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医疗保健中的设备行动主义与物质参与:追溯1型糖尿病自我护理中#我们不等候#运动中开源闭环系统的参与形式。

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.

作者信息

Jansky Bianca, Langstrup Henriette

机构信息

Ethics of Medicine, Medical Faculty, University of Augsburg, Stenglinstraße 2, 86156 Augsburg, Germany.

Institute for Sociology, Ludwig-Maximilians-University, Munich, Germany.

出版信息

Biosocieties. 2022 Apr 22:1-25. doi: 10.1057/s41292-022-00278-4.

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.

摘要

“我们不等了”运动是一种全球数字健康现象,在这一现象中,糖尿病患者,主要是1型糖尿病(T1D)患者,参与开源闭环技术的开发和使用,以改善他们的“长期生活状况”(瓦尔贝里等人,2021年)。一个具备数字能力且积极参与技术的全球维权患者群体的特征融入了现有的用户主导和开源创新的叙述之中。它们还呼吁更多地探索在本地参与这种技术介导的全球形式的患者参与究竟意味着什么。基于在德国医疗背景下进行的实证研究,我们探讨了一群参与这种开源技术开发和使用的1型糖尿病患者(他们称自己为“使用闭环者”)所经历的不同形式的物质参与。引入设备行动主义的概念,我们追溯了三种不同的以设备为中心的叙述,这些叙述展示了通过技术使用的全球共同关注和政治参与如何因当地实践而有所不同。在此,我们强调,参与“我们不等了”运动既受到关注事项的塑造,也在塑造着关注事项:身体上、身体内以及与身体相关的设备。

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