Learning health systems (LHS) integrate research, improvement, management, and patient care to ensure that every kid receives “the appropriate treatment at the right time…every time,” i.e. evidence-based, customised treatment. The study presents attempts to develop a multicenter LHS centred on juvenile liver transplantation that is sustainable and productive. The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) is the first multicenter attempt to set common objectives and a common agenda for clinical care innovation by paediatric liver transplant families and clinicians. This study describes the organisation, successes, and problems of SNEPT as an LHS. The researchers started with four projects: immunosuppression, perioperative anticoagulation, quality of life, and care transfer. They prioritised actionable items that address barriers to providing “the right care at the right time” to every paediatric liver transplant recipient, such as facilitating transparency of practise variation and the connection of practises to patient outcomes, leveraging existing datasets to reduce the burden of tracking outcomes, incorporating patient-reported outcomes into outcome metrics, and accelerating implementation. This has enabled the researchers to fortify collaborative ties, plan quality improvement programmes, and collect pilot data for each of our key initiatives.

The implementation of LHS concepts can help progress the area of paediatric liver transplantation. SNEPT will continue to bring together patient advocacy, big data, technology, and transplant thought leaders to provide the best treatment possible, while also discovering novel, scalable solutions to paediatric transplantation’s most difficult issues.

Reference: https://journals.lww.com/jpgn/Abstract/2021/03000/A_Learning_Health_System_for_Pediatric_Liver.17.aspx