Justified Medical Mistrust: Acknowledging the Past to Change the Future explores sources of mistrust in the Black community, present-day benefits of clinical trials and steps for building trust between patients and the healthcare community.

WASHINGTON, D.C. — The Cancer Support Community (CSC,) a nonprofit organization dedicated to uplifting and strengthening all people impacted by cancer by providing support, fostering compassionate communities, and breaking down barriers to care, has launched Justified Medical Mistrust: Acknowledging the Past to Change the Future (Justified Medical Mistrust,) as part of its commitment to efforts advancing health equity. Hailed by Academy Award-nominated and Emmy and Peabody Award-winning documentarian Barak Goodman as “moving and persuasive,” the 6-part short documentary film series explores justified medical mistrust in the Black and African American communities and participation in cancer clinical trials.

Justified Medical Mistrust explores historical and current injustices, and provides education about cancer clinical trials, the personal benefit of participation, effective community-based interventions, and strategies for achieving inclusive, quality cancer care, which includes access to clinical trials.  Viewers hear the perspectives of patients, healthcare professionals, and leaders who are people of color. 

The first documentary in the series, How Does a Clinical Trial Benefit ME?, is now available to stream.  It highlights historical human rights violations and features a compelling discussion about the ways clinical trial participation can benefit both the patient and the community. The film features experiences and insights from two patients, Lisa Dutton and Dr. Alexea Gaffney, and oncology professionals Dr. Craig Cole (hematologist and Director of Clinical Research in Hematology/Oncology and Multiple Myeloma at the Michigan State University College of Human Medicine at Breslin Cancer Center) and Dr. Monique Gary (breast surgical oncologist and medical director of the Grand View Health/Penn Cancer Network cancer program.)

How Does a Clinical Trial Benefit ME? was made possible thanks to funding by GSK, Novartis Pharmaceuticals, and Pfizer. 

Racial disparities in health and health care have been longstanding and persistent in the United States.4 Cancer disparities occur because of a host of factors including systemic racism; lack of trust in the healthcare system. The inability to eliminate cancer disparities has also been attributed, in part, to the underrepresentation of people of color in clinical research.

Through its research, CSC has made large strides in understanding participation in clinical trials for all patients and cancer types. After controlling for income, a quantitative survey study of over 3,000 cancer patients and survivors indicated that, compared to White participants, participants of other races and ethnicities reported lower knowledge of clinical trials, greater mistrust of medical institutions, and perceived lower understanding of clinical trials.6  “These findings provide a critical foundation for understanding the unique concerns among cancer survivors in communities of color and how these barriers can be overcome with innovative new approaches that increase trust and knowledge related to cancer clinical trial participation,” said Debbie Weir, CEO.   

Numerous programs have been developed to increase participation in clinical trials among communities of color, yet no significant increase in enrollment has been widely achieved. “We believe this has occurred because efforts do not adequately recognize and address the legacy of medical mistreatment and present-day experiences of bias and discrimination in healthcare,” said Audrey Davis, Director, Health Equity. “In addition, the healthcare system frequently blames Black and African American patients for their own underrepresentation in cancer clinical trials, instead of recognizing that these patients might actually be willing to participate if they were offered, had enough information to make an informed decision, and were respected with cultural humility by their healthcare teams. These concerns must be addressed and concrete efforts toward gaining and retaining trust made in order to see an increase in clinical trial participation and health equity advancement overall.”

The second video in the series, Righting the Wrongs: What is the Medical Community Doing Within Communities of Color to Gain Trust?, is currently in preproduction. It’s slated for a fall 2023 release.

Justified Medical Mistrust is just one project CSC is undertaking that provides education and trusted information to help Black and African American cancer patients decide if participating in a clinical trial is right for them.  Another is the Peer Clinical Trials Support Program, which CSC launched last year. The program pairs Black and African American cancer patients with Peer Specialists, specially trained Black or African American cancer patients or survivors who have participated in a clinical trial.

Stream How Does a Clinical Trial Benefit ME?  

For more information about CSC’s health equity initiatives, including the Justified Medical Mistrust short documentary series and the Peer Clinical Trials Support Program, go to their Health Equity in Action page.

About the Cancer Support Community

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club network partners, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization’s Institute for Excellence in Psychosocial Care includes an international network that offers the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation. For more information, please call the toll-free Cancer Support Helpline at CSC-867-5309 or visit www.CancerSupportCommunity.org.