AMIA Asks NIH To Push For Research Data Sharing

Posted on January 23, 2017 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

The American Medical Informatics Association has is urging leaders at the NIH to take researchers’ data sharing plans into account when considering grant proposals.

AMIA is responding to an NIH Request for Information (topic: “Strategies for NIH Data Management, Sharing and Citation”) was published in November 2016. In the RFI, it asked for feedback on how digital scientific data generated by NIH-funded research should be managed and disclosed to the public. It also asked for input on how to set standards for citing shared data and software.

In its response, AMIA said that the agency should give researchers “institutional incentives” designed to boost data sharing and strengthen data management. Specifically, the trade group suggested that NIH make data sharing plans a “scoreable” part of grant applications.

“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 said in its NIH response. “By using the peer-review process, we will make incremental improvements to interoperability, while identifying approaches to better data sharing practices over time.”

To help the agency implement this change, AMIA recommended that applicants earmark funds for data curation and sharing as part of the grants’ direct costs. Doing so will help assure that data sharing becomes part of research ecosystems.

AMIA also recommends that NIH offer rewards to scholars who either create or contribute to publicly-available datasets and software. The trade group argues that such incentives would help those who create and analyze data advance their careers. (And this, your editor notes, would help foster a virtuous cycle in which data-oriented scientists are available to foster such efforts.)

Right now, to my knowledge, few big data integration projects include the kind of front-line research data we’re talking about here.  On the other hand, while few community hospitals are likely to benefit from research data in the near term, academic medical organizations are having a bit more luck, and offer us an attractive picture of how things could be.

For example, look at this project at Vanderbilt University Medical Center which collects and manages translational and clinical research data via an interface with its EMR system.

At Vanderbilt, research data collection is integrated with clinical EMR use. Doctors there use a module within the research platform (known as REDCap) to collect data for prospective clinical studies. Once they get their research project approved, clinicians use menus to map health record data fields to REDCap. Then, REDCap automatically retrieves health record data for selected patients.

My feeling is that if NIH starts pushing grantees to share data effectively, we’ll see more projects like REDCap, and in turn, better clinical care supported by such research. It looks to me like everybody wins here. So I hope the NIH takes AMIA’s proposal seriously.