Wearable health trackers, hospital intensive care units, national dementia registries, and government digital health blueprints are all being studied side-by-side to reveal how data is actually reshaping medicine—and what gets lost in the process. The problem is that most discussions about data-driven healthcare treat it as a single, inevitable revolution. DARE is the first study to compare how different data technologies—from AI in clinical trials to national health databases—change the meaning of health, illness, and personhood across different settings. Without this comparative lens, policymakers and clinicians risk adopting technologies that quietly shift who counts as a patient, what counts as care, and how decisions get made. If successful, the research will produce a practical framework for understanding what is gained and what is lost when data becomes central to healthcare. This could influence how hospitals design intensive care protocols, how regulators evaluate wearable devices used in home trials, and how governments build national health data systems that respect citizenship rather than erode it. The project is primarily sociological and fundamental in nature—it will not build a new app or algorithm—but its findings could reshape the assumptions that underpin billions of pounds in digital health investment.
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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.
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