Accepted paper:

Illness, Disease, and Sickness: What do we track and for whom?


Margaret Machniak Sommervold (University of Oslo)

Paper short abstract:

Representing different but interlinked ontologies, the phenomena of disease, illness, and sickness will inform the analysis of young patients’ adoption and rejection of self-tracking m-Health applications and the implications for the emerging fields of patient-centeredness and patient empowerment.

Paper long abstract:

Personal management of physical chronic conditions is becoming increasingly central as healthcare systems worldwide are dealing with decreasing resources and capacities and growing numbers of patients and demands. This development, in combination with new mobile technologies' ability to translate everyday processes into information, has contributed to a growth in the number of m-health applications, which often offer self-tracking functionalities. Mobile-based self-tracking is often linked to patient-empowerment and more efficient healthcare services. Simultaneously, healthcare professionals are warning about the varying quality of the applications and patient's lack of insight and critical look into their own bodies. There exists an inherent tension between the notion of empowerment and the dominant epistemology constituting the modern medicine practices. This tension raises questions regarding for whom patients track the self and whom they empower.

This paper analyses insights about young patients' use and non-use of self-tracking applications and their rejection of a self-tracking application 'prescribed' by their doctors. The applications described by the patients can be interpreted as representing different ontologies, which in the context of managing chronic conditions can be understood through the phenomena of disease ("having a disease"), illness ("being sick"), and sickness ("the sick role"). This paper proposes that these three ontologically different but interlinked phenomena can provide a different perspective for understanding the types of information and data collected by self-tracking applications; describe the ontologies inscribed in the various self-tracking m-Health applications; and discuss the implications for the emerging fields of patient-centeredness and patient empowerment in the field of m-Health.

panel T102
Everyday analytics: The politics and practices of self-monitoring