Share Seamlessly, Steal Shamelessly: Unlocking the Learning Health Network Ethos in Pediatric Liver Transplantation
Emily R Perito1, Nitika Gupta2, Kyle Soltys3
1Department of Pediatrics, University of California San Francisco, San Francisco, California, USA.
Insights
The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) improves pediatric liver transplant outcomes through collaboration. This learning health network enhances care coordination and shares best practices for better child health and quality of life.
Area of Science:
- Pediatric Transplantation
- Learning Health Systems
- Collaborative Healthcare Networks
Background:
- Pediatric liver transplantation is critical but carries significant risks impacting survival, graft function, and quality of life.
- Children undergoing liver transplants face challenges in pre-, peri-, and post-transplant phases.
- Learning health networks facilitate multi-center collaboration to improve outcomes for rare diseases.
Purpose of the Study:
- To describe the development of the Starzl Network for Excellence in Pediatric Transplantation (SNEPT).
- To establish a learning health network focused on enhancing health and quality of life for pediatric liver transplant recipients and their families.
Main Methods:
- SNEPT was established in 2017 as a collaborative network of pediatric liver transplant centers and patient families.
- The network initially involved 10 centers, expanding to 16 across the US and Canada.
- Four priority projects were identified: Peri-Operative and Surgical Practices, Optimizing Immunosuppression, Quality of Life, and Transition of Care.
Main Results:
- SNEPT developed infrastructure over 8 years to support its priority projects.
- Working groups implemented methods for practice improvement by sharing protocols, data, and experiences.
- Best-practice strategies were adapted across centers to drive efficient improvements.
Conclusions:
- Coordination within SNEPT has increased transparency and collaboration among participating centers.
- The network fosters the development of best practices.
- Enhanced collaboration and best-practice sharing lead to improved outcomes 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.
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