Integrating Patient Priorities with Science by Community Engagement in the Kidney Precision Medicine Project.

Tuttle KR, Knight R, Appelbaum PS, Arora T, Bansal S, Bebiak J, Brown K, Campbell C, Cooperman L, Corona-Villalobos CP, Dighe A, de Boer IH, Hall DE, Jefferson N, Jolly S, Kermani A, Lee SC, Mehl K, Murugan R, Roberts GV, Rosas SE, Himmelfarb J, Miller RT, Kidney Precision Medicine Project. Integrating Patient Priorities with Science by Community Engagement in the Kidney Precision Medicine Project. Clinical journal of the American Society of Nephrology : CJASN. 2021 Apr 7; 16(4):660-668.

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Abstract:

The Kidney Precision Medicine Project (KPMP) is a multisite study designed to improve understanding of CKD attributed to diabetes or hypertension and AKI by performing protocol-driven kidney biopsies. Study participants and their kidney tissue samples undergo state-of-the-art deep phenotyping using advanced molecular, imaging, and data analytical methods. Few patients participate in research design or concepts for discovery science. A major goal of the KPMP is to include patients as equal partners to inform the research for clinically relevant benefit. The purpose of this report is to describe patient and community engagement and the value they bring to the KPMP. Patients with CKD and AKI and clinicians from the study sites are members of the Community Engagement Committee, with representation on other KPMP committees. They participate in KPMP deliberations to address scientific, clinical, logistic, analytic, ethical, and community engagement issues. The Community Engagement Committee guides KPMP research priorities from perspectives of patients and clinicians. Patients led development of essential study components, including the informed consent process, no-fault harm insurance coverage, the ethics statement, return of results plan, a "Patient Primer" for scientists and the public, and Community Advisory Boards. As members across other KPMP committees, the Community Engagement Committee assures that the science is developed and conducted in a manner relevant to study participants and the clinical community. Patients have guided the KPMP to produce research aligned with their priorities. The Community Engagement Committee partnership has set new benchmarks for patient leadership in precision medicine research.