University of California San Francisco, Benioff Children's Hospital, San Francisco, CA.
Hillman Center for Pediatric Transplantation, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA.
J Pediatr Gastroenterol Nutr. 2021 Mar 1;72(3):417-424. doi: 10.1097/MPG.0000000000002974.
Learning health systems (LHS) integrate research, improvement, management, and patient care, such that every child receives "the right care at the right time...every time," that is, evidence-based, personalized medicine. Here, we report our efforts to establish a sustainable, productive, multicenter LHS focused on pediatric liver transplantation.
The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) is the first multicenter effort by pediatric liver transplant families and providers to develop shared priorities and a shared agenda for innovation in clinical care. This report outlines SNEPT's structure, accomplishments, and challenges as an LHS.
We prioritized 4 initial projects: immunosuppression, perioperative anticoagulation, quality of life, and transition of care. We shared center protocols/management to identify areas of practice variability between centers. We prioritized actionable items that address barriers to providing "the right care at the right time" to every pediatric liver transplant recipient: facilitating transparency of practice variation and the connection of practices to patient outcomes, harnessing existing datasets to reduce the burden of tracking outcomes, incorporating patient-reported outcomes into outcome metrics, and accelerating the implementation of knowledge into clinical practice. This has allowed us to strengthen collaborative relationships, design quality improvement projects, and collect pilot data for each of our priority projects.
The field of pediatric liver transplantation can be advanced through application of LHS principles. Going forward, SNEPT will continue to unite patient advocacy, big data, technology, and transplant thought leaders to deliver the best care, while developing new, scalable solutions to pediatric transplantation's most challenging problems.
学习健康系统（LHS）将研究、改进、管理和患者护理相结合，使每个孩子都能“在正确的时间得到正确的护理……每次都得到”，即基于证据的个性化医疗。在这里，我们报告了我们为建立一个专注于儿科肝移植的可持续、富有成效的多中心 LHS 所做的努力。
Starzl 网络卓越儿科移植（SNEPT）是儿科肝移植家庭和提供者首次共同努力，制定共同的优先事项和创新临床护理的共同议程。本报告概述了 SNEPT 作为 LHS 的结构、成就和挑战。
我们优先考虑了 4 个初始项目：免疫抑制、围手术期抗凝、生活质量和护理过渡。我们共享中心方案/管理，以确定中心之间实践差异的领域。我们优先考虑解决为每个儿科肝移植受者提供“在正确的时间得到正确的护理”的障碍的可操作项目：促进实践变化的透明度以及实践与患者结果的联系，利用现有数据集减少跟踪结果的负担，将患者报告的结果纳入结果指标，并加速知识在临床实践中的实施。这使我们能够加强合作关系，设计质量改进项目，并为我们的每个优先项目收集试点数据。
可以通过应用 LHS 原则来推进儿科肝移植领域的发展。今后，SNEPT 将继续团结患者宣传、大数据、技术和移植思想领袖，提供最佳护理，同时为儿科移植最具挑战性的问题开发新的、可扩展的解决方案。
