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J Am Med Inform Assoc. 2013 Jan 1;20(1):29-34. doi: 10.1136/amiajnl-2012-000936. Epub 2012 Jun 26.

Building public trust in uses of Health Insurance Portability and Accountability Act de-identified data.

Author information

1
Center for Democracy & Technology, 1634 I Street, NW Suite 1100, Washington, DC 20006, USA.deven@cdt.org

Abstract

OBJECTIVES:

The aim of this paper is to summarize concerns with the de-identification standard and methodologies established under the Health Insurance Portability and Accountability Act (HIPAA) regulations, and report some potential policies to address those concerns that were discussed at a recent workshop attended by industry, consumer, academic and research stakeholders.

TARGET AUDIENCE:

The target audience includes researchers, industry stakeholders, policy makers and consumer advocates concerned about preserving the ability to use HIPAA de-identified data for a range of important secondary uses.

SCOPE:

HIPAA sets forth methodologies for de-identifying health data; once such data are de-identified, they are no longer subject to HIPAA regulations and can be used for any purpose. Concerns have been raised about the sufficiency of HIPAA de-identification methodologies, the lack of legal accountability for unauthorized re-identification of de-identified data, and insufficient public transparency about de-identified data uses. Although there is little published evidence of the re-identification of properly de-identified datasets, such concerns appear to be increasing. This article discusses policy proposals intended to address de-identification concerns while maintaining de-identification as an effective tool for protecting privacy and preserving the ability to leverage health data for secondary purposes.

PMID:
22735615
PMCID:
PMC3555317
DOI:
10.1136/amiajnl-2012-000936
[Indexed for MEDLINE]
Free PMC Article

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