While Breast Cancer Awareness is top of mind for most during the month of October, another pervasive aspect of the disease that should be spotlit all year long is the racial disparities in healthcare, especially toward Black breast cancer patients. Black women with breast cancer have a 71% higher risk of death than white women (JAMA Oncology, 2021) and a 39% higher recurrence rate than white women (Phase III TAYLORx Trial). In answer to these inequities, Ricki Fairley, co-founder of TOUCH and a survivor of stage 3A triple-negative breast cancer survivor and Venus Stokes (RN) of Ciitizen, a healthcare technology company that helps patients get full control of their medical records to access better treatment options, including participation in research and clinical trials.
These two thought leaders recently sat down with Black Doctor to discuss the importance of equitable healthcare and their involvement with #BlackDataMatters, an initiative aimed at encouraging Black women to participate in clinical research.
Why is it so important for Black women to participate in clinical trials?
VS: In order to address the racial disparities in healthcare, it is imperative that Black women participate in clinical trials. Research has shown that breast cancer mortality is approximately 42% higher among Black women compared with white women, and Black women are not benefitting from the same reduction in mortality rates from breast cancer as white women in recent years. As the data collected from clinical trials are used to advance our screening capabilities and pursue the development of targeted therapeutic options, it is critical that the patients represented in these studies reflect the actual diversity of the real world patient population. This begins with the empowerment of Black patients and education of the clinical community, driven by courageous advocates like Ricki who inspire patients to demand change.
RF: Black women are continually underrepresented in breast cancer clinical trials, making up only 3% of participants in the breast cancer clinical trials that led to FDA approvals between 2008-2018. Not only does this impede Black women from access to the life-saving treatment options offered in clinical trials, but it also obstructs research that is critical to understanding specifically how new treatments and products perform with Black women. I knew that I couldn’t do this work alone so my organization, TOUCH, The Black Breast Cancer Alliance, joined forces with Ciitizen, Breastcancer.org, Morehouse School of Medicine, and The Center for Healthcare Innovation. Together we conducted a comprehensive research study to identify and understand the emotional barriers that keep Black breast cancer patients from participating in clinical trials. Our hope is that our partnership educates Black women about clinical trial research and builds trust between Black women and clinical researchers, empowering them with the confidence to ask questions, especially when they are not asked to participate, and advocate for themselves throughout their treatment.
Breast Cancer: Underrepresentation in Clinical Trials is Leaving Black Women Behind
What do you attribute to the hesitancy Black women have to partake in clinical trials?
RF: The traumatic history of exploitation and racism in the scientific and medical industries has understandably posed huge barriers of trust for women of color. Nearly a third of Black women believe scientists cannot be trusted, compared to only 4% of white women. As a result, the average participation by Black women in breast cancer clinical trials overall is less than 3%. This is where a platform like Ciitizen dedicated to democratizing health data and empowering patients to take charge of their treatment journey is critical. By giving Black patients tools to safely store and access their medical data, Ciitizen fosters trust between Black patients and researchers.
What drove you to become an ambassador for the #BlackDataMatters initiative?
RF: I started the #BlackDataMatters initiative at TOUCH, the Black Breast Cancer Alliance to put Black patients in a position of power to transform the research and medical system that too often fails us. With their own mission to democratize healthcare and empower patients through their health data platform, Ciitizen has been an ideal partner. In securely storing data in one place, Ciitizen helps patients to manage and direct the use of their health records, strengthening patient trust and powering our initiative to encourage participation in critical clinical trial research that will ultimately help identify the genetic differences that influence care and outcomes for Black women.
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VS: With a mission to empower patients by giving them tools to ensure their medical records are research-ready, the Ciitizen platform collects, digitizes, and organizes patient medical records to match them with research initiatives such as #BlackDataMatters. While patients have an exciting opportunity to choose to contribute their health records to this life-saving research, the Ciitizen platform is secure, private and free of charge, regardless of whether patients choose to participate in research or use the platform solely for their care coordination needs. Between the incredible engagement from Black breast cancer patients we’ve seen thanks to Ricki’s advocacy work, and the invaluable data contributions powered by the Ciitizen platform, our partnership is making remarkable strides toward improving Black breast cancer research.
Can you provide a bit more detail about Ciitizen’s clinical trial matching program?
VS: In its no-charge service to patients, Ciitizen leverages the HIPAA patient right of access to obtain an individual’s entire medical record from multiple sites of care, digitizes the information, structures it, and stores it securely and in the patient’s control. Patients then initiate trial-matching with a simple sign-up procedure. Their data is recast into clinical trial selection language, enabling high-sensitivity, high-specificity matching. Once matched, patients receive a report of clinical trial options – including those convenient to the patient’s preferred home or travel locations - that they can discuss with their oncologist or seek out through a second opinion. This process democratizes clinical trial participation, which may be otherwise bottlenecked at the provider level. Certain types of patients get offered or invited into trials by their providers, and that selection process can be subject to biases and skewed by what type of patients tend to receive care from physicians who are involved in research. With Ciitizen, any patient who signs up for the CT matching service can find out about trials that might be
right for them, they don’t need to wait for their doctor to approach them, so it’s a way to take charge of your treatment options while also being part of important research.
Do you have any personal experience with breast cancer?
RF: I am a Stage 3A Triple Negative Breast Cancer Survivor/Thriver. Before breast cancer, I was a typical “supermom” who took care of everyone but myself – I was the breadwinner for my family as well as the rainmaker for my advertising agency in Atlanta. Although I was always vigilant about my annual checkups, the summer I was diagnosed I was so busy with the hustle and bustle of work and family that I postponed the appointment and went later with my daughter. After finding a small lump in my breast and sending a sample of that tissue in for a biopsy, my doctor called to tell me the news just as I was leaving for a two-week business trip to the west coast.
As I researched the prognosis of my Stage 3A Triple Negative Breast Cancer diagnosis, suddenly my hectic life came to a screeching halt. I had a double mastectomy by choice, did six rounds of chemo and six weeks of radiation. Almost exactly a year after my diagnosis, my doctor discovered a recurrence and told me I likely had 2 years to live. I did another course of chemo with drugs that were experimental for TNBC at the time. Miraculously, when I went into implant surgery, the cancer was gone – God intervened, and I’m still here today, recently celebrating ten years cancer free.
My breast cancer diagnosis changed my entire life. I quit my corporate job, downsized and started my own company all between my second and third rounds of chemo. I realized I was given a second chance at life and finally began prioritizing myself. I had to learn that my peace is non-negotiable and get all of the cancers out of my life, not just the cancer in my body. Since then, I’ve founded TOUCH, the Black Breast Cancer Alliance and dedicated my life to advocacy and attacking Black Breast Cancer, which is its own unique disease.
Clinical Trials: Everything you Need to Know
Anything else you'd like to add?
VS: With a 42% higher mortality rate for Black breast cancer patients than white breast cancer patients, the racial disparities in research and care are no mere coincidence. The medical field severely lacks adequate data to address these disparities. To conduct the necessary research to acquire this data, we must continue to foster trust between Black women and clinical researchers. There is no better time to illuminate the racial disparities in breast cancer treatment and research.
RF: Now is the time to change the narrative surrounding racial disparities in breast cancer treatment and research. My hope is that through this work, Black women are empowered to advocate for their treatment and begin to make their health a kitchen table conversation. We need to teach the healthcare industry how to reach and touch Black women specifically with their messaging so that we can gather the data necessary to eradicate this deadly disease.
For more information, visit ciitizen.com/TouchClinicalTrials
