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 27, 2021) – Distrust in the U.S. healthcare system is the fourth major barrier 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, logistic challenges, and fear as the other major barriers.
A 2020 American Society of Clinical Oncology (ASCO) study, which analyzed one million patients with cancer in the U.S., found that despite women of color patients having a 28 percent higher cancer-specific mortality rate than white patients, the former represented less than four percent of all subjects in multiple trials of lung cancer treatments. Similar underrepresentation of people of color in clinical trials is common across different types of cancer treatment research. Throughout Breast Cancer Awareness Month, For the Breast of Us and Sommer Consulting have highlighted one of four major barriers each week that prevent women of color from participating in breast cancer clinical trials, uncovered in their recent research study.
According to the study’s findings, because of systemic racism, women of color think “why now?” when it comes to clinical trials. They have become conditioned to being underrepresented. Systemic racism has created a healthcare system where there are very few women of color doctors or researchers. In general, people tend to want a doctor who looks like them and, therefore, understands them. While women of color doctors are underrepresented, when they are in the medical field, they are seldom the ones conducting clinical trials. A lack of representation at every level of the healthcare system fuels distrust among women of color from participating in clinical trials.
Women of color do not know who involved in clinical trials they can trust to ensure they will not be ‘guinea pigs’ in an experiment. They also do not know how to find out about trial opportunities. They are skeptical of the promises of individuals aside from their family, friends, and trusted doctors. This distrust creates a sense of cynicism towards clinical trials.
To overcome this fear, healthcare professionals and clinical researchers should provide information on how clinical trials work and create a safe space within the clinical trials. It is also important to diversify clinical studies as they should represent the whole U.S., not just a sub-population.
“Imagine someone’s telling you to do something, but the people telling you to do something, nobody looks like you. Everything is made to represent white people, from dolls to TV to everything,” said one Black breast cancer patient during the study. “It’s a distrust—You’re telling me to do something that could potentially harm me, but you don’t look like me, you don’t have my experiences, we’re not the same person, we couldn’t be the same person, we don’t have the same life experiences.”
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.