Development of a collaborative learning health system data mart in pediatric Liver Transplantation

Introduction: 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 (LHS) dedicated to pediatric liver transplant, has previously identified practice variability, waitlist mortality, peri-operative complications, and inadequate quality initiative implementation as critical barriers that deserve prioritization in the field.

Methods: This project was a novel partnership between SNEPT and the United Network for Organ Sharing (UNOS) 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.

Results: We combined transplant-specific data from center Standard Transplant Analysis and Research (STAR) 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.

Discussion: 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 LHS development, growth, and expansion.