Dataset Information

Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule.

ABSTRACT: Healthcare organizations must de-identify patient records before sharing data. Many organizations rely on the Safe Harbor Standard of the HIPAA Privacy Rule, which enumerates 18 identifiers that must be suppressed (eg, ages over 89). An alternative model in the Privacy Rule, known as the Statistical Standard, can facilitate the sharing of more detailed data, but is rarely applied because of a lack of published methodologies. The authors propose an intuitive approach to de-identifying patient demographics in accordance with the Statistical Standard.The authors conduct an analysis of the demographics of patient cohorts in five medical centers developed for the NIH-sponsored Electronic Medical Records and Genomics network, with respect to the US census. They report the re-identification risk of patient demographics disclosed according to the Safe Harbor policy and the relative risk rate for sharing such information via alternative policies.The re-identification risk of Safe Harbor demographics ranged from 0.01% to 0.19%. The findings show alternative de-identification models can be created with risks no greater than Safe Harbor. The authors illustrate that the disclosure of patient ages over the age of 89 is possible when other features are reduced in granularity.The de-identification approach described in this paper was evaluated with demographic data only and should be evaluated with other potential identifiers.Alternative de-identification policies to the Safe Harbor model can be derived for patient demographics to enable the disclosure of values that were previously suppressed. The method is generalizable to any environment in which population statistics are available.

SUBMITTER: Malin B

PROVIDER: S-EPMC3005867 | biostudies-other | 2011 Jan-Feb

REPOSITORIES: biostudies-other

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Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule.

Malin Bradley B Benitez Kathleen K Masys Daniel D

Journal of the American Medical Informatics Association : JAMIA 20110101 1

<h4>Objective</h4>Healthcare organizations must de-identify patient records before sharing data. Many organizations rely on the Safe Harbor Standard of the HIPAA Privacy Rule, which enumerates 18 identifiers that must be suppressed (eg, ages over 89). An alternative model in the Privacy Rule, known as the Statistical Standard, can facilitate the sharing of more detailed data, but is rarely applied because of a lack of published methodologies. The authors propose an intuitive approach to de-ident ...[more]

PMID: 21169618

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Project description:BackgroundA considerable amount of various types of data have been collected during the COVID-19 pandemic, the analysis and understanding of which have been indispensable for curbing the spread of the disease. As the pandemic moves to an endemic state, the data collected during the pandemic will continue to be rich sources for further studying and understanding the impacts of the pandemic on various aspects of our society. On the other hand, naïve release and sharing of the information can be associated with serious privacy concerns.MethodsWe use three common but distinct data types collected during the pandemic (case surveillance tabular data, case location data, and contact tracing networks) to illustrate the publication and sharing of granular information and individual-level pandemic data in a privacy-preserving manner. We leverage and build upon the concept of differential privacy to generate and release privacy-preserving data for each data type. We investigate the inferential utility of privacy-preserving information through simulation studies at different levels of privacy guarantees and demonstrate the approaches in real-life data. All the approaches employed in the study are straightforward to apply.ResultsThe empirical studies in all three data cases suggest that privacy-preserving results based on the differentially privately sanitized data can be similar to the original results at a reasonably small privacy loss ([Formula: see text]). Statistical inferences based on sanitized data using the multiple synthesis technique also appear valid, with nominal coverage of 95% confidence intervals when there is no noticeable bias in point estimation. When [Formula: see text] and the sample size is not large enough, some privacy-preserving results are subject to bias, partially due to the bounding applied to sanitized data as a post-processing step to satisfy practical data constraints.ConclusionsOur study generates statistical evidence on the practical feasibility of sharing pandemic data with privacy guarantees and on how to balance the statistical utility of released information during this process.

Project description:BACKGROUND:Sharing research data uses resources effectively; enables large, diverse data sets; and supports rigor and reproducibility. However, sharing such data increases privacy risks for participants who may be re-identified by linking study data to outside data sets. These risks have been investigated for genetic and medical records but rarely for environmental data. OBJECTIVES:We evaluated how data in environmental health (EH) studies may be vulnerable to linkage and we investigated, in a case study, whether environmental measurements could contribute to inferring latent categories (e.g., geographic location), which increases privacy risks. METHODS:We identified 12 prominent EH studies, reviewed the data types collected, and evaluated the availability of outside data sets that overlap with study data. With data from the Household Exposure Study in California and Massachusetts and the Green Housing Study in Boston, Massachusetts, and Cincinnati, Ohio, we used k-means clustering and principal component analysis to investigate whether participants' region of residence could be inferred from measurements of chemicals in household air and dust. RESULTS:All 12 studies included at least two of five data types that overlap with outside data sets: geographic location (9 studies), medical data (9 studies), occupation (10 studies), housing characteristics (10 studies), and genetic data (7 studies). In our cluster analysis, participants' region of residence could be inferred with 80%-98% accuracy using environmental measurements with original laboratory reporting limits. DISCUSSION:EH studies frequently include data that are vulnerable to linkage with voter lists, tax and real estate data, professional licensing lists, and ancestry websites, and exposure measurements may be used to identify subgroup membership, increasing likelihood of linkage. Thus, unsupervised sharing of EH research data potentially raises substantial privacy risks. Empirical research can help characterize risks and evaluate technical solutions. Our findings reinforce the need for legal and policy protections to shield participants from potential harms of re-identification from data sharing. https://doi.org/10.1289/EHP4817.

Dataset Information

Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule.

Publications

Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule.

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