Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care

Abstract

The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their “chronic living” (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.

Digitized Patients: Elaborative Tinkering and Knowledge Practices in the Open-source Type 1 Diabetes “Looper Community”

“…The knowledge practices of the looper community explored here are related to activist knowledge practices retraced by Epstein (1995, 1998), Callon and Rabeharisoa (2003), or Rabeharisoa, Moreira, and Akrich (2014). How loopers “take means of production into their own hands” (Jansky and Langstrup 2022, 11) also adds new dimensions to this understanding. Loopers challenged pharmaceutical and device manufacturers’ innovation operations and knowledge practices in biomedicine more broadly.…”

“…Loopers create complex knowledge and make it explicit by sharing it with others in methodological, organized, and scientistic ways. Their emerging knowledge practices reveal loopers radically changing their own treatment, while also challenging “the political economy of health device innovation” (Jansky and Langstrup 2022, 18). If we stay only within the literature about how patients know in practical ways, or if we only see the emerging knowledge practices of the looper community through the prism of activist ways of knowing as patient, or as niche self-experimenting as patient innovators in the realm of the QS movement, we lose sight of the nuanced entanglement of these ways of knowing in practice.…”

“…How patients engage with their bodies, self-care technologies, and care infrastructures cannot only be understood “through the inter-relation of home and clinic” (Trnka 2021, 8). What makes the knowledge practices of loopers unique is “that code, data, and (digital) devices are their shared concern and the means through which loopers engage individually and collectively” (Jansky and Langstrup 2022, 6). Looping is an inherent individual-in-community knowledge practice that situates the person in feedback loops that involve interacting with peers in an online community, making code and resources available within this open-source community, and ultimately creating adjunct structures of care as part of a broader innovative process in health care.…”

“…Even with new digital technologies, they have to be alert and active in every moment of their lives (Kaziunas et al 2017; Gottlieb and Cluck 2019). In completing their repetitive data work, they encounter black-box algorithms, limited openness regarding the use of the data generated and collected, as well as limited interoperability (Jansky and Langstrup 2022; Gottlieb 2021).…”

“…Looping is not a frictionless endeavor and has a material component to it: some loopers tinker with the battery of their glucose sensor to prolong the battery life, others 3D print transmitters. Engaging in the looper community can be interpreted as forms of chronic self-care (Schipp et al 2021), patient-driven innovation (Demonaco et al 2019), and activism (Jansky and Langstrup 2022).…”