Development of a collaborative learning health system data mart in pediatric liver transplantation

Pediatric liver transplant is a lifesaving intervention for children with disparate pathology ranging from single-gene defects to global liver dysfunction and complications from progressive cirrhosis and portal hypertension. The Starzl Network for Excellence in Pediatric Transplantation (SNEPT), a novel learning health system dedicated to pediatric liver transplant, has previously identified practice variability, waitlist mortality, perioperative complications, and inadequate quality initiative implementation as critical barriers that deserve prioritization in the field. This project was a novel partnership between SNEPT and the United Network for Organ Sharing to co-design a pediatric transplant-specific data mart and web portal to systematically map an approach to understanding these barriers and deliver strategies to combat them. We combined transplant-specific data from center Standard Transplant Analysis and Research files with project specific metrics identified by SNEPT to develop a web-based application to display progress and disseminate results. Customized, dynamic visualizations were built to display project data for center-level review and network-wide benchmarking, quality assurance, and performance improvement. Our DataMart platform represents a successful, scalable, systems-level approach to data management that can be adopted by other transplant communities to ensure transplant-specific learning health system development, growth, and expansion.