For The Breast of Us and Sommer Consulting Urge Healthcare and Clinical Professionals to Address the Top 4 Barriers that Prevent Women of Color from Participating in Clinical Trials
JACKSONVILLE, FL (November 2, 2021) – Women of color are severely underrepresented in clinical trials, missing out on potentially lifesaving treatment. This could also potentially lead to less inclusive and definitive research findings. As a result, For The Breast of Us – an online community dedicated to women of color affected by breast cancer – and Sommer Consulting – a consulting firm that engages in qualitative and quantitative research with patients and healthcare professionals – urge healthcare and clinical professionals to modify how they have historically engaged with women of color on clinical trial opportunities.
The two organizations recently conducted a nationwide research initiative to understand the experiences of women in healthcare and uncover solutions to increase women of color representation in clinical trials. This study uncovered four major barriers that prevent women of color from participating in breast cancer clinical trials: simple logistics, lack of access to quality healthcare systems, fear and misunderstanding, and distrust in the U.S. healthcare system.
Throughout the study, participants continued to reiterate these four barriers. Healthcare and clinical professionals have a responsibility to remove these barriers for women of color.
Women of color find themselves living further away from quality healthcare systems with connections to clinical trial researchers. This becomes especially difficult for women who act as primary caregivers and work full time jobs. These women are often concerned with who will take care of their kids if they are part of a clinical trial, and many may not have flexible work schedules that allow them to get to doctors’ appointments.
“You still have to worry about how am I going to run my household, especially as a woman of color, who typically a lot of times are single-family or single-parent households,” said one Black breast cancer patient during the study.
In addition, women of color have become conditioned to being underrepresented, and they often think “why now?” when it comes to clinical trials. Without being provided the proper knowledge on how trials are designed and monitored, some women of color fear being ‘guinea pigs’ in clinical studies. When information is provided, language barriers often become a major hurdle for women whose first language is not English.
“For my parents, language is a huge barrier…I think they only understand probably three fourths of what they’re told,” said one Asian breast cancer patient during the study. Similarly, one Hispanic breast cancer patient added, “I always saw my mom having difficulty maybe explaining things to the doctors because of the language barrier…The sense of frustration, I could see [on] my mom’s face…it might have been a sort of like an embarrassment for her.”
To overcome these barriers and increase women of color representation in clinical trials, healthcare and clinical professionals must find ways to communicate directly with these diverse communities. They must both provide these communities with education in their primary language on how clinical trials work and create opportunities for these women to access screenings in their communities.
For The Breast of Us and Sommer Consulting will continue highlighting the urgent need to increase women of color representation in clinical trials. The organizations are now moving onto the second phase of their study. Participants are still needed to further this important research. The two organizations are recruiting for additional survey respondents across various demographics. Those interested may apply here: breastofus.com/ctsurvey.
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About For the Breast of Us
Founded in 2019, For the Breast of Us is the first online community dedicated to women of color affected by breast cancer. The website provides tools, resources, and support to help women of color overcome the barriers to quality healthcare and long-term survivorship. For more information, visit breastofus.com.
About Sommer Consulting
Sommer Consulting is a women-owned, custom primary qualitative research firm with a minority-majority C-suite that has harnessed best-in-class practices adapted from the Psychology, Linguistics, and Communications fields for more than 40 years. Visit sommerconsulting.com for more information or to tap into Sommer as a source of current patient and HCP insight trends.