Related Experiment Video
Updated: May 8, 2026
11:18
Generation of Comprehensive Thoracic Oncology Database - Tool for Translational Research
Published on: January 22, 2011
Follow the data: tracking data quality and completeness in oncology real-world data
Samantha J App1, Anne-Marie Meyer2,3,4, Shannon Silkensen2
1Wake Forest School of Medicine, 9609 Medical Center Drive, Rockville, Maryland, MD, 20850, United States.
JAMIA Open
|May 7, 2026
Summary
Electronic Health Record (EHR) biomarker data lose fidelity when transferred to cancer registries and FHIR extracts. This highlights critical gaps in data exchange methods for real-world data (RWD) research.
Area of Science:
- Oncology
- Health Informatics
- Biomedical Data Science
Background:
- Electronic Health Record (EHR) data are vital for cancer research.
- Data fidelity during EHR data exchange between systems is not well understood.
- Accurate data is crucial for reliable real-world data (RWD) research.
Purpose of the Study:
- To investigate the agreement of essential biomarker data.
- To quantify data fidelity when EHR data is transferred to cancer registries and FHIR extracts.
- To identify potential data loss in RWD extraction and exchange.
Main Methods:
- Single-institution retrospective study.
- Compared demographics and 6 biomarkers from 30 lung cancer patients (July 2020-July 2022).
- Used manual EHR review as the gold standard; tested concordance with Institutional Cancer Registry and FHIR exports.
Main Results:
- Demographics showed high concordance across databases.
- Biomarker data from the source EHR were missing in 80%-100% of FHIR extracts.
- Demographic registry variables were highly concordant.
Conclusions:
- Significant loss of biomarker data availability across RWD sources.
- Identified critical gaps in RWD extraction or exchange methods.
- Emphasized the risks of relying on unvalidated RWD in cancer research.
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