Identifiability Project

Patient Privacy Risks in U.S. Supreme Court Case
Sorrell v. IMS Health Inc.

Response to Amici Brief of El Emam and Yakowitz

by Latanya Sweeney


In today's data rich networked society, money and outmoded privacy practices are driving personal data into the vaults of private industry networks, notwithstanding potential harms that can result to data subjects. A classic example is IMS Health ("IMS"), which receives prescription data from pharmacies and sells versions of it to pharmaceutical companies for marketing purposes. IMS relies on what can be the weakest of the HIPAA data sharing provisions, allowing for self-assessed claims of confidentiality. There is no external review of IMS' de-identification process, no public detailed statement describing it, and what is reported about it, exposes known vulnerabilities for re-identifying patients. Once data are deemed de-identified under HIPAA, they can be shared widely for any purpose. A stronger HIPAA provision exists, but presumably IMS does not use it because doing so would thwart linking and the ability to construct longitudinal patient records. During the 8 years of the HIPAA Privacy Rule, society has experienced an explosion in the amount of data collected on individuals, challenging HIPAA's 1990s styled protection. Yet, IMS has expressed no desire to adapt or seek less privacy-invasive approaches, which are possible under HIPAA. IMS has not augmented its approach with traditional remedies (e.g. Fair Information Practices or informed consent), nor has IMS reported interest in exploring new promising scientific or societal approaches to privacy protection. The Vermont Statute, which prohibits the sharing of prescription records, is an effective privacy guard. Unfortunately, IMS and the Vermont Statute leave society with a false belief that one must choose between a secretive privacy-invasive approach or no data sharing at all, overlooking possible ways for society to reap data sharing benefits with privacy protection.

This paper addresses Respondent's arguments, as supported by an amici brief filed by Dr. Khaled El Emam and Jane Yakowitz, which in turn, addressed Petitioner's arguments, as supported by amici briefs filed by the Electronic Privacy Information Center, the Electronic Frontier Foundation, the AARP and the National Legislative Association on Prescription Drug Prices, and the Vermont Medical Society, on the limited issue of privacy risks of de-identified patient data that is regulated by the Vermont statute.

L. Sweeney Patient Privacy Risks in U.S. Supreme Court Case Sorrell v. IMS Health Inc.: Response to Amici Brief of El Emam and Yakowitz. Data Privacy Lab Working Paper 1027-1015B. Cambridge 2011. (PDF).

Keywords: HIPAA Privacy Rule, identifiability, data privacy, re-identification

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