Individuals with kidney failure on dialysis have health outcomes and quality of life on par with cancer patients. Research that addresses their health concerns rarely includes patient and care team voices. Patient-centered outcomes research (PCOR), focusing on issues such as symptom management and quality of life for these patients, has been limited. Patients and health care workers at dialysis facilities are not always ready to effectively participate in research studies. This project seeks to address the issue by engaging with health care workers and patients at dialysis centers and to equip these individuals with the tools they need.
The research team will conduct focus groups with patients, their families and care partners, clinicians, dialysis nurses and care technicians, social workers and dietitians, and facility administrators. The team will then develop a PCOR training toolkit for use by local dialysis facilities and create communication plans for each facility. Researchers will conduct a national stakeholder meeting to create a dissemination plan for the developed toolkit and a national vision for developing improved local dialysis facility PCOR infrastructure.
The researchers hope that these efforts “will impart knowledge, engender research interest, and create facility research readiness, ultimately facilitating successful implementation of patient-centered outcome research (PCOR) among individuals on dialysis…paving the way for future therapeutic advances that will improve the lives of this vulnerable population.”
The research team and its stakeholder advisory panel are a diverse group of researchers, patients, family members, clinicians, local dialysis facility personnel, corporate dialysis organization personnel from a range of dialysis providers, and End-Stage Renal Disease Network representatives. These key stakeholders will closely guide development, execution, and dissemination planning of the proposed project.
The Investigative Team members are:
- Jenny Flythe, MD, MPH, Assistant Professor of Medicine
- Celeste Lee, Chapel Hill patient
- Laura Dember, MD, Professor of Medicine and Epidemiology at the Perelman School of Medicine at the University of Pennsylvania
- Jonathan Oberlander, PhD, Family member stakeholder; Professor and Chair of Social Medicine and Professor of Health Policy and Management, UNC
- Antoinette Ordish, Dialysis facility stakeholder; Regional Manager, Fresenius Medical Care-North America (FMC-NA)
- Caroline Wilkie, Patient stakeholder in Charlotte, NC
Several organizations will partner with the team to support this project, including the Renal Research Institute, DaVita Clinical Research, Satellite Healthcare, and Quintiles Global Clinical Research Organization. Methodology support will be provided by Timothy Carey, MD, MPH, who is Director of the Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill.