PCORnet® 2020: current state, accomplishments, and future directions

Abstract

Objective To describe PCORnet, a clinical research network developed for patient-centered outcomes research on a national scale. Study Design and Setting Descriptive study of the current state and future directions for PCORnet. We conducted cross-sectional analyses of the health systems and patient populations of the 9 Clinical Research Networks and 2 Health Plan Research Networks that are part of PCORnet. Results Within the Clinical Research Networks electronic health data are currently collected from 337 hospitals, 169,695 physicians, 3,564 primary care practices, 338 emergency departments, and 1,024 community clinics. Patients can be recruited for prospective studies from any of these clinical sites. The Clinical Research Networks have accumulated data from 80 million patients with at least 1 visit from 2009-2018. The PCORnet Health Plan Research Network population of individuals with a valid enrollment segment from 2009-2019 exceeds 60 million individuals, who on average have 2.63 years of follow-up. Conclusion PCORnet’s infrastructure comprises clinical data from a diverse cohort of patients and has the capacity to rapidly access these patient populations for pragmatic clinical trials, epidemiological research, and patient-centered research on rare diseases.

Impact of the Early Phase of the COVID-19 Pandemic on US Healthcare Workers: Results from the HERO Registry

“…Established in April 2020 with funding from the Patient-Centered Outcomes Research Institute, the HERO research program is one of the research activities of PCORnet®, the National Patient-Centered Clinical Research Network ( pcornet.org ). 16 At its launch, the HERO research program included a registry ( ClinicalTrials.gov Identifier NCT04342806), data from which this manuscript reports, and a clinical trial on prophylactic use of hydroxychloroquine ( ClinicalTrials.gov Identifier NCT04334148). The clinical trial activated 40 recruitment sites, which were the primary sources of registry recruitment as well.…”

“…Registry members had to be 18 years or older and able to read English. Within health systems participating in PCORnet, 16 recruitment was done via advertisements, institution-wide emails, provider recommendations, and newsletters. Additional approaches included articles in the media, social media advertisement, and professional society solicitations.…”

Unraveling COVID-19: a large-scale characterization of 4.5 million COVID-19 cases using CHARYBDIS

“…Routinely collected real world data (RWD) are a powerful asset for an evolving pandemic response [1,2].…”

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Background: Routinely collected real world data (RWD) have great utility in aiding the novel coronavirus disease (COVID-19) pandemic response [1,2]. Here we present the international Observational Health Data Sciences and Informatics (OHDSI) [3] Characterizing Health Associated Risks, and Your Baseline Disease In SARS-COV-2 (CHARYBDIS) framework for standardisation and analysis of COVID-19 RWD.Methods: We conducted a descriptive cohort study using a federated network of data partners in the United States, Europe (the Netherlands, Spain, the UK, Germany, France and Italy) and Asia (South Korea and China).

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“…Background: Routinely collected real world data (RWD) have great utility in aiding the novel coronavirus disease (COVID-19) pandemic response [1,2]. Here we present the international Observational Health Data Sciences and Informatics (OHDSI) [3] Characterizing Health Associated Risks, and Your Baseline Disease In SARS-COV-2 (CHARYBDIS) framework for standardisation and analysis of COVID-19 RWD.…”