A team of researchers from Bristol, Brighton and Glasgow have examined mainstream and GP-facing media to gauge the contemporary view of the doomed care.data project.
The care.data project was due to be introduced in Spring 2014. However, in early 2014, the plan met with a critical reception from the public and stakeholder. The BMA was initially in favour of the scheme but some doctors wrote publicly about their concerns about the project.
To understand more about GPs’ views on care.data and what factors underpinned their opposition to the scheme, the researchers conducted a media content analysis of contemporaneous GP reactions expressed in the media. The focus was on articles which quoted GPs or other doctors, or were authored by GPs or other doctors, or were written for a solely GP audience.
The results showed that GPs supported the care.data scheme in theory at the outset, and agreed that data extraction and analysis was beneficial for research and patient care. However, as time went on, they increasingly opposed certain aspects of the programme and articulated a number of key concerns.
They felt patients had not been adequately informed and questioned whether the government could be trusted to keep patients’ data safe.
They perceived that the onus was being put on them to make sure their patients were well informed, but no financial or time resources were given to them to achieve this.
They disliked being scapegoated for the project’s failures in communication.
They also perceived that the lack of communication and guidance left them conflicted by competing obligations to share data while maintaining their duty of confidentiality. GPs were fearful that they could end up being held accountable under one or other of these duties.
Writing in BMJ Open, the authors say: “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.”