PCORnet
The National Patient-Centered Clinical Research Network (PCORnet®) was developed to connect networks of data together as a resource for researchers working to advance public health. Researchers also have access to expertise from clinicians and patient partners. PCORnet® is an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The network was built with input from a community of patients and their families, researchers, scientists, clinicians, health systems, and other committed individuals and organizations dedicated to patient-centered outcomes research.
The University of Utah Health participates in PCORnet® as part of The Greater Plains Collaborative (GPC): a Clinical Data Research Network consisting of 14 leading medical centers in 9 states.
How to Access PCORnet® data: Front Door
The Front Door is the access point for potential investigators, patient groups, health systems, and sponsors to reach PCORnet® resources and infrastructure. It is managed by the PCORnet® Coordinating Center and provides a systematic, transparent, and efficient approach for research partners to engage in opportunities and data assets within the Network.
University of Utah researchers can access PCORnet® via Front Door Access with help from the Research Opportunity Assessment Committee.
- Investigator - Presents ideas to the University of Utah PCORnet® team who provide clarifications and additional documentation as needed.
- U OF U PCORnet® team - Presents the idea to the Research Opportunity Assessment Committee at GPC via the Front Door and relays information and request for additional documentation.
- Research Opportunity Assessment (ROA) Committee - Reviews the idea from the investigator, and requests additional information and/or documentation. Passes it over to the GPC committee
- GPC committee - Denies or approves the request.
- PCORnet® Network Partners - After approval, runs the query against their database and returns the result to the Coordinating Center, the GPC committee.
- Results of Analysis - The researcher gets results back via Front Door. The entire process is performed locally at PCORnet® partner networks. The data never moves and remains secure in PCORnet® Coordinating Center.
PCORnet® Data
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Data accessible via the PCORnet® distributed network is drawn from millions of electronic health records (EHRs) with growing links to patient-reported and payor data to create a powerful, standard data set that facilitates large-scale, multi-site research.
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A key security feature of the PCORnet® infrastructure is that the data stay with each network partner behind its firewall protected under HIPAA and are not amassed into a single data pool or data warehouse. Queries and responses are enabled via a secure Distributed Research Network Query Portal based on the open-source PopMedNet software platform. The system includes strong governance, role-based access controls, and auditing. The PCORnet®-enabled approach shares only the minimum necessary information needed to answer a question Researchers’ queries are sent to the data — and answers, not data, are sent back to researchers.
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All PCORnet®-accessible data are rigorously screened in a two-stage process. The first stage examines data for conformance, or adherence to the standard organization and representation of data for PCORnet®; completeness, including that diagnosis codes are aligned; plausibility to ensure that the values make logical sense; and persistence to ensure that records are not disappearing between refreshes.
The second stage of curation establishes the level of data quality for a specific study purpose. The PCORnet® Coordinating Center examines accessible data for patterns to identify potential quality concerns for key variables within a given study or population. As a result, the strengths and weaknesses of data available via PCORnet® for specific research use are well known and communicated with transparency at the outset of every research effort.
Patient and Caregiver Engagement in PCORnet-enabled research
Patients and caregivers have a seat at the table of every PCORnet®-enabled study, engaging alongside health professionals as coequal consultants and collaborators.
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