Study Design
Development of a Community-Based Collaborative Study to Understand & Mitigate Manifestations of Structural Racism in Cancer Care Settings Emma Herbach* Emma Herbach Samantha McCoy Gabrielle Harris Isis Nelson Erin Kobetz Antonia Leavitt Brandon Mahal Amanda Rivera
Purpose: To describe the collaborative development of a community-based pilot study to document manifestations of structural racism throughout the cancer continuum and generate actionable patient-driven solutions.
Methods: Co-creation of this initiative began with a community cancer survivor sharing her story during a cancer center outreach event. A partnership flourished during informal interviews, which highlighted the hardships of her cancer journey due to failures in healthcare, and specifically cancer care, settings. Informed by her insights, we developed a protocol to systematically collect data about the cancer care experiences of marginalized survivors.
Results: The resulting pilot study aims to (1) characterize the cancer care journey of breast and gynecologic survivors from populations impacted by structural racism and (2) develop patient-driven recommendations to address multilevel manifestations of structural racism in cancer care settings. This transformative mixed methods study marries the need for in-depth patient narratives and robust quantitative measurements of quality of care with focus groups and surveys.
Two key perspectives from our community partner shaped the focus of and approach to this work: (1) the importance of being heard and (2) taking action to remediate past harms. Being heard and valued is critical to healing from the hardships of navigating cancer care. To ensure the expertise of survivors is incorporated into study procedures, we hired 4 community members as paid members of the research team. By elevating the patient voice to multidisciplinary healthcare stakeholders, their first-hand accounts will be heard by people in positions of power who may rarely hear the realities of navigating cancer as someone in a racialized body. Beyond just talking about hardship, doing something is equally important. Thus, the recommendations generated through this work come directly from survivors, who will collaboratively determine what resources are needed to ameliorate barriers to high-quality cancer care.
Conclusions: This collaborative research initiative to understand how structural racism manifests in cancer care settings is a critical step towards mitigating inequitable care and outcomes among cancer patients.
