Paper short abstract:

Examining Covid-19 data infrastructures in Italy, Sweden, Denmark, and the UK, this study explores technical, ethical, and legal challenges for data reuse. It assesses alignment with the EHDS proposal, covering legal considerations, value creation, corporate access, and social viability.

Paper long abstract:

The Covid-19 pandemic has represented the first global health emergency to be tackled through widespread data collection and processing via a broad array of digital health technologies. Throughout Europe, data infrastructures for the acquisition, processing, and management of Covid-19 health-related data were either implemented ex novo or ‘repurposed’ towards this end. This study targets the implementation of Covid-19 health data infrastructure in four European countries - Italy, Sweden, Denmark, and the UK (England) - to empirically investigate challenges related to technical, ethical, and legal aspects of secondary uses of Covid-19 health-related data and the integration of health data repositories, particularly in view of the proposed implementation of the European Health Data Space (EHDS). Key aspects probed in this regard include the technical design and data access requirements of the implemented infrastructures, legal and ethical considerations for secondary uses, the expectations for value creation underlying the infrastructures’ implementation, access by corporate actors, and the challenges that must be addressed to ensure prospective alignment with EHDS requirements and the social viability of the EHDS itself.