%0 Journal Article
%@ 1438-8871
%I JMIR Publications
%V 27
%N 
%P e48406
%T Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives
%A Cleal,Bryan
%A Chen,Yanbing
%A Wäldchen,Mandy
%A Ballhausen,Hanne
%A Cooper,Drew
%A O'Donnell,Shane
%A Knoll,Christine
%A Krug,Niklas
%A Raile,Klemens
%A Ubben,Tebbe
%A Tappe,Adrian
%A Lewis,Dana
%A Willaing,Ingrid
%A Skinner,Timothy
%A Braune,Katarina
%+ Diabetes Management Research, Steno Diabetes Center Copenhagen, Borgmester Ib Juuls Vej 83, Herlev, 2730, Denmark, 45 39 68 08 00, bryan.richard.cleal@regionh.dk
%K automated insulin delivery
%K diabetes technology
%K type 1 diabetes
%K insulin pumps
%K continuous glucose monitoring
%K peer support
%K community support
%K open source
%K impact
%K users
%K diabetes
%K emotional health
%K challenges
%K support
%K unmet needs
%K mobile phone
%D 2025
%7 6.1.2025
%9 Original Paper
%J J Med Internet Res
%G English
%X 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 
%R 10.2196/48406
%U https://www.jmir.org/2025/1/e48406
%U https://doi.org/10.2196/48406