work on the assumption that what works well for one group works across the board.”
Key hailed two Black women, Freda Lewis-Hall, MD, DFAPA, MFPM, former chief medical officer at Pfizer, and Heather Dowdy, head of accessibility at Netflix, who have put representation into focus. Key noted that Lewis-Hall emphasizes that for clinical trials, it’s critical to start with “disease epidemiology” to know who is most impacted by the disease or condition. If Black women, who are “most burdened by chronic disease,” are not included in research, the drug is not going to work for everyone. Dowdy advances an understanding that “when you solve for the one, you can extend to many.” Inclusive research, Key noted, “isn’t just about getting Black people involved. It’s about all of us.” Diversity in clinical trials, she said, “has the opportunity to lift us all.”
How To Get There
Dr. Bronner noted that many clinical trial sites are outside Black communities, and if researchers go to the same sites “over and over again, they’re going to get the same type of patients.” Researchers need to overcome the hesitance to expand to new communities. “The assumption is that the Black patients and Black doctors don’t want to participate,” said Key, “but that’s just not true.”
When patients look for trials, the prevailing website, ClinicalTrials.gov, is challenging to navigate. Typically, marketing imagery and messaging haven’t reflected Black patients. “Now you’re seeing marketing and educational materials and partnerships with influencers to encourage participation,” noted Dr. Bronner. But there’s still more work to be done, she added, “especially with the messaging.”
“We do this work each day at GCI Health,” said Key, “More companies are seeing the power of digital and AI” to help drive inclusive recruitment strategies. “Most trial participants are still coming through their doctors,” Key noted, but the Layered study revealed other health influencers. “We can’t treat every community like a monolith.”
For Black women under the age of 39, the top influencers were a celebrity, media outlet or someone they follow on social media. For Black women in their 40s and 50s, it was their self-care team (e.g., hair stylist), media outlet or friend/family member. For Black women aged 60+, it was a healthcare team member, family member/friend or patient advocacy group.
Key and Dr. Bronner noted that a sustained presence, intentional investment and consistent messaging are critical. Dr. Bronner suggested that providing resources, like “questions to ask your doctor,” helps build trust. “If we use the different channels and show consistent investment, it’s not just pandering to them,” she explained. While digital strategies and AI are important, Key emphasized that the human connection is critical. “Technology is changing; we’re seeing the rise of AI.” But, she noted that while we will need AI, “we also need the other AI – authentic intelligence.” This means in-person, in real life communication to avoid alienating Black communities or perpetuating the use of bad data or incorrect assumptions that have fueled decades of underrepresentation.
Click here to hear the full GCI Health and Health In Her HUE community conversation.