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Health Agencies Advance Interoperability of Cancer Data

Policy-makers are developing new data standards to help meet Cancer Moonshot visions for health interoperability.

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Health policy officials are targeting new elements for U.S. Core Data for Interoperability (USCDI) standards to help researchers and developers speak the same language for technology around cancer care and treatment.

“How do we think about these additional data elements to solve particular use cases so that our federal agency partners can programmatically build on that for the programs that they have and it allows everyone to be tethered and based on what the health care delivery system already supports?” National Coordinator for Health IT Micky Tripathi, who also recently assumed a dual role as acting chief AI officer at the Department of Health and Human Services, said at a May summit.

Health agencies are building a pipeline of cancer data elements for USCDI. Tripathi said ONC partners have already agreed upon the first set of data elements that aligns with reporting requirements. Agencies involved include ONC, the National Cancer Institute (NCI), the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), and the Centers for Medicare and Medicaid Services (CMS).

The new data elements will capture the patient’s treatment history, test results and disease status for electronic health records, and several major EHR vendors will be supporting these new elements.

According to National Cancer Institute Director Dr. Kimryn Rathmell, achieving some of the goals of Cancer Moonshot and the National Cancer Plan — including decreasing mortality by 50% by 2047 and making improvements in cancer prevention — will require data at every level.

“There’s so much opportunity with data, and there’s so many things that we could do better, faster and more powerfully if we utilize data as to the best of its capability,” Rathmell said at the summit.

Rathmell cited NCI’s Childhood Cancer-Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT) program that focuses on childhood cancer.

“We’re looking at interoperability and helping to be a part of maximizing data utility through these really important efforts. The childhood cancer data initiative is creating this data integration that really was not available before, which is not just a data set — I think it is changing the culture and the community of the way we practice something that I would love to see expand even beyond pediatrics,” she said.

In addition to data, which makes up a large component of NCI’s National Cancer Plan released last year, the agency is also focused on eliminating inequities.

“Making a big dent in that mortality curve means meeting every community. It means having therapies and opportunities and access for everyone and making sure that what we’re doing for cancer is truly for every community,” said Rathmell.

The agency is looking for more data experts amid these growing priorities.

“We need people who are good at working in the data fields and who have a good working knowledge which is going to be valuable beyond the experts,” said Rathmell. “To become a valuable part of the workforce you need to learn data science and you need to learn how to work in big data.”

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