PEDSnet: how a prototype pediatric learning health system is being expanded into a national network

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.