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.

IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL Biosocieties Pub Date : 2022-04-22 DOI:10.1057/s41292-022-00278-4
Bianca Jansky, Henriette Langstrup
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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.

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医疗保健中的设备行动主义和物质参与:追溯 1 型糖尿病自我护理开源闭环系统 #WeAreNotWaiting 运动中的参与形式。
#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)患者,参与开发和使用开源闭环技术,以改善他们的 "慢性生活"(Wahlberg 等,2021 年)。具有数字功能和技术参与的全球积极患者集体的特征,与现有的用户主导和开源创新的叙事相辅相成。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患者参与形式的实际意义。在德国医疗保健领域开展的实证研究的基础上,我们探讨了一群患有 T1D 的患者(他们自称为 loopers)的不同形式的物质参与,他们参与了这项开源技术的开发和使用。我们引入了 "设备行动主义"(device activism)的概念,回溯了三个不同的以设备为中心的叙事,展示了全球共同关注的问题和通过技术使用进行的政治参与如何因地制宜。在此,我们强调,#我们不等待#运动中的参与既是由关注的问题--身体中、身体上和身体上的设备--形成的,也正在形成。
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来源期刊
Biosocieties
Biosocieties SOCIAL SCIENCES, BIOMEDICAL-
CiteScore
3.40
自引率
6.20%
发文量
23
期刊介绍: BioSocieties is committed to the scholarly exploration of the crucial social, ethical and policy implications of developments in the life sciences and biomedicine. These developments are increasing our ability to control our own biology; enabling us to create novel life forms; changing our ideas of ‘normality’ and ‘abnormality’; transforming our understanding of personal identity, family relations, ancestry and ‘race’; altering our social and personal expectations and responsibilities; reshaping global economic opportunities and inequalities; creating new global security challenges; and generating new social, ethical, legal and regulatory dilemmas. To address these dilemmas requires us to break out from narrow disciplinary boundaries within the social sciences and humanities, and between these disciplines and the natural sciences, and to develop new ways of thinking about the relations between biology and sociality and between the life sciences and society. BioSocieties provides a crucial forum where the most rigorous social research and critical analysis of these issues can intersect with the work of leading scientists, social researchers, clinicians, regulators and other stakeholders. BioSocieties defines the key intellectual issues at the science-society interface, and offers pathways to the resolution of the critical local, national and global socio-political challenges that arise from scientific and biomedical advances. As the first journal of its kind, BioSocieties publishes scholarship across the social science disciplines, and represents a lively and balanced array of perspectives on controversial issues. In its inaugural year BioSocieties demonstrated the constructive potential of interdisciplinary dialogue and debate across the social and natural sciences. We are becoming the journal of choice not only for social scientists, but also for life scientists interested in the larger social, ethical and policy implications of their work. The journal is international in scope, spanning research and developments in all corners of the globe. BioSocieties is published quarterly, with occasional themed issues that highlight some of the critical questions and problematics of modern biotechnologies. Articles, response pieces, review essays, and self-standing editorial pieces by social and life scientists form a regular part of the journal.
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