PEDSnet Infrastructure
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Abstract
The infrastructure project secures funding to ensure the continuation of PEDSnet centralized data management services, where data from contributing institutions is managed, transformed, undergoes data quality protocols, and is made openly accessible and disseminated to researchers and stakeholders.
PEDSnet is a PCORnet Clinical Research Network (CRN) focused exclusively on improving child health through patient-centered outcomes research. PEDSnet produces reusable and novel governance, informatics, scientific and training resources. The infrastructure project secures funding to ensure the continuation of PEDSnet centralized data management services, where data from contributing institutions is managed, transformed, undergoes data quality protocols, and is made openly accessible and disseminated to researchers and stakeholders.
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Description
PEDSnet’s guiding purpose is to improve child health through knowledge production that is efficient (produced faster at less cost) and meaningful (useful to patients, caregivers, clinicians, and health system leaders). Led by the Children’s Hospital of Philadelphia (CHOP), PEDSnet is the only PCORnet® Clinical Research Network (CRN) focused exclusively on improving child health and pediatric health system performance. The network is composed of eight of the nation’s leading children’s hospital health systems:
- Children’s Hospital of Philadelphia
- Cincinnati Children’s Hospital Medical Center
- Children’s Hospital Colorado
- Lurie Children’s Hospital
- Nemours Children’s Health System
- Nationwide Children’s Hospital
- Seattle Children’s Hospital
- Stanford Children’s Health
These institutions have developed the largest pediatric-specific electronic health record database in the nation, comprising data for 7,240,314 children who reside primarily in 12 states (PA, DE, NJ, MD, FL, OH, KY, IN, IL, CO, CA, WA). About one-third of this population is seen annually, representing 3.6 percent of all US children. These data have been used in 91 studies funded with over $80 million in grants and contracts. PEDSnet has the ability to conduct research studies using existing data only, but it has also used those data to identify children eligible for clinical trials and other studies involving patient recruitment.
Data Network
The PEDSnet data network is centralized with data managed by its Coordinating Center. Data are pulled from each institution’s EHR system, converted to a common format, and then uploaded for further evaluation and modification. To ensure accuracy of its data, PEDSnet runs a state-of-the-art data quality program that includes numerous types of data quality assessments and the ability for institutional teams to fix problems when they are detected. PEDSnet provides informatics leadership to PCORnet and is represented on all its data-related workgroups. As a demonstration of its scale and organization, PEDSnet rapidly responded to the COVID-19 pandemic by developing within three weeks quick turnaround analyses of viral testing and infection, leading to the publication of the largest to-date study on SARS-CoV-2 infection in US children. PEDSnet has very large groups of patients with rare diseases, which are commonly diagnosed during childhood (70 percent have a pediatric onset) and frequently require specialized pediatric care in children’s hospitals. Within the PEDSnet database, there are over 400,000 patients with intellectual and developmental disabilities, which is one of PCORI’s legislatively mandated priority conditions.
Governance and Operations
PEDSnet is governed by a Steering Committee and Research and Data Subcommittees. Each committee includes one institutional scientist (total of eight) and three parents. Sixteen parents are embedded in network governance and operations. Leadership for research studies has been provided by 32 unique medical institutions of which 24 were outside PEDSnet. PEDSnet has participated in or led all PCORnet Demonstration and Designated studies that included children or pediatric providers. For Phase 3, PEDSnet is expanding the number of parents involved in its network governance and operations, adding a Youth Council, conducting psychological safety training with its network teams, adding an evaluation of the effectiveness of its engagement efforts, and conducting five stakeholder-informed research prioritization activities for PCORI Strategic Priorities.
Investigators and Environment
Forrest and Bailey, both MD/PhDs, are the PIs for PEDSnet. They co-lead its Coordinating Center, are co-located at CHOP, and have a 12-year history of collaborating. Forrest brings 25 years of health services and outcomes research experience, and Bailey 20 years of experience in informatics. There are 117 individuals across the network who are participating in PEDSnet governance and operations. Each member institution includes scientific, informatics, and project management leadership. The PEDSnet Coordinating Center includes effort from 12 individuals who are responsible for network operations and managing the data network.
Dissemination and Resource Sharing
PEDSnet is grounded in open-science principles, which are central to its guiding purpose, governance, and network operations. Research, technical, governance, and engagement resources are made freely and widely available. Distribution channels include sharing with PCORnet CRNs via the PCORnet Commons, sharing materials on its website (pedsnet.org), software sharing on GitHub, distribution of newsletters, rapid publication of study results, and direct-to-patient return of results for specific studies.
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Related Publications
Forrest CB, Margolis P, Seid M, Colletti RB, et al. July 2014. “PEDSnet: how a prototype pediatric learning health system is being expanded into a national network.” Health Aff (Millwood). 33(7):1171-7.
DOI: 10.1377/hlthaff.2014.0127
Forrest CB, Margolis PA, Bailey LC, Marsolo K, Del Beccaro MA, et al. August 2014. “PEDSnet: A National Pediatric Learning Health System.” J Am Med Inform Assoc. 21(4):602-6.
DOI: 10.1136/amiajnl-2014-002743
Pletcher MJ, Forrest CB, Carton TW. February 2018. “PCORnet’s Collaborative Research Groups. Patient Relat Outcome Meas.” 9:91-95.
DOI: 10.2147/PROM.S141630
Forrest CB, McTigue KM, Hernandez AF, Cohen LW, Cruz H, et al. January 2021. “PCORnet® 2020: current state, accomplishments, and future directions.” J Clin Epidemiol. 129:60-67.
DOI: 10.1016/j.jclinepi.2020.09.036
Razzaghi H, Greenberg J, Bailey LC. May 2021. “Developing a systematic approach to assessing data quality in secondary use of clinical data based on intended use.” Learn Health Syst. 6(1):e10264.
DOI: 10.1002/lrh2.10264
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