A detailed review of the Summary Care Record programme and HealthSpace - its related "portal" - by University College London has found only "modest benefits" from the scheme.
Researchers found records are not widely available, and where they are available they're not always accessed by doctors. Where doctors do access them they are aware of inaccuracies and "clinicians use their judgement when interpreting such data and take account of other sources of information including the patient".
The three-year study found no direct evidence of an improvement to patient safety although findings were consistent with "a rare but important impact of the SCR on reducing medication errors". The records had no impact on consultation times but did lead nurses and doctors to find such consultations easier and less stressful.
Lead author Professor Trisha Greenhalgh, said: “This research shows that the significant benefits anticipated for these programmes have, by and large, yet to be realised – and that they may be achieved only at high cost and enormous effort. When we did find them, they were subtle, hard to articulate and difficult to isolate. It serves to demonstrate the wider dilemma of national databases: that scaling things up doesn’t necessarily make them more efficient or effective.
A Department of Health spokesman welcomed the report and said its findings would be considered.
He said: "Broadly our view is that we see a need for both patients and clinicians to be able to access patient records in an electronic form. This is part of our thinking about making information transparent and available, while involving patients in decisions about their healthcare.
"Specifically in relation to the Summary Care Record, we believe the current processes that are in place need reviewing to ensure that both the information that patients receive, and the process by which they opt out, are as clear and simple as possible. Also, we see a need to review the content of the record and to agree with key stakeholders what should be added to the record and over what timescale.
"Using Summary Care Records effectively depends on patients and doctors feeling an ownership of these records, so that care is focused on patients' wishes delivered by clinicians exercising their professional judgement."
HealthSpace is an online personal health portal designed to let patients access their own records and, if they have an "advanced" account, communicate with their GP over a secure connection. Apparently this wonderful website would empower patients to self-manage their records, improving data quality and access to services.
In reality one person in 200 who was asked to open a basic HealthSpace account actually did so. Out of those only one in a thousand went on to open an advanced account.
The few people who did use the service found it limited and failed to see any benefits from it. But people who were allowed to email their GP thanks to the portal "enjoyed being able to bypass a busy reception desk".
The summary of the report is here.
The Foundation for Information Policy Research said UCL's report showed the summary care record programme was bringing in very few benefits and had the potential to do real harm and therefore should be scrapped. FIPR warned that the SCR programme was "another spectacularly badly-managed public-sector IT project. It cost a lot of money, and is not much used." ®