Thursday, 20 February 2020

Reconfiguring National Data Infrastructures through the Nordic Data Imaginary

Aaro Tupasela, Karoliina Snell, Heta Tarkkala
Big Data & Society 7(1), First published: February 20th, 2020
Keywords: big data, health data, health policy, platform economy, Nordic data gold mine, data imaginary, sustainability

Data has become a central feature of economic development and system of production. The range of companies that source data from their users on a daily basis has become a mainstay of ethical and legal discussions surrounding data relations between the sources, collectors and users of that data. In our article just published in Big Data & Society, we focus on the development and implementation of national data infrastructures within the Nordic countries.

The Nordic countries aim to establish a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon is the result of the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision-making and improve the health and living conditions of the population. These massive collections of data have remained somewhat separate and connecting data between different sources has taken time and effort for researchers to accomplish due to ethical and legal constraints associated with such practices. With the explosive growth in utilizing big data in research and development, however, these data infrastructures are being re-purposed within the Nordic countries.

Recently, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where welfare state data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This model, which the private sector has given birth to, has become a model for national projects to capitalize on population data. Our article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This, we argue, raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable ‘full-scale utilization’ of health and welfare data.