Results Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Clinical Data Research Networks (CDRNs) are one type of network supported by PCORI. CDRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CDRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.

PCORI funded PEDSnet’s participation in PCORnet from 2015 to 2019. This report outlines PEDSnet’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, healthcare providers, health plans, and health systems in the research process and decision making about the network
  2. Continue building the PCORnet CDM to add new types of data, ensure data quality, answer questions and requests, link to data outside the network, and keep data secure and private
  3. Create an efficient infrastructure to carry out clinical trials
  4. Create rules and guidance to protect people who take part in research studies, keep participants’ information confidential, and examine the risks of proposed studies
  5. Work with PCORnet partners and partners outside the network to do research studies, build information systems, and share knowledge and practices
  6. Create a plan to fund the network after PCORI funding ends

Network at a glance

PEDSnet is a national pediatric learning health system. Led by Children’s Hospital of Philadelphia, PEDSnet was made up of eight children’s hospital systems in 12 states and had data on more than six million children, adolescents, and young adults. The PEDSnet’s database had information on all pediatric diseases and specialties.

TitlePEDSnet
Network designClinical Data Research Network (CDRN)
Lead partnersChildren’s Hospital of Philadelphia
Other partnersBoston Children’s Hospital
Children’s Hospital Colorado
Cincinnati Children’s Hospital Medical Center
Nationwide Children’s Hospital
Nemours Children’s Health System
St. Louis Children’s Hospital
Seattle Children’s Hospital
Participants8 hospital systems, including 3,500 hospital beds for children and 10,000 doctors
Population6,209,564 individuals who received care at a partner hospital
Area(s) of focusChildren

How does the network operate?

PEDSnet created a steering board to oversee the network and provide guidance about the future of PEDSnet. The board was made up of two parent leaders and a clinical or scientific leader from each partner hospital system. PEDSnet also had a research committee to supervise all research activities, a data committee to oversee data quality and find ways to link different data sources, and an engagement committee to support patient involvement in the network. Other committees supported different network activities. A coordinating center handled day-to-day business, including helping with study paperwork.

The network developed agreements about using and sharing data and participated in a single Institutional Review Board, or IRB. An IRB is a group that makes sure research is ethical. Partner hospital systems stored patient data securely. To answer research questions, the network provided data to researchers and followed strict security rules. Data provided by the network could not be used to identify patients.

How did the network involve patients and other partners?

Parents made up 20 percent of the steering board. An engagement committee made up of parents and healthcare providers from partner hospital systems reviewed and gave input on all research requests. The committee also promoted ways to increase patient, parent, and healthcare provider involvement in research. Some committee members worked one-on-one with researchers to make sure studies involved patients and families.

In addition, the network developed web-based trainings and other resources to help youth, parents, and researchers create partnerships where patients are engaged at all stages of the research process. The network also shared the results of research that used PEDSnet data with patients, families, and others. Some doctors led groups that focused on one topic such as patient safety or kidney disorders. These groups focused on ways to engage patients and parents in research within their own area.

Who is in the network?

The PEDSnet Data Network had data on 6,209,564 individuals as of June 28, 2019. The main data sources are electronic health records, but some studies included other types of data. PEDSnet data are stored in a CDM specific to children and then transformed to the PCORnet CDM. Data are available from 2009.

Population (as of 06/28/19)

Race/ethnicity

  • 59% white
  • 22% other
  • 19% black
  • 13% Hispanic

Sex

  • 51% male
  • 49% female

Age

  • 97% 20 years or younger
  • 2% 21–44 years
  • 1% 45+ years

How is the network supporting research?

While a Partner Network in PCORnet, PEDSnet participated in 64 studies.

How does the network support future research?

CDRNs follow PCORI standards to make sure their networks continue after PCORI’s funding ends. CDRNs format their data to the CDM and involve patients and healthcare providers in planning and carrying out research studies. CDRNs also take part in research with other networks in PCORnet and build relationships outside of PCORnet.

Glossary

Clinical Data Research Networks (CDRN): CDRNs are networks that originate in healthcare systems, such as hospitals, health plans, or practice-based networks, and securely collect health information during the routine course of patient care.

Common Data Model (CDM): A CDM establishes a standard way of defining and formatting data.

Institutional Review Board (IRB): A group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

Project Information

Christopher B. Forrest, MD, PhD
Children's Hospital of Philadelphia
$9,690,040
PEDSnet: A Pediatric Learning Health System

Key Dates

June 2019
2015
2019

Study Registration Information

Tags

Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 10, 2024