A learning health network for pediatric liver transplantation: Inaugural meeting report from the Starzl Network for Excellence in Pediatric Transplantation

Abstract

Learning Health Networks (LHN) improve the well‐being of populations by aligning clinical care specialists, technology experts, patients and patient advocates, and other thought leaders for continuous improvement and seamless care delivery. A novel LHN focused on pediatric transplantation, the Starzl Network for Excellence in Pediatric Transplantation (SNEPT), convened its inaugural meeting in September 2018. Clinical care team representatives, patients, and patient families/advocates partnered to take part in educational sessions, pain point exercises, and project identification workshops. Participants discussed the global impact of transplant from both a population and individual perspective, identifying challenges and opportunities where the Starzl Network could work to improve outcomes at scale across a variety of transplant‐related conditions.

State of pediatric liver transplantation in the United States and achieving zero wait list mortality with ideal outcomes: A statement from the Starzl Network for Excellence in Pediatric Transplant Surgeon's Working Group

“…Collaborations can contribute importantly to expanded access to liver transplant. Utilization of large registry and advocacy groups such as SPLIT 25 and learning networks such as SNEPT 29,30 can also The improved visibility that comes from such research will also improve pediatric access to liver transplant. With the implementation of learning networks, research initiatives that include patients and families as stakeholders will improve the study of the rare conditions treated with liver transplantation and raise their visibility.…”

“…Collaborations can contribute importantly to expanded access to liver transplant. Utilization of large registry and advocacy groups such as SPLIT 25 and learning networks such as SNEPT 29,30 can also aid in the dispersing of experience and expertise across the United States. As roughly 500 pediatric liver transplants are performed in the United States annually across multiple centers, there is inherently a decentralization of expertise that leads to heterogeneous management strategies.…”

Immunosuppression after pediatric liver transplant: The parents’ perspective

“…There is extremely little literature focused on or explicitly informed by pediatric LT family and patient concerns about—or priorities for—immunosuppression and its optimization 6,7 . In this pilot study, we developed and disseminated a survey to pediatric LT parents—in partnership with the Society of Pediatric Liver Transplantation (SPLIT)’s Patient, Family, and Engaged Partners (PFEP) group and the Starzl Network for Excellence in Pediatric Transplantation's Patient and Family Voice (PFV) group 8 . We aimed to delineate the family perspective on this critical tightrope of immunosuppression risks and benefits.…”

Feasibility of using a patient‐reported outcome measure into clinical practice following pediatric liver transplantation: The Starzl Network experience

“…A PFV cohort of patient, family and caregiver representatives identified needs such as helping patients feel as though they are still important despite being far out from LT and no longer needing close follow‐up, guidance for parents on staying ahead of emotional needs that may arise (body image issues, peer difficulties), helping patients learn to advocate when they disagree with a care decision, and ensuring their voices are heard. At the time of SNEPT's inaugural meeting, the PFV prioritized QoL assessment as the most important and immediate area of need for improvement in the clinical care of children and teens who have undergone LT 16 . As PROMS use in routine ambulatory LT clinic practice was reported by only one SNEPT site, SNEPT responded swiftly to the PFV's request.…”