Engaging patients and family members to design and implement patient-centered kidney disease research
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(2020) 6:66
RESEARCH ARTICLE
Open Access
Engaging patients and family members to design and implement patient-centered kidney disease research Teri Browne1, Amy Swoboda2, Patti L. Ephraim3,4, Katina Lang-Lindsey5,6, Jamie A. Green7,8, Felicia Hill-Briggs9, George L. Jackson10, Suzanne Ruff11, Lana Schmidt12, Peter Woods13, Patty Danielson14, Shakur Bolden15, Brian Bankes16, Chelsie Hauer17, Tara Strigo10 and L. Ebony Boulware10*
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. (Continued on next page)
* Correspondence: [email protected] 10 Division of General Internal Medicine, Duke University School of Medicine, 200 Morris Street, 3rd floor, Durham, NC 27701, USA Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use i
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