Big data

Report: HIPAA is a hindrance to health care info sharing

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The primary law safeguarding the privacy of personal medical information is an impediment to the use of big data in improving health care for the individuals it is intended to protect, according to a report from the Bipartisan Policy Center.

The Washington, D.C., think tank characterized the Health Insurance Portability and Accountability Act of 1996 (HIPAA) as too far-reaching and too "often misunderstood, misapplied and over-applied in ways that may inhibit information sharing unnecessarily."

Esther Dyson, chairwoman of the Health Initiative Coordinating Council, endorsed the findings at a Dec. 3 event that coincided with the release of the paper.

"The problem with HIPAA is [that] it was applied much too broadly, and to be candid, it was often used as an excuse not to move data around," Dyson said.

Some of the problems sound similar to those voiced by critics of the intelligence community in the wake of the Sept. 11, 2001, terrorist attacks.

"Despite the significant growth in electronic health information," the report states, "for the most part, data continues to reside in silos -- inaccessible for purposes of improving health as well as the quality, cost and patient experience of care."

With regard to the government's gathering of data on individuals, Nick Sinai, deputy chief technology officer at the White House's Office of Science and Technology Policy, stressed that collection is only part of the process.

"We talk about public and non-public information, but there's actually this middle ground of what we call restricted information, where it may have [personally identifiable information] or it may have other information that is sensitive, but if you can make it available to qualified parties, to research institutions, to folks who are going to not re-identify folks, there [are] actually tremendous insights and opportunities," Sinai said.

The report also notes that a trove of potentially useful data is available that "falls outside the purview of HIPAA, such as consumer-generated data that might be posted on social networks, stored in apps or shared through other online sources."

Among the paper's suggestions for reforms are:

  • Establishing standards, policies and best practices for capturing, analyzing and sharing data.
  • Creating incentives to accelerate information sharing.
  • Engaging individuals in planning, executing and improving big-data efforts.
  • Federally funding collaborative research efforts on transparency and analytical methods.

About the Author

Reid Davenport is an FCW editorial fellow. Connect with him on Twitter: @ReidDavenport.

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Reader comments

Sun, Dec 8, 2013

You know, I get the distinct impression that these government Wonks view my right to privacy as a mere piddling nuisance to their grand, Big Government, people management schemes. Hey Wonks, I don't trust you or the government to do anything competently nor in my best interests. After all, we've already seen the Obama administration use the power of government as a political weapon against its list of enemies by unleashing the IRS on them. And Obama-Care really is working out so well, isn't it? It truly is a model of government efficiency. Gathering all of our most personal and private of medical information into one grand federal database would be a hacker's dream come true. It would also be another opportunity for sleazy politicians like Obama to abuse the people by exposing their secrets. So no, leave HIPAA alone and keep your paws off of MY health history!

Wed, Dec 4, 2013

So HIPPA is getting in the way of Obamacare. Hilarious.

Wed, Dec 4, 2013

What is the news coming out of Washington, are they going to come out with a budget, anything, money, no money so at least we can make our decisions on whether to stay or go if there is a better paying job out there. Just tired of all the polotics and pointing fingers, as far as I am concerned the next election can not come soon enough, everyone of my candidates will be a new one.

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