Development and Integration of Community Advisory Boards to Inform Research on the Impact of Structural Racism on Racial/Ethnic Disparities in End-Stage Kidney Disease.

INTRODUCTION

Community Advisory Boards (CABs) represent a critical methodological approach to center research on the experiences of patients and families and minimise power inequities between 'researcher' and 'subject'. This approach can be especially important to inform work related to structural racism and racial and ethnic disparities in healthcare. Herein, we report the value and challenges of integrating CABs into ongoing research on structural racism and racial and ethnic disparities in care for adults with end-stage kidney disease as well as strategies to maximise impact.

METHODOLOGY: CABs were assembled to inform a large mixed-methods research project focused on the impact of structural racism on end-stage kidney disease. Qualitative data derived from CAB deliberation were analysed with constructivist grounded theory and used to contextualise research findings and evaluate intervention points.

RESULTS

Two CABs included 21 adults with kidney disease, caregivers and community members in Pittsburgh and Baltimore. CAB member reflections on research presentations were collected, collated and integrated into ongoing research at multiple stages of development. Further, the members were engaged in the iterative development of the CAB structure itself-including format of meetings from semiannual gatherings to more frequent ad hoc combined meetings-based on member feedback.

CONCLUSIONS

Our experience identifies opportunities to facilitate a critical shift in the role of patients and community members as study participants to become collaborators in health research and practice.

PATIENT OR PUBLIC CONTRIBUTION: CAB affiliates, who are members of the end-stage kidney disease community, can provide feedback on analyses, suggest and drive lines of inquiry, and contribute to methodological changes including suggesting more frequent meetings. They are collaborators rather than study subjects.