PEDSnet uses the learning health system framework to form collaborations across institutions and networks, integrate and standardize clinical data, engage patients, clinicians, and researchers in scientific studies, and conduct clinical, health services, and population health research.
PEDSnet conducts multi-institutional pediatric research that informs clinical care and contributes to a national learning health system that enhances health for all children.
All PEDSnet research projects include two or more institutions and multiple researchers. If a study can be done at a single pediatric facility, it would not need to use the PEDSnet infrastructure or resources. PEDSnet can also link individuals, researchers, or sponsors to clinical and scientific expertise (we call this our "matchmaking" function).
(2) Create Big Pediatric Health Data
Data from patients' electronic health records are extracted and standardized. The standardization process renders the data "interoperable" such that data elements mean the same thing across institutions. For example, one institution may record patient gender as "male" and "female" while another records it as "1" for male and "2" for female. Standardization involves writing computer code to transform both institutions' data so that gender would be recorded in the database as "M" and "F" in both cases.
PEDSnet key activities are collaboration, creation of big pediatric health data, engagement of stakeholders, and research.
(3) Engage Stakeholders in Research
Parents and clinicians, in addition to researchers, are involved in all PEDSnet research projects, helping to identify the most important research topics, design the methodology, conduct the study, and disseminate results. Parents serve on the PEDSnet Steering Board and all its Committees.
PEDSnet has developed a number of resources to accelerate study start-up, recruitment, and dissemination and implementation. Examples include common contracting language and master service agreements, a single institutional review board reciprocal reliance agreement, standardized data, electronic consent, facilitated patient recruitment using the EHR, and implementation tools for driving new evidence back to patients and clinicians at the point of care.