Big Data Proxies and Health Privacy Exceptionalism

By Nicolas Terry

I have posted Big Data Proxies and Health Privacy Exceptionalism. The article argues that, while “small data” rules protect conventional health care data (doing so exceptionally, if not exceptionally well), big data facilitates the creation of health data proxies that are relatively unprotected. As a result, the carefully constructed, appropriate, and necessary model of health data privacy will be eroded. Proxy data created outside the traditional space protected by extant health privacy models will end exceptionalism, reducing data protection to the very low levels applied to most other types of data. The article examines big data and its relationship with health care, including the data pools in play, and pays particular attention to three types of big data that lead to health proxies: “laundered” HIPAA data, patient-curated data, and medically-inflected data. It then reexamines health privacy exceptionalism across legislative and regulatory domains seeking to understand its level of “stickiness” when faced with big data. Finally the article examines some of the claims for big data in the health care space, taking the position that while increased data liquidity and big data processing may be good for health care they are less likely to benefit health privacy.

Nicolas P. Terry

Nicolas P. Terry

Nicolas Terry is the Hall Render Professor of Law at Indiana University McKinney School of Law where he serves as the Executive Director of the Hall Center for Law and Health and teaches various healthcare and health policy courses. His recent scholarship has dealt with health privacy, mobile health, the Internet of Things, Big Data, AI, and the opioid overdose epidemic. He serves on IU’s Grand Challenges Scientific Leadership Team, working on the addictions crisis and is the PI on addictions law and policy Grand Challenge grants. His podcast is at TWIHL.com, and he is @nicolasterry on Twitter.

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