Abstract

Data sharing has become a major political and scientific pre-occupation during recent years. The European Health Data Space (EHDS) initiative in Europe, as well as the recent US digital health initiative have garnered major interest by investors and companies alike who are seeking to gain market share in a growing industry boosted By AI and seemingly endless promises of health and wealth.

In this talk I present research findings from the Finnish context where the sharing of biobank samples and health and social welfare data has been underway for many years now. In many ways the setting-up of Findata, the Finnish permit authority which grants permits and facilitates access to social and healthcare data has served as a template for the setting-up of the EHDS. The early years of operation and setting-up of Findata, suggest, however, that there exist a multitude of different types of organizations which collect and share data. These organizations have very different capacities to support data sharing activities, which can have significant impact on the time it takes to access data. These cautionary tales of data work in practice serve to illustrate some of the difficulties associated with data sharing and the setting-up of data sharing infrastructures in practice

About the speaker

Aaro Tupasela, senior research fellow, Department of Sociology, University of Helsinki

Aaro Tupasela works as a senior research fellow within the discipline of sociology. He specialises in science and technology studies with an interest in AI, biomedical research and knowledge production systems.

Free of charge - All are welcome