TY - JOUR

T1 - Device activism and material participation in healthcare

T2 - retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care

AU - Jansky, Bianca

AU - Langstrup, Henriette

N1 - Publisher Copyright: © 2022, The Author(s).

PY - 2023

Y1 - 2023

N2 - 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.

AB - 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.

KW - Material participation

KW - Open-source

KW - Patient activism

KW - Patient collectives

KW - Patient innovation

KW - Type 1 diabetes

U2 - 10.1057/s41292-022-00278-4

DO - 10.1057/s41292-022-00278-4

M3 - Journal article

C2 - 35474758

AN - SCOPUS:85128834798

VL - 18

SP - 498

EP - 522

JO - BioSocieties

JF - BioSocieties

SN - 1745-8552

ER -