ArticleJournal of the American Medical Informatics Association : JAMIA2023
Assessing the impact of privacy-preserving record linkage on record overlap and patient demographic and clinical characteristics in PCORnet®, the National Patient-Centered Clinical Research Network.
Article in Journal of the American Medical Informatics Association : JAMIA, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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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.
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Who cites it
17 citing papers in PubMed.
- Opportunities and Challenges in Using National EHR Networks for AI in Learning Health Systems.Learning health systems · 2026Article
- Accuracy of an XGBoost-based privacy preserving record linkage system compared with an electronic health record patient matching module in identifying patients shared between nearby academic health centers.Journal of the American Medical Informatics Association : JAMIA · 2026Article
- Partnerships With Health Plans to Link Data From Electronic Health Records to Claims for Research Using PCORnet®.Medical care · 2026Article
- Re-identification risk for common privacy preserving patient matching strategies when shared with de-identified demographics.Journal of the American Medical Informatics Association : JAMIA · 2026Article
- How PCORnet® Could Advance Postmarket Evidence Generation.Medical care · 2026Article
- Linking clinical trial data with real-world data for enhanced clinical evidence generation: methodological considerations and recommendations.Frontiers in pharmacology · 2026Review
- Linking patient records at scale with a hybrid approach combining contrastive learning and deterministic rules.Biology methods & protocols · 2026Article
- Crossing borders securely: synthetic data and federated networks for privacy-preserving access to real-world data and emerging use cases.NPJ digital medicine · 2025Review
- Combining Real-World and Clinical Trial Data Through Privacy-Preserving Record Linkage: Opportunities and Challenges-A Narrative Review.Health science reports · 2025Article
- Data linkage multiplies research insights across diverse healthcare sectors.Communications medicine · 2025Review
- Article
- Generating Real-World Evidence From the Excellence Network in Rheumatology.Pharmacoepidemiology and drug safety · 2024Article
- Privacy preserving record linkage for public health action: opportunities and challenges.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Clinical Research Informatics: a Decade-in-Review.Yearbook of medical informatics · 2024Review
- Understanding enterprise data warehouses to support clinical and translational research: impact, sustainability, demand management, and accessibility.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Article
- Privacy-preserving record linkage across disparate institutions and datasets to enable a learning health system: The national COVID cohort collaborative (N3C) experience.Learning health systems · 2024Article
Corrections and comments
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Authors and funding
18 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThis article describes the implementation of a privacy-preserving record linkage (PPRL) solution across PCORnet®, the National Patient-Centered Clinical Research Network. MATERIAL AND
methodsUsing a PPRL solution from Datavant, we quantified the degree of patient overlap across the network and report a de-duplicated analysis of the demographic and clinical characteristics of the PCORnet population.
resultsThere were ∼170M patient records across the responding Network Partners, with ∼138M (81%) of those corresponding to a unique patient. 82.1% of patients were found in a single partner and 14.7% were in 2. The percentage overlap between Partners ranged between 0% and 80% with a median of 0%. Linking patients' electronic health records with claims increased disease prevalence in every clinical characteristic, ranging between 63% and 173%. DISCUSSION: The overlap between Partners was variable and depended on timeframe. However, patient data linkage changed the prevalence profile of the PCORnet patient population.
conclusionsThis project was one of the largest linkage efforts of its kind and demonstrates the potential value of record linkage. Linkage between Partners may be most useful in cases where there is geographic proximity between Partners, an expectation that potential linkage Partners will be able to fill gaps in data, or a longer study timeframe.
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