The National Kidney Foundation will hold a Patient Centered Outcomes Research Stakeholders’ Conference in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando in April, 2017. The conference will bring together 100 patients, caregivers, stakeholders and academics to identify patient-centered research priorities—and challenges—for kidney disease.
“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 health care 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.”
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 NKF said it would 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.
“Over the last five years research with patients and caregivers as active members of the research team has become increasingly important,” said Teri Browne, PhD, associate professor at University of South Carolina College of Social Work, who will serve as project lead for the Stakeholders’ Conference. “But unfortunately, there’s been limited growth of such methodology in kidney disease research and very few studies that actively engage patients in the development and execution of kidney disease research.”
If you have questions, or are interested in participating in the Conference, visit www.kidney.org/pcori.