MAPPING HEALTH: HOW DANES EXPERIENCE THEIR DIGITAL HEALTH DATA

Abstract

This paper explores how Danish citizens experience digital health data and how these in turn affect their understanding of digital health data and their self-understanding as a patient. Previous research on digital health data examines primarily opportunities and challenges as well as structural effects concluding that having access to one's medical data is generally beneficial for patients but also comes with literacy challenges. The aim of this research is to look deeper into personal experiences with digital health data in order to understand what is at stake when people become digitally mapped patients and how experiences of empowerment, independence, perplexity, and doubt intermingle when reading one’s own health data. Taking a user’s view, the paper draws theoretically on the concept of ‘assemblage’ understanding digital health data as a complex nexus of user-data relationships. The empirical analysis draws on 16 in-depth purposefully sampled interviews that have been coded thematically. The primary analysis shows that digital health data creates unique, deeply emotional experiences that lead towards a variety of existential questions. Combining the theoretical lens with the empirical analysis this paper contributes with what we call ‘health assemblages’ that highlight the emerging relationships and personal emotional attachments users make with their digital health data. In conclusion, it can be stated that seeing oneself mapped in data creates unique experiences, often challenging the self-understanding of the patient.