Centre for Health Innovation, Leadership and Learning (CHILL), Nottingham University Business School, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB, UK.
Soc Sci Med. 2024 May;348:116824. doi: 10.1016/j.socscimed.2024.116824. Epub 2024 Mar 27.
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.
本文探讨了新闻媒体对 care.data 的报道：这是英格兰国民保健署（NHS England）的一项工作计划，旨在整合和共享初级保健中的患者数据，用于规划和研究。该计划在经历了三年的公众抗议、拖延和大约 150 万次退出后，于 2016 年被取消。我通过“消防对象”隐喻来考察英国新闻媒体对该计划的报道，重点关注它所激发的目的和价值愿景、它所执行的突然中断、并置和转变，以及被忽视的关注事项。研究结果表明，在 care.data 追求 NHS 患者数据利用方面的社会共识的过程中，各种关于新的、流动的数据流的愿景带来了 NHS 转型、拯救生命和促进经济增长的叙事。其他对某些利益相关者来说重要的现实和关注点，如数据所有权和商业化、公众参与和知情同意、承诺和领导力、运营能力以及 NHS 私有化议程，仍然缺失或未得到解决。错误的二分法使争议持续存在，决定了它的命运。我最后认为，此类失败的计划可能会变成幽灵般的对象，困扰未来具有类似抱负的患者数据计划。本文强调了新闻媒体在理解此类充满活力的公共争议方面可以发挥的作用。
