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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
BioSocieties ( IF 1.615 ) Pub Date : 2022-04-22 , DOI: 10.1057/s41292-022-00278-4
Bianca Jansky 1, 2 , Henriette Langstrup 3
Affiliation  

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.



中文翻译:

医疗保健中的设备行动主义和物质参与:回顾 #WeAreNotWaiting 运动中 1 型糖尿病自我护理开源闭环系统的参与形式

#WeAreNotWaiting 运动是一种全球数字健康现象,其中糖尿病患者(主要是 1 型糖尿病 (T1D))参与开源闭环技术的开发和使用,以改善他们的“慢性生活”(Wahlberg 等人)等2021)。数字化和技术参与的全球积极分子患者集体的特征融入了用户主导和开源创新的现有叙述中。他们还呼吁更多地探索本地参与这种以技术为媒介的全球形式的患者参与的实际意义。基于在德国医疗保健背景下进行的实证研究,我们探讨了一群 T1D 患者(他们将自己描述为循环者)所遇到的不同形式的物质参与,他们参与了这种开源技术的开发和使用。在引入设备行动主义的概念时,我们回顾了三种不同的以设备为中心的叙述,这些叙述展示了全球共同关注和通过技术使用进行的政治参与如何随着当地实践的变化而变化。在此,我们强调,#WeAreNotWaiting 运动的参与既受到关注问题的影响,也正在影响关注的问题:身体内、身体上和与身体相关的设备。

更新日期:2022-04-22
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