Share Seamlessly, Steal Shamelessly: Unlocking the Learning Health Network Ethos in Pediatric Liver Transplantation

Background Pediatric liver transplant is a life‐saving procedure, but risks remain for children in the pre‐, peri‐, and post‐transplant period—impacting survival, graft, and child health, and quality of life. Learning health networks offer a structure that multi‐disciplinary teams across many centers can use to collaborate on improving outcomes for children with rare diseases—with a mantra of “sharing seamlessly” to coordinate across centers and “stealing shamelessly” from best practices within or outside of the network. Methods We describe the development of the Starzl Network for Excellence in Pediatric Transplantation (SNEPT) as a learning health network dedicated to improving health and quality of life for children with liver transplants and their families. Results SNEPT was founded in 2017 as a collaborative effort between pediatric liver transplant centers and the families that they serve, initially at 10 and then 16 centers across the US and Canada. Stakeholders identified four priority projects: Peri‐Operative and Surgical Practices, Optimizing Immunosuppression, Quality of Life, and Transition of Care. Over the last 8 years, we built SNEPT infrastructure to efficiently support work on each project. Our four working groups each developed methods to improve practice by sharing protocols, data, and experience between centers and adapting best‐practice strategies from other centers for efficient improvement. Conclusions Coordination as a learning health network has improved transparency and enhanced collaboration between SNEPT centers, creating opportunities for best‐practices development and better outcomes in pediatric liver transplant.