The Making of Digital Health: Between Visions and Realizations

Ulrike Felt, Susanne Öchsner, Robin Rae

The digitization of health has been high on policy agendas, promising to become the solution for many of the challenges that Europe’s health care systems are facing. While the visions of future digital health solutions are rather promising, it is important to also attend to the challenges their realization faces. In drawing on our experience in the large-scale Horizon 2020 project Smart4Health this paper traces some of the tensions between visions of digital health and the realization of these through the development of a specific sociotechnical infrastructure – a health data platform. After briefly introducing the project, we first explore what the creation of this digital health infrastructure as socio-technical arrangement entails, if it is done in a way that allows for the integration of future users’ values, needs, and concerns. Taking a co-creation approach that integrates potential users into processes of infrastructuring, means to enable future users to make creative contributions and to be involved in development choices, drawing on their expectations, knowledges, and experiences. In a next step, we discuss how users are imagined and inscribed into this health data infrastructure, how design choices might bring specific kinds of inclusion and exclusion into being, and invite the reader to consider questions of justice and inequality. Finally, we turn to the potential implications of a data-driven platform vision for our understanding of health and bodies, for new practices of engaging with one's body and health, and new responsibilities when it comes to caring for one’s health (data). We conclude that building a health data platform is a socio-technical endeavour and processes of envisioning digital health are always connected to questions of responsibility. Problems and solutions co-emerge in the process of digitizing health, shaping each other. Digital health has to be understood as a sociotechnical transformation process which redefines what health and illness mean, which brings into being new roles and responsibilities, potentially reinforcing existing inequalities.

Institut für Wissenschafts- und Technikforschung
ÖFOS 2012
509017 Wissenschaftsforschung, 509025 Technikforschung
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