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

Bibliographic Data

ID24030201
AuthorsParaskevas Vezyridis (0000-0002-6249-139X, Centre for Health Innovation, Leadership and Learning (CHILL) Nottingham University Business School University of Nottingham Nottingham UK)
Year2026
Volume48
Issue7
Publication date2026-09-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSociology of Health & Illness (JOURNAL)
Journal identifiersISSN: 0141-9889 • E-ISSN: 1467-9566
PublisherWiley (PUBLISHER • GB)
DOI10.1111/1467-9566.70251
LanguageEN
References cited36

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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