A network of children’s hospitals, data partners, and specialty networks led by Children’s Hospital was recently approved for an award from the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand its work as part of PCORnet: the National Patient-Centered National Clinical Research Network. PEDSnet, A National Pediatric Learning Health System, was one of 28 multi-institutional and patient-powered research networks approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research.
PEDSnet combines a clinical data research network — including eight of the nation’s largest children’s hospital systems — with three condition-specific networks and two national data partners. Led by The Children’s Hospital of Philadelphia, PEDSnet is also comprised of Cincinnati Children’s Hospital Medical Center, Children’s Hospital Colorado, Nemour’s Children’s Health System, Nationwide Children’s Hospital, St. Louis Children’s Hospital, Seattle Children’s Hospital, and Boston Children’s Hospital. The specialty networks include the National Pediatric Cardiology Improvement Collaborative and ImproveCareNow, as well as a new childhood obesity network. The data partners are Express Scripts and the health analytics company IMS Health.
The Children’s Hospital of Philadelphia’s Christopher Forrest, MD, PhD, serves as the principal investigator of PEDSnet, which is set to combine its efforts with 10 other clinical data research networks in PCORI’s new PCORnet. Focused on comparative effectiveness research (CER), PCORI is “is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions,” according to the PCORI website. Since it began funding CER in 2012, PCORI has awarded a total of $464.4 million.
PCORnet will be a secure, national data network that will improve the speed, efficiency, and use of patient-centered CER, PCORI says. By integrating data available in the individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. The network will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.
Moreover, by enabling researchers and patients, clinicians, to interact directly and jointly determine research priorities, such as the selection specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
“The Children’s Hospital of Philadelphia is thrilled to lend its efforts to PCORnet,” said Philip R. Johnson, MD, chief scientific officer and executive vice president of the CHOP Research Institute. “Multidisciplinary collaborations like this, that help researchers share findings and speed investigations, will help move innovative research from the bench to bedside and improve the care of children and families worldwide.”
Over the next 18 months, the CHOP-led network will use PCORI funds to expand and improve its systems, work to standardize its data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy.
“We are pleased that PEDSnet will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research,” said PCORI Executive Director Joe Selby. “The process to select the awardees was very competitive and PEDSnet demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet.”