The Patient-Centered Outcomes Research (PCORI)
The PCORI is a nonprofit whose primary main mission is to help support research that will allow patients to make informed healthcare decisions. What makes them so unique is that they put an explicit focus on patients as partners in this research, and not just as the research subject.
Chronic kidney disease (CKD) is one of the many conditions which has a need for greater research in this area. So far, PCORI has funded 18 studies specifically focused on kidney disease research.
The National Kidney Foundation (NKF)
The NKF’s mission is to raise awareness of kidney disease. They accomplish this through educational programs, participation in research, and advocacy initiatives. They share the PCORI’s values in patient centricity, saying their primary aim is to answer the questions patients care most about.
Their collaborative efforts with PCORI have helped to accelerate this mission.
Noteworthy NKF and PCORI Accomplishments
In April of 2017 the NFK held the first Patient-Centered Outcomes Research Stakeholders’ Conference specifically focused on kidney disease. Even the planning of the conference heavily involved patients in order to ensure its mission was met. 100 people were present in total, representing 17 states. Throughout the conference, patients led the discussions, researchers asked follow-up questions, and then together the participants came up with a list of key research priorities. They also created a list of the main barriers to patient-centered research and solutions to fix the problem.
The Patient-Centered Outcomes Research Grant was created in 2018 by the NFK to help drive the priorities established in the aforementioned conference. It provided 40,000 to John Hopkins’ Daphne Knicely to fund a study focused on health literacy of kidney disease patients.
The Home Dialysis Controversies Conference project, funded by the PCORI and implemented by the NKF, works to measure the quality of home dialysis and create recommendations to improve care.
The NKF has also contributed to many of the PCORI-funded studies including an investigation of racial disparities within live donor kidney transplantation.
A Hopeful Future
Through the above projects and future initiatives, PCORI and the NKF are working to improve outcomes for chronic kidney disease patients. Ultimately, it’s about advancing research which centers on the patients themselves and what they value in their care.
You can read more about these organizations and their work in patient-centered research for CKD here.