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Why Personal Dreams Matter: How professionals affectively engage with the promises surrounding data-driven healthcare in Europe

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    Abstract

    Recent buzzes around big data, data science and artificial intelligence portray a data-driven future for healthcare. As a response, Europe's key players have stimulated the use of big data technologies to make healthcare more efficient and effective. Critical Data Studies and Science and Technology Studies have developed many concepts to reflect on such overly positive narratives and conduct critical policy evaluations. In this study, we argue that there is also much to be learned from studying how professionals in the healthcare field affectively engage with this strong European narrative in concrete big data projects. We followed twelve hospital-based big data pilots in eight European countries and interviewed 145 professionals (including legal, governance and ethical experts, healthcare staff and data scientists) between 2018 and 2020. In this study, we introduce the metaphor of dreams to describe how professionals link the big data promises to their own frustrations, ideas, values and experiences with healthcare. Our research answers the question: how do professionals in concrete data-driven initiatives affectively engage with European Union's data hopes in their ‘dreams’ – and with what consequences? We describe the dreams of being seen, of timeliness, of connectedness and of being in control. Each of these dreams emphasizes certain aspects of the grand narrative of big data in Europe, makes particular assumptions and has different consequences. We argue that including attention to these dreams in our work could help shine an additional critical light on the big data developments and stimulate the development of responsible data-driven healthcare.
    Original languageEnglish
    Pages (from-to)1-13
    JournalBig Data & Society
    Volume9
    Issue number1
    DOIs
    Publication statusPublished - Jan 2022

    Funding

    We were part of a Horizon 2020 project funded by the European Commission that had the ambition to demonstrate the added value of big data for the healthcare sector (). Between 2018 and 2020, we followed twelve hospital-based big data pilots in eight European Countries and interviewed 145 professionals involved in developing data-driven healthcare, including legal, governance and ethical experts, and healthcare staff and data scientists. We noticed that these professionals often linked the strong European narrative to their own frustrations, ideas, values and experiences with healthcare. There we decided to focus on this process of affective engagement that we define as the complex ways in which professionals bodily and cognitively engage with the promissory rhetoric around big data in Europe and connect the ideas to their daily work on big data in healthcare. This leads to the following research question: how do professionals in concrete data-driven initiatives affectively engage with European Union's data hopes in their ‘dreams’ – and with what consequences? The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Horizon 2020 Innovation Program (grant no. 780495).

    FundersFunder number
    European Union's Horizon 2020 - Research and Innovation Framework Programme780495
    European Commission
    European Union's Horizon 2020 - Research and Innovation Framework Programme

    Keywords

    • Dreams
    • Europe
    • big data
    • expectations
    • healthcare
    • sociotechnical imaginaries

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