Patient-centered research in pediatric transplant: Engaging families and recipients

American Journal of Transplantation. Pediatric liver transplant recipients navigate a lifelong journey that includes constant monitoring and challenges. Research priorities and questions in LT have traditionally been provider-driven. This project was a novel partnership between a learning health system dedicated to pediatric LT (Starzl Network for Excellence in Pediatric Transplantation) and a parent-led advocacy group (Transplant Families) that aimed to prepare families and providers for collaborative patient-centered outcomes research (PCOR). We developed 5 virtual modules to teach participants about PCOR and elicit ideas for PCOR priorities and processes in pediatric LT. Participants included 240 patient partners and 133 pediatric LT providers from 16 centers over 2 years, across 20 focus groups including 5 to amplify underrepresented voices: young adults, Spanish speakers, and African Americans. Feedback was summarized to create a PCOR Roadmap, disseminated back to participants online and via webinars.