Paper short abstract:

The image of how the semi-automated technology for type 1 diabetes works, and how patients actually experience it, differ to a great extent. It is time to address these incongruencies in the understanding of care and come to terms with how patients and technology co-create knowledge and experience.

Paper long abstract:

Technological advances in medicine, based on Big Data and AI, allow for faster decision-making processes, precision, radical new definitions of prevention and therapies designed for individuals based on their distinct markers. But not only do these developments come at a certain, often hidden cost – knowledge is being centralized, private companies are endowed with often enormous power while responsibilities shift – but also many of the promises, which are made with regards to AI, simply cannot be kept.

Doing research with type 1 diabetes (T1D) patients on their treatment with (hybrid) closed loop systems in a clinic in Austria, it becomes visible how narratives about the potential of developing technology often clash with individual experiences. T1D is a high maintenance chronic disease that demands the patient’s (or their caregivers) time, effort, expertise, and nerves 24/7. But empowered with the right equipment, patients can now take over full responsibility and consciously manage their bodies – so the story goes. The reality of the lifeworlds of T1D patients often looks rather different: it demands ad-hoc adjustments and reactions to context specific requirements and is indeed much more messy than the standardized technology suggests. From patients experience we can draw a picture of care that differs greatly from the techno-imaginary of the new systems: it is ongoing, open-ended, done by multiple actors (see Mol 2008) and thus allows for radical different future-making options. We need to address these incongruencies in order to work towards the “good lives” of the chronically ill in the future.