The Nordic welfare states have always been systematically collecting large amounts of population data (Bauer 2014, Tøndel 2014), including health and welfare data. Traditionally, this information was meant for governance and improving public health. In recent years, some Nordic countries, such as Finland, have positioned themselves in the global health data economy to attract investments (Tupasela, Snell, and Tarkkala 2020). This development includes efforts in building large national health infrastructures, such as Findata in Finland (Snell, Tarkkala and Tupasela 2021), Denmark’s National genome center (Jensen and Svendsen 2021), or a Health analytics platform in Norway (Åm, Frøyhaug and Tøndel 2021). There are multiple ways health data can become valuable (Fiske, Degelsegger-Márques, Marsteurer and Prainsack 2022). The potential to derive financial profits from health data may challenge relations between citizens and the welfare state. The question emerges how publics are considered, and how efforts, that increase the availability of health data, are for the benefit of society and of public value. There is little civic engagement in this topic, but the building of health infrastructures has caused some controversies. In this panel, we invite contributions on the issue of public value and health data in the Nordic countries. We invite empirical and theoretical contributions addressing questions and topics such as:
- How do relations between citizens, Nordic welfare states, and marked actors change through new ‘data logistics’ (Tupasela 2023)’ in health care?
- What and who is driving developments towards a health data economy in Nordic countries? What are the justifications? Which benefit-sharing-models are envisioned (if any)?
- How do developments in health data governance build on or morph values expressed in the Nordic model concerning ‘community’ and ‘collectivity’? What are the similarities and differences among Nordic countries as regards public values and health data governance?
- How does the policy work on a European Health Data Space influence health data governance in the Nordic countries, and vice versa?
- How is policy learning from biobank governance in the Nordic countries translated into the new health data economy, regarding issues of data ownership, relations between samples and data, consent and opt-out, or public purpose evaluations
- What new roles and forms do ‘quality indicators’ take in this larger picture of the health data economy and datafication?
- Definitions and conceptualizations of public value and social benefits of health data in theory and practice
Organizers: Heidrun Åm, Lotte Groth Jensen, Karoliina Snell, Aaro M Tupasela, and Heta Tarkkala
For more information about the conference see conference website: https://www.sv.uio.no/tik/english/research/news-and-events/events/conferences/2023/nordic-sts/
Abstract submission, see: https://www.sv.uio.no/tik/english/research/news-and-events/events/conferences/2023/nordic-sts/accepted-panels.html