ASCO 2019: Leading organizations come together to learn from every cancer patient

Jul 16, 2019
ASCO 2019: Leading organizations come together to learn from every cancer patient

Three of the country’s leading health and technology organizations have come together to make sharing cancer data easier.

The American Society of Clinical Oncology (ASCO), MITRE and the Alliance for Clinical Trials in Oncology Foundation have established a core dataset that should be routinely captured in the electronic health record (EHR) of every cancer patient.

The Minimal Common Oncology Data Elements (mCODE), announced at this year’s annual ASCO meeting in Chicago, aims to standardize cancer data collected across the country.

“With mCODE, we’re bringing the oncology community together around common data standards that will bring us one step closer to our goal of learning from every patient with cancer,” says ASCO President Monica M. Bertagnolli.

Real world data on most of the nearly 15 million people living with cancer in the US is housed on an EHR, but the various systems prioritize the collection of different types of data.

‘Incompatible’ EHR systems limit data sharing 

Some use different terms to describe the same type of data or call for the information to be collected in different formats, making the systems incompatible with one another.

This dramatically limits the ability of researchers and doctors to learn from patient records, hinders care coordination, and adds to the administrative burdens and costs for everyone, particularly practices and patients.

“Progress and quality care for patients with cancer can hinge on our ability to seamlessly share patient data among doctors, hospitals, and researchers. But data sharing is much more difficult, if not impossible, when EHR systems contain incompatible information,” adds Bertagnolli.

mCODE, which will be available to providers free of charge, is standardized to use widely available medical terminologies and grouped into six categories.

These are “patient”, to include demographic and other personal characteristics, “disease”, which includes specific details on the cancer, and “genomics”, or the malignancy’s molecular characteristics. Other sections are “labs/vitals”, which houses all the relevant laboratory test results and vital signs, “treatment” and “outcomes”.

Information ‘freely available’ to HCPs

It means the same, crucial information on all cancer patients would be freely available and accessible to doctors and researchers at the click of a button.

Steven Piantadosi, Scientific Director of the Alliance Foundation ICAREdata Project, says: “This work will validate the use of mCODE as a tool for clinical research and will also establish a platform for conducting research that includes many patients not currently represented in conventional prospective clinical trials.”

The system is currently being piloted at cancer centers across the United States, including Partner’s Healthcare in Boston and Intermountain Healthcare, which has its headquarters in Salt Lake City. It is expected to be rolled out more widely in the coming months.

Jay J. Schnitzer, MITRE’s chief technology officer, said: “Publishing mCODE is an important step towards realizing incredible insights into treatment that the 97 percent of cancer patients not participating in clinical trials could generate.”

Widescale adoption could allow “shared treatment experiences” to become “information that patients and clinicians can use to better navigate care options”, he adds.


Leading Health and Technology Organizations Release Common Cancer Data Standards to Enable Sharing Across EHR Systems and Improve Patient Care. (2019, June 1). Retrieved from

ASCO 2019: Leading organizations come together to learn from every cancer patient

Astellas Patient Advocacy is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.

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