PCORnet Reports Illustrate Potential for Behavioral, Pediatric Research

PCORnet, the national patient-centered clinical research network funded by PCORI, has issued two data reports demonstrating the extensive, real-world patient data available for mental and behavioral health and pediatric health research through PCORnet clinical research networks (CRNs).

PCORnet is a large, distributed “network of networks” funded by PCORI to improve the nation’s capacity to efficiently conduct definitive health research, particularly patient-centered comparative clinical effectiveness research (CER).

CRNs now consist of more than 13,000 clinical sites connected to over 47 million unique patients receiving care across the U.S. each year, including at large academic health systems, hospitals, federally qualified health centers, and community clinics.

In December 2024, the Patient-Centered Outcomes Research Institute (PCORI) approved $134 million in funding for Phase 4 of PCORnet, expanding the infrastructure to support large-scale research.

All data contributing partners store a version of their clinical data in the same standardized data model, the PCORnet Common Data Model. In this distributed network, data holders (e.g., health systems, clinics) maintain physical control, use, and manage the transfer of their data to the CRNs, the Coordinating Center for PCORnet and data requestors.

PCORI said the reports offer topic-specific snapshots of CRNs, helping research teams to refine research questions, identify relevant data elements, and design more informed, impactful studies.

The Mental and Behavioral Health Data Report demonstrates that PCORnet has the potential to support national-scale patient-centered comparative CER efforts and generate real-world evidence to improve our understanding of the effectiveness of interventions for mental and behavioral health conditions.

This report presents aggregate data on patients with recorded diagnosis codes for mental and behavioral health conditions, as well as the demographic characteristics, healthcare use, and prescribing of common psychiatric medications for these patients. Data from 59 sites participating in PCORnet are included in this report, reflecting the experience of nearly 29.5 million patients.

PCORI said the Pediatric Population Data Report describes the sociodemographic and clinical characteristics of more than 12 million pediatric patients from birth to 20 years old who received care in 2023 at a site participating in PCORnet.

Data reports are also available for other areas of research, including maternal morbidity and mortality, telehealth, and intellectual and developmental disabilities. Most offer the largest national query of real-world data on conditions, populations, or service utilization, PCORI said.