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?

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.