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‘Kindling the fire’ of NHS patient data exploitations: The care.data controversy in news media discourses

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  • Vezyridis, Paraskevas

Abstract

This paper explores news media discourse about care.data: an NHS England programme of work for amalgamating and sharing patient data from primary care for planning and research. It was scrapped in 2016 after three years of public outcry, delays and around 1.5 million opt-outs. I examine UK news media coverage of this programme through the ‘fire object’ metaphor, focusing upon the visions of purpose and value it inspired, the abrupt discontinuities, juxtapositions and transformations it performed, and the matters of concern that went unheeded. Findings suggest that, in care.data's pursuit of a societal consensus on NHS patient data exploitations, various visions for new and fluid data flows brought to presence narratives of transforming the NHS, saving lives, and growing the economy. Other realities and concerns that mattered for certain stakeholders, such as data ownership and commercialisation, public engagement and informed consent, commitment and leadership, operational capabilities, and NHS privatisation agendas, remained absent or unsettled. False dichotomies kept the controversy alive, sealing its fate. I conclude by arguing that such failed programmes can turn into phantom-like objects, haunting future patient data schemes of similar aspirations. The paper highlights the role news media can have in understanding such energetic public controversies.

Suggested Citation

  • Vezyridis, Paraskevas, 2024. "‘Kindling the fire’ of NHS patient data exploitations: The care.data controversy in news media discourses," Social Science & Medicine, Elsevier, vol. 348(C).
    • Handle: RePEc:eee:socmed:v:348:y:2024:i:c:s0277953624002685
    DOI: 10.1016/j.socscimed.2024.116824
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    References listed on IDEAS

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    1. Skog, Frida & Lundström, Ragnar, 2022. "Heroes, victims, and villains in news media narratives about COVID-19. Analysing moralising discourse in Swedish newspaper reporting during the spring of 2020," Social Science & Medicine, Elsevier, vol. 294(C).
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    3. Ribeiro, Barbara & Hartley, Sarah & Nerlich, Brigitte & Jaspal, Rusi, 2018. "Media coverage of the Zika crisis in Brazil: The construction of a ‘war’ frame that masked social and gender inequalities," Social Science & Medicine, Elsevier, vol. 200(C), pages 137-144.
    4. Cherif, Emna & Bezaz, Nora & Mzoughi, Manel, 2021. "Do personal health concerns and trust in healthcare providers mitigate privacy concerns? Effects on patients’ intention to share personal health data on electronic health records," Social Science & Medicine, Elsevier, vol. 283(C).
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