Digital Health Politics: The Role of Framing and Politicization in an Increasingly Technical Field

This paper examines how digitalization reshapes power dynamics within EU healthcare, impacting not only the traditional balance of power between member states and the European Commission but also interactions between public and private actors. Drawing on a two-year research project that includes documentary analysis and 24 interviews, this study explores two central cases: the interconnection of contact-tracing applications during COVID-19 and the establishment of the European Health Data Space (EHDS). The paper first analyzes the narratives surrounding the EHDS, particularly its framing as a neutral, ‘convenient’ policy tool designed to benefit both citizens and researchers. This portrayal facilitates a ‘loose consensus’ around the EHDS and its central goal of interoperability, defined as the capacity for different IT systems to interact, even when developed by diverse entities. The EU has strategically emphasized this technical aspect of interoperability to cultivate broad, non-specific support. Achieving interoperability in healthcare is seen as desirable for a range of reasons, which may sometimes be contradictory. The analysis also considers how the COVID-19 crisis accelerated the shift from EU soft-law guidance to binding regulations in digital health. Specifically, it examines the role of the COVID-19 crisis in reshaping narratives about the EU’s role in promoting digital health interoperability. The paper then delves into issues that became particularly politicized within these case studies, focusing on data centralization in contact-tracing applications and the opt-in/opt-out mechanisms within the EHDS. It examines the diverse political motivations behind EU actors’ positions on these issues, as well as the influence of tech giants on policy decisions. Importantly, the paper addresses why certain critical issues became politicized in these debates, while others did not, and explores the identities of the actors who ultimately shape policies impacting data privacy and usability. Often, these decisions are made in technocratic settings where both decision-makers and citizens’ representatives have limited visibility. Overall, this study reveals how digitalization is transforming EU healthcare politics by expanding the EU’s authority and introducing new stakeholders. These include tech corporations, digital rights organizations, and IT experts who develop EU technical infrastructure and standards, often in relative isolation from traditional healthcare policy actors. These changes suggest an evolving political landscape in which healthcare increasingly intersects with digital policy. This observation highlights the need for broader comparative research on the impact of digitalization across policy domains.