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Short abstract:

Health data governance promises balance between individual control and free flow of data. But is this balance tilting towards the latter? Recent changes in governance of Swiss health data initiatives are paradigmatic to show how novel imaginaries about their end use(rs) shape data infrastructure.

Long abstract:

It is common for policy documents and for the broader regulatory structure of health data projects and infrastructures to declare the objective to safeguard individual control over data and privacy, whilst at the same time facilitating data flows. The resulting balance between these two elements is not a stable one: novel imaginaries about their end use(rs) can shape how data infrastructures and their governance evolve.

In this presentation, I will consider how these mechanisms operate by presenting some examples from the Swiss context. Switzerland has traditionally ranked very high in respect to its healthcare system and biomedical innovation. Health data infrastructure, on the contrary, has traditionally lagged behind. Many initiatives were started to address this issue, seeking to improve data flows, but also promising to respect the importance of (individual) control that features prominently in societal debates on this issue. Drawing on exemplary changes in the governance of new data infrastructures (e.g. the Electronic Patient Dossier and the new federally organised cancer databases), I will reflect how initial promises of individual control have changed, justified by newly arisen necessities of (more) seamless data flows, and by imaginaries around international data infrastructure projects such as the European Health Data Space. In so doing, I will argue that novel imaginaries around ideas of data use(rs) and data sharing ‘move the goalpost’ of what the governance of health data infrastructure consider the ‘right’ balance between the often-antithetical promises they entail (e.g. individual control and free data flow).