Open AccessMAPPING HEALTH: HOW DANES EXPERIENCE THEIR DIGITAL HEALTH DATA
Author(s) -
Martina Skrubbeltrang Mahnke,
Mikka Nielsen
Publication year - 2021
Publication title -
selected papers of internet research
Language(s) - English
Resource type - Journals
ISSN - 2162-3317
DOI - 10.5210/spir.v2021i0.12205
Subject(s) - digital health , health literacy , reading (process) , variety (cybernetics) , perplexity , empowerment , data science , empirical research , digital literacy , psychology , computer science , health care , world wide web , political science , epistemology , philosophy , artificial intelligence , language model , law
This paper explores how Danish citizens experience digital healthdata and how these in turn affect their understanding of digital health data and theirself-understanding as a patient. Previous research on digital health data examines primarilyopportunities and challenges as well as structural effects concluding that having access toone's medical data is generally beneficial for patients but also comes with literacychallenges. The aim of this research is to look deeper into personal experiences withdigital health data in order to understand what is at stake when people become digitallymapped patients and how experiences of empowerment, independence, perplexity, and doubtintermingle when reading one’s own health data. Taking a user’s view, the paper drawstheoretically on the concept of ‘assemblage’ understanding digital health data as a complexnexus of user-data relationships. The empirical analysis draws on 16 in-depth purposefullysampled interviews that have been coded thematically. The primary analysis shows thatdigital health data creates unique, deeply emotional experiences that lead towards a varietyof existential questions. Combining the theoretical lens with the empirical analysis thispaper contributes with what we call ‘health assemblages’ that highlight the emergingrelationships and personal emotional attachments users make with their digital health data.In conclusion, it can be stated that seeing oneself mapped in data creates uniqueexperiences, often challenging the self-understanding of the patient.