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AMIA Backs NIH’s Plan to Revise Health Data Management Policy

AMIA is supporting development of a new health data management and sharing policy for research funded by the National Institutes of Health (NIH), the group said in an Dec. 10 comment letter.

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Source: Thinkstock

By Fred Donovan

- AMIA is supporting development of a new health data management and sharing policy for research funded by the National Institutes of Health (NIH), the group said in an Dec. 10 comment letter.

The trade association for healthcare informaticians commended NIH for inclusion of part of AMIA’s data sharing principles and positions in the proposed changes to NIH's data management and sharing policy (DMSP).

In October, NIH issued a request for information on a proposed revision of its data management and sharing policy, which dates from 2003.

AMIA endorsed inclusion of its findable, accessible, interoperable, and reusable (FAIR) data principles in the DMSP and recommended that NIH support underlying infrastructure and curation activities with funding.

“We are especially pleased that the NIH envisions a DMSP that applies to ‘all intramural and extramural research, funded or supported in whole or in part by NIH, that results in scientific data, regardless of NIH funding level or mechanism,’” AMIA wrote in the letter.

AMIA backed a phased implementation to NIH’s DMSP revision, which should only apply to new research funded after the DMSP is final.

“First, new research funded above $500,000 per year and subject to the existing data sharing policy should comply with the final DMSP within one year of its adoption. Second, new research funded above $250,000 per year should comply with the provisions of the DMSP within 2 years of its adoption, and finally, all grants funded below $250,000 per year should comply with the DMSP within 3 years of adoption,” AMIA argued.

This phased implementation strategy would focus on grants that already must comply with the existing policy and likely have valuable scientific data, while giving smaller projects more time to adjust to the new DMSP.

“Alongside this phased adoption timeline, the NIH should consider a graduated DMSP that appropriately calibrates requirements based on funding level and whether scientific data are deposited in an NIH-endorsed depository or knowledgebase,” the letter continued.

“We strongly recommend that the draft DMSP encourage institutes and centers (ICs) to factor the quality of the plan into the overall impact score through the peer review process for those grants that are supported at high levels or support programmatic priorities. We also recommend that NIH incentivize deposition of scientific data in NIH-endorsed databases and knowledgebases by allowing such plans to comply with a streamlined DMSP,” the letter noted.

AMIA listed a number of observations and recommendations in its comment letter, including:

  • The draft DMSP should improve data management and sharing of scientific data to facilitate learning health systems and continuous discovery. Specifically, AMIA recommended the DMSP should seek to improve the interoperability and supplemental uses of research data by encouraging the use of biomedical data standards and adherence to data management and data sharing best practices. 
  • The draft DMSP should improve institutional support and professional advancement for experts managing and sharing scientific data. Specifically, the DMSP should facilitate implementation of the NIH Data Science Strategic Plan, especially the aspects of the plan that seek to credit experts who
    manage and share valuable data sets/software for their work. 
  • To operationalize the DMSP more specificity and clarity around concepts is needed. Specifically, a) data management is distinct from data sharing. The processes and activities that support data management and sharing are also different. AMIA recommended the NIH develop a DMSP that specifies these distinctions through additional plan elements as described below. b) AMIA recommended that the DMSP expand the current list of definitions to include concepts for “data management,” “covered data,” “covered timeframe,” and refine definitions for “metadata” and “scientific data.” c) While AMIA supports the scope of a pan-NIH DMSP that covers all grants, contracts, and/or other funding agreements, it recommended the NIH convene stakeholders with individual ICs to operationalize the DMSP.

“We strongly recommend the NIH develop a subsequent draft DMSP based on stakeholder feedback to the concepts in this RFI. Another comment period will provide NIH with valuable insights before issuing a final DMSP,” the letter concluded.

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