ArticleSociology of health & illness2026
The 'Ghost in the Shell' of NHS Patient Data Policies: News Media on care.data's Haunting of the General Practice Data for Planning and Research.
Article in Sociology of health & illness, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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1 author.
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Abstract
This study examines the controversy surrounding NHS England's suspended 'General Practice Data for Planning and Research' (GPDPR) programme, which aimed to automatically extract personally identifiable coded health data into a central data repository. Drawing on the concept of 'hauntology', I analyse UK news media coverage to explore how the legacy of the earlier, abandoned care.data programme shaped stakeholder opposition and policy debates around GPDPR's data governance. Findings suggest that this programme was often seen as a 'déjà vu' of care.data. Key policy challenges that undermined trust and acceptability included concerns over access to patient data by commercial companies, cumbersome opt-out processes and the absence of shared governance procedures and meaningful ownership arrangements. Comparatively, care.data faced greater political resistance despite lower perceived intrusiveness, highlighting the complex interplay between public engagement, political context and programme design. This study advances understanding of how historical policy failures linger in societal memory, affecting the receptivity and acceptability of subsequent data initiatives. It offers actionable insights for policymakers designing comparable public health data programmes that balance health system improvements, economic growth and public trust.
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