TY  - JOUR
AU  - Cleal, Bryan
AU  - Chen, Yanbing
AU  - Wäldchen, Mandy
AU  - Ballhausen, Hanne
AU  - Cooper, Drew
AU  - O'Donnell, Shane
AU  - Knoll, Christine
AU  - Krug, Niklas
AU  - Raile, Klemens
AU  - Ubben, Tebbe
AU  - Tappe, Adrian
AU  - Lewis, Dana
AU  - Willaing, Ingrid
AU  - Skinner, Timothy
AU  - Braune, Katarina
PY  - 2025
DA  - 2025/1/6
TI  - Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives
JO  - J Med Internet Res
SP  - e48406
VL  - 27
KW  - automated insulin delivery
KW  - diabetes technology
KW  - type 1 diabetes
KW  - insulin pumps
KW  - continuous glucose monitoring
KW  - peer support
KW  - community support
KW  - open source
KW  - impact
KW  - users
KW  - diabetes
KW  - emotional health
KW  - challenges
KW  - support
KW  - unmet needs
KW  - mobile phone
AB  - Background: Although 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, cocreated by an online community of people with diabetes and their families behind the hashtag #WeAreNotWaiting, have become increasingly popular. Objective: This study focused on examining the lived experiences, physical and emotional health implications of people with diabetes following the initiation of open-source AID systems, their perceived challenges, and their sources of support, which have not been explored in the existing literature. Methods: We collected data from 383 participants across 29 countries through 2 sets of open-ended questions in a web-based survey on their experience of building and using open-source AID systems. Narratives were thematically analyzed, and a coding framework was identified through iterative alignment. Results: Participants consistently reported improvements in glycemia, physical health, sleep quality, emotional impact on everyday life, and quality of life. Knowledge of open-source AID systems was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. The acquisition of the components to build an open-source AID system and the technical setup 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 obtain results through impactful, user-driven solutions. Alongside providing evidence on the safety and efficacy of open-source AID systems, this qualitative analysis helps in understanding how patients’ experiences and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes. International Registered Report Identifier (IRRID): RR2-10.2196/15368 
SN  - 1438-8871
UR  - https://www.jmir.org/2025/1/e48406
UR  - https://doi.org/10.2196/48406
DO  - 10.2196/48406
ID  - info:doi/10.2196/48406
ER  -