title: PEDSnet: how a prototype pediatric learning health system is being expanded into a national network.
abstract: Except for a few conditions, pediatric disorders are rare diseases. Because of this, no single institution has enough patients to generate adequate sample sizes to produce generalizable knowledge. Aggregating electronic clinical data from millions of children across many pediatric institutions holds the promise of producing sufficiently large data sets to accelerate knowledge discovery. However, without deliberately embedding these data in a pediatric learning health system (defined as a health care organization that is purposefully designed to produce research in routine care settings and implement evidence at the point of care), efforts to act on this new knowledge, reducing the distress and suffering that children experience when sick, will be ineffective. In this article we discuss a prototype pediatric learning health system, ImproveCareNow, for children with inflammatory bowel disease. This prototype is being scaled up to create PEDSnet, a national network that will support the efficient conduct of clinical trials, observational research, and quality improvement across diseases, specialties, and institutions.
authors.affiliation: Christopher B. Forrest (forrestc@email.chop.edu) is a professor of pediatrics at the Children's Hospital of Philadelphia and the University of Pennsylvania as well as principal investigator for the PEDSnet learning health system, all in Philadelphia.
authors.forename: Christopher B
authors.initials: CB
authors.lastname: Forrest
authors.affiliation: Peter Margolis is a professor of pediatrics and director of research at the James M. Anderson Center for Health Systems Excellence at the Cincinnati Children's Hospital Medical Center, in Ohio, and scientific director of the ImproveCareNow network.
authors.forename: Peter
authors.initials: P
authors.lastname: Margolis
authors.affiliation: Michael Seid is director of health outcomes and quality of care research in the Division of Pulmonary Medicine and a professor of pediatrics at the Cincinnati Children's Hospital Medical Center.
authors.forename: Michael
authors.initials: M
authors.lastname: Seid
authors.affiliation: Richard B. Colletti is a professor of pediatrics at the University of Vermont College of Medicine, in Burlington, and network director of the ImproveCareNow network.
authors.forename: Richard B
authors.initials: RB
authors.lastname: Colletti
mesh_terms: D000293:Adolescent; D002648:Child; D000067576:Child Health; D002675:Child, Preschool; D003195:Computer Communication Networks / Q000639:trends; D057225:Data Mining / Q000379:methods; D066264:Datasets as Topic; D020000:Decision Support Systems, Clinical; D057286:Electronic Health Records / Q000592:standards; D006801:Humans; D007858:Learning; D010372:Pediatrics / Q000193:education*; D011787:Quality of Health Care; D014481:United States
keywords: Children’s Health; Chronic Care; Evidence-Based Medicine; Information Technology; Quality Of Care