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To serve and protect? Electronic health records pose challenges for privacy, autonomy and person-centered medicine

Talya Miron-Scahtz, Glyn Elwyn


This paper highlights potential challenges to privacy posed by electronic health records and proposes to increase patient involvement in maintaining the privacy of their data. Electronic health records are heavily promoted in the United States, rendering sensitive health information accessible and potentially jeopardizing patient privacy. Yet certain HIPAA regulations are consistently violated, suggesting that the Federal Government is unable to fully enforce privacy standards. On the other hand, proportionately there are few civilian complaints to the U.S. Department of Health and Human Services (HHS), implying that patients are unaware of privacy breaches, the means to report them, or both. Without permitting patient control over information, the proposed privacy system assumes that leakages will occur and offers to notify patients of breaches after the fact. This deprives patients of the right to defend their intimate details, which are more available to caretakers, employers, and insurers than ever. Our proposed solution is to render usage of patient information transparent by default, so that patients can monitor and control who is privy to what input. This will enhance patient empowerment, feeding into improved governmental control over health data.

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