Evidence map›Paper›PMID 26567325›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2016

A multi-institution evaluation of clinical profile anonymization.

Raymond Heatherly, Luke V Rasmussen, Peggy L Peissig, Jennifer A Pacheco, Paul Harris, Joshua C Denny, Bradley A Malin

Registry-linked trialOpen access · bronzeAbstract readEvaluation StudyMulticenter Study
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2016. 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 6 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
2.3field-weighted citation impact, top 11% of its field
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

6 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.

  1. Pooled it
  2. Review
  3. Article
  4. Article
  5. Privacy Policy and Technology in Biomedical Data Science.Annual review of biomedical data science · 2018
    Article
  6. 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

7 authors at 3 institutions in 1 country.

Raymond HeatherlyDepartment of Biomedical Informatics, Vanderbilt University, Nashville, TN, USA.
Luke V RasmussenFeinberg School of Medicine, Northwestern University, Chicago, IL, USA.
Peggy L PeissigBiomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, WI, USA.
Jennifer A PachecoFeinberg School of Medicine, Northwestern University, Chicago, IL, USA.
Paul HarrisDepartment of Biomedical Informatics, Vanderbilt University, Nashville, TN, USA Department of Biomedical Engineering, Vanderbilt University, Nashville, TN, USA.
Joshua C DennyDepartment of Biomedical Informatics, Vanderbilt University, Nashville, TN, USA Department of Medicine, Vanderbilt University, Nashville, TN, USA.
Bradley A MalinDepartment of Biomedical Informatics, Vanderbilt University, Nashville, TN, USA Department of Electrical Engineering & Computer Science, Vanderbilt University, Nashville, TN, USA b.malin@vanderbilt.edu.
Vanderbilt University · USNorthwestern University · USMarshfield Clinic · US

Funding

Northwestern University Clinical and Translational Science Institute (NUCATS)UL1TR001422 · NCATS · NORTHWESTERN UNIVERSITY AT CHICAGO · PI D'AQUILA, RICHARD · 2015 to 2023
$56.8M
Mayo Clinic Center for Translational Science ActivitiesUL1TR000135 · NCATS · MAYO CLINIC ROCHESTER · PI KHOSLA, SUNDEEP · 2012 to 2015
$41.2M
Multidisciplinary Clinical and Translational Science (MCTS) Program (UL1)UL1TR000150 · NCATS · NORTHWESTERN UNIVERSITY AT CHICAGO · PI LLOYD-JONES, DONALD M · 2012 to 2013
$10.1M
From GWAS to PheWAS: Scanning the EMR Phenome for Gene-disease AssociationsR01LM010685 · NLM · VANDERBILT UNIVERSITY MEDICAL CENTER · PI BASTARACHE, LISA · 2011 to 2022
$6.3M
National Infrastructure for Standardized and Portable EHR Phenotyping AlgorithmsR01GM105688 · NIGMS · WEILL MEDICAL COLL OF CORNELL UNIV · PI LUO, YUAN, PATHAK, JYOTISHMAN · 2013 to 2020
$5.7M
eMERGE Coordinating Center - Administrative SupplementU01HG006385 · NHGRI · VANDERBILT UNIVERSITY · PI HARRIS, PAUL A. · 2011 to 2014
$5.4M
A Personalized Genomic Medicine Pilot Program Using the NJgene eMERGE ExperienceU01HG006388 · NHGRI · NORTHWESTERN UNIVERSITY AT CHICAGO · PI CHISHOLM, REX L, SMITH, MAUREEN E · 2011 to 2014
$4.1M
IRIS: Incorporating Research Into SightU01HG006389 · NHGRI · ESSENTIA INSTITUTE OF RURAL HEALTH · PI MCCARTY, CATHERINE ANNE · 2011 to 2014
$4.1M
Genomic Medicine at Northwestern: Discovery and ImplementationU01HG008673 · NHGRI · NORTHWESTERN UNIVERSITY AT CHICAGO · PI CHISHOLM, REX L, SMITH, MAUREEN E · 2015 to 2019
$4.1M
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 8UL1TR000150-05NCATS NIH HHS UL1TR000135NCATS NIH HHS UL1 TR001422NHGRI NIH HHS R01 HG006844NHGRI NIH HHS R01HG006844NHGRI NIH HHS U01 HG006378NHGRI NIH HHS U01HG006378NHGRI NIH HHS U01 HG006385NHGRI NIH HHS U01HG006385NHGRI NIH HHS U01HG006388NHGRI NIH HHS U01HG006389NHGRI NIH HHS U01 HG008673NIGMS NIH HHS R01 GM105688NIGMS NIH HHS R01GM105688NLM NIH HHS R01 LM009989NLM NIH HHS R01LM010685
6 · The paper itself

Abstract

BACKGROUND AND

objectiveThere is an increasing desire to share de-identified electronic health records (EHRs) for secondary uses, but there are concerns that clinical terms can be exploited to compromise patient identities. Anonymization algorithms mitigate such threats while enabling novel discoveries, but their evaluation has been limited to single institutions. Here, we study how an existing clinical profile anonymization fares at multiple medical centers.

methodsWe apply a state-of-the-artk-anonymization algorithm, withkset to the standard value 5, to the International Classification of Disease, ninth edition codes for patients in a hypothyroidism association study at three medical centers: Marshfield Clinic, Northwestern University, and Vanderbilt University. We assess utility when anonymizing at three population levels: all patients in 1) the EHR system; 2) the biorepository; and 3) a hypothyroidism study. We evaluate utility using 1) changes to the number included in the dataset, 2) number of codes included, and 3) regions generalization and suppression were required.

resultsOur findings yield several notable results. First, we show that anonymizing in the context of the entire EHR yields a significantly greater quantity of data by reducing the amount of generalized regions from ∼15% to ∼0.5%. Second, ∼70% of codes that needed generalization only generalized two or three codes in the largest anonymization.

conclusionsSharing large volumes of clinical data in support of phenome-wide association studies is possible while safeguarding privacy to the underlying individuals.

Indexed as

Data AnonymizationElectronic Health RecordsInformation DisseminationConfidentialityHumansHypothyroidismInternational Classification of DiseasesOrganizational Case Studiesanonymizationclinical codesgeneralizationprivacysecondary use

Identifiers

PMID26567325
PMCPMC4954623
OpenAlexW2241733288

What OpenQuestion holds

Textmetadata
Read underepoch 390

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.