A National Pediatric Learning Health System (PEDSnet)
Christopher B. Forrest, MD, PhD
Project SummaryWe propose to create a national, pediatric-specific learning health system (LHS) composed of a newly formed multi-institutional clinical data research network (CDRN) (called PEDSnet); three condition-specific patient-powered research networks (PPRNs) focusing on pediatric inflammatory bowel syndrome, hypoplastic left heart syndrome, and childhood obesity; and two national data partners. An LHS is organized around communities of patients, families, clinicians, and researchers who work together to purposefully integrate knowledge generation (research) with knowledge dissemination and implementation at the point of care (quality improvement). Its goal is to provide information about available, reasonable alternatives that will allow patients and families to make informed, shared decisions with their healthcare team in ways that lead to improvements in outcomes. The PEDSnet CDRN includes eight of the nation's largest children's hospital health systems:
- Children's Hospital of Philadelphia,
- Cincinnati Children's Hospital Medical Center,
- Children's Hospital Colorado,
- Nemours Children's Health System,
- Nationwide Children's Hospital,
- St. Louis Children's Hospital,
- Seattle Children's Hospital, and
- Boston Children's Hospital.
- engage patients/families, clinicians, researchers, and system executives in the creation of the pediatric LHS;
- form governance structures that provide operational and strategic oversight of the LHS;
- establish an interoperable digital infrastructure to support learning (research, dissemination, and implementation), recruitment, and engagement of stakeholders;
- create a recruitment infrastructure to support prospective research studies; and
- develop policies and procedures (e.g., a central Institutional Review Board [IRB]) that facilitate collaboration.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.
PCORI Funding Awards
PCORI has approved 313 awards to fund patient-centered comparative clinical effectiveness research projects to date.