‘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.

Examining ACCURE’s Nurse Navigation Through an Antiracist Lens: Transparency and Accountability in Cancer Care

“…Another strength is the novel application of the antiracism principles of transparency and accountability to a qualitative analysis of navigator support. This analysis draws from GHDC’s previous work identifying transparency and accountability as key mechanisms to disrupt institutional racism (Black et al, 2021; Eng et al, 2017). However, we recognize that the focus on these two principles may have constrained the analytic approach.…”

“…To develop the ACCURE intervention to test these strategies, we expanded GHDC to engage cancer center partners in addition to community and academic researchers (Eng et al, 2017). As part of our formative research in ACCURE, we conducted focus groups with cancer survivors, in Undoing Racism terms "an analysis of power and authority," to identify "pressure point encounters" in patients' cancer treatment where they felt discouraged or encouraged to continue their care and identifyfrom their perspective-ways to increase transparency and accountability in the cancer care system (Black et al, 2021;Eng et al, 2017). This prior formative work following the Undoing Racism principle of analyzing power led GHDC to focus on transparency as a key principle in its approach to racial equity interventions.…”

A Black autoethnography of grief and racial trauma during the COVID‐19 pandemic

“…Research reveals challenges in medical care related to lack of transparency and communication, such that improvements in communication, particularly two‐way communication, could greatly improve patients’ interaction with the healthcare system (White et al., 2021). Patient insights suggest a need for patient‐centered, systems‐level interventions to improve care experiences and reduce disparities (Black et al., 2021). Lack of communication to Black patients who already experience racism may influence deeper distrust of the medical industry, and these inequities could result in trauma.…”

Developing an Antiracist Lens: Using Photography to Facilitate Public Health Critical Race Praxis in a Foundational MPH Course

“…The other TA is a Black female, one of few in our department, a model and inspiration for students of color in our class. All three of us are transparent and forthcoming about how our own racial identities inform our understanding of our positions in our society’s (and university’s) race relations (Bailey et al, 2017) and drive our efforts to address the impacts of racism in our teaching, research, and practice (Black et al, 2021; Efird & Lightfoot, 2020; Redding et al, 2021).…”