A quantitative analysis of the use of anonymization in biomedical research

Anonymized biomedical data sharing faces several challenges. This systematic review analyzes 1084 PubMed-indexed studies (2018-2022) using anonymized biomedical data to quantify usage trends across geographic, regulatory, and cultural regions to identify effective approaches and inform implementation agendas. We identified a significant yearly increase in such studies with a slope of 2.16 articles per 100,000 when normalized against the total number of PubMed-indexed articles (p = 0.021). Most studies used data from the US, UK, and Australia (78.2%). This trend remained when normalized by country-specific research output. Cross-border sharing was rare (10.5% of studies). We identified twelve common data sources, primarily in the US (seven) and UK (three), including commercial (seven) and public entities (five). The prevalence of anonymization in the US, UK, and Australia suggests their practices could guide broader adoption. Rare cross-border anonymized data sharing and differences between countries with comparable regulations underscore the need for global standards.

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Publication Details

Journal
npj Digital Medicine
Published
2025-05-14
DOI
https://doi.org/10.1038/s41746-025-01644-9
Citations
1
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
1.88
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A quantitative analysis of the use of anonymization in biomedical research

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1 citations
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A quantitative analysis of the use of anonymization in biomedical research

Jérémie Despraz, Felix Nikolaus Wirth, Fabian Praßer, Bayrem Kaabachi, Thierry Meurers, Jean Louis Raisaro, Mehmed Halilovic, Vladimir Milićević, Karen Otte, Hammam Abu Attieh, Armin Müller, Farah Briki, Grigorios Papapostolou
article en
1 citations

Abstract

Anonymized biomedical data sharing faces several challenges. This systematic review analyzes 1084 PubMed-indexed studies (2018-2022) using anonymized biomedical data to quantify usage trends across geographic, regulatory, and cultural regions to identify effective approaches and inform implementation agendas. We identified a significant yearly increase in such studies with a slope of 2.16 articles per 100,000 when normalized against the total number of PubMed-indexed articles (p = 0.021). Most studies used data from the US, UK, and Australia (78.2%). This trend remained when normalized by country-specific research output. Cross-border sharing was rare (10.5% of studies). We identified twelve common data sources, primarily in the US (seven) and UK (three), including commercial (seven) and public entities (five). The prevalence of anonymization in the US, UK, and Australia suggests their practices could guide broader adoption. Rare cross-border anonymized data sharing and differences between countries with comparable regulations underscore the need for global standards.

npj Digital MedicineVol. 8(1)
Centre Hospitalier Universitaire Vaudois (CH), Berlin Institute of Health at Charité - Universitätsmedizin Berlin (DE)
Partnerships for the goals
Openalex Percentile: Top 16%
Ethics in Clinical Research
1.88
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