National Research Priorities for Kidney Disease Identified by Patients

After a year-long outreach and engagement with patients and caregivers to identify patient-led kidney disease research priorities, today National Kidney Foundation (NKF) announced the summary findings which include the research topics that matter most to patients and family members affected by kidney disease; barriers that prevent patients from being active participants in kidney disease research or part of the research team; and what potential solutions may exist. 
The findings resulted from two pre-conference online surveys and the first-ever Patient-Centered Outcomes Research Stakeholders’ Conference on kidney disease held on April 22, 2017 in Orlando, Florida, which brought together patients, caregivers, stakeholders and academics to identify patient-centered research priorities—and challenges—for kidney disease. 
“The ideas and solutions developed during the Stakeholders’ Conference will help NKF further define its role in leading and facilitating patient involvement with chronic kidney disease research,” said Teri Browne, PhD, associate professor at University of South Carolina College of Social Work and conference co-chair.  “The results of this project shed important light on how patients and researchers can work collaboratively to address questions most important to kidney patients.”         
The top three kidney disease research priorities identified by patients, caregivers, researchers and other stakeholders through conference activities were: 1) how to engage patients with kidney disease in research including different communities/populations of patients; 2) health literacy and communication barriers, patient education best practices (including population/demographic-specific); and 3) patient self-management/patient activation—how do we best educate and partner with patients to understand and self-manage kidney disease.  Patients also expressed interest in research that would explore the biology of kidney disease and preventing and/or delaying disease progression. 
The top three barriers preventing patients from being active participants in kidney disease research or part of the research team were: 1) mistrust of medical research, especially in underserved communities and with vulnerable populations; 2) research is not accessible to patients—distance to meetings, timing of meetings (during business hours), lack of time to participate in research, lack of technology/internet access; 3) patients are overwhelmed—have bigger problems or concerns to deal with other than participating in research such as financial, health, mental health issues and family issues. 
The top three solutions to removing these barriers were: 1) develop diverse research teams and research champions—put primary care physicians, receptionists, patient care technicians and nurses on the teams; train them about research processes as they work with patients the most and can help engage patients in research projects; create patient research champions; and create a culture of research support; 2) partner with community stakeholders (churches, community organizations) on research and have them help with patient recruitment on research teams; teams must be diverse and reflect the community; partnerships need to be long-term; offer research opportunities where patients are (including rural areas); build relationships with communities; and 3) have large groups of patients involved on research teams to accommodate those who may need to take a break from the project. 
“Kidney patients and caregivers can play an important role in research—getting involved in national research studies and becoming part of the research team can help improve kidney disease care for all those affected by the disease,” said Derek Forfang, kidney patient and Stakeholders’ Conference co-chair. 
A fact sheet for researchers provides information on how to involve patients on research teams; and a patient fact sheet helps patients and caregivers learn how to become involved. There are also opportunities facilitated by NKF to connect patients and researchers through NKF’s new clinical trials microsite, The new microsite can help patients find matching clinical trials in their local area within 60 seconds just by answering a series of questions about their condition.  Patients will also find real life stories from clinical trial participants and resources addressing common questions.
The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award. 
Kidney Disease Facts
30 million American adults are estimated to have chronic kidney disease—and most aren’t aware of it.  1 in 3 American adults are at risk for chronic kidney disease.  Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history of kidney failure.  People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease.  African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.  For more information visit
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease.  For more information about NKF visit