The summary care record programme has delivered little benefit, is behind schedule and still faces significant barriers to success, a comprehensive independent evaluation has found.
The records, championed by Tony Blair and part of the troubled NHS IT programme, were intended to make it easy and quick to share crucial elements of patients’ GP record between providers.
The Department of Health-commissioned evaluation, by University College London researchers, says spread of the SCR is limited and, where it has been used, there is limited evidence of the benefits.
It says “wicked” issues have got in the way, including the difficulty of defining the data that should be included, ensuring GP records are complete and accurate, and the need to gain informed consent.
Misunderstandings between different “worlds” – political, clinical, technical, commercial and personal – often lay behind the problems, it says.
The detailed evaluation comes to similar conclusions for HealthSpace – the government programme to give patients access to their summary record on the internet.
It is pessimistic about the role of individuals accessing their own record particularly through a state-run website. It says: “The HealthSpace programme was built on the assumption that a significant proportion of patients will have the motivation and capacity to ‘self manage’ their long term condition using this technology; that this will reduce costs to the NHS.
“The findings of this study to date – that few people are currently interested in using HealthSpace to manage their illness or access their SCR – suggest that it may be time to revisit all these assumptions.
“Deliberation on the future of the HealthSpace programme should take account of the availability of low-cost technologies for supporting self-management and the rapid pace of change in the market for such technologies. It should also reconsider the logic behind the policy-level link between ‘empowerment’ and a state-run online records service.”
The coalition government has allowed the SCR roll-out to continue but said it will review it. The Conservatives have previously said they want to introduce independent providers of personal health records, such as Microsoft and Google, which suggested HealthSpace would not be needed.
Lead author Trisha Greenhalgh, who has recently become director of the healthcare innovation and policy unit at the Barts and The London centre for health sciences, speaking at a conference earlier this week, said she was concerned her findings would be ignored.
Alex Deane, director of privacy campaign group Big Brother Watch, said: “This report reveals that there are serious and potentially irrevocable tensions at the heart of the summary care record.
“We were told that the SCR would make our lives easier. This report shows that this insecure, inaccurate database is fraught with problems that pose a real danger to patients.”