Individuals with kidney failure who are receiving 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. Historically, dialysis research studies have been limited by poor patient recruitment and protocol adherence. Successful implementation of research depends on local dialysis facilities. Critical stakeholders at local dialysis facilities include patients, families and care partners, and dialysis technicians, nurses, social workers, dietitians, facility administrators, and clinicians. Important barriers to research include: 1) limited research literacy among patients, facility staff, and clinicians; and 2) lack of a “research-ready” local dialysis facility culture to facilitate participation. Capacity building among stakeholders at the local level will impart knowledge, engender research interest, and create facility research readiness, facilitating successful implementation of patient-centered outcome research (PCOR) among individuals on dialysis.
In this project, we will learn about local dialysis stakeholder PCOR training needs and preferred training approaches by conducting separate stakeholder focus groups with patients, care partners, clinicians, dialysis nurses and care technicians, social workers and dietitians, and facility administrators. Secondly, we will use the knowledge gained in focus groups to develop a PCOR training toolkit for local dialysis facilities. The developed material will be pilot-tested at a dialysis facility not involved in material development. Thirdly, we 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 capacity.
Project team members include researchers, patients, family members, and local dialysis facility personnel. The project will be further guided by a stakeholder panel that includes patients, clinicians, local dialysis facility personnel, and corporate dialysis organization personnel from a range of dialysis providers. These key stakeholders will closely guide development, execution, and dissemination planning of the proposed project. The project will be further enriched by our partnering organizations: DaVita Clinical Research, Renal Research Institute, Satellite Healthcare, and Quintiles Global Clinical Research Organization as well as our collaborating PCORI methodology expert.
By completing this project, we will improve the readiness of local dialysis facilities and their stakeholders to participate in PCOR. This work will facilitate more efficient and better PCOR among individuals living on dialysis, paving the way for future therapeutic advances that will improve the lives of this population.