Evidence map›Paper›PMID 25911674›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2015

R-U policy frontiers for health data de-identification.

Weiyi Xia, Raymond Heatherly, Xiaofeng Ding, Jiuyong Li, Bradley A Malin

Registry-linked trialAbstract read
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05277116 (The Electronic Medical Records and GEnomics), which is not on this map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT05277116 naactive not recruitingnot on this mapstarted 2022, after this paper: background citation

The Electronic Medical Records and GEnomics (eMERGE) Network Genomic Risk Assessment

TypeinterventionalSponsorVanderbilt University Medical CenterRan2022 to 2030Enrolled26,877ConditionsGenetic DiseaseArmsGenome Informed Risk Assessment (GIRA) report
3 · Its place in the literature

Who cites it

11 citing papers in PubMed.

  1. The Costs of Anonymization: Case Study Using Clinical Data.Journal of medical Internet research · 2024
    Article
  2. Managing re-identification risks while providing access to the All of Us research program.Journal of the American Medical Informatics Association : JAMIA · 2023
    Article
  3. Article
  4. Enabling realistic health data re-identification risk assessment through adversarial modeling.Journal of the American Medical Informatics Association : JAMIA · 2021
    Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Privacy Policy and Technology in Biomedical Data Science.Annual review of biomedical data science · 2018
    Article
  10. Review
  11. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Weiyi XiaDepartment of Electrical Engineering & Computer Science, Vanderbilt University, Nashville, TN, USA weiyi.xia@vanderbilt.edu.
Raymond HeatherlyDepartment of Biomedical Informatics, Vanderbilt University, Nashville, TN, USA.
Xiaofeng DingHuazhong University of Science and Technology, Wuhan, China.
Jiuyong LiSchool of Information Technology and Mathematical Sciences, University of South Australia, Mawson Lakes, South Australia, Australia.
Bradley A MalinDepartment of Electrical Engineering & Computer Science, Vanderbilt University, Nashville, TN, USA Department of Biomedical Informatics, Vanderbilt University, Nashville, TN, USA.

Funding

Mayo Clinic Center for Translational Science ActivitiesUL1TR000135 · NCATS · MAYO CLINIC ROCHESTER · PI KHOSLA, SUNDEEP · 2012 to 2015
$41.2M
Vanderbilt Genome-Electronic Records ProjectU01HG004603 · NHGRI · VANDERBILT UNIVERSITY · PI RODEN, DAN M · 2007 to 2011
$7.3M
eMERGE Coordinating Center - Administrative SupplementU01HG006385 · NHGRI · VANDERBILT UNIVERSITY · PI HARRIS, PAUL A. · 2011 to 2014
$5.4M
Vanderbilt Genome Electronic Records ProjectU01HG006378 · NHGRI · VANDERBILT UNIVERSITY · PI RODEN, DAN M · 2011 to 2014
$4.0M
A Risk Management Framework for Identifiability in Genomics ResearchR01HG006844 · NHGRI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI MALIN, BRADLEY A. · 2012 to 2019
$2.4M
Technologies to Enable Privacy in Biomedical DatabanksR01LM009989 · NLM · VANDERBILT UNIVERSITY MEDICAL CENTER · PI MALIN, BRADLEY A. · 2009 to 2014
$1.6M
NCATS NIH HHS UL1 TR000135NCATS NIH HHS UL1TR000135NHGRI NIH HHS R01 HG006844NHGRI NIH HHS R01HG006844NHGRI NIH HHS U01 HG004603NHGRI NIH HHS U01 HG006378NHGRI NIH HHS U01HG006378NHGRI NIH HHS U01 HG006385NHGRI NIH HHS U01HG006385NLM NIH HHS R01 LM009989
6 · The paper itself

Abstract

objectiveThe Health Insurance Portability and Accountability Act Privacy Rule enables healthcare organizations to share de-identified data via two routes. They can either 1) show re-identification risk is small (e.g., via a formal model, such as k-anonymity) with respect to an anticipated recipient or 2) apply a rule-based policy (i.e., Safe Harbor) that enumerates attributes to be altered (e.g., dates to years). The latter is often invoked because it is interpretable, but it fails to tailor protections to the capabilities of the recipient. The paper shows rule-based policies can be mapped to a utility (U) and re-identification risk (R) space, which can be searched for a collection, or frontier, of policies that systematically trade off between these goals.

methodsWe extend an algorithm to efficiently compose an R-U frontier using a lattice of policy options. Risk is proportional to the number of patients to which a record corresponds, while utility is proportional to similarity of the original and de-identified distribution. We allow our method to search 20 000 rule-based policies (out of 2(700)) and compare the resulting frontier with k-anonymous solutions and Safe Harbor using the demographics of 10 U.S. states.

resultsThe results demonstrate the rule-based frontier 1) consists, on average, of 5000 policies, 2% of which enable better utility with less risk than Safe Harbor and 2) the policies cover a broader spectrum of utility and risk than k-anonymity frontiers.

conclusionsR-U frontiers of de-identification policies can be discovered efficiently, allowing healthcare organizations to tailor protections to anticipated needs and trustworthiness of recipients.

Indexed as

AlgorithmsComputer SecurityConfidentialityDatasets as TopicDemographyHealth Insurance Portability and Accountability ActHumansUnited Statesde-identificationoptimizationpolicyprivacysecondary use

Identifiers

PMID25911674
PMCPMC4986667

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.