Selective visibility in datafied states: Examining the absence and presence of the European Health Data Space

Paper by Joseph Donia, Klaus Hoeyer, Thomas Reintjes and Luca Marelli: “In 2025, the European Union (EU) adopted the European Health Data Space Regulation (EHDS)–a new legal framework for health data. Beyond enabling patient-level and cross-border access to health data for medical care, the EHDS also establishes infrastructures and governance mechanisms oriented to promoting health data reuse by a broader range of actors, including policymakers and industry. A growing literature base suggests that the EHDS involves highly controversial elements, yet it received little attention during its development period. In this article, we examine what makes the EHDS absent in some places and present in others. We engage with perspectives from Science and Technology Studies to reflect on the concept of absence, including the basis for making claims about a particular policy initiative not receiving adequate attention. We do so from a cross-European perspective informed by interviews (N = 27) with participants across 10 European countries, participant observation, and analysis of media coverage in four EU member states. We suggest understanding how a policy initiative can be present in some places and absent in others through four kinds of ‘distance’: temporal, experiential, affective, and scalar. Approaching absence as a social achievement rather than a non-event points to potential avenues through which scholars and others might intervene…(More)”.