'It's like you don't have a roadmap really': using an antiracism framework to analyze patients' encounters in the cancer system

Abstract

Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions.Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences.Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.

Keywords: Cancer health disparities; community-based participatory research; racial equity; systems-level interventions.

Figure 1.

Cancer Journey Diagram^{a a}The cancer journey diagram, developed by GHDC and Sisters Network Greensboro NC, a local affiliate of a national African American breast cancer survivorship organization, was a focal point for analysis of power and authority discussions and data analysis. It depicts a patient’s journey through cancer care, beginning in the community, from diagnosis through therapy and return to the community following treatment.