Dr Elizabeth Ford, Senior Lecturer in Primary Care Research, is the lead author on a new article on care.data, published in BMJ Open. The paper is also co-authored by Dr Max Cooper, also in the Primary Care and Public Health department at BSMS and by Yalda Kazempour, a BSMS student who intercalated in a MSc in Public Health and conducted the analysis as part of her dissertation.
Care.data was announced in 2013-14 by the UK government as a central system that would host everyone’s general practice patient records and hospital data, which would then be used for planning health services and research. But, following a general outcry about patient privacy, the risk of the data being sold to commercial companies and the poor communication about the scheme, care.data was postponed and then finally cancelled in 2016.
The new article considers GPs’ views on the failure of care.data, which is especially relevant at the moment with the increase in use of patient data for research during the pandemic. For example, the government issued a ‘control of patient information’ (COPI) notice in March 2020 for COVID-19 purposes, which requires the NHS to share patient data with organisations entitled to process this.
Commenting, Elizabeth says: “Patients’ views on the scheme and theories about what led to its downfall have been explored in academic work, but no one has investigated how GPs’ views on the scheme may have contributed to its failure. For any future NHS data sharing scheme to be successful, GPs’ support must be ensured, as they are the main data creators and custodians. In this piece of research, we explored GPs’ views of care.data at the time of the unfolding crisis, by conducting an analysis of GP views expressed in the media.”
The analysis found that GPs recognised care.data’s potential value for research and improving care, but had concerns about the scheme’s implementation. These centred the lack of safeguards around the scheme which meant patients were not able to make informed decisions about opt-out. GPs also expressed concerns that they were poorly resourced to meet competing demands to both share patients’ data and protect confidentiality, and distrusted the government’s likely uses of the data.
Elizabeth adds: “We conclude that 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 and implementation of such schemes. For example, were GPs consulted prior to the COPI notice and were they able to raise any concerns around sharing patient data during the current pandemic? More needs to be done to ensure that GPs are engaged with at the earliest stages of all data-sharing schemes.”
The article, titled ‘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?’ is available to read open access via the link below.
Read the paper on BMJ Open here >