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. 2021 Apr 7;16(4):660-668.
doi: 10.2215/CJN.10270620. Epub 2020 Nov 30.

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

Katherine R Tuttle  1 , Richard Knight  2   3 , Paul S Appelbaum  4 , Tanima Arora  5 , Shweta Bansal  6 , Jack Bebiak  7 , Keith Brown  8 , Catherine Campbell  9 , Leslie Cooperman  7 , Celia P Corona-Villalobos  8 , Ashveena Dighe  1 , Ian H de Boer  1 , Daniel E Hall  9 , Nichole Jefferson  9 , Stacey Jolly  10 , Asra Kermani  11 , Simon C Lee  12 , Karla Mehl  13 , Raghavan Murugan  14 , Glenda V Roberts  1   15 , Sylvia E Rosas  16 , Jonathan Himmelfarb  1 , R Tyler Miller  17   18 ; Kidney Precision Medicine Project
Collaborators, Affiliations

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

Katherine R Tuttle et al. Clin J Am Soc Nephrol. .

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.

Keywords: Precision Medicine; acute kidney injury; chronic kidney disease; diabetic nephropathy; hypertensive nephropathy; kidney; kidney biopsy; kidney disease; renal biopsy.

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Figures

Figure 1.
Figure 1.
Patient representation on Kidney Precision Medicine Project (KPMP) committees. CEC, Community Engagement Committee; NIDDK, National Institute of Diabetes and Digestive and Kidney Diseases; PI, principal investigators.
Figure 2.
Figure 2.
Stakeholder influence by degree of involvement in research. Reprinted from ref. , with permission.
Figure 3.
Figure 3.
Integration of patients, clinicians, and scientists across Kidney Precision Medicine Project activities through the Commmunity Engagement Committee.
See this image and copyright information in PMC

References

    1. Ciemins EL, Mollis BL, Brant JM, Hassell LA, Albritton S, Amoroso P, Lloyd A, Smith JM, Pflugeisen BM, Tuttle KR, Baldwin LM: Clinician engagement in research as a path toward the learning health system: A regional survey across the northwestern United States. Health Serv Manage Res 33: 33–42, 2020 - PMC - PubMed
    1. Ramanadhan S, Davis MM, Armstrong R, Baquero B, Ko LK, Leng JC, Salloum RG, Vaughn NA, Brownson RC: Participatory implementation science to increase the impact of evidence-based cancer prevention and control. Cancer Causes Control 29: 363–369, 2018 - PMC - PubMed
    1. Webster AC, Nagler EV, Morton RL, Masson P: Chronic kidney disease. Lancet 389: 1238–1252, 2017 - PubMed
    1. Moledina DG, Parikh CR: Phenotyping of acute kidney injury: Beyond serum creatinine. Semin Nephrol 38: 3–11, 2018 - PMC - PubMed
    1. de Boer IH, Alpers CE, El-Achkar TM, Azeloglu E, Balis UGJ, Barasch JM, Barisoni L, Blank K, Bomback AS, Brown K, Dagher PC, Dighe AL, Eadon MT, Gaut JP, Hacohen N, He Y, Hodgin JB, Jain S, Kellum JA, Kiryluk K, Knight R, Laszik ZG, Lienczewski C, Mariani LH, Mcclelland RL, Menez S, Moledina D, Mooney SD, O'Toole J, Palevsky PM, Parikh CR, Poggio E, Rosas S, Rosengart MR, Sarwal M, Schaub JA, Sedor JR, Sharma K, Steck B, Toto R, Troyanskaya O, Tuttle K, Vazquez M, Waikar SS, Williams K, Wilson FP, Zhang K, Iyengar SR, Kretzler M, and Himmelfarb J, for the Kidney Precision Medicine Project : Rationale and design of the Kidney Precision Medicine Project. Kidney Int 99: 498–510, 2021 - PMC - PubMed

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