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Data about people’s health is no longer confined to medical records and clinical trials. It is gathered by wearable technologies and smartphone apps; it is inferred from shopping habits and online behaviour; it is used by insurers and advertisers for purposes besides healthcare or medical research. This is the datafication of health, and it has significant consequences for people and society.
My colleagues and I at the Ada Lovelace Institute have been working to better understand the datafication of health: what it is, how it occurs, and its impacts on individual and social wellbeing. We’ve synthesised existing research and surfaced the societal and ethical challenges that occur when the boundaries of what is or isn’t health data become blurred. We’ve put forward evidence that the datafication of health has created an ‘Internet of Health’, in which everyone is made to perform as a patient, subject to continuous monitoring, diagnosis and prediction.
In this talk, I’ll chart the mechanisms through which datafication occurs and explore how datafication challenges existing practical, legal and conceptual definitions of what counts as ‘health data’.
About the speakers
Aidan is a Senior Researcher at the Ada Lovelace Institute, an independent research and deliberative body with a mission to ensure data and AI work for people and society. He leads on public engagement projects, convening a diverse range of voices to understand and address the societal impacts of technology across a range of sectors: from health and biometrics to data governance.
Previously, Aidan worked at Wellcome on social and ethical issues of AI and data in health, including working with Understanding Patient Data and the Data for Science and Health priority area. His background is in humanities and social science with a focus on relationships between technology, culture and society.