%0 Journal Article
%@ 1438-8871
%I JMIR Publications
%V 23
%N 6
%P e25409
%T Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
%A Braune,Katarina
%A Gajewska,Katarzyna Anna
%A Thieffry,Axel
%A Lewis,Dana Michelle
%A Froment,Timothée
%A O'Donnell,Shane
%A Speight,Jane
%A Hendrieckx,Christel
%A Schipp,Jasmine
%A Skinner,Timothy
%A Langstrup,Henriette
%A Tappe,Adrian
%A Raile,Klemens
%A Cleal,Bryan
%+ Charité - Universitätsmedizin Berlin, Department of Paediatric Endocrinology and Diabetes, Augustenburger Platz 1, Berlin, 13353, Germany, 49 30616454, katarina.braune@charite.de
%K diabetes
%K artificial pancreas
%K automated insulin delivery
%K open-source
%K patient-led
%K user-led
%K peer support
%K online communities
%K diabetes technology
%K digital health
%K mobile health
%K medical device regulation
%K motivation
%K sleep quality
%K do-it-yourself
%D 2021
%7 7.6.2021
%9 Original Paper
%J J Med Internet Res
%G English
%X Background: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular. Objective: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID. Methods: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes. Results: Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child’s sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child’s life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96%, SD 16.18%, to 80.34%, SD 9.41%; P<.001). Conclusions: These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems. International Registered Report Identifier (IRRID): RR2-10.2196/15368 
%M 34096874
%R 10.2196/25409
%U https://www.jmir.org/2021/6/e25409
%U https://doi.org/10.2196/25409
%U http://www.ncbi.nlm.nih.gov/pubmed/34096874