TY  - JOUR
AU  - Braune, Katarina
AU  - Gajewska, Katarzyna Anna
AU  - Thieffry, Axel
AU  - Lewis, Dana Michelle
AU  - Froment, Timothée
AU  - O'Donnell, Shane
AU  - Speight, Jane
AU  - Hendrieckx, Christel
AU  - Schipp, Jasmine
AU  - Skinner, Timothy
AU  - Langstrup, Henriette
AU  - Tappe, Adrian
AU  - Raile, Klemens
AU  - Cleal, Bryan
PY  - 2021
DA  - 2021/6/7
TI  - Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
JO  - J Med Internet Res
SP  - e25409
VL  - 23
IS  - 6
KW  - diabetes
KW  - artificial pancreas
KW  - automated insulin delivery
KW  - open-source
KW  - patient-led
KW  - user-led
KW  - peer support
KW  - online communities
KW  - diabetes technology
KW  - digital health
KW  - mobile health
KW  - medical device regulation
KW  - motivation
KW  - sleep quality
KW  - do-it-yourself
AB  - 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 
SN  - 1438-8871
UR  - https://www.jmir.org/2021/6/e25409
UR  - https://doi.org/10.2196/25409
UR  - http://www.ncbi.nlm.nih.gov/pubmed/34096874
DO  - 10.2196/25409
ID  - info:doi/10.2196/25409
ER  -