Human–computer interaction research on personal informatics in health care has focused on systems that aim to support patient empowerment and enable better health outcomes with data monitoring and tracking. Through examining the lived experience of personal data used to manage chronic illness, we show how such technology design is also the site of radical dependencies, collaborative care arrangements, and wider sociopolitical concerns tied to new forms of technical labor and shifts in medical expertise. Drawing from ethnographic research with open source, do-it-yourself collectives engaged in opening up corporate-controlled type 1 diabetes devices and data, we propose the analytical lens of lived data. Lived data emphasize data as an integral way of living, enacted through a multiplicity of things, relations, and practices, from bodies and needles, social media support groups, and legal processes to writing code, making visualizations, and hacking devices. Building on critical and feminist scholarship of human–machine relations, we articulate the work that goes into producing and living personal data, the physical and emotional costs of data tracking, and the consequences of do-it-yourself as a form of individual empowerment in health and wellness.

对医疗保健中个人信息学的人机交互研究集中于旨在支持患者赋权并通过数据监视和跟踪实现更好的健康结果的系统。通过检查用于管理慢性病的个人数据的实际经验，我们证明了这种技术设计也是巨大依赖，合作医疗安排以及与新形式的技术劳动和医学专业知识转移相关的更广泛的社会政治关注的场所。我们从人种学研究的开放源代码，动手做的集体中汲取经验，这些集体致力于开放公司控制的1型糖尿病设备和数据，我们提出了实时数据的分析镜头。实时数据强调数据是一种不可或缺的生活方式，它是通过多种事物，关系和实践从身体和针头形成的，社交媒体支持小组和法律程序来编写代码，进行可视化处理和修改设备。在人机关系的批判性和女权主义学术基础上，我们阐明了产生和生活中的个人数据，数据跟踪的身体和情感成本以及将自己做为个人授权形式的后果的工作。健康与保健。