“I spend more time on the ecosystem than on the disease”: caring for the communicative loop with everyday ADM technology through maintenance and modification work

TL;DR

This paper explores how people with diabetes manage and maintain open-source artificial pancreas systems to ensure effective chronic disease management.

Contribution

The study introduces the concept of caring for ADM systems through maintenance and modification work in personal health contexts.

Findings

Users prioritize maintaining stable communication between their body and ADM systems for diabetes management.

Loopers modify their systems through analysis and reflection to adapt to changing needs.

Practical engagement and anticipation are key in managing chronic disease with ADM technology.

Abstract

Automated decision-making (ADM) systems can be worn in and on the body for various purposes, such as for tracking and managing chronic conditions. One case in point is do-it-yourself open-source artificial pancreas systems, through which users engage in what is referred to as “looping”; combining continuous glucose monitors and insulin pumps placed on the body with digital communication technologies to develop an ADM system for personal diabetes management. The idea behind these personalized systems is to delegate decision-making regarding insulin to an algorithm that can make autonomous decisions. Based on interviews and photo diaries with Danish “loopers”, this paper highlights two interrelated narratives of how users have to care for the loop by maintaining a stable communication circuit between body and ADM system, and by modifying the loop through analysis and reflection. It shows how the human takes turns with the ADM system through practical doings and anticipation to safeguard continuous management of chronic disease.

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