Project Summary
The National Kidney Foundation (NKF) Patient-Centered Outcomes Research (PCOR) Stakeholders’ Conference will be the first effort to identify patient-led kidney disease national research priorities by bringing together patients, caregivers, stakeholders, and academics. The conference will be facilitated by both a patient and researcher, and will feature patient, caregiver, and researcher panel discussions and breakout group sessions. Attendees will learn more about PCORI and its mission, gain insight into the experiences of patients, caregivers, and researchers about the importance of kidney disease PCOR, and identify patient-centered research priorities, challenges, and facilitators to acting on such priorities, as well as patient-identified best practice strategies for actively engaging patients in kidney disease research. This project will also inform a NKF-funded kidney disease PCOR research initiative, which will fund one or more projects that must focus on one of the top kidney disease PCOR priorities from the conference.
Project Collaborators: National Kidney Foundation; patients with kidney disease and family members of patients with kidney disease; researchers conducting PCOR on kidney disease.
Project Outputs: Survey and conference that will identify patient-led kidney disease national research priorities; establish a list of recommendations on ways that patients, their families, and caregivers can be active participants in kidney disease research processes; and identify a research topic that will be supported by NKF’s 2018 Research Grant Program.