Data and the 'Healthcare Revolution'

数据正在改变医疗保健。但是怎么做，有什么效果呢？DARE是第一个通过比较多种数据技术、医学领域和使用背景来全面解决这些问题的研究。该研究将为理解信息学和医学如何相互重塑以及数据驱动的医疗保健如何改变健康、疾病和人格的概念提供一个新颖的比较和特定环境的框架。在此过程中，它将为我们理解数字化转型时代的医疗保健做出重大的社会学贡献。四个人种学工作包将追踪生物医学人工智能、临床试验和注册的发展，以告知护理：(1)“家庭”将调查当可穿戴设备被设计用于家庭临床试验中的实时数据采集时，数据与护理之间不断变化的关系；(2)“医院”将分析重症监护室中研究和护理之间不断变化的界限；(3)“国家”将研究如何通过痴呆症领域的健康数据民族主义重新塑造公民身份；(4)“政策”将质疑政府为卫生系统数字化转型制定的蓝图中产生的价值观和假设。通过这些工作包，我们将调查和比较在数据/护理关系中进行的各种工作；这项工作所体现的关怀形式；以及医疗保健专业人员、数据科学家、患者、护理人员和政策制定者所参与的学习方式。横贯工作流程“协同”致力于对与健康有关的数据、护理和学习产生概括性和理论丰富的理解。总之，这些经验和理论的冒险将提供一系列的工作，重新定义我们对数据驱动的健康“革命”的理解，并提供新的理论曲目，在二十一世纪概念化医疗保健。

Data is changing healthcare. But how and to what effect? DARE is the first study to comprehensively address these questions through comparison across multiple data technologies, fields of medicine, and contexts of use. The research will provide a novel comparative and context-specific framework for understanding how informatics and medicine are re-shaping each other and how data-driven healthcare is changing conceptions of health, illness and personhood. In doing so, it will make a major sociological contribution to our understanding of healthcare in the era of digital transformation. Four ethnographic work packages will trace developments in the use of biomedical AI, clinical trials and registries to inform care: (1) 'Home' will investigate the changing relations between data and care that take place when wearables are designed for real-time data capture in home-based clinical trials; (2) 'Hospital' will analyse the shifting boundaries between research and care in the intensive care unit; (3) 'Nation' will examine how citizenship is being re-forged through health data nationalism in the field of dementia and (4) 'Policy' will interrogate the values and assumptions produced in government blueprints for the digital transformation of health systems. Through these work packages, we will investigate and compare the kinds of work taking place at the data/care nexus; the forms of care that this work enacts; and the style of learning that healthcare professionals, data scientists, patients, caregivers and policy-makers are engaged in. A transecting work stream, 'Synergy', is dedicated to producing a synoptic and theoretically-rich understanding of data, care and learning in relation to health. Together, these empirical and theoretical ventures will deliver a body of work which re-defines our understanding of the data-driven 'revolution' in health and provides new theoretical repertoires with which to conceptualise healthcare in the twenty-first century.