AMIA Calls for New Policy on NIH Data Sharing

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Data sharing plans should be “scorable” elements of NIH grants, Informatics experts say.

The American Medical Informatics Association (AMIA) today called for the National Institutes of Health (NIH) to update its Data Sharing Policy. Specifically, the nation’s leading informatics experts, said data sharing plans should be considered a “scoreable” element of grant applications subject to the existing policy. AMIA recommended that NIH earmark funding for researchers to produce and execute data sharing plans in order to comply with the new policy.

Published in November 2016, the NIH Request for Information on Strategies for NIH Data Management, Sharing, and Citation, sought feedback on data management and sharing strategies and priorities in order to consider: (1) how digital scientific data generated from NIH-funded research should be managed, and to the fullest extent possible, made publicly available; and, (2) how to set standards for citing shared data and software.

In comments to the RFI, AMIA noted “key institutional incentives are necessary to improve data management and sharing.” Specifically, AMIA identified the need to improve variability in data sharing plans by making them scorable elements of grant applications subject to the existing policy. “Data sharing has become such an important proximal output of research that we believe the relative value of a proposed project should include consideration of how its data will be shared,” AMIA comments said. “By using the peer-review process, we will make incremental improvements to interoperability, while identifying approaches to better data sharing practices over time.”

Expert and peer review of data sharing plans, the group says, will lead to improved data sharing across the NIH portfolio, which will greatly improve interoperability, and research rigor, transparency, traceability, and reproducibility.

“The NIH Data Sharing Policy is now nearly 15 years old – a lot has changed since 2003,” said AMIA President and CEO Douglas B. Fridsma, MD, PhD, FACP, FACMI. “New tools and methods allow for computation at tremendous speeds and volumes. Data once seen as having no value beyond supporting the conclusions of research are become indispensable as we develop new ways to leverage those data for supplemental purposes. By making data sharing plans scorable, and subject to peer-review, we can ensure research data is systematically and strategically collected, managed and shared.”

To support this policy change, AMIA called for funding to be earmarked for data curation and sharing as part of applicable grants’ direct costs. Evidence suggests that dedicated funding for data curation and preparation for sharing is an important contributor to the sustainability of research ecosystems. , In combination with scoring data sharing plans, explicitly setting aside funds will improve data stewardship and enable researchers to adhere to FAIR principles – Findability, Accessibility, Interoperability and Reusability – to help demonstrate value.

Finally, the group noted that institutional rewards were needed for scholars who create and/or contribute to public datasets and software that others find useful. Such incentives would encourage career advancement for those who create, as well as those who analyze, data.

“Data sharing has become a national imperative for our research enterprise,” said Thomas H. Payne, MD, FACP, FACMI. “We commend the NIH for embarking on an effort to develop a coordinated strategy to manage, share and cite research data. And we encourage NIH to lead a discussion on ways to elevate the importance of data sharing across its portfolio of grants.”

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AMIA, the leading professional association for informatics professionals, is the center of action for 5,000 informatics professionals from more than 65 countries. As the voice of the nation’s top biomedical and health informatics professionals, AMIA and its members play a leading role in assessing the effect of health innovations on health policy, and advancing the field of informatics. AMIA actively supports five domains in informatics: translational bioinformatics, clinical research informatics, clinical informatics, consumer health informatics, and public health informatics.

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Lisa Gibson
American Medical Informatics Association
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American Medical Informatics Association
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