Department of Medicine
Analytical, Diagnostic and Therapeutic Techniques and Equipment | Bioinformatics | Biological Factors | Health Information Technology | Health Services Administration | Health Services Research | Neoplasms
PURPOSE: To evaluate health care systems for the availability of population-level data on the frequency of use and results of clinical molecular marker tests to inform precision cancer care.
METHODS: We assessed cancer-related molecular marker test data availability across 12 US health care systems in the Cancer Research Network. Overall, these systems provide care to a diverse population of more than 12 million people in the United States. We performed qualitative analyses of test data availability for five blood-based protein, nine germline, and 14 tissue-based tumor marker tests in each health care system's electronic health record and tumor registry using key informants, test code lists, and manual review of data types and output. We then performed quantitative analyses to estimate the proportion of patients with cancer with test utilization data and results for specific molecular marker tests.
RESULTS: Health systems were able to systematically capture population-level data on all five blood protein markers, six of 14 tissue-based tumor markers, and none of the nine germline markers. Successful, systematic data capture was achievable for tests with electronic data feeds for test results (blood protein markers) or through prior manual abstraction by tumor registrars (select tumor-based markers). For test results stored in scanned image files (particularly germline and tumor marker tests), information on which test was performed and test results was not readily accessible in an electronic format.
CONCLUSION: Even in health care systems with sophisticated electronic health records, there were few codified data elements available for evaluating precision cancer medicine test use and results at the population level. Health care organizations should establish standards for electronic reporting of precision medicine tests to expedite cancer research and facilitate the implementation of precision medicine approaches.
molecular markers, precision medicine, cancer, biomarker tests, population-level data, data availability, electronic health records
Rights and Permissions
Copyright © 2019 American Society of Clinical Oncology. Publisher PDF posted after 12 months as allowed by the publisher's access and sharing policy at https://ascopubs.org/cci/author-center/open-access.html.
DOI of Published Version
JCO Clin Cancer Inform. 2019 Sep;3:1-10. doi: 10.1200/CCI.19.00026. Link to article on publisher's site
JCO clinical cancer informatics
Burnett-Hartman AN, Epstein MM. (2019). Clinical Molecular Marker Testing Data Capture to Promote Precision Medicine Research Within the Cancer Research Network. Open Access Articles. https://doi.org/10.1200/CCI.19.00026. Retrieved from https://escholarship.umassmed.edu/oapubs/3988
Analytical, Diagnostic and Therapeutic Techniques and Equipment Commons, Bioinformatics Commons, Biological Factors Commons, Health Information Technology Commons, Health Services Administration Commons, Health Services Research Commons, Neoplasms Commons