Project: Studying Adults who Create Bespoke T1 Diabetes Self-Care Technology Through Community-Based Knowledge Transfer and DIY Maker Culture
Researcher: Aisling Ann O’Kane (University of Bristol)
Collaborators: Tim Omer (Hypodiabetic), Kelly Rawlings (Diabetes Forecast), Joyce Lee (University of Michigan – Ann Arbor), Brandon Arbiter (Tidepool), Nate Heintzman (Dexcom), and Eric de Silva (UCL).
Type 1 Diabetes (T1D) is a chronic condition that requires daily self-management of blood glucose (BG) levels by balancing exercise, diet, and injected insulin. Low BG levels are an immediate health concern and high BG levels can lead to long-term complications. Self-care includes calculating medication doses to inject based on factors such as food consumption and current BG levels using devices such as mobile BG meters. In addition to BG meters, there are various commercially available self-care devices including wearable insulin pumps and continuous glucose monitors (CGM), mobile apps, and other digital tools. The choice of T1D self-care devices has never been as great, and research shows that adults are adopting, carrying, and using devices in varied and individualized ways to suit their own everyday lives, uncovering a need and desire for bespoke and personalised self-care devices. Beyond commercially available devices, there is a community of hackers that are developing their own bespoke solutions to T1D needs. This movement, #wearenotwaiting, is a group of people who are able to use their technical expertise to create and release bespoke technology solutions at a rate faster than manufacturers or research labs. The aim of this research is to study this rapidly changing and advancing movement to see what can be learned about this new way of making, sharing, adopting, and using medical devices. An exploratory interview study has been conducted with adults with T1D interested in DIY diabetes and a workshop was run in London to explore the open-source nature of these designs. A situated study of the open-source artificial pancreas system, OpenAPS, was conducted with adults who have already adopted the system into their normal T1D self-management practices.
A.A. O’Kane. “Empowering Adults to Create Bespoke T1 Diabetes Self-Care Technology Through Community-Based Knowledge Transfer and DIY Maker Culture,” poster presented at Behaviour Change Conference: Digital Health and Wellbeing (CBC2016), and in the Frontiers of Public Health, Conference Abstract: Behaviour Change Conference: Digital Health and Wellbeing (abstract only).
A.A. O’Kane, A. Hurst, G. Niezen, N. Marquardt, and G. Abowd. “Workshop: Advances in DIY Health and Wellbeing,” Proceedings of CHI 2016: Extended Abstracts.
A.A. O’Kane, Y. Han, and R. Arriaga. “Varied & Bespoke Needs of Caregivers: Organizing and Communicating Diabetes Care for Children in Era of DIY” in Proceedings of Pervasive Health 2016, 2016.