A Crucial Conversation-starter: CSC’s New Docuseries Explores Justified Medical Mistrust
CSC has launched a 6-part, short documentary film series that addresses justified medical mistrust in the Black and African American communities, with a focus on participation in cancer clinical trials.
“We are ever-hopeful that this docuseries will serve as a conversation-starter.”
― Audrey Davis, Senior Director, Health Equity, Cancer Support Community
Racial disparities in health and healthcare have been longstanding in the United States. These disparities extend to cancer clinical trials, where participants continue to be disproportionately White. Justified medical mistrust helps explain, in part, underrepresentation in clinical trials from communities of color ― communities that have historically experienced mistreatment in healthcare and clinical research.
As part of our ongoing efforts to eliminate health disparities and inequities, CSC is producing a 6-part short documentary film series titled “Justified Medical Mistrust: Acknowledging the Past to Change the Future.”
The first film in the series “How Does a Clinical Trial Benefit ME?” is now streaming. The second video, “Righting the Wrongs: What is the Medical Community Doing Within Communities of Color to Gain Trust?” is slated for a fall 2023 release.
In the following Q&A, CSC’s Senior Director of Healthy Equity, Audrey Davis, helps unpack key themes in this powerful, must-see docuseries. Audrey sheds light on the origins of justified medical mistrust, why clinical trial diversity matters, and how CSC community members are helping to inform the films.
How has being a Producer of this series been personally meaningful for you?
I remember my dad, who passed away when I was 24 years old. He was diagnosed with Stage 4 colorectal cancer and learned about the benefits of clinical trials from people who looked like him, a Haitian immigrant, and in whom he trusted most: his brothers, who are physicians themselves.
This series gives us an opportunity to address some of the very valid concerns that people like my dad had about clinical trials. I think of my dad often as we plan and develop this work alongside current cancer patients, survivors, and caregivers from communities of color and other medically disenfranchised groups.
Why is recognizing and addressing justified medical mistrust a critical part of the work to eliminate disparities in clinical trials?
Part of the reason that disparities exist in clinical trials today is due to the checkered history of medical research involving Black and brown bodies, and members of our LGBTQIA+ community. If we want to help close the clinical trial participation gap, it is imperative that we not only acknowledge this history of medical injustice, but also validate the contemporary experiences of patients and caregivers who have been historically underserved, mistreated, and under-resourced.
If we don’t recognize and address these issues, then why should these patients and caregivers trust us and want to volunteer to be in a clinical trial? Why would I volunteer to be involved with a system who doesn’t validate my experiences and concerns?
Why is clinical trial diversity important, and how can it help advance health equity?
Clinical trial diversity is so important for a variety of reasons. Without diverse clinical trial subjects, we can’t know whether certain races or ethnicities will respond better or worse to certain treatment options. Moreover, increased diversity in clinical trials helps demystify the experience for other communities who may be considering trial participation but are unsure about what it involves (and want to hear from someone who looks like they do).
Diverse clinical trials can also help advance the health status of not only each individual participant but also the community at-large, which has the potential to positively impact people who are more historically and medically underserved and under-resourced.
The healthcare system often blames Black and African American patients for their underrepresentation in cancer clinical trials. In doing so, what is the system failing to recognize?
I’m so glad that you asked this question. When we blame the victim of oppression instead of the oppressive system and institutions involved, we begin to focus on the wrong solutions and unhelpful tactics that never ultimately resolve the root cause of the problem. Healthcare practitioners must recognize the “why” behind underrepresentation in clinical trials to then address “how” we can collaborate with these mistreated communities to improve representation and scientific data collection overall.
"If we want to help close the clinical trial participation gap, it is imperative that we not only acknowledge this history of medical injustice, but also validate the contemporary experiences of patients and caregivers who have been historically underserved, mistreated, and under-resourced."
― Audrey Davis, CSC's Senior Director, Health Equity
Could you briefly discuss the sources of justified medical mistrust?
First, I want to highlight that the term “medical mistrust” is neither new nor without extensive research associated with it. In 2003, the Journal of the National Medical Association published a guest editorial by Dr. Alan Nelson entitled, “Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare.”
In this piece, Dr. Nelson suggested that medical mistrust can be a social determinant of health* in communities of color and other historically disenfranchised communities. Then, in 2013 David R. Williams and Selina A. Mohammed created a “Racism and Health” framework, noting that both historical and current medically unjust experiences contribute to medical mistrust.
Thus, CSC and other entities now recognize that medical mistrust is indeed justified for many reasons. Patients and caregivers from communities of color are skeptical about whether the healthcare system is trustworthy, not only because of the injustices with Henrietta Lacks or the Syphilis Study at Tuskegee, but due to their contemporary experiences in the doctor’s office, emergency room, and even waiting room of many medical facilities. Medical mistrust and caution about the potential for mistreatment by healthcare providers is justified because of our own knowledge and real-time experiences.
*Editor’s Note: Social determinants of health refer to the underlying community-wide social, economic, and physical conditions in which people are born, grow, live, work, and age.
Tell us about the CSC community members whose insights and experiences helped inform the first film in the series, “How Does a Clinical Trial Benefit ME”?
CSC had the pleasure and honor of working with several partners for our first film. We featured input from Lisa Dutton, who is a Black breast cancer survivor, past clinical trial participant, and peer specialist on our Peer Clinical Trials Support Program team. She shared her clinical trial experience and belief that participating in a treatment trial helped to reduce or eliminate all of her cancer cells.
We also featured Dr. Craig Cole, who is a friend of CSC and a member of our Board of Directors. He is a Black hematologist from Michigan State University and is well-known for his patient engagement and teaching. Dr. Cole shares the advantages of clinical trial participation for people from communities of color in particular, such as more frequent contact and collaboration with your treatment team.
Additionally, our Center for Health Equity in Oncology Patient, Survivor, and Caregiver Panel shared extensive feedback via focus groups throughout our film’s editing process. The panel is comprised of patients, survivors, and caregivers from communities of color, and also represents some of the interests of our LGBTQIA+ community.
I’ve been proud to work alongside many other voices who have made valuable contributions behind the scenes, including CSC's Justified Medical Mistrust Advisory Board and our Research team, to make this project a reality.
What are the hopes and goals of this docuseries?
All of us at CSC are ever-hopeful that this docuseries will serve as a conversation-starter: Conversations about clinical trial participation between patients and their healthcare teams, conversations among healthcare professionals that acknowledge the work that must be done by their colleagues and with communities to enhance clinical trial diversity, and conversations between patients, caregivers, and others impacted by cancer.
We want people who view this series, in part or as a whole, to recognize that although our medical mistrust is justified, the story does not end there. We can work together and value the solutions and information that patients from historically disenfranchised communities share. By having difficult conversations with cultural humility and seeking first to understand, we can move forward to address historical and contemporary injustices to ensure that they do not continue to occur.
Editor’s Note: “How Does a Clinical Trial Benefit ME?” was made possible thanks to funding by GSK, Novartis Pharmaceuticals, and Pfizer.
Praise for “How Does a Clinical Trial Benefit ME?” – An Episode in the Justified Medical Mistrust Documentary Series
“Moving and persuasive”
― Barak Goodman, Documentary Filmmaker, Academy Award Nominee
― Megan-Claire “Warrior Megsie” Chase, Patient Advocate, diagnosed with breast cancer
“I love this series”
― Dr. Scout, Executive Director, National LGBT Cancer Network