The Nordic data imaginary

Abstract

The Nordic countries aim to have 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 can be attributed to 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. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This 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 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.

Business Data Sharing through Data Marketplaces: A Systematic Literature Review

“…Next, governance, the most-discussed category in this domain, broadly refers to governing processes by certain actors (e.g., data marketplace operators) via several mechanisms, such as norms or power [105]. Examples of governance topics include discussion about policies and strategies in data marketplaces [106], a reference model for data protection for policymakers [107], and trust-creating mechanisms to enhance perceived market trustworthiness [108]. Other topics analyze social structures [109] and facilitating factors of data trading in stolen data markets [110].…”

Anticipatory Governance in Biobanking: Security and Risk Management in Digital Health

“…Medical and pharmaceutical research drawing on a combination of basic health data, omics data, and lifestyle data shall lead to more personalised medical treatment of individuals and a better prediction of diseases. Biobanking is thus presented of as a key step towards personalised medicine (Ntai et al, 2014;Prainsack, 2017) and as crucial to the bioeconomy (Hauskeller & Beltrame, 2016) and health data economy (Tupasela et al, 2020).…”

A code for care and control: The PIN as an operator of interoperability in the Nordic welfare state

“…Recently, a new milieu for the use of the PIN and this specific capacity has emerged throughout the Nordic countries. Over the past decade and a half, policymakers, top government officials, leading regional public administrators, and academic experts in biomedicine, healthcare, and innovation policy have become enthusiastic about the possibilities associated with data mining of public population, healthcare, and social service registers (Bauer, 2014; Hoeyer, 2019; Tarkkala, Helén, and Snell, 2019; Tupasela, Snell, and Tarkkala, 2020). Pursuant to expectations, visions, and the ethos of global advocates of ‘precision medicine’ and a data-driven society (e.g.…”

“…Biomedical research, especially medical genomics and biobanks, was the initial driver of the new policy in Finland, but economic viewpoints and justifications have become dominant in the policy rationale (Tarkkala, Helén, and Snell, 2019; Tupasela, Snell, and Tarkkala, 2020; on a similar tendency in Denmark, see Hoeyer, 2019). Policy documents, plans, reports, and ‘roadmaps’ (e.g.…”