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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.

  1. Investigator - Presents ideas to the University of Utah PCORnet® team who provide clarifications and additional documentation as needed.
  2. 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.
  3. Research Opportunity Assessment (ROA) CommitteeReviews the idea from the investigator, and requests additional information and/or documentation. Passes it over to the GPC committee
  4. GPC committee - Denies or approves the request.
  5. PCORnet® Network Partners - After approval, runs the query against their database and returns the result to the Coordinating Center, the GPC committee.
  6. 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

  • 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.

  • 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.