The concept of a learning health system was first described by the the Institute of Medicine in 2008.
A learning health system has four essential attributes:
- It is organized around communities of patients, families, front-line clinicians, researchers, and health system leaders who collaborate to produce and use pediatric healthcare data;
- It creates large electronic health and healthcare data sets;
- It conducts observational research, clinical trials, and population health studies done in clinical care settings in order to provide better information for health and healthcare decision-making; and,
- It strives to improve the quality of care for each patient by applying relevant new knowledge generated through research at the point of care.
The learning health system is more than big data and big clinical trials.
PEDSnet has produced reusable and expandable governance, logistical, informatics, regulatory, scientific, and training resources, organized as a Pediatric Research Commons. The Network has ratified important policies that lay the groundwork for the its governance. PEDSnet institutions have entered into a Single IRB Master Reliance Agreement and Data Use Agreement, which promote efficiencies during the start-up phase of a study. Across its 8 founding institutions, PEDSnet created an analysis-ready database for millions children. PEDSnet has developed novel recruitment methods for enrolling patients into clinical studies and clinical trials. Each PEDSnet study is required to have an implementation plan and a set of "impact" metrics that will be monitored once the new evidence is generated and disseminated.
One of the early examples of the learning health system concept is ImproveCareNow (ICN), a network devoted to improving the care and reducing the suffering of children with inflammatory bowel disease (IBD). Relying on collaborations among care centers, clinicians, patients, and parents, children enrolled in the ICN registry saw their remission rates increase from about 50% to nearly 80% over a seven year period. With achievements like this serving as inspiration, PEDSnet has taken the ICN model and dramatically expanded on it to form a national pediatric network that will support the efficient conduct of clinical trials, observational research, and implementation of research evidence across diseases, specialties, and institutions.
Key Reference: Forrest CB, Margolis P, Seid M, Colletti RB. PEDSnet: how a prototype pediatric learning health system is being expanded into a national network. Health Aff (Millwood). 2014 Jul;33(7):1171-7. PMID:25006143