Table 2 Recommendations

Improvement of policies and structures: Data protection policies should be centered on a context-sensitive understanding of anonymity. Moreover, there should be clear descriptions of how to evaluate whether data is anonymous in specific contexts. Ideally, policies should be uniform across different regions to enable cross-border data sharing. To achieve this, it can be beneficial to establish large entities specialized on anonymous data sharing. Recent standardization efforts and developments, like the EHDS, align with these recommendations.

Development of future research agendas: Research on data protection techniques should include studies on how the degree of anonymity can be robustly assessed. Moreover, research is needed that supports such assessments in specific contexts, where multiple protection methods are usually combined. This is crucial not only for anonymization methods but also for further privacy-enhancing technologies. Additionally, research is needed on techniques suited for data with very specific properties, such as data from patients with rare diseases, to improve the availability of anonymized data for further disease areas.