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HIPAA hinders healthcare big data collection, report says

The Bipartisan Policy Center report says HIPAA “may inhibit information sharing unnecessarily”

Big Data has become an important tool in the decision-making process in many industries —including the legal industry — for good reason. Numbers-based decision-making gives businesses another way to vault ahead of the competition, spotting trends and identifying problems before they become more readily apparent to the general public.

So why, then, are some healthcare companies slow to dive into Big Data’s warm embrace? According to one study, it’s because Health Insurance Portability and Accountability Act (HIPAA) privacy rules impede the use of Big Data to improve patient care.

The Bipartisan Policy Center (PDF) unveiled a report on Dec. 3 that calls HIPAA “often misunderstood, misapplied and over-applied in ways that may inhibit information sharing unnecessarily.”  According to the report, which was developed with input from both healthcare professionals and lawmakers from a June 2013 meeting, information that could help improve healthcare, such as social media statements or information stored in other online sources, remain inaccessible to healthcare providers.

“Despite the significant growth in electronic health information, 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,” the report said.

The report also said that some data, such as human genomes, are difficult to make anonymous according to HIPAA standards. And while some data exists thanks to opt-in selection measures put forth by HIPAA, the report says that the participation bias inherent in asking a patient for permission to study genetic makeup leads to less data to study.

“Seeking consent from patients to use their data for clinical trials or observational research can help mitigate concerns about privacy, but there is evidence that using 'opt-in' or 'opt-out' patient data results in bias,” the report said.

The Bipartisan Policy Center recommends establishing further standards and best practices for data collection. According to the report, these can help instill confidence in the system, as “[t]rust plays a critical role in the use of big data.” The report also advocates creating incentives for information-sharing and federally funding programs that promote collaborative research efforts.


HIPAA compliance is at the top of mind of healthcare’s legal professionals, and InsideCounsel has it covered:

Tennessee Supreme Court dismisses lawsuit on HIPAA compliance failure

New solution aids HIPAA compliance in the cloud

Technology: Navigating compliance standards in the clouds

Security, compliance concerns at the heart of cloud solutions

Assistant Editor

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Zach Warren

Zach Warren is Assistant Editor of InsideCounsel magazine, where he oversees online content submissions and administers InsideCounsel's enewsletters. Zach specializes in new media and multimedia...

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