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Fluid Systems, Biologies, and Digital Activisms: The Open Source Data Movement Among Type 1 Diabetics (T1D)

流体系统、生物学和数字行动：1 型糖尿病 (T1D) 患者的开源数据运动

基本信息

批准号：
1632716
负责人：
Samantha Gottlieb
金额：
$ 14.7万
依托单位：
Gottlieb Samantha D
依托单位国家：
美国
项目类别：
Standard Grant
财政年份：
2017
资助国家：
美国
起止时间：
2017-03-01 至 2019-12-31
项目状态：
已结题

来源：
https://www.nsf.gov/awardsearch/showAward?AWD_ID=1632716&HistoricalAwards=false
关键词：
Fluid Systems Biologies Digital Activisms

项目摘要

The proposed research will analyze a U.S.-based patient advocacy movement of type 1 diabetics (T1D). Patients of T1D are managing their health condition through the increased use of digital and mobile technologies. The proposed research will document how patients are controlling and customizing their health technologies via open source software. In addition it will provide data on individualized health management that can be used to shape broader social and regulatory processes. The proposed research will examine how data tracking practices are being embraced and critiqued by users. The proposed research will also contribute to educating stakeholders about health data and analyses used by users and experts alike. Results from this proposal will be of interest to users, policy makers, health care practioners and patient advocates working with data access from medical devices. By studying the T1D patient advocacy, the proposed research will identify insights into how new technologies in healthcare will shape patients' relationships to their health and bodies.The proposed research will provide an anthropological perspective on how T1D patients re-purpose and reclaim healthcare technologies. It will explore how digital tools and online communities reshape medical and scientific practices. Research sites will include digital and in-person data collection. Through ethnographic, mixed methods data collection, the study will trace the multiple contexts -- legal, medical, digital and material -- in which T1D patient activists advocate for improvements to managing their condition. The proposed research will analyze the relationship between patient activism and contemporary technologies, to consider how technologies reconfigure forms of patient advocacies, and how patient advocates may reshape technologies. The proposed research will identify how movements that seek data liberation, corporate transparency, and open source digital platforms, unrelated to healthcare, may inform T1D individuals' health seeking behaviors and health information. The proposed research will examine whether software and internet hacking cultures reconstitute American pharmaceutical, FDA regulatory, and clinical practices. The insights from the proposed research will contribute to understanding patients' experiences as citizens, consumers, and owners of their health data, as well as how data is embodied and lived.

这项研究将分析美国- 1型糖尿病（T1 D）的患者倡导运动。T1 D患者通过增加使用数字和移动的技术来管理他们的健康状况。拟议的研究将记录患者如何通过开源软件控制和定制他们的健康技术。此外，它还将提供关于个性化健康管理的数据，这些数据可用于塑造更广泛的社会和监管进程。拟议的研究将研究数据跟踪实践如何被用户接受和批评。拟议的研究还将有助于教育利益攸关方了解用户和专家使用的健康数据和分析。该提案的结果将对用户、政策制定者、医疗保健从业人员和患者倡导者感兴趣，他们将从医疗设备中访问数据。通过研究T1 D患者的倡导，拟议的研究将确定医疗保健中的新技术将如何塑造患者与其健康和身体的关系的见解。拟议的研究将提供T1 D患者如何重新利用和回收医疗保健技术的人类学视角。它将探讨数字化工具和在线社区如何重塑医疗和科学实践。研究中心将包括数字和面对面的数据收集。通过人种学，混合方法数据收集，该研究将追踪多种背景-法律的，医疗，数字和材料-其中T1 D患者活动家倡导改善管理他们的病情。拟议中的研究将分析患者行动主义与当代技术之间的关系，考虑技术如何重新配置患者行动的形式，以及患者倡导者如何重塑技术。拟议的研究将确定寻求数据解放，企业透明度和开源数字平台的运动，与医疗保健无关，如何告知T1 D个体的健康寻求行为和健康信息。这项拟议中的研究将研究软件和互联网黑客文化是否会重塑美国制药、FDA监管和临床实践。拟议研究的见解将有助于了解患者作为公民，消费者和健康数据所有者的体验，以及数据如何体现和生活。