By Jennifer Jang, MHS, ASTRO Communications
Yesterday, Carmen Guerra, MD, MSCE, presented an engaging keynote: “Overcoming Structural Barriers to Diverse Representation and Clinical Trials.” Kelly Malloy, MD, of University of Michigan, introduced Dr. Guerra, sharing that Dr. Guerra’s perspective is borne of many critical roles, including as the Ruth C. and Raymond G. Perelman Professor of Medicine at the University of Pennsylvania. She is also a practicing internist and the Associate Director of Diversity and Outreach for the Abramson Cancer Center, where she helps to design and implement interventions to increase the participation of underrepresented populations.
In her address, Dr. Guerra identified and unpacked the structural barriers that prevent enrollment of diverse populations in cancer clinical trials and described strategies to mitigate those barriers.
Even though clinical trials are important for testing new treatments to reduce cancer morbidity and mortality, barriers generate suboptimal participation across racial and ethnic minority groups. The underrepresentation limits opportunities to access new therapies, threatens efficiency of research, and limits the generalizability of the results.
“Research shows that in head and neck cancer trials, we are not optimally collecting or reporting data on race and ethnicity. We cannot change what we cannot measure. Therefore, if we are going to increase diversity in trials, we want to begin with consistently collecting and reporting race and ethnicity in a standardized way.”
A conceptual model helps to assess barriers to clinical trials, that is, by policy, institution, provider, and patient. Policy barriers include suboptimal race/ethnicity data collection and reporting. Examples of institutional barriers include segregation of cancer care and trial availability, and perceived trustworthiness. The least information is available on provider barriers, and they include incomplete knowledge of trials and unconscious bias. Finally, patient barriers include lack of awareness and issues with health insurance.
Dr. Guerra offered strategies to whittle away at these barriers. To start, she shared the importance of a robust community outreach and engagement (COE) program that is culturally tailored. Partnerships are key. In Philadelphia, a major strategy was to partner with Black churches and other organizations to create cancer and clinical trials educational programs. For Latinx communities, Mexican and Guatemalan consulates became trusted partners.
A common theme emerged from the communities. They’re less interested in clinical trials, and more concerned about early diagnosis. Thus, screening programs were developed to build trust. Also effective, Abramson Cancer Center marketing materials were redesigned to show representative faces and share successful stories. Housing and transportation are also barriers. The American Cancer Society seeks to address this through their Hope Lodge program. The Lazarex Foundation helps with transportation and lodging costs. Dr. Guerra shared that implementing these types of programs from 2014 to 2018 resulted in an increased proportion of Black patients enrolled at Abramson Cancer Center. As one of her partners captured effectively, “Relationships are built at the speed of trust, and so we have to allow for the rebuilding of those critical relationships.”
Regarding provider barriers, unconscious bias manifests itself through poor assumptions, and while its impact cannot be ignored, it is one of the least studied areas. Dr. Guerra shared a study that revealed how biases might look, such as the notion that standard treatments are easier to do with minorities due to language barriers. Countering such bias, a study revealed that when patients across different groups were offered to participate, there was no statistically significant difference by race. Led by Lori Pierce, MD, FASTRO, and Randall Oyer, MD, a committee formed to address these barriers, leading to an Equity, Diversity and Inclusion Research Site Self Assessment, that enables research sites to identify opportunities to improve, and the “Just ASK” program trains providers on overcoming biases.
Dr. Guerra emphasized that often the economic argument speaks the most effectively to institutions otherwise slow to adopt programs. She noted the importance of peer-to-peer education, obtaining funding to launch a program and crafting an argument for implementation.
Dr. Guerra’s presentation also fostered a dynamic Q&A that raised questions on how to address genomic diversity, the importance of the generalizability of studies, and how to address intersections of underrepresentation, such as health needs of women of color.
