Update May 17, 2021: Flatiron researchers have refreshed and expanded benchmarking results obtained with a novel composite real-world mortality variable for oncology. Learn more here.

Today more than ever, researchers are turning to real-world data in order to shed light on questions throughout the oncology therapeutic lifecycle — impacting everything from translational research and trial design through regulatory approval. The stakes are high and researchers are obliged to scrutinize the source data to assess its fitness for use in such applications. It’s this scrutiny that leads us to some striking insights about the completeness of mortality information in real-world data.

This story starts at the point of care. In routine care, patient data is collected as necessary to support the treatment of a patient. If a CBC is warranted, blood is drawn and the test results become part of the electronic health record (EHR). If a scan is warranted, it’s performed and documented. If a patient with advanced cancer dies, what is warranted is perhaps a phone call to the family, or a condolence letter. But aside from that, the electronic health record demands no attention – particularly in an outpatient setting.

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Senior Quantitative Scientist