Abstract
Plain English summaryWe 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.BackgroundThis 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.MethodsThis 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.ResultsPatients 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.ConclusionsThe 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 registrationNCT02722382.
Highlights
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
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
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
Summary
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. In the United States (U.S.), the inclusion of patients and family members as partners in the development and implementation of research studies has been significantly growing with the creation of the Patient-Centered Outcomes Research Institute (PCORI) in 2010. PCORI prioritizes research that examines topics and outcomes most important to patients and their family members and engages patients and family members as active collaborators on research teams [1]. This approach has the potential to increase the likelihood that health research is valued and useful to the people with the highest potential to be impacted by the study results and most impacted by the disease studied- patients and family members [2, 3]. The U.S Centers for Medicare and Medicaid Services (CMS) prioritizes patient and family engagement in its policies and programs [13]
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