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

这项拟议的研究将分析美国的1型糖尿病患者(T1D)患者倡导运动。T1D患者正在通过增加使用数字和移动技术来管理自己的健康状况。这项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医疗技术。此外，它还将提供关于个性化健康管理的数据，这些数据可用于制定更广泛的社会和监管进程。拟议的研究将审查用户如何接受和批评数据跟踪做法。拟议的研究还将有助于教育利益攸关方了解用户和专家都使用的健康数据和分析。这项提案的结果将引起用户、政策制定者、卫生保健从业者和从医疗设备访问数据的患者倡导者的兴趣。通过研究T1D患者的倡导，拟议的研究将确定对医疗保健领域的新技术将如何塑造患者与其健康和身体的关系的见解。拟议的研究将提供关于T1D患者如何重新利用和回收医疗技术的人类学视角。它将探索数字工具和在线社区如何重塑医疗和科学实践。研究网站将包括数字和面对面的数据收集。通过人种学、混合方法的数据收集，这项研究将追踪T1D患者活动家倡导改善他们的病情管理的多重背景--法律、医疗、数字和材料。这项拟议的研究将分析患者激进主义和当代技术之间的关系，以考虑技术如何重新配置患者倡导的形式，以及患者倡导者可能如何重塑技术。这项拟议的研究将确定寻求数据解放、公司透明度和开源数字平台(与医疗保健无关)的运动可能如何影响T1D个人的健康寻求行为和健康信息。这项拟议的研究将检查软件和互联网黑客文化是否重建了美国制药、FDA监管和临床实践。这项拟议研究的见解将有助于理解患者作为公民、消费者和健康数据所有者的体验，以及数据是如何体现和生活的。

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.