Title

Patient and other stakeholder engagement in patient-centered outcomes research institute funded studies of patients with kidney diseases

Authors

Daniel Cukor, SUNY Downstate Health Sciences University
Lewis M. Cohen, Tufts University School of Medicine
Elizabeth L. Cope, Arbor Research Collaborative for Health
Nasrollah Ghahramani, Penn State College of Medicine
S. Susan Hedayati, The University of Texas at Dallas
Denise M. Hynes, University of Illinois College of Medicine
Vallabh O. Shah, UNM School of Medicine
Francesca Tentori, Vanderbilt University
Mark Unruh, The University of New Mexico
Jeanette Bobelu, UNM School of Medicine
Scott Cohen, The George Washington University
Laura M. Dember, University of Pennsylvania
Thomas Faber, Zuni Comprehensive Community Health Center
Michael J. Fischer, University of Illinois at Chicago
Rani Gallardo, University of Illinois at Chicago
Michael J. Germain, Tufts University School of Medicine
Donica Ghahate, The University of New Mexico
Nancy Grote, University of Washington, Seattle
Lori Hartwell, Renal Support Network
Patrick Heagerty, University of Washington, Seattle
Paul L. Kimmel, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Nancy Kutner, Emory University
Susan Lawson, Massachusetts Patient Advisory Council
Lisa Marr, The University of New Mexico
Robert G. Nelson, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Anna C. Porter, University of Illinois at Chicago
Phillip Sandy, UNM School of Medicine
Bruce B. Struminger, The University of New Mexico
Lalita Subramanian, Arbor Research Collaborative for Health
Steve Weisbord, University of Pittsburgh School of Medicine
Bessie Young, University of Washington, Seattle
Rajnish Mehrotra, Harborview Medical Center

Document Type

Journal Article

Publication Date

1-1-2016

Journal

Clinical Journal of the American Society of Nephrology

Volume

11

Issue

9

DOI

10.2215/CJN.09780915

Keywords

Chronic kidney disease; Clinical nephrology; Community-Based Participatory Research; Depression; Diabetic nephropathy; Dialysis; End-stage renal disease; Humans; Kidney disease; Nephrotic syndrome; Patient Outcome Assessment; Randomized controlled trials

Abstract

© 2016 by the American Society of Nephrology. Including target populations in the design and implementation of research trials has been one response to the growing health disparities endemic to our health care system, as well as an aid to study generalizability. One type of community-based participatory research is “Patient Centered-Research”, in which patient perspectives on the germane research questions and methodologies are incorporated into the study. The Patient-Centered Outcomes Research Institute (PCORI) has mandated that meaningful patient and stakeholder engagement be incorporated into all applications. As of March 2015, PCORI funded seven clinically-focused studies of patients with kidney disease. The goal of this paper is to synthesize the experiences of these studies to gain an understanding of how meaningful patient and stakeholder engagement can occur in clinical research of kidney diseases, and what the key barriers are to its implementation. Our collective experience suggests that successful implementation of a patient- and stakeholder-engaged research paradigm involves: (1) defining the roles and process for the incorporation of input; (2) identifying the particular patients and other stakeholders; (3) engaging patients and other stakeholders so they appreciate the value of their own participation and have personal investment in the research process; and (4) overcoming barriers and challenges that arise and threaten the productivity of the collaboration. It is our hope that the experiences of these studies will further interest and capacity for incorporating patient and stakeholder perspectives in research of kidney diseases.

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