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

Building public trust in uses of Health Insurance Portability and Accountability Act... AbstractObjectives 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. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the American Medical Informatics Association Oxford University Press

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

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References (44)

Publisher
Oxford University Press
Copyright
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions
ISSN
1067-5027
eISSN
1527-974X
DOI
10.1136/amiajnl-2012-000936
pmid
22735615
Publisher site
See Article on Publisher Site

Abstract

AbstractObjectives 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.

Journal

Journal of the American Medical Informatics AssociationOxford University Press

Published: Jan 1, 2013

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