A Comparison of Discovered Regularities in Blood Glucose Readings across Two Data Collection Approaches Used with a Type 1 Diabetic Youth

Background: Type 1 diabetes requires frequent testing and monitoring of blood glucose levels in order to determine appropriate type and dosage of insulin administration. This can lead to thousands of individual measurements over the course of a lifetime of a single individual, of which very few are retained as part of a permanent record. The third author, aged 9, and his family have maintained several years of written records since his diagnosis with Type 1 diabetes at age 20 months, and have also recently begun to obtain automated records from a continuous glucose monitor. Objectives: This paper compares regularities identified within aggregated manually-collected and automatically-collected blood glucose data visualizations by the family involved in monitoring the third author's diabetes. Methods: 7,437 handwritten entries of the third author's blood sugar readings were obtained from a personal archive, digitized, and visualized in Tableau data visualization software. 6,420 automatically collected entries from a Dexcom G4 Platinum continuous glucose monitor were obtained and visualized in Dexcom's Clarity data visualization report tool. The family was interviewed three times about diabetes data management and their impressions of data as presented in data visualizations. Interviews were audiorecorded or recorded with handwritten notes. Results: The aggregated visualization of manually-collected data revealed consistent habitual times of day when blood sugar measurements were obtained. The family was not fully aware that their existing life routines and the third author's entry into formal schooling had created critical blind spots in their data that were often unmeasured. This was realized upon aggregate visualization of CGM data, but the discovery and use of these visualizations were not realized until a new healthcare provider required the family to find and use them. The lack of use of CGM aggregate visualization was reportedly because the default data displays seemed to provide already abundant information for in the-moment decision making for diabetes management. Conclusions: Existing family routines and school schedules can shape if and when blood glucose data are obtained for T1D youth. These routines may inadvertently introduce blind spots in data, even when it is collected and recorded systematically. Although CGM data may be superior in its overall density of data collection, families do not necessarily discover nor use the full range of useful data visualization features. To support greater awareness of youth blood sugar levels, families that manually obtain youth glucose data should be advised to avoid inadvertently creating data blind spots due to existing schedules and routines. For families using CGM technology, designers and healthcare providers should consider implementing better cues and prompts that will encourage families to discover and utilize aggregate data visualization capabilities.