A National Pediatric Learning Health System (PEDSnet) is a community of patients, families, clinicians, scientists, and health system leaders who are building a national pediatric learning health system dedicated to discovering and implementing new ways of providing the best care and ensuring the best outcomes for children. The maturation of PEDSnet from the Institute of Medicine’s concept of a learning health system, to its prototype, to its national scaling as a clinical data research network (CDRN) was described in the July 2014 issue of Health Affairs. This 1-year-old network includes eight pediatric academic health systems, relationships with three other research networks; the ImproveCareNow PPRN (inflammatory bowel disease), National Pediatric Cardiology Quality Improvement Collaborative (hypoplastic left heart syndrome), and Healthy Weight Network (childhood obesity)—and relationships with national data partners, ExpressScripts (dispensed medications), IMS Health (multipayer administrative data), and HealthCore (BC/BS health plan data).
During Phase I, the PEDSnet Steering Board ratified a number of policies that promote collaboration. Member institutions signed single Institutional Review Board Master Reliance and Data Use Agreements. Each of the three PEDSnet cohorts submitted a patient-centered outcomes research proposal for funding consideration by PCORI. An analysis-ready database for 4.5 million children was created, and the data coordinating center (DCC) established a robust data quality program. We launched data linkage projects with national health plan partners. In addition to the studies developed by the 3 cohorts, PEDSnet issued a limited call for proposals, reviewed 23 submissions, and approved 8 to move forward into protocol development, all within 10 weeks.
During Phase II, PEDSnet will use its experience from Phase I to mature its infrastructure, conduct an increasingly large volume of research, and prepare for long-term sustainability. The DCC will add natural language processing expertise for use in developing computable phenotypes and outcome measures. We will create a research service model that enables prospective users to access data or scientific resources to enable them to rapidly and efficiently field clinical trials with minimal interference in clinical operations. We will strengthen the engagement of parents and clinicians throughout the network as an increasing volume of research is produced. A cohort of patients with complete data will be created by linking data from our national data partners and regional health plans with the PEDSnet electronic health record data resource. We will execute a strategy for financial sustainability that will rely on a diverse portfolio of patient-centered outcomes research, translational science, and pharmaceutical research grants; institutional support in the form of membership fees and in-kind contributions; and research service fees. A robust set of collaborations with PPRNs, CDRNs, and institutional Clinical and Translational Science Awards and Institutes will be forged to create a sustainable pediatric clinical research infrastructure that is built to last.
View more about this project on PCORnet.org.