A “Layered” Approach to Advance Equity in Clinical Trials

A survey of 500 Black women about their perceptions of clinical trials proves many
of the common assumptions about their mistrust or unwillingness to participate in trials to be wrong.

It’s no secret change to make clinical trials more inclusive is overdue.

For Black women, especially, lack of representation has had life-threatening consequences. A recent study found Black women are dying at a nearly 40% higher rate from breast cancer than white women.¹ Yet, it’s reported that half of Black women living with metastatic breast cancer never receive information about participating in a clinical trial.²

“Black women are not hard to reach; we’re just hardly reaching them.”

As communicators, we often hear Black women are “hard to reach” or they opt out of trials due to distrust of the healthcare system. Based on conversations with Black women in my family and community, their perceptions of clinical trials are more nuanced and layered. As part of a team that transforms clinical trial communications to improve health outcomes for diverse communities, this key insight spurred us to deepen our understanding of Black women’s beliefs and barriers to clinical trial participation. 

“Layered: A Report on Black Women’s Perceptions of Clinical Trials,” based on a survey of 500 Black women, proves the common assumptions wrong and reveals an openness to trial participation among Black women that was previously unrecognized. One of the most compelling statistics from the research is that while 80% of Black women surveyed were open to participating in clinical trials, 73% had never been asked to be in one. Black women are not hard to reach; we’re just hardly reaching them.

Black women surveyed were open to participating in clinical trials, 73% had never been asked to be in one. Black women are not hard to reach; we’re just hardly reaching them.

Other Key Findings Include:

• Among respondents who had participated in a clinical trial, 67% had a good or exceptional experience.
• While historical and contemporary mistreatment of Black people in healthcare are factors for non-participation, the top two reasons were fear of side effects (66%) and the trial site was too far (47%).
• The survey also revealed that who might influence Black women to participate ina trial varied by generation. For women under 39, the top influencers were a celebrity, media outlet, or someone they follow on social media; for women in their 40s and 50s, it was their self-care team (e.g., hair stylist), media outlet, or friend/family member; for women 60+, it was a healthcare team member, family member/friend, or patient advocacy group.

The survey underscores that Black women are multidimensional and that communications grounded in the layers of Black gender-expansive identity are essential to creating narratives that resonate. The survey also points to a new priority for industry partners, advocacy groups, and healthcare professionals to support consistent, inclusive clinical trial education across multiple channels to instill trust and increase participation. While work is still to be done, new information is a catalyst for new ways of thinking that bring us closer to exceeding the FDA’s diversity mandate,³ transforming clinical trial communications to ensure medicine works for everyone—including Black women.

References:
1.’https://www.bcrf.org/blog/ black-women-and-breast- cancer-why-disparities- persist-and-how-end-them/

2.’https://ascopost.com/ issues/november-10-2022/ study-finds-nearly-half-of- black-women-with-metastatic- breast-cancer-never-receive- information-about-clinical- trial-participation/

3.’https://www. fda.gov/regulatory- information/search-fda- guidance-documents/ diversity-plans-improve- enrollment-participants- underrepresented-racial-and- ethnic-populations.