Frontiers in Public Health (Oct 2015)
DIY Health and Wellbeing: The Hackers and Makers Outpacing Manufacturers and Researchers
Abstract
The widespread availability of affordable consumer technologies, such as wearables, activity trackers, smartphone apps, and other interactive technologies, enables people to track many different aspects of their lives. There is an increasing awareness that many consumer devices have technical capabilities that would be useful for self-management or self-tracking health and wellbeing, even when they were not designed for this domain, and people are starting to appropriate and modify off-the-shelf product [11]. Furthermore, the availability of inexpensive and easy to use sensors, which can be combined with open-source microcontroller platforms, has led to people creating and sharing bespoke open-source healthcare and wellbeing systems that others can customize and use to build their own health technologies. DIY and making activities, such as hacking, tinkering, repairing and crafting, are growing in popularity [1], and increasing numbers of people are motivated to share their open-source designs with a larger audience, often without compensation for their time. One motivation is that they want others to also benefit from their ‘hacked’ technology. Spreading this ‘deviant’ expertise to benefit a larger group has been successful in other domains, where the ‘Power of Positive Deviance’ has been realized in addressing issues in child nutrition, public health, and education [5]. 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” [5]. Much of the work that is being done in DIY health and wellbeing is happening in the privacy of people’s homes, and much of it may be kept private because of legal issues such as the hacked devices not meeting the requirements of standards bodies and legal issues [3]. However, there are a few grassroots maker communities at the forefront of DIY health and wellbeing, such for Type 1 Diabetes, who are actively disseminating open-source technologies as widely as possible. 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. Self-care includes calculating medication doses to inject based on factors such as food consumption and current BG levels, which is often measured with a mobile BG meter. In addition to BG meters, there are various commercially available self-care devices including wearable insulin pumps and continuous glucose monitors (CGM), mobile apps, etc. Research has shown that adults with T1D are adopting, carrying, and using devices in varied and individualized ways to suit their own lives [9], demonstrating a need and desire for personalized self-care devices [6]. Beyond commercially available devices, there is a community of makers that are developing their own bespoke solutions to T1D needs, personalising their T1D devices to varying degrees. At the lower fidelity end, they can adopt accessories such as luggage tags to carry their devices or order customized stickers or skins to add to their devices (Figure 1). At the higher fidelity end, there are movements such as #WeAreNotWaiting who use their technical expertise to create and release bespoke technology solutions at a faster rate than manufacturers or research labs. #WeAreNotWaiting believe manufacturers are taking too long to release products that provide functionalities that they find important, such as being able to upload glucose meter data to the cloud. DIY groups such as Nightscout have modified CGMs to broadcast ‘CGM in the Cloud’ and communicate with other devices that are not reachable using the commercially available CGM Bluetooth capabilities. This not only enables people to broadcast their results to their smartphones and smartwatches [14] (Figure 2), but also allows parents to monitor their children’s BG levels remotely and in real time, something they could not do with commercial devices [13,14]. There have also been moves to use off-the-shelf CGMs and insulin pumps in conjunction with programmable devices such as Raspberry Pi to develop more advanced T1D technologies. The closed loop ‘artificial pancreas’, where a glucose monitor is connected to an insulin pump and addresses glucose levels through automatic medication injection without human assistance, has not been released by any research group or manufacturer to date: currently there are N=13 people who have designed their own [12] (Figure 3). Although there have been great strides in DIY diabetes technologies, there have also been challenges that have emerged that are important to consider as they exemplify some of the general issues that arise in DIY health and wellbeing. For instance, despite the availability of open-source designs, the majority of people who would benefit from personalised self-care tools do not have the relevant technical expertise to participate in this DIY maker culture [4]. For example, there are over 14,000 Facebook members of CGM in the Cloud, but under 3500 downloads of Nightscout at the time of writing. Furthermore, the development of useful tutorials for open-source technologies has been shown to be difficult, even with technically inclined participants shown to struggle with replicating designs [10]. It has been argued that hacking is not practiced in a vacuum independent of political, social, or economic forces [7] and there are other barriers for people that can make them feel excluded from the maker culture, for instance, feeling intimidated about getting involved in ‘hacking’ [8]. Despite these barriers, the DIY making trend looks like it will continue with other groups organising and creating more grassroots groups. This includes established makers openly sharing assistive technology on community platforms, for example, Thingiverse [2], hack-a-thons for specific conditions, maker events for health and wellbeing, and people actively wanting to start up a #WeAreNotWaiting movement for technologies such as hearing devices [13]. There is an opportunity to support the development of the necessary skills to customise, design and manufacture bespoke health and wellbeing devices by identifying and developing support systems for end-users. These strategies and tools can be further expanded to benefit other groups with growing appetites for bespoke technologies and result in a rising research area in HCI.
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