Putting Patients at the Center of Kidney Disease Research

by Kelli Collins, MSW, Vice President of Patient Engagement, National Kidney Foundation

One in three American adults is at risk for kidney disease. The problem already affects 30 million American adults, 90 percent of whom don’t know they have it. The National Kidney Foundation’s sole focus is to address those daunting statistics.

NKF leads the charge in increasing awareness about kidney disease through action, education, and accelerating change. A key piece of that mission is advocating for research that answers the questions most important to patients with kidney disease and those who care for them. As we mark National Kidney Month, we reflect on our commitment to this critical patient-driven research, including our growing and meaningful relationship with the Patient-Centered Outcomes Research Institute (PCORI).

Doctor explaining urological problems

PCORI, a private, nonprofit organization authorized by Congress to fund research that helps patients and their caregivers make better-informed decisions about the healthcare choices, has funded 17 patient-centered comparative clinical effectiveness research studies about kidney disease to date.

What Is Patient-Centered Kidney Disease Research?

Patient-centered research involves patients as true partners throughout the entire process, from developing the research question to disseminating findings. Several years ago, we conducted a review of existing patient-centered outcomes research focused on kidney disease. We found that unless a project was funded by PCORI, most research didn’t actively engage patients in the process. At the same time, we were building our kidney patient-advocacy committee, which brings together patients, care partners, and family members to develop programs that support our mission. We wanted to find ways to involve them and others impacted by kidney disease in research.

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.

Patient-Centered Outcomes Research Stakeholders’ Conference

Our review of existing patient-centered research culminated in the first Patient-Centered Outcomes Research Stakeholders’ Conference on kidney disease, in April 2017. Patients, caregivers, clinicians, academics, and other stakeholder groups came together to identify kidney disease-related research topics, brainstorm how to alleviate barriers to including patients in research, and make connections to work together on future research projects.

“The conference truly embodied how patients and researchers can work collaboratively to address questions most important to kidney patients. Over the course of a year, patients and stakeholders were true partners throughout all phases of this conference project: working together in the planning of the activities, shaping the agenda, and leading the conference activities, as well as disseminating the findings,” says Derek Forfang, a kidney diseases patient and cochair of the stakeholders’ conference.

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.

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.


PCORI Logo-No Tagline-JPEG mall.jpg

PCORI’s Kidney Disease Focus

PCORI has funded 17 patient-centered comparative clinical effectiveness research studies to help patients and those who care for them make better-informed decisions about treating kidney disease.

Studies include comparing treatment options for kidney failure, testing whether patients with kidney disease should take blood-thinning drugs, and determining whether involving community health workers in underserved populations can improve outcomes, and many others.

For more information, see PCORI’s fact sheet, Research Topic page, and a list of kidney disease projects.

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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