Pediatric Learning Health System Prototype Expands Into National Model

A prototype learning health system for pediatric inflammatory bowel disease (IBD) is expanding into a national learning network that includes pediatric congenital heart disease and obesity, as noted in an AHRQ-funded study and abstract in the July issue of Health Affairs. Learning health systems are health care organizations that integrate research and quality improvement at the patient’s point of care. These systems rely on strong stakeholder collaboration, patient data from electronic health records across multiple organizations, and broad sharing of clinical data and best practice information. By maximizing these features, the prototype IBD learning health system, funded by AHRQ, has expanded into a national network, called PEDSnet, which is funded by the Patient-Centered Outcomes Research Institute. PEDSnet currently consists of eight of the nation’s largest pediatric health centers, caring for more than two million children each year. The study is titled, “PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into a National Network.”

2014 Jul;33(7):1171-7. doi: 10.1377/hlthaff.2014.0127.

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

Forrest CB1, Margolis P2, Seid M3, Colletti RB4.

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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.

Project HOPE—The People-to-People Health Foundation, Inc.