On April 22, 2017 in Orlando Florida, the National Kidney Foundation (NKF) hosted the first effort to identify patient-led kidney disease national research priorities by bringing together over 100 individuals representing kidney patients of all stages, dialysis patients, kidney transplant recipients, living kidney donors and potential living donors, and kidney donor families as well as physicians, social workers, nurses, technicians, pharmacists, dietitians, caregivers, stakeholders, and academics. The Stakeholders’ Conference was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award. The ideas and solutions developed during this conference will help NFK further define its role as an organization in facilitating patient involvement in chronic kidney disease (CKD) research.
The conference truly embodied how patients and researchers can work collaboratively to address questions most important to kidney patients. Over the course of a year, patients and stakeholders have been true partners throughout all phases of this conference project; from planning, shaping the agenda, and leading the conference activities. Patients, caregivers, researchers, and stakeholders shaped the agenda through their responses to a survey assessing their experiences and challenges in patient-centered research. The conference was also facilitated by both a patient from NKF’s Kidney Patient Advocacy Committee (Derek Forfang) and researcher (Teri Browne, PhD, MSW, NSW-C) and featured patient, caregiver, and researcher panel discussions and a breakout working group session.
In the coming months, NKF, using results from the conference, will 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.
See below for pictures and Twitter engagement from the day