Minimizing Disclosure Risk in HHS Open Data Initiatives. 1. De-identification


HIPAA codified a de-identification process for health records that includes the removal of 18 specific direct and indirect identifiers.8 Following Sweeney’s successful re-identification of the Massachusetts governor in a file of hospital discharge data, the protections mandated by HIPAA went well beyond the simpler, informal de-identification practices that were previously common with such data but clearly inadequate. Nevertheless, HIPAA applies to a narrow range of datasets, and even in this context, researchers including Benitez and Malin (2009), discussed in the preceding chapter, have demonstrated the limits of HIPAA de-identification.

8 The 18 identifiers are listed in Appendix D.

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