For The Breast of Us and Sommer Consulting Continue Highlighting Throughout Breast Cancer Awareness Month Four Major Barriers that Prevent Women of Color from Participating in Breast Cancer Clinical Trials
JACKSONVILLE, FL (October 19, 2021) – Fear and misunderstanding surrounding trials is the third of four major barriers preventing women of color from participating in breast cancer clinical trials, according to research conducted by 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. The study identified lack of access to quality healthcare systems and logistic challenges as the first two barriers.
In honor of Breast Cancer Awareness Month, each week the two organizations are highlighting one of four major barriers that prevent women of color from participating in breast cancer clinical trials, uncovered in their recent research study.
Without being provided the proper knowledge on how trials are designed and monitored, some women of color fear being the ‘guinea pig’ in a clinical study. These women worry that being placed in the placebo group insinuates they are solely a test subject and will not receive any treatment. Many of these misperceptions are spread by word of mouth or based on the medical community’s historical wrongdoings. Since clinical trials are not taught in schools, at home, or discussed often on social media and television, they remain somewhat taboo and many women of color fear their unknown aspects.
To overcome these misconceptions, healthcare professionals and clinical researchers should reference them and provide education on how clinical trials work. They should address specific fears since many patients expect a discussion of this sort to happen in a healthcare office. Research teams are also encouraged to connect women with patient ambassadors from their communities who have participated in clinical trials and can speak openly and candidly about their experiences.
In general, women of color do not discuss healthcare in their families, and because of this, some patients did not know breast cancer ran in their family until they were diagnosed. Asian women spoke out about a sense of shame in their families when they got sick, which was perpetuated by older generations. Cancer signaled weakness and that they did something wrong. This shame surrounding illness and healthcare causes women to be fearful of partaking in a clinical trial focusing on their ‘wrongdoings’.
“I was only 33 [years old] when I was diagnosed, so I’m trying to tell my family and friends, don’t ever hesitate to get checked. I wonder like the older people if maybe they’re ashamed or they think they did something wrong that caused their cancer,” said one Asian breast cancer patient during the study. “My mom also, she was like, ‘you ate too much sugar! You had too much stress in your life.’ [It was] like she was trying to come up with an explanation of why I got cancer even though the medical community keeps telling me, ‘You didn’t do anything; it was just bad luck.’”
For the Breast of Us and Sommer Consulting conducted a nationwide research initiative to understand the experiences of women in healthcare and uncover solutions to increase representation of women of color in clinical trials. The one-and-a-half-month study included 59 women and consisted of 45-minute in-depth interviews.
The second phase of the research is now ongoing, and participants are still needed to further this important research. The two organizations are recruiting for additional survey respondents across various demographics. Those interested can apply here: breastofus.com/ctsurvey.
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.