Population Insights Reports Powered by PCORnet®
Population insights provide a valuable starting point for understanding how the PCORnet infrastructure can be leveraged to investigate key health topics prioritized by PCORI for research. These insights offer topic-specific snapshots of the extensive, real-world patient data collected across PCORnet® Clinical Research Networks (CRNs), helping researchers gain a deeper understanding of the rich data resources available within the network. This allows research teams to refine research questions, identify relevant data elements, and design more informed, impactful studies.
PCORnet® Clinical Research Network Population Insights
PCORnet is a large, distributed “network of networks” funded by PCORI to improve the nation’s capacity to efficiently conduct health research, particularly patient-centered comparative clinical effectiveness research (CER).
At the time of this report, PCORnet® Network Partners include Clinical Research Networks (CRNs) with more than 70 data-contributing sites in addition to patient partners and the Coordinating Center for PCORnet®. Collectively, these data-contributing sites consist of more than thirteen thousand clinical sites connected to nearly 47 million patients in the U.S. Clinical sites include large academic health systems, hospitals, federally qualified health centers, and community clinics.
This report describes the results of a data query of the patient population with at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2024. The query results will enhance public awareness of the population of patients across sites participating in PCORnet that potentially would be available for future health care research.
Women's Health Population Insights
This report describes the results of a network data query of the patient population of women receiving health care services at clinical sites across PCORnet between January 1, 2019 – December 31, 2023. The query results will enhance public awareness of the population of patients that are women across sites participating in PCORnet that potentially would be available for future health care research.
Gene Therapy
This report describes the characteristics of patient populations who received gene therapy for different health conditions between January 1, 2016 and June 30, 2024, including distinct cohorts for cancer patients and noncancer patients. Data from 72 sites participating in PCORnet are included in this report, reflecting the experience of more than 53,000 patients. These data are standardized from healthcare settings using the PCORnet® Common Data Model, meaning they are ready for researcher analysis.
Mental and Behavioral Health (MBH)
The tables in this data report present aggregate data on patients with recorded diagnosis codes for mental and behavioral health (MBH) conditions, as well as the demographic characteristics, healthcare use, and prescribing of common psychiatric medications for these patients between January 1, 2021, to December 31, 2022. The data report will inform how PCORnet can be used for patient-centered CER studies on interventions related to MBH conditions, and to inform opportunities to enhance PCORnet data resources for MBH research.
Maternal Morbidity and Mortality (MMM)
This query of PCORnet® data resources describes the sociodemographic and clinical characteristics of a population of patients with a pregnancy-related event that had a healthcare encounter at a partner site between October 1, 2016 – January 1, 2022. The query results will inform how PCORnet can be used for patient-centered comparative clinical effectiveness research (CER) research on MMM and to inform opportunities to enhance PCORnet data resources for MMM research.
Pediatric Population
This query of PCORnet data resources describes the sociodemographic and clinical characteristics of the population of pediatric patients ages birth to 20 years old with at least one face-to-face health care encounter at a PCORnet partner site between January 1, 2023 – December 31, 2023. The query results enhance public awareness and provide investigators and the public with information on ways PCORnet can be used to conduct patient-centered CER to improve the health of children and youth.
Telehealth
This query of PCORnet data resources describes the patients who utilized telehealth services that are served by PCORnet partner sites. The query does not include descriptives of the magnitude of telehealth utilization or the telehealth modalities used. The query also included a comparison to the patient population with ambulatory encounters. The query results will inform how PCORnet can be used for patient-centered CER studies and trials related to telehealth and opportunities to enhance PCORnet data resources for research on telehealth.
Intellectual and Developmental Disabilities (IDD)
This query of PCORnet data resources describes the population of patients with IDD that had healthcare encounters at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. The query results will inform how PCORnet can be used for patient-centered CER studies and trials on IDD and to inform opportunities to enhance PCORnet data resources for IDD research.