publication date: Sep. 7, 2018

To “free the data,” expert group urges NCI to spend money to speed up data sharing

By Matthew Bin Han Ong

A working group formed by NCI Director Ned Sharpless has recommended that the institute devote additional funds informatics researchers could use to  harmonize existing cancer datasets.

If the recommendations of the Big Data working group are implemented, contenders for a funding boost could include the Multiple Myeloma Research Foundation, the American Association for Cancer Research’s Project GENIE and Foundation Medicine.

NCI, too, has been building its own informatics infrastructure through programs that include The Cancer Genome Atlas and The Cancer Imaging Archive, which are now part of the institute’s consolidated Cancer Research Data Commons.

The interim report by the Working Group on Data Science was formally accepted by the National Cancer Advisory Board at a cyber meeting Aug. 14. The recommendations come eight months after Sharpless pledged to “free the data” and accelerate progress in cancer research via the curation of aggregated, annotated datasets.

The interim report is posted here.

“The clinical data are really the hard part,” Sharpless said at his first NCI Town Hall last year (The Cancer Letter, Dec. 15, 2017).  “The clinical data are trapped in doctors’ notes that are unstructured free text that live in these complex electronic health records. And the data really are; they’re shackled. And the data want to be free. So, we’re going to free the data.

“And so, the NCI can play a much-needed leadership role in how we get there, from where we are today, which is fragmented and disorganized, to where we want to be in the … Continue reading To “free the data,” expert group urges NCI to spend money to speed up data sharing

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