User Experience and Vendor Lock-in with Current Diabetes Information System

Patient-generated health data (PGHD) is crucial for monitoring chronic conditions such as Type 1 Diabetes (T1D). This data includes information from medical devices like insulin pumps and continuous glucose monitors and lifestyle insights from commercial wearable devices such as smartwatches. To improve the quality of medical consultations, there is a need for a unified information system capable of integrating PGHD. However, designing such a system presents several challenges, including navigating fragmented data sources and handling various data formats, proprietary interfaces, and storage methods while ensuring robust security, privacy, and adherence to data ownership principles. This article presents the patient user experience with the Dia-Continua information system, highlighting the difficulties experienced by highly experienced users in obtaining and sharing their data. It also discusses the implications of the lack of publicly available APIs for medical data retrieval, the impact on potential competitors and medical vendors, and, most importantly, how these limitations affect the overall user experience with modern diabetes information systems.