Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey

Abstract

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

Association of British Clinical Diabetologists, Diabetes Technology Network UK and Association of Children’s Diabetes Clinicians Survey of UK Healthcare Professional Attitudes Towards Open-Source Automated Insulin Delivery Systems

“…Since this survey was conducted, more commercially available systems have become available, with proven safety and efficacy, and a NICE multiple-technology appraisal for approved hybrid closed-loop systems is currently being undertaken in England [ 20 ]. Although access to commercially available closed loop systems is increasing, given the multiple reasons to pursue OS-AID systems use and on-going evolution of patient-driven innovations in diabetes technologies, it seems likely that OS-AID systems will continue to feature at some level [ 6 ]. This may require consideration for on-going guidance and education for HCPs involved in type 1 diabetes care and makes it paramount to regularly repeat an assessment of prevailing opinions of OS-AID in clinical practice.…”

“…OS-AID systems have previous been described in detail in other papers [ 5 ] and their uptake by the diabetes community has grown steadily over the past few years. In addition to overcoming access issues, a recent international study of OS-AID users and caregivers highlighted a number of other motivations to use open-source AID systems [ 6 ].…”

Costs and underuse of insulin and diabetes supplies: Findings from the 2020 T1International cross-sectional web-based survey

“…In terms of the global south, the majority of respondents from the Philippines and Ghana reported to be without any healthcare coverage. From this observation naturally results a lower priority of glucagon kits, pumps, and Continuous Glucose Monitoring (CGM) devices for diabetes management, a priority that might be confounded with difficulty of access, as recently reported [21]. The impact of COVID-19 on access to insulin and supplies was also prevalent.…”

Real‐world evidence on clinical outcomes of people with type 1 diabetes using open‐source and commercial automated insulin dosing systems: A systematic review

“…Three studies investigated multiple AID systems simultaneously, of which two included various types of open‐source AID 9,11 and one study compared the Medtronic 670G with open‐source AID 29 …”

“…Three studies investigated multiple AID systems simultaneously, of which two included various types of opensource AID 9,11 and one study compared the Medtronic 670G with open-source AID. 29 The most extensive study on open-source AID was conducted as part of the OPEN project 13 and evaluated self-reported clinical outcome data of 897 users from 35 countries, from which 722 were adults, and 175 were children and adolescents with their caregivers responding on their behalf.…”