To maximize participation, we held the stakeholders’ conference—which included 100 participants from 17 states—in conjunction with our Spring Clinical Meetings, NKF’s premier conference for kidney health professionals. In a striking change from most research discussions, patients really drove the conversation. Researchers sat back, listened, and asked follow-up questions. Patients shared their perspectives and helped shape research questions. The group came to a consensus on top kidney disease research priorities, the main barriers to completing kidney disease patient-centered outcome research, and the best solutions to remove those barriers. More details are in the conference summary.
“This is the beginning, turning discussions into action to change the landscape,” Forfang says.
More NKF Initiatives to Promote Kidney-Related PCOR
Since the conference, NKF has already applied many learnings and insights to engaging patients in all aspects of research. For example, NKF is providing at least $40,000 to fund a Patient-Centered Outcomes Research Grant. The grant, which we’ll announce in June 2018, will focus on top kidney disease priorities identified by the patients attending the conference.
Because NKF is a voice for patients and professionals, a source for education, and a connection for all stakeholder groups, it made sense for us—and our members—to form partnerships with PCORI.
Another PCORI-funded NKF project already is under way. The Home Dialysis Controversies Conference Series is bringing together patients, caregivers, clinicians, researchers, and others in the healthcare industry to produce proposals to develop interventions to address the barriers to maintaining dialysis treatment at home. It will also explore ways to measure home dialysis quality. The project aims to establish an initiative to improve home dialysis quality and to connect patients to home-dialysis research projects.
We are also contributing to PCORI-funded research on other kidney-related topics, including shared decision making between patients with advanced kidney disease and their doctors, and a project to reduce disparities in kidney care for underserved minority populations.
At NKF, we serve not only to improve the lives of the millions of Americans with kidney disease, but also to reduce the burden on future patients. Partnering in patient-centered research is a key prong in our strategy as we move forward.
The views expressed here are those of the author and not necessarily those of PCORI.