Engaging patients and family members to design and implement patient-centered kidney disease research

被引：18
作者：
Browne T. [1 ]
Swoboda A. [2 ]
Ephraim P.L. [3 ,4 ]
Lang-Lindsey K. [5 ,6 ]
Green J.A. [7 ,8 ]
Hill-Briggs F. [9 ]
Jackson G.L. [10 ]
Ruff S. [11 ]
Schmidt L. [12 ]
Woods P. [13 ]
Danielson P. [14 ]
Bolden S. [15 ]
Bankes B. [16 ]
Hauer C. [17 ]
Strigo T. [10 ]
Boulware L.E. [10 ]
机构：
[1] College of Social Work, University of South Carolina, Columbia, SC
[2] Family member co-author, Edgewater, MD
[3] Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
[4] Welch Center for Prevention, Epidemiology and Clinical Research, Baltimore, MD
[5] Present address: Alabama Agriculture & Mechanical University, Huntsville, AL
[6] Department of Social Work, Alabama A & M University, Huntsville, AL
[7] Department of Nephrology, Geisinger Commonwealth School of Medicine, Danville, PA
[8] Kidney Health Research Institute, Geisinger, Danville, PA
[9] Division of General Internal Medicine, Johns Hopkins University, Baltimore, MD
[10] Division of General Internal Medicine, Duke University School of Medicine, 200 Morris Street, 3rd floor, Durham, 27701, NC
[11] Family member co-author, Mooresville, NC
[12] Patient co-author, Liberty, IL
[13] Patient co-author, Hartsdale, NY
[14] Patient co-author, Portland, OR
[15] Patient co-author, Jacksonsville, FL
[16] Patient co-author, Bloomsburg, PA
[17] Center for Clinical Innovation, Institute for Advanced Application, Geisinger, Danville, PA
来源：
Research Involvement and Engagement | / 6卷 / 1期
关键词：
Care transitions; Family member research partners; Kidney disease; Outcomes; Patient and public involvement; Patient centered; Patient research partners; PCORI; Shared decision-making;
D O I：
10.1186/s40900-020-00237-y
中图分类号：
学科分类号：
摘要：
Plain English summary: We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in research teams. Models for this patient and family member engagement as research partners can help increase patient centered outcomes research. In this article, we describe how we have successfully engaged patients with kidney disease and family members as Co-Investigators on a 5-year research project testing a health system intervention to improve kidney disease care. Abstract: Background This article describes a method for successful engagement of patients and family members in all stages of a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease. Methods This project utilized the Patient-Centered Outcomes Research Institute’s conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine patient and family member Co-Investigators’ priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper. Results Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators. Trial registration NCT02722382. © 2020, The Author(s).
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