JMIR Publications

ABSTRACT

Background:

Despite the fact that commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, ‘open-source’ AID systems, co-created by an online community of people with diabetes (PwD) and their families behind the hashtag ‘#WeAreNotWaiting’, have become increasingly popular.

Objective:

This study focused on lived experiences, physical and emotional health implications of PwD following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored by the existing literature.

Methods:

Data were collected from 383 participants across 29 countries through two sets of open-ended questions of a web-based survey regarding their experience of building and using open-source AID. Narratives were thematically analyzed and a coding framework was identified through iterative alignment.

Results:

Improvements in glycemia, physical health, sleep quality, emotional impact on everyday life and quality of life were consistently reported. Knowledge of open-source AID was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. Acquisition of the components to build open-source AID and technical set-up were sometimes problematic.

Conclusions:

The #WeAreNotWaiting movement represents a primary example of how informed and connected patients proactively address their unmet needs, provide peer-support to each other and result in impactful user-driven solutions. Alongside evidence on the safety and efficacy of open-source AID, this qualitative analysis helps understand how patients’ experience and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes.