Lack of information, not mistrust, the biggest barrier to Black women's participation in clinical trials: survey

A new report by healthcare communications agency GCI Health found that Black women aren't avoiding clinical trials due to mistrust. The reasons for their underrepresentation are “more layered and nuanced.”

The report is based on a recent summer survey with 500 responses from Black women across the U.S. It reveals that, while the majority (80%) are "open" to participating in a clinical trial, 73% have never been asked to do so.

While it's commonly believed that Black women are unwilling to participate in trials due to mistrust of the healthcare and biopharma systems, GCI's survey responses unveiled a more complex perspective.

The data suggest “that access to information is the largest barrier to participation, rather than mistrust in the medical establishment, as commonly believed,” GCI Health’s report found.

“We often hear that Black women are missing from clinical research because they are ‘hard-to-reach’ or reluctant to participate due to mistrust of the medical establishment,” said Kianta Key, group senior vice president and head of identity experience at GCI Health, in a press release. “In talking with women, we heard something more layered and nuanced that deserved exploration.”

Drilling down into the findings, the survey found that the top two reasons for non-participation were fear of side effects (66%) and the trial site being too far away (47%).

The majority of surveyed women expressed positive to neutral views on clinical trials, with almost half (49%) holding a "positive" to "somewhat positive" perception, while 41% had a neutral stance with neither a positive nor negative perception

GCI reported that just 10% held a negative perception. Among those who had participated in a study, 67% reported a "good" or "exceptional" experience.

The survey also found that Black women have many influencers who are encouraging them to enter a trial, many of which are not healthcare-related and depend on age.

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, influencers included their self-care team (e.g., hair stylist), media outlet or friend/family member. Meanwhile, for Black women aged 60 and above, influencers were a healthcare team member, family member/friend or a patient advocacy group.

“Our industry has a responsibility to reverse years of underrepresentation in clinical trials and do more to support better healthcare outcomes for Black women,” said Kristin Cahill, global CEO of GCI Group, in the release.

“Equity is critical to ensure new treatments and health interventions work for everyone. This research helps get us closer to understanding what needs to be done to make positive changes that will save lives and create healthier communities.”