Lauren W. Cohen

PCORnet ^® , a national resource funded by the Patient-Centered Outcomes Research Institute, is designed to enhance the nation’s capacity to conduct efficient, patient-centered health research. The robust and adaptable PCORnet infrastructure can be leveraged to support a variety of study designs. Within this framework, PCORnet ^® Studies, a distinguished subset of research studies that meets specific criteria and approval, serve as exemplary models of patient-centered research, standing out for their rigorous adherence to criteria that elevate the quality and impact of research. Over the past 10 years, over 300 studies have been completed using the PCORnet infrastructure, including 58 studies that have earned the distinction of being a meritorious PCORnet ^® Study, of which 19 have been completed. We explore several of these efforts, highlighting the study archetypes supported by the PCORnet infrastructure, as well as the clinical therapeutic areas of these studies, funding sources, and breadth of PCORnet institutional users. We also provide lessons learned from our accumulated experience that translates the PCORnet infrastructure into a continuously learning framework and highlight unique capabilities of the PCORnet infrastructure supporting innovation in future trials.

Background: The PCORnet ^® infrastructure was funded by PCORI in 2014 to streamline clinical trials, increase patient-centered research, and generate knowledge that leads to improved health care and outcomes. In this paper, we summarize the significant achievements of the infrastructure over the last decade as well as recent accomplishments. We also provide an update on the expanded patient population who receive care at sites participating in PCORnet ^® Clinical Research Networks (CRNs) and share priorities for the future. Methods: The electronic health records of 71 health systems participating in PCORnet ^® CRNs as of July 2024 were queried, and data were analyzed to describe 10 common health conditions, stratified by demographic characteristics of age, sex, race, ethnicity, and an index of social deprivation. Results: Out of over 100M total patients with activity in the last 10 years, health systems participating in PCORnet ^® CRNs had over 47 million unique patients with at least one encounter in 2023. The most common chronic conditions among these patients were hypertension (18%), anxiety disorders (10%), type 2 diabetes (8%), and asthma (5%). Over 20% of patients receiving care at a site participating in PCORnet were in the top 50% of metrics for area deprivation. The PCORnet infrastructure supported 51 PCORnet ^® studies, all of which met established guidelines for use of the PCORnet ^® Common Data Model (CDM), patient-engagement, and commitment to return of results. Discussion: PCORnet ^® CRNs represent a diverse and expanding patient population and often include data on the socioeconomic status of the communities. Through continued efforts to engage communities and patients and national-scale research, the PCORnet ^® infrastructure can help improve care and outcomes for patients affected by common and rare conditions.