Data Scale, Quality and Security
Each year, PCORnet connects researchers with health data from more than 47 million people nationwide through eight PCORnet® Clinical Research Networks, enabling large-scale, innovative, patient-centered health research.
Data is the backbone of PCORnet, and the scale, quality, and security of PCORnet-accessible data is a differentiator for the network. PCORnet® Network Partners perform rigorous work upfront that enables users to ask the same question to millions of people across the United States simultaneously, with fast answers delivered in a single, standardized format.
Data Sources
Data accessible via the PCORnet distributed network draw 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.
Data Resources
PCORnet® Network Partners have developed policies and other critical documentation to ensure the quality, facilitate the accessibility, and govern the use of the PCORnet® Common Data Model and resources.
Start Studies Faster with High-quality, Standardized Data
New in Journal of Clinical and Translational Science, "Assessing and Improving Research Readiness in PCORnet®." Explore how coordinated data curation & transparent collaboration help investigators start studies faster with high-quality, standardized data.
>47 Million in the Network
PCORnet represents data from everyday healthcare encounters with more than 47 million people across the U.S. each year.
Data Quality
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 Coordinating Center for PCORnet® 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.
Data Security and Privacy
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. 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.
Continuous, Open-Source Learning Model
The process for readying data from sites participating in PCORnet for research is one of continuous improvement. As the PCORnet® Network Partners build knowledge around EHR use for research purposes, they are constantly refining and evolving. Improving health outcomes was a core motivator in the development of PCORnet, which is why PCORnet data curation learnings are shared on GitHub, an open source project accessible to all.
