Media content analysis of general practitioners’ reactions to care.data expressed in the media: what lessons can be learned for future NHS data sharing initiatives?

Ford, E., Kazempour, Y., Cooper, M. J.F., Katikireddi, V. and Boyd, A. (2020) Media content analysis of general practitioners’ reactions to care.data expressed in the media: what lessons can be learned for future NHS data sharing initiatives? BMJ Open, 10, e038006. (doi: 10.1136/bmjopen-2020-038006) (PMID:32912990) (PMCID:PMC7485233)

[img] Text
221334.pdf - Published Version
Available under License Creative Commons Attribution.

609kB

Abstract

Objectives: Care.data was a 2013 UK government initiative to extract patient data from general practices in England to form a centralised whole-population database for service planning and health research. After a public outcry, the scheme was postponed and cancelled. Public views of care.data have previously been analysed; this study aimed to understand contemporary general practitioners’ (GPs) views of the scheme, which may have been influential in its downfall. Design: Systematic search of media articles, followed by media content analysis. Setting: UK-based mainstream and GP-facing media in 2013 and 2014. Participants: Articles were eligible if they focused on care.data, and GPs were quoted, authored the article, or if articles were written for a majority GP audience. Interventions: N/A. Primary and secondary outcome measures: Themes which explained GPs' reactions to care.data and which could explain support for or opposition to the scheme. Results: 162 media articles met inclusion criteria and were drawn from newspapers, news websites and GP-facing websites. GPs recognised care.data’s potential value for research and improving care, but had grave concerns about the scheme’s implementation. These centred the lack of safeguards and purpose around the scheme which meant patients were not able to make informed decisions about opt-out. GPs perceived they were poorly resourced to meet competing demands to both share patients’ data and protect confidentiality. They distrusted the government’s likely uses of the data and perceived a risk of patient reidentification if the data were sold onto commercial entities. Conclusions: Findings show specific concerns which GPs had about care.data which led to the withdrawal of support. Future NHS patient data-sharing schemes should engage with GPs and other clinicians as key stakeholders from the earliest moments of planning, so that their views and needs are incorporated into the design of such schemes.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Katikireddi, Professor Vittal
Authors: Ford, E., Kazempour, Y., Cooper, M. J.F., Katikireddi, V., and Boyd, A.
College/School:College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > MRC/CSO SPHSU
Journal Name:BMJ Open
Publisher:BMJ Publishing Group
ISSN:2044-6055
ISSN (Online):2044-6055
Copyright Holders:Copyright © 2020 The Authors
First Published:First published in BMJ Open 10:e038006
Publisher Policy:Reproduced under a Creative Commons License

University Staff: Request a correction | Enlighten Editors: Update this record

Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
727651SPHSU Core Renewal: Measuring and Analysing Socioeconomic Inequalities in Health Research ProgrammeAlastair LeylandMedical Research Council (MRC)MC_UU_12017/13IHW - MRC/CSO SPHU
Chief Scientist Office (CSO)SPHSU13
172690Understanding the impacts of welfare policy on health: A novel data linkage studySrinivasa KatikireddiChief Scientist Office (CSO)SCAF/15/02HW - Public Health