Researchers, healthcare providers navigate a new era of data sharing

Data
Data is an integral part of advancing medical research and improving clinical care. Sharing it is the next critical step.

Data is quickly becoming king in the healthcare industry, and that means sharing it is increasingly important and complex for researchers and health systems.

Data sharing is particularly important in the quest to advance cancer therapies, the directors of the Swedish Cancer Institute at Providence St. Joseph Health in Seattle and the Sylvester Comprehensive Cancer Center at the University of Miami Health System wrote in an op-ed for Stat.

RELATED: NIH head lauds 21st Century Cures Act data-sharing

Precision medicine—“arguably the hottest topic” at the American Society of Clinical Oncology’s annual meeting, the authors wrote—relies on vast troves of data that have been historically sequestered from researchers. Fortunately, providers are realizing the benefits of sharing health data, and technology companies are stepping in to make it easier to do.  

“Large data sets help physicians understand how targeted treatments have worked for genetically similar patients in the past, and help us uncover treatments we may not have thought of,” they wrote. “Of course, assembling large data sets requires health systems to share information.”

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Data sharing has been a key aspect of community-led efforts to address population health disparities, particularly as providers look to integrate social determinants of health. Meanwhile, National Institutes of Health Director Francis Collins, M.D., Ph.D., has praised provisions of the 21st Century Cure Act that prohibit information blocking and eliminated barriers to data sharing at NIH.

Medical researchers are undergoing a similar, albeit slower, transition toward widespread data sharing. This week, the International Committee of Medical Journal Editors unveiled a new policy requiring researchers to include a data-sharing statement in manuscripts submitted to ICMJE journals beginning in July 2018.

The new requirements would apply to some of the premier medical journals, including the Journal of the American Medical Association and the New England Journal of Medicine.

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Some believe that policy won’t go far enough, however. In an op-ed for Stat, critics of the new policy say it amounts to “a couple of weak sticks and no carrots.” Brian Nosek, executive director of Center for Open Science, said without more prescriptive requirements, most researchers won’t post data to an independent repository where it can be accessed by others.

However, NEJM Editor-in-Chief Jeffrey Drazen, M.D., said the infrastructure doesn’t exist for widespread data sharing.