Introduction:

The Bladder Cancer Advocacy Network (BCAN) established its Patient Survey Network as a novel patient engagement tool to promote collaboration among researchers and patients to set research priorities within the field. However, they struggled to engage Black patients their work. Patient engagement has been shown to lead to better health outcomes, more positive care experiences, and lower health care costs, suggesting that targeted patient engagement with Black patients could be an important strategy for addressing disparities in healthcare. The Patient-Centered Outcomes Research Institute published a framework for engagement outlining seven principles for engagement including trust, honesty, reciprocal relationships, transparency, cultural competency, co-learning, and partnerships, ultimately concluding that rapport is critical for successful patient engagement. The purpose of this study is to promote engagement among Black patients with bladder cancer by learning about their unique perspectives of their care experiences.

Methods:

With this qualitative study, our primary objective was to investigate the perspectives of Black patients with bladder cancer regarding their care experiences. Participants were recruited using purposeful sampling methods in which our research team contacted urologic oncologists across the United States, requesting that they share our study information with Black patients with bladder cancer who may be willing to speak with us. Interested individuals called our team, underwent informed consent, and were then asked to complete a demographic survey. If patients self-identified as Black, they were enrolled in our study and contacted a second time for a semi-structured telephone interview using an interview guide. Interviews were audio recorded and professionally transcribed. Using Nvivo 1.6.1, two researchers performed qualitative thematic analysis, and disagreements were resolved by consensus. Upon completion of the interview, participants were provided a $25 Amazon gift card as compensation for their time.

Results:

Seven participants completed patient interviews, diverse in age, education level, income level, and geographic region (Figure 1).  Thematic analysis revealed that early interactions between patients and their physicians established rapport. Perceived negative interactions led patients to question if they had been treated differently because of their race, which prompted second opinions, anger, declining to establish new partnerships, and self-education. In processing their experience, patients referenced the negative care experiences of friends and family, also questioning if race had led to a negative outcome in those instances. Patients described being highly motivated to avoid similar outcomes and urgently needing to partner with a physician who could help them do so. Even after negative interactions, patients established positive rapport with new providers who listened well, provided reassurance for their specific concerns, and explained things in understandable terms (Figure 2), and they successfully engaged in their care and research through our study.

Conclusion:

Our study explores the care experiences of a diverse group of Black patients with bladder cancer. Our participants worked to balance the burden of detecting and combating racism during their care experience while also attempting to partner with their providers to achieve a good health outcome. Poor rapport with providers prompted them to become vigilant in their care experiences and highly motivated to prevent their race from leading to a negative health outcome. Their vigilance can be misconstrued as mistrust and a barrier to engagement. However, participants remained motivated and open to engagement with physicians who could build positive rapport with them, particularly those who successfully implemented PCORI engagement principles of transparency, reciprocal relationships, co-learning, and partnership. Our findings suggest that Black patients with bladder cancer navigate distinct challenges that inform unique priorities for their care experiences, and understanding these priorities promotes their successful engagement in care and research.

Funding: N/A