A quantitative analysis of the use of anonymization in biomedical research

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.