A qualitative comparison of data infrastructures for COVID-19 health-related data: lessons for the European Health Data Space

The COVID-19 pandemic has represented the first global health emergency to be tackled through widespread data collection via a broad array of digital health technologies. Throughout Europe, data infrastructures for the acquisition, processing, and management of COVID-19 data were either implemented ex novo or “repurposed” towards this end. Analysing and comparing these data practices may hold great value to the upcoming European Health Data Space (EHDS) implementation. This study investigates the implementation of COVID-19 data infrastructures in four European countries – Italy, Sweden, Denmark, and England – to highlight challenges related to technical, ethical, and legal aspects of secondary uses of health-related data, particularly given the implementation of the EHDS. The data infrastructures included in the study reveal profound differences in design and data access practices, partly owing to the social contexts in which they were established. Challenges for data-sharing and integration include fragmentation of standards and requirements, ethical concerns about access by corporate actors to publicly collected datasets, and lack of robust legal bases. Investigating such infrastructures is crucial to probe challenges in data sharing practices within the European context and represents a revealing test case to anticipate opportunities and challenges in aligning current technical and legal standards with EHDS’ requirements.