Pediatric Learning Health Networks in Solid Organ Transplantation—Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation
Roshan P. George
Emory University and Children's Healthcare of Atlanta, Atlanta, Georgia, USA
Search for more papers by this authorAmy G. Feldman
Digestive Health Institute, Children's Hospital Colorado and the University of Colorado, Aurora, Colorado, USA
Search for more papers by this authorCassandra Krise-Confair
Starzl Network for Excellence in Pediatric Transplantation, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
Search for more papers by this authorLauren Smyth
The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
Search for more papers by this authorAngela Lorts
The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
Search for more papers by this authorDavid M. Peng
Division of Cardiology, C.S. Mott Hospital, University of Michigan, Ann Arbor, Michigan, USA
Search for more papers by this authorCorresponding Author
George V. Mazariegos
Hillman Center for Pediatric Transplantation, Thomas E. Starzl Transplantation Institute, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
Correspondence:
David K. Hooper ([email protected])
George V. Mazariegos ([email protected])
Search for more papers by this authorCorresponding Author
David K. Hooper
Department of Pediatrics, Cincinnati Children's Hospital Medical Center and University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
Correspondence:
David K. Hooper ([email protected])
George V. Mazariegos ([email protected])
Search for more papers by this authorRoshan P. George
Emory University and Children's Healthcare of Atlanta, Atlanta, Georgia, USA
Search for more papers by this authorAmy G. Feldman
Digestive Health Institute, Children's Hospital Colorado and the University of Colorado, Aurora, Colorado, USA
Search for more papers by this authorCassandra Krise-Confair
Starzl Network for Excellence in Pediatric Transplantation, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
Search for more papers by this authorLauren Smyth
The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
Search for more papers by this authorAngela Lorts
The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
Search for more papers by this authorDavid M. Peng
Division of Cardiology, C.S. Mott Hospital, University of Michigan, Ann Arbor, Michigan, USA
Search for more papers by this authorCorresponding Author
George V. Mazariegos
Hillman Center for Pediatric Transplantation, Thomas E. Starzl Transplantation Institute, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
Correspondence:
David K. Hooper ([email protected])
George V. Mazariegos ([email protected])
Search for more papers by this authorCorresponding Author
David K. Hooper
Department of Pediatrics, Cincinnati Children's Hospital Medical Center and University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
Correspondence:
David K. Hooper ([email protected])
George V. Mazariegos ([email protected])
Search for more papers by this authorFunding: The authors received no specific funding for this work.
ABSTRACT
Background
Learning Health Networks (LHN) have evolved within medicine over the past two decades, but their integration into transplantation has been more recent.
Objectives and Methods
In this paper, we describe three LHNs in end-stage organ disease/transplantation, their common and unique features, and how their “actor-oriented” architecture allowed for rapid adaptation to meet the needs of their patients and practitioners during the recent COVID-19 pandemic.
Result
The structure and focus of the Improving Renal Outcomes Collaborative (IROC), Starzl Network for Excellence in Pediatric Transplantation (SNEPT), and the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) are reviewed. We discuss the critical role of patient and family engagement, focusing on collaboration with Transplant Families. Finally, we review challenges common to the LHN concept and potential common areas of alignment to achieve the goal of more rapid and sustained progress to improve health in pediatric transplantation.
Conclusion
LHN in transplantation are essential to accelerate knowledge dissemination and improve outcomes.
Open Research
Data Availability Statement
Data availability statement is not applicable to this manuscript.
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