Public-private entanglements in making health data accessible
Author(s): Heidrun Åm
Wednesday 14 | 14:40-15:00
Room: TP45
Session: Untangling the entangled processes of digitization and privatization
In welfare states, public health services collect data in mass for governance purposes. For example, Norwegian health authorities created the ‘National Patient Registry (NPR)’ in the 1990ies because of a change in health sector governance towards activity-based financing which created the need for getting hold of information on treatments, patients, length of stay, etc. Today, the NPR and other mandatory health registries in Nordic states are world leading in terms of their amount of valuable data. The aggregated health data in the NPR and the other registries constitute a collective data body of the welfare state. They are good examples for states’ ability to mint data (Fourcade & Gordon 2020).
In—what Tupasela, Snell, and Tarkkala (2020) coined—the ‘Nordic data imaginary,’ health data has become entangled with visions for economic growth in recent years. Making health data easier accessible is part of the work efforts constituting this imaginary. An important element in this work is to centralize access to health data. The basic idea behind centralized health data access bodies is creating one-stop-shops, that is, single access points to health data when used for secondary purposes. Such efforts are also being made at the European level, around the creation of a European Health Data Space.
What do actors consider as being of public value when it comes to making public health data easier accessible? Norway has a long tradition of the collective governance of resources, exemplified by its approach to oil or renewable power (see for example Ryggvik 2009 or Thue 2003). In addition, the Nordic welfare states are built on ideas of solidarity, equity, universalism and decommodification (Andreassen, Kaun and Nikunen 2021), which would lead us to expect a focus on public value beyond economic value. Do we find ways in which Nordic countries secure benefit sharing from making public health data available? With a focus on Norway, I will in this presentation elicit how public-private boundaries are enacted in these developments. How is it negotiated when the private enters public resources, for example by private infrastructures facilitating health data collections, or by private actors tapping into health data registers?