How Adults with Type 1 Diabetes Are Navigating the Challenges of Open-Source Artificial Pancreas Systems: A Qualitative Study

Objective: An emerging group of people with type 1 diabetes are building and using their own artificial pancreas systems (APS). Currently, these "user-led," open-source systems are not endorsed by regulatory bodies. People face multiple challenges when building and using open-source APS (e.g., lacking required technical knowledge, difficulties sourcing hardware). We explored the experiences of adults with type 1 diabetes using open-source APS to understand how they are navigating these challenges. Research Design and Methods: We conducted semistructured telephone interviews (October 2018 to January 2019) with Australian adults about their experiences using an open-source APS. Interviews were recorded, transcribed, and analyzed thematically. Results: Participants included 23 adults with type 1 diabetes, aged 25-64 years, 10 (43%) women, with 1-34 months of experience of open-source APS. Participants used four key strategies to navigate challenges: (1) peer support, (2) self-sufficiency, (3) risk management, and (4) trade-offs. Participants relied on peer support and self-sufficiency to fill perceived gaps in professional and industry support. They felt that using an open-source solution was no riskier than previous management and demonstrated a conscious weighing-up of risks. Overall, participants felt that the experienced benefits for their physical health and quality of life outweighed the challenges and potential risks. Conclusions: Adults with type 1 diabetes are applying several interweaving psychosocial and practical strategies to navigate the challenges of building and using open-source APS. The findings highlight the importance of health professionals' showing support and understanding for those choosing to use an open-source APS.