For this month’s Clinical Trials Conversations, we interviewed Wenora Johnson, a stage III CRC survivor to shed light on the numerous barriers for diverse populations to enroll in clinical trials, and how the community can work together to address these challenges.

People who are underrepresented in health care are generally likely to also be underrepresented in clinical research. We recognize that clinical trials are arguably the most important step to transition research into the real world, providing benefits across disease states, and improving health outcomes throughout various populations. 

Looking at the demographics of clinical trial enrollees, Black Americans make up approximately 18% of enrollees, while Latinx/Hispanic populations represent a mere 6% of trial participants. In nearly two-thirds of clinical trials, there is zero representation from Indigenous communities. We continue to see low enrollment numbers in spite of the fact that Black Americans and Indigenous populations have a higher risk of developing colorectal cancer (CRC) compared with Caucasian counterparts.

From your perspective, what do you see as the greatest barriers for diverse populations enrolling in clinical trials?

From my perspective, the greatest barriers include:

• Distrust of the medical system/research that goes back to the Tuskegee Syphilis experiment
• Fear that they will be guinea pigs and that physicians wouldn’t care if something happened to them
• Lack of access to health care and facilities and quality insurance coverage
• Provider perception (bias and false perceptions) about people of color – e.g., that they are less educated, and therefore, less likely to adhere to clinical protocol, as well as the assumption that people of color wouldn’t like to participate in clinical trials, rather than asking them
• Concern that a person of color would get a placebo and a white person would get the real medication
• Lack of education on clinical trials - people of color need to learn more about clinical trials so they can make an informed decision

When you were diagnosed with CRC, did you consider searching for clinical trials? What was your experience like?

I was diagnosed with stage IIIb CRC. While the standard treatment of care was surgery and six months of chemotherapy, I was very open to the idea of clinical trials. In fact, I did some research on the ClinicalTrials.gov website to see what the latest options for CRC were in 2011. Since my standard treatment plan worked, and I’ve had no evidence of disease, I keep an open mind for clinical trials due to my Lynch Syndrome diagnosis. A recurrence of CRC can happen at any time and I want to be armed with the latest knowledge available.

How do you use your expertise to help others find clinical trials?

One of the best opportunities I’ve had as a patient advocate is to be a curator for the Fight CRC Clinical Trial Finder. It served a dual purpose. It allowed me to better understand treatment options such as immunotherapy and also how genetics play an important role in treatment options and understanding tumor markers. It also helped me become a better spokesperson on clinical trials to people of color. This means helping others understand and dispel myths associated with clinical trials and guiding individuals to use trial finders like the Fight CRC Clinical Trial Finder. 

What can researchers, advocacy orgs and others in the cancer sphere do to reduce barriers and make it easier for minority communities to find and enroll in clinical trials?

Barriers can be reduced for minority communities by:

• Providing accurate information about the clinical trials process using social media, pamphlets, and nurse navigators to help patients understand, as well as dispelling myths associated with clinical trials.
• Showing minority representation in advertisements regarding clinical trials
• Addressing language barriers – translating into other languages 
• Providing pop-up clinics in economically depressed areas where health care staff can answer questions and/or concerns patients may have
• Providing possible financial incentives to help offset costs associated with clinical trials.
• Making sure that diversity, equity, and inclusion is truly taking place for all patients.

The process of finding a clinical trial and enrolling can be daunting. Fight CRC and COLONTOWN are committed to providing the resources and tools to help the patient community identify the best option to improve quality of life, and improve access to care. 

Fight CRC works in step with the patient community to discover new ways to improve and extend lives by addressing issues like these. For clinical trials to benefit the populations they are intended for, the racial and ethnic diversity amongst participants must be increased.

Be sure to learn more about Fight CRC’s clinical trial efforts and our work addressing health care disparities.

Stay Tuned for More!

Once a month, Maia and Manju will spend time unpacking important research trials, tips, and advice for our community. Be sure to subscribe to sign up with Fight CRC and join COLONTOWN’s online community to continue receiving the most relevant updates in the CRC world!

You can also follow Maia (@sassycell) and Manju (@manjuggm) to stay updated on research and trials and visit ClinicalTrials.gov for more information on trials.

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