AMIA: Draft NIH data sharing policy is a step backwards

By | December 3, 2019

A draft data management and sharing policy issued by the National Institutes of Health is counterproductive, according to the American Medical Informatics Association.

Last month, NIH released a request for public comments on its draft policy, which is meant to increase access to scientific data resulting from agency-funded or conducted research.

However, AMIA is “disappointed” with the recently proposed NIH data sharing policy, especially in light of the private sector’s interoperability initiatives and longstanding data silos in biomedical research.


Doug Fridsma, MD

“This policy represents a step backwards at a time when there is exponential growth in the amount of scientific data for research and the need to leverage large data sets to advance cures for disease,” said AMIA’s President and CEO Doug Fridsma, MD, in a written statement.

According to Fridsma, the agency’s draft policy “imposes a check-the-box requirement that will do little to modernize the 15-year-old NIH data sharing policy, only making the task of managing and leveraging scientific data for supplemental use even more difficult.”

NIH’s draft policy would require researchers with agency-funded or conducted research projects resulting in the generation of scientific data to submit a plan to the funding Institutes, Centers and Offices (ICOs) as part of “just-in-time” for extramural awards, as part of the technical evaluation for contracts, as part of the Intramural Annual Report or prior to release of funds for other funding agreements.

But Fridsma contends that “rather than limit data sharing plans to two pages or a ‘just-in-time’ review that happens after funding decisions are made, the NIH must take a science-based approach to data sharing and take a position of leadership to maximize the value of data.”

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In particular, he makes the case that data sharing should be a “scorable” requirement for researchers seeking public funds.

“We’re hopeful that the NIH will reconsider input from the informatics community and establish a final proposal that better reflects FAIR (Findable, Accessible, Interoperable and Re-usable) data principles, better leverages taxpayer-funded data to advance new research initiatives, and makes sharing data a requirement—not an afterthought—to research proposals,” concludes Fridsma.

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