Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

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

Grounding co‐writing: An analysis of the theoretical basis of a new approach in mental health care

“…Within this framework, there is also the so‐called conceptual model of the Patient‐Centered Outcomes Research Institute (PCORI), which defines the collaboration process between users and medical staff as based on seven principles: trust, honesty, co‐learning, transparency, mutual relations, partnership and respect. The intent is to work with patients and their family members as co‐investigators for an extended period, allowing everyone to get to know each other and develop an informed awareness of the care process (Browne et al, 2020).…”