Black Women and Clinical Trials: “We Have a Story to Tell”

Clinical trials are essential for developing new treatments and improving healthcare outcomes. However, Black women have historically been underrepresented in these crucial studies. A recent report called “Layered” by GCI Health sheds light on this issue and offers insights into how to increase participation and trust among Black women in clinical trials.

Kianta Key, senior vice president and identity experience lead at GCI Health, spearheaded this important research. She explains the motivation behind the study to BDO:

“I wanted to be able to counter the assumptions by offering up some data, by offering up some truth even if it’s just a sample size. So, our team at GCI, put together a survey online, and we talked to 500 black women between [ages] 18 and 80 across The US, thirty-eight states to be exact.”

The Layered report revealed some striking findings:

• Lack of Outreach: A staggering 73 percent of Black women surveyed have never been asked to participate in a clinical trial. This highlights a significant gap in engagement and outreach efforts.
• Safety Concerns: Safety emerged as a top priority for Black women considering clinical trial participation. Key elaborates: “I want make sure that it is not a side effect that maybe I am uncomfortable with.”
• Historical Context: The report acknowledges the impact of historical injustices on trust in healthcare. Key notes: “We have to recognize that for sure. We can start with Tuskegee and Henrietta Lacks, but there are also contemporary issues when you look at maternal mortality.”
• Influencer Impact: For younger Black women, influencers and celebrities play a significant role in shaping perceptions about clinical trials. Key suggests: “I do think if influencers are trained, there’s an actual interest there to talk about clinical trials.”

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Addressing Barriers to Participation

To increase Black women’s participation in clinical trials, several barriers need to be addressed:

• Improved Outreach: Healthcare providers and researchers must actively engage with Black women about clinical trial opportunities. Key emphasizes: “We have to demand or ask for it.”
• Education and Transparency: Clear communication about safety protocols, potential side effects, and the overall process is crucial. Key advises: “Taking the time out to explain the safety is paramount.”
• Logistical Support: Recognizing the real-life challenges faced by potential participants is essential. Key explains: “A lot of times the trials are not designed for all people.”
• Cultural Competence: Tailoring communication and outreach efforts to resonate with Black women is vital. Key suggests: “We have to start off again with the data, who’s being impacted by that condition, where they are.”

Empowering Black Women in Healthcare

Key emphasizes the importance of self-advocacy in healthcare settings:

“We have to take that same audacity and that same courage into the doctor’s office and say ‘Hey, I don’t understand this,’ or, ‘Look, you’re you’re my [provider], and I need you to do these things for me because I want to be here for the next one hundred years. How do we get there? What is the plan? What is the road map?'”

She also encourages Black women to be proactive in seeking information about clinical trials:

“We cannot wait around and have people come and ask us if we wanna do a thing. If we wanna do the thing, we have to commit ourselves to being able to, get the information.”

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The Importance of Black Women in Clinical Trials

Bringing Black women into clinical trials is about improving the quality and applicability of medical research. Key explains:

“You don’t wanna have a, a trial or any experiment where the subject in the study looks the same and sounds the same. That means you don’t know if it works for other people.”

She adds: “Clinical trials are not just about me—this is beyond diversity. It’s where there is a need. And that’s where we should be starting.”

Moving Forward

As we work towards increasing Black women’s participation in clinical trials, Key offers this powerful reminder:

“[Black women] are powerful. We know the things. It’s in us. It’s in our DNA. It’s coded. It’s in our genes. I think that is a powerful. You have a story to tell and get Black women to participate.”