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

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.