Project: Empowering Adults to Create Bespoke T1 Diabetes Self-Care Technology Through Community-Based Knowledge Transfer and DIY Maker Culture
Postdoctoral Researcher: Aisling Ann O’Kane
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 my PhD 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. Spreading this “deviant” expertise to benefit a larger group has been successful in other domains, where the “Power of Positive Deviance” has been realised in addressing issues in child nutrition, public health, and education. The success of positive deviance “rests on its ability to mobilise the community to identify role models within its midst who use uncommon, but demonstrably successful, strategies to tackle common problems”. In the diabetes community, DIY groups have hacked CGMs to broadcast “CGM in the Cloud”, so that parents can monitor their children’s BG levels remotely and in real time. However, the majority of the adults in the T1D community who would benefit from personalised self-care tools do not have the relevant technical expertise to participate in this DIY “maker culture” and the development of useful tutorials has been shown to be difficult in the HCI domain. To solve this disconnect between needs and skills, some informal technical knowledge transfer activities are occurring as uncovered by my T1D research, such as through personal connections made online (e.g. hacker to non-hacker Skype calls to set-up devices). Despite some localised successes from these initiatives, there is still a divide between those who are interested in bespoke technology and those with the DIY skills to safely create it.
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, is currently being 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. “Advances in DIY Health and Wellbeing,” Proceedings of CHI 2016: Extended Abstracts, accepted.
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, accepted.