Data and the 'Healthcare Revolution'

数据正在改变医疗保健。但如何做到这一点，又会产生什么样的效果呢？DARE是第一项通过比较多种数据技术、医学领域和使用环境来全面解决这些问题的研究。该研究将提供一个新颖的比较和特定背景的框架，以了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。通过这样做，它将为我们在数字化转型时代对医疗保健的理解做出重大的社会学贡献。四个民族志工作包将跟踪使用生物医学人工智能，临床试验和登记的发展，以告知护理：（1）“家庭”将调查数据和护理之间的变化关系，当可穿戴设备被设计用于在家庭临床试验中实时采集数据时;（2）“医院”将分析重症监护病房中研究和护理之间的变化边界;（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”将询问政府蓝图中产生的价值观和假设，以实现卫生系统的数字化转型。通过这些工作包，我们将调查和比较在数据/护理关系中发生的工作类型;这项工作制定的护理形式;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从事的学习风格。一个横切工作流，“协同”，致力于产生一个概括和理论上丰富的理解数据，护理和学习有关的健康。总之，这些经验和理论的冒险将提供一个工作，重新定义我们的数据驱动的“革命”在健康的理解，并提供新的理论剧目与概念化的医疗保健在21世纪。

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.