Patients As Partners In Research: How NKF and the Patient Centered Outcomes Research Institute (PCORI) are changing the face of kidney disease research 

By Lesa-Kaye Holtham, National Kidney Foundation Grants Director

The Patient-Centered Outcomes Research (PCORI) is a nonprofit organization authorized by Congress in 2010 to fund research that can help patients and those who care for them make better-informed decisions about the healthcare choices they face every day.  PCORI often characterizes work a “research done differently.” This means PCORI emphasizes that research should engage patients as true partners throughout the entire process, from developing the research study to dissemination of the findings. Patient engagement is also embodied throughout PCORI’s practices, from the Institute’s Board of Governors to its funding application review process and the way its funded studies are conducted. PCORI has set the bar, and it’s an appropriately high one, for patient engagement.

Pcori Annual Meeting 2018 - KAC & PCORI staff

Caption: Caption: NKF’s kidney patient advocate Bobbie Reed and Greg Martin, PCORI’s Deputy, Chief Engagement and Dissemination Officer, discuss the need for kidney research that answers important questions for patients, family members and caregivers.

Patient-centered chronic kidney disease research is needed to help patients and healthcare professionals answer many questions they have about the treatment options that best match patients’ individual life goals, preferences and values.

Since 2012, PCORI has funded 18 research studies that will help patients, family members, and health care professionals make better-informed decisions in treating kidney disease and thus improve healthcare delivery and outcomes. PCORI has also funded additional projects where kidney disease is among several important conditions studied, as well as additional projects designed to better engage the kidney disease community in research. The National Kidney Foundation leads the charge in increasing awareness about kidney disease through action, education, and accelerating change. A key piece of that mission is advocating and participating in 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 continued commitment to this critical patient-driven research, including our growing and meaningful relationship PCORI.

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

NKF shares PCORI’s dedication to patient-centered research. 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 disease patient and co-chair 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, in 2018, NKF provided a $40,000 Patient-Centered Outcomes Research Grant, focusing on top kidney disease priorities identified by the patients attending the conference. The 2018 NKF Patient-Centered Outcomes Research Grant was awarded to Daphne Knicely at Johns Hopkins University School of Medicine for a pilot study on patient education interventions to improve health literacy among kidney patients.

Pcori Annual Meeting 2018 - KAC

Caption: NKF’s kidney patient advocates Curtis Warfield, Bobbie Reed and David White at the 2018 PCORI Annual Meeting.

Another PCORI-funded NKF project is The Home Dialysis Controversies Conference Project, which over the course of two years has brought together a multi-stakeholder group of patients, clinicians, caregivers, researchers, health payers, and healthcare industry representatives to facilitate the development of research designs that aim to measure home dialysis quality as well as interventions to address the barriers to maintaining dialysis treatment at home. Watch video highlights from the 2017 Home Dialysis Controversies Conference HERE.

In December 2018, the NKF held this project’s second conference, to present project designs from three multi-stakeholder working groups that were established after the 2017 Home Dialysis Controversies Conference. The working groups presented projects that could overcome barriers to getting, or keeping, patients on home dialysis, including overcoming the barriers to training and support for care partners. The project team and working groups found that creating opportunities for mentorships among patients and caregivers and education of all kidney professionals and patients are key to successful home dialysis. Based on the presentations and feedback from the conference attendees, the NKF will lead a new initiative to raise awareness about home dialysis, find ways to encourage home dialysis as a first choice for treatment for kidney failure and prevent home dialysis patients from quitting treating at home because they are burned out.

We are also contributing to a number of PCORI-funded research studies that will improve the lives of those impacted by kidney disease and those who care for them, including a project to reduce disparities in kidney care for underserved minority populations. That study, Comparing the Effectiveness of House Calls and Peer Mentorship to Reduce Racial Disparities in Live Donor Kidney Transplantation, led by James R. Rodrigue, PhD, at Beth Israel Deaconess Medical Center and the NKF, will compare interventions for helping African American patients increase their chances of a living donor kidney transplant.

The House Calls program, an educational session delivered in the patient’s home, will compare its effectiveness against education traditionally provided in transplant centers in increasing living donor kidney transplants among African Americans living with kidney disease who are eligible for a kidney transplant. The study will also test a combined House Calls and Peer Mentorship approach that matches patients with a someone who received a living kidney donor transplant to provide emotional support and guidance throughout the transplant process. Results from this research will help doctors and clinic administrators determine the best ways to improve African American patients’ chances of getting a living kidney donor transplant.

At the National Kidney Foundation, 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 with PCORI to advance patient-centered research is critical to accomplishing these goals.

See PCORI’s blog and website for more information: https://www.pcori.org/blog/partnering-patient-centered-research-people-kidney-disease

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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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