Medical data sharing and synthetic clinical data generation – maximizing biomedical resource utilization and minimizing participant re-identification risks

The sensitive nature of electronic health records (EHR) and wearable data presents challenges in sharing biomedical resources while minimizing re-identification risks. This article introduces an end-to-end, titratable pipeline that generates privacy-preserving "digital twin" datasets from complex EHR and wearable-device records (Apple Watch data from 3029 participants) using DataSifter and Synthetic Data Vault (SDV) methods. Various obfuscation levels were applied (DataSifter: small, medium, large; SDV: CTGAN, Gaussian Copula) and benchmarked using utility (statistical fidelity, machine learning performance) and privacy (re-identification risk, detection likelihood) metrics. The highest-obfuscation DataSifter twin delivered the strongest privacy protection (0.83) while preserving key statistical and predictive signals (83.1% confidence interval overlap in regression models), outperforming SDV, particularly for longitudinal data. Despite declining performance in machine learning tasks with higher obfuscation, utility was generally preserved. The study underscores the importance of digital twin datasets and highlights DataSifter's adaptability in privacy-utility trade-offs, advocating its utility for secure data sharing.

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Publication Details

Journal
npj Digital Medicine
Published
2025-08-16
DOI
https://doi.org/10.1038/s41746-025-01935-1
Citations
3
Primary Topic
Privacy-Preserving Technologies in Data
Type
article
Field-Weighted Citation Impact
7.44

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article

Medical data sharing and synthetic clinical data generation – maximizing biomedical resource utilization and minimizing participant re-identification risks

Simeone Marino, Michael Burns, Ivo D. Dinov, Ruth Cassidy et al.
3 citations
npj Digital Medicine
Privacy-Preserving Technologies in Data
7.44
article

Medical data sharing and synthetic clinical data generation – maximizing biomedical resource utilization and minimizing participant re-identification risks

Simeone Marino, Michael Burns, Ivo D. Dinov, Ruth Cassidy, Jérôme Nanni, B. Jaganatha Pandian, Anik Sinha, T Donna Chen, Yuxuan Wang, Yipeng Liu, Ming‐Yi Tang, Yuan Yuan
article en
3 citations

Abstract

The sensitive nature of electronic health records (EHR) and wearable data presents challenges in sharing biomedical resources while minimizing re-identification risks. This article introduces an end-to-end, titratable pipeline that generates privacy-preserving "digital twin" datasets from complex EHR and wearable-device records (Apple Watch data from 3029 participants) using DataSifter and Synthetic Data Vault (SDV) methods. Various obfuscation levels were applied (DataSifter: small, medium, large; SDV: CTGAN, Gaussian Copula) and benchmarked using utility (statistical fidelity, machine learning performance) and privacy (re-identification risk, detection likelihood) metrics. The highest-obfuscation DataSifter twin delivered the strongest privacy protection (0.83) while preserving key statistical and predictive signals (83.1% confidence interval overlap in regression models), outperforming SDV, particularly for longitudinal data. Despite declining performance in machine learning tasks with higher obfuscation, utility was generally preserved. The study underscores the importance of digital twin datasets and highlights DataSifter's adaptability in privacy-utility trade-offs, advocating its utility for secure data sharing.

npj Digital MedicineVol. 8(1)
Cornell University (US), University of Michigan (US), Weill Cornell Medicine (US)
National Science Foundation, National Institutes of Health
Openalex Percentile: Top 3%
Privacy-Preserving Technologies in Data
7.44
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