A solidarity paradox – welfare state data in global health data economy

Abstract

Nordic welfare states have well institutionalised practises of gathering health and social wellbeing data from their citizens. The establishment of population registers coincided with the building of welfare state institutions and a social contract relying on solidarity. During the last decade, the significance of Nordic registers and health data has increased and they have become sources of economic value. Recent policies expect registers, health data and biobanks to attract international investments, making Nordic countries world-leaders in the global health data economy. In this article we question the conditions and boundaries of solidarity in the emerging data-driven health economy. We argue that the logics of welfare state and data-driven health economy create a paradox – the data economy is not possible without the welfare state data regime, but the logic of data-driven health economy contradicts the value bases of the welfare state data regime and therefore the justifications for data gathering and use become questionable. We develop the concept of solidarization to describe the process by which individuals are expected to behave in a solidaristic way to support data gathering and related policy processes. We demonstrate the solidarity paradox through a recent legislative and data infrastructure reform in Finland and discuss it in relation to academic literature on solidarity.

Choreographing for public value in digital health?

“…When governing for public value, states or supra-state entities such as the EU tend to act in the much-touted role of the ‘entrepreneurial state’ (Mazzucato, 2013), but often with very different outcomes depending on what objective this state entrepreneurship is directed to. Driven to its extreme, a publicly supported ‘data-driven health economy’ (Snell et al, 2021, p. 1) transforms public assets into private ownership. The UK, for instance, has started to sell some of its NHS public health records and data to commercial businesses (Vezyridis and Timmons, 2021), and this dynamic has extended into states with a strong tradition of choreographing public health on solidaristic principles (Snell et al, 2021).…”

“…Driven to its extreme, a publicly supported ‘data-driven health economy’ (Snell et al, 2021, p. 1) transforms public assets into private ownership. The UK, for instance, has started to sell some of its NHS public health records and data to commercial businesses (Vezyridis and Timmons, 2021), and this dynamic has extended into states with a strong tradition of choreographing public health on solidaristic principles (Snell et al, 2021). Given these dynamics, (how) can public value be safeguarded in the future evolution of digital public health?…”