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Implementing Cancer Registry Data With the PCORnet Common Data Model: The Greater Plains Collaborative Experience
Bradley D McDowell1, Michael A O'Rorke2, Mary C Schroeder3
1Holden Comprehensive Cancer Center, University of Iowa, Iowa City, IA.
JCO Clinical Cancer Informatics
|December 17, 2024
Summary
Integrating cancer registry data with electronic health records (EHRs) creates a robust resource for cancer research. This approach enhances real-world studies by providing structured data across multiple institutions.
Area of Science:
- Health Informatics
- Oncology Research
- Data Integration
Background:
- Electronic health records (EHRs) offer valuable real-world data for cancer studies.
- EHRs often lack structured data like diagnosis dates and disease stage.
- Hospital cancer registries contain essential structured data for cancer research.
Purpose of the Study:
- To describe the integration of cancer registry data with EHR and billing data.
- To create an interoperable data model for a multisite clinical research network.
- To enhance real-world cancer research by combining diverse data sources.
Main Methods:
- Cancer registry data were implemented into a tumor table compatible with the PCORnet Common Data Model (CDM).
- Distributed queries were used to assess and remediate data quality issues.
- Descriptive frequencies of cancer types, demographics, and linked BMI were generated.
Main Results:
- Eleven sites successfully implemented the tumor table, creating a resource with data for 572,902 tumors.
- Institutional and technical challenges were overcome during data integration.
- Significant variations in racial and ethnic distributions were observed across sites.
Conclusions:
- Integrating cancer registry data into the PCORnet CDM creates a powerful, multisite resource for cancer studies.
- This approach provides a broader range of structured, cancer-relevant data.
- The enhanced CDM tumor table improves the network's effectiveness for real-world cancer research.
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