Evolution of Do-It-Yourself Remote Monitoring Technology for Type 1 Diabetes

The Nightscout Project is a leading example of patient-designed, do-it-yourself (DIY), open-source technology innovations to support type 1 diabetes management. We are unaware of studies that have described the evolution of patient-driven innovations from the Nightscout Project to date.

We identified patient-driven, DIY innovations from posts and comments in the "CGM in the Cloud" private Facebook group as well as data from Twitter, GitHub, and the Nightscout website. For each innovation, we described its intent or its unaddressed need as well as the associated features and improvements. We conducted a thematic analysis to identify overarching patterns among the innovations, features, and improvements, and compared the timeline of innovations in the DIY space with the timing of similar innovations in the commercial space.

We identified and categorized innovations in Nightscout with the most commonly appearing themes of: visualization improvements, equipment improvements, and user experience improvements. Other emerging themes included: Care Portal support, safety, remote monitoring, decision support, international support, artificial pancreas, pushover notifications, and open-source collaboration.

This rapid development of patient-designed DIY innovations driven by unmet needs in the type 1 diabetes community reflects a revolutionary, bottom-up approach to medical innovation. Nightscout users accessed features earlier than if they had waited for commercial products, and they also personalized their tools and devices, empowering them to become the experts of their own care.