Federal advisory draft report outlines big data challenges

Privacy and Security Workgroup: Complex legal landscape around health privacy creates hurdles to data access for individuals, researchers

While big data analytics can help to improve the health of individuals and communities, as well as support growth of a learning health system, its use presents several privacy and security challenges, according to a federal advisory group.

In a draft report presented at the Aug. 11 meeting of the Office of the National Coordinator's Health IT Policy Committee, the Privacy and Security Workgroup (PSWG) outlines those challenges and recommends steps to address them. For instance, it notes that "rapid growth" in the amount of health information boosts the risks for violations to occur. What's more, the workgroup says despite efforts to de-identify information in data sets, the threat of re-identification persists.

"Additionally, the complex legal landscape around health privacy creates obstacles for individuals trying to access their personal information and hurdles for researchers attempting to grow the LHS," the workgroup says.

Among other recommendations, the workgroup calls on federal policymakers to work to increase transparency about how such information is used. It also says that current laws around the use of such information should be evaluated and modified to "incentivize" privacy, but that voluntary codes of conduct also could improve security efforts.

"Policymakers should evaluate existing laws, regulations and policies [rules] governing uses of data that could contribute to a LHS to assure those rules promote responsible re-use of data to contribute to generalizable knowledge," HIT Policy Committee Vice Chair Paul Tang says in a draft letter to National Coordinator for Health IT Karen DeSalvo.

The report is the culmination of ideas and recommendations shared at several public meetings and hearings of the PSWG since October 2014. Those meetings took place following a White House recommendation for the Department of Health and Human Services to ensure privacy protections amid the increased use of big data; the recommendation came on the heels of a report it published in May 2014 on big data and privacy protections.

Another report published last summer by the California HealthCare Foundation also emphasizes some of the concerns raised by the PSWG, noting that while aggregation of consumer health data holds potential to improve care, privacy issues associated with that practice cannot be ignored.

"[M]ost people are not aware of the amount of information they are leaving behind that is not covered by HIPAA or any privacy rules," that report says. "Without such protection, different kinds of data are being combined and used by third parties in ways that consumers might not anticipate, and some would not want."

To learn more:
- here's the PSWG draft report (.pdf)
- here's the draft letter (.pdf)

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