The idea of a summary care record is a good one – it could save lives. But doctors say it should be rolled out only if it’s legal and will work – and there are doubts about both.
When read carefully, the report [2MB] published last week on the summary care record [SCR] early adopter sites by researchers at University College, London, raises questions about whether the scheme will work.
It found that primary care trusts whose boards decided to become early adopters of the SCR – which is part of the National Programme for IT [NPfIT] – have had extra staff and financial help: CfH gave between £100,000 and £200,000 to each early adopter site for “set up” costs. The early adopter programme was also buoyed by strong initial enthusiasm among NHS staff.
Yet still there have been significant problems.
So where does that leave the majority of England’s primary care trusts that won’t have the extra money and people, and perhaps won’t have the enthusiasm of the early adopters of the SCR?
Bolton primary care trust was the first NHS site to try out the SCR. It has been nearly a year since its experiment began; and by last month (April 2008) only 22% of Bolton patients had an SCR. By now it should be 90% or more.
For a variety of reasons GPs don’t universally support the scheme. The UCL study found that the SCR technology is clunky and “still has significant bugs”; data on patients often isn’t in a fit state to be uploaded – some participants in the UCL study described data quality in some GP practices as “dreadful” although improving; some GPs have concerns about the security of the SCR system and they don’t like uploading confidential data on their patients to a national database without their patients knowing enough to make an informed decision on whether to opt in or out of the scheme.
A year after the go-lives began should there still be significant bugs? Given that many changes have yet to be made to the SCR, will the significant bugs diminish or increase?
There are also doubts about whether all NHS staff will use an SCR even if every patient’s allergies and medications were uploaded. The UCL evaluation found that some NHS staff were too busy to access the SCR.
There’s a further difficulty: patients were promised in a leaflet that receptionists would not be able to access their SCR. At Bolton there are plans to give receptionists the ability to print out records from the SCR system because this fits in with working practices.
When patients learn that non-medical staff may have access to a national database that contains some of their sensitive medical records, most will care not a jot. But some may be more likely to opt out of having an SCR.
Even some NHS staff at the early adopter sites decided to opt out. The UCL evaluation found that “several participants [in the study] who were NHS staff had decided not to have a SCR themselves to prevent access by ‘nosey’ colleagues”.
If many people opt out of the SCR it’s unlikely to be used by doctors.
NHS CfH replies that fewer than one per cent of patients will opt out. In the early adopter sites only between 0.5% and 0.97% have opted out.
But CfH is comparing the numbers who’ve opted out with a total population that, in the main, hasn’t heard of the SCR. What would be the opt-out rate among the SCR-aware? The UCL report produced evidence that the more people knew about the SCR the greater the potential for them to opt out.
The report said, for example, that “much of the individual resistance within GP practices [to the SCR] has come not from IT-ignorant ‘laggards’ but from Caldicott Guardians who are generally the most information-literate members of staff and certainly the formal custodians of the practice’s data …”
At the early adopter sites awareness of the SCR remained very low, despite a public information campaign. The UCL report said: “It is clear that many individuals in the early adopter sites remain unaware of the SCR programme.”
As most people don’t know anything about the SCR it’s arguably misleading to compare the actual opt-out rate with a largely unaware public.
GP Paul Thornton who has read the UCL report says it reinforces his concern that it’s illegal for patients’ confidential medical details to be uploaded to a national database without their knowledge.
He said of the UCL report: “This authoritative, detailed critique supports concerns that the CfH [Connecting for Health] proposals are not lawful. The researchers have shown that patient awareness and understanding in the “early adopter” areas remains uninformed. Doctors can no longer assume that the common law requirements for implied consent for the release of information are met.
“On the contrary, we now have to assume that implied consent is unlikely to be valid. It is essential that the BMA reviews the lawfulness of the proposals, in conjunction with the professional defence bodies, before any further patient data is transferred to CfH systems.”
CfH is entitled to say that patients should be aware of what’s happening at the early adopter sites because it and primary care trusts have organised local information campaigns, mass mailings to households, and the topic has been covered on radio, local television, and in local newspapers. There have also been information buses in town centres and plasma screens installed in some GP surgeries to show the benefits of the summary care record.
But the fact remains that, despite the efforts of CfH and the primary care trusts, the initials “SCR” mean nothing to most people in the early adopter areas. So it may be illegal to upload their medical details to a national database.
Ross Anderson of Cambridge University’s Computer Laboratory, makes the valid point that the UCL report in general does not ask the most important question: “Are the right systems being built?” Rather it asks “Are they being sold in the right way?”
But the SCR has such a high political profile that it’s likely to continue much as before. And it will possibly take years to fizzle out – as so many national NHS IT schemes have before. After the next general election it may be dropped – and with senior officials and ministers barely noticing the UCL report.
Should any more money be spent on the SCR as it is? Probably it’s a waste of public money. It’s a good idea – but a good idea isn’t enough to sustain a large public investment. The scheme should have been thought through properly years ago. You don’t build the foundations for a housing estate and then design the houses. Which helps to explain why politics, when combined with large, risky, complicated IT projects, is a toxic mix.