The National Kidney Foundation announced today that it will be organizing the first-ever Patient Centered Outcomes Research Stakeholders’ Conference. This conference will bring together 100 patients, caregivers, stakeholders and academics to identify patient-centered research priorities—and challenges—for kidney disease. It will allow patients with chronic kidney disease, for the first time, to be at the forefront of deciding national research priorities. The conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando during April 2017.
The Stakeholders’ Conference will be facilitated by both a patient and researcher and will feature patient, caregiver and researcher panel discussions and break-out group sessions. Attendees will gain insight into the experiences of patients, caregivers and researchers; learn more about the importance of patient centered outcomes research (PCOR), and identify best practice strategies for actively engaging patients in kidney disease research.
“The Stakeholders’ Conference will help address the gap in kidney disease research,” said Kathryn Pucci, vice president of education for the National Kidney Foundation (NKF). “Our goal at NKF is to transform the process in which the healthcare community views patients from passive, to active and engaged partners in the healthcare decision making process, and centers them as key collaborators in research and in policies which directly impact them.”
As part of NKF’s commitment, NKF has also committed to provide a minimum of $40,000 towards funding a 2018 Kidney Disease Patient Centered Research Grant. The grant will focus on the top kidney disease priorities identified by patients at the Conference.
The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award. If you have questions, or are interested in participating in the Conference, please visit www.kidney.org/pcori.