Courtney Berrios, MSc, ScM, CGC, Genomic Medicine Center, was recently awarded a 2-year, $244,750 Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI).
Courtney’s project “Engaging Stakeholders to Identify Shared Research Priorities for Rare Diseases in Children” will engage a heterogenous group of patients and parents of children with rare diseases and clinicians and researchers invested in rare disease health care and research. The goal is to identify shared priorities for and barriers to patient-centered outcomes research (PCOR) and develop a research agenda of shared PCOR priorities in rare disease.
“By including patients and parents of children with rare diseases as key drivers in setting our research agenda, this project will help to ensure that our research on rare diseases addresses the topics of highest priority to the patients and families living with a rare disease,” Courtney said.
PCORI believes that engagement of nontraditional stakeholders—from topic selection through design and conduct of research to dissemination of results—can influence research to be more patient-centered, useful, and trustworthy, and ultimately lead to greater use of research results by patients and the broader health care community. The Eugene Washington PCORI Engagement Awards program, named in honor of the first chair of PCORI’s Board of Governors, is intended to bring more patients, caregivers, clinicians, and other health care stakeholders into the research process. The goal is to support projects that will build a community better able to participate in patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) and serve as channels to disseminate study results.