Future of Summary Care Records hinges on UCL report

But reason for rushing SCR roll out may have been to prevent a new government from changing NHS IT after the election

SCR system

If you live in England, you may by now have received a letter from the NHS informing you that it is about to create a summary care record (SCR) to store your health information electronically.

The SCR, a key part of the NHS Connecting for Health’s programme to transform the health service’s IT infrastructure, will be available to medical staff treating you, wherever you are in the country. Initially, it will contain information about current medications or allergies, and will be updated later to include more detailed medical information.

The haste with which the letters have been sent out has taken many people by surprise. Pilots of SCRs have been running for two years, and University College of London (UCL) is due to issue an evaluation report on the programme some time this month, which would have given the government time to implement its recommendations before rolling it out further.

The British Medical Association (BMA) has asked the government to suspend the roll-out. Grant Ingrams, chair of the BMA’s GP IT Committee, says, “They were going nicely along with rolling it out area by area, learning from what was happening, and making changes. Then suddenly they've been trying to roll it out across half the country through Primary Care Trusts (PCTs). It’s gone from being a well-controlled programme to losing it at the last hurdle.”

There are good reasons to wait for the UCL report, says Ingrams: “Supposing that this independent report, which they’ve commissioned, says it must be done a completely different way. They’re going to look really stupid, having rolled it out prematurely.”

These are not the only concerns about the implementation of the programme. If patients do not want to have an SCR created, they must ask their GP for an opt-out form or download one from a website. Ingrams is highly critical of this approach: “They’re relying on implied consent. But implied consent only works if the people whose consent you’re implying know that it’s going on.”

A 2008 UCL report on the pilots, he points out, found that seven in 10 patients had no idea that the SCR scheme was in place, despite having been sent detailed information. Further problems are created, he adds, if letters are sent to wrong or out-of-date addresses.

So why the rush to implement SCRs? Phil Booth, national co-ordinator of NO2ID, which campaigns against the growth in state databases holding private information, believes that the decision to send out the letters before a general election may have been influenced by the fact that a new government is likely to take a very different view on NHS IT.

There has been speculation that the Conservatives plan to reform Connecting for Health, and in a speech to launch the draft Conservative manifesto, David Cameron said “We will put patients in charge of their own health records, with the ability to choose which providers they share them with.” Booth puts it bluntly: “Connecting For Health is clearly facing severe reform or scrappage.”

The speed of implementation means that certain uncomfortable questions are being overlooked. Booth believes that the public has been deliberately misinformed about who will have access to their health records. While the letter to patients states that only authorised healthcare staff will be allowed to access an individual’s SCR, the Connecting for Health document Summary Care Record: Implied Consent Model and Permission to View, tells a different story, and states that on certain occasions, the patient’s healthcare record can be opened without their permission.

These include “access made in the public interest”, “access required by Court Order” and “access required by statute”. “Why,” asks Booth, “did they choose to exclude that information from the only information leaflet that they are sending to patients? That alone should make people very suspicious.”

Further cause for concern is that, while patients can opt out of having an SCR after it’s been created, the record is suppressed rather than deleted. Although unavailable for clinical use, the record itself has to be kept in case there is “a subsequent investigation of the performance of a clinician or a dispute about the facts”, according to Summary Care Record: Implied Consent Model and Permission to View.

While these concerns remain unresolved, the public, PCTs and GPs all seem to be inadequately informed about SCRs. “I spoke to a GP who said they were given 10 minutes’ training and told, ‘That’s all you need to know,’” says Ingrams. Booth’s worry is that, in the rush to implementation, reasonable privacy concerns are being overridden: “If this was done selling merchandise through the post, it wouldn’t be legal.”

Summary Care Records timeline

April 2005 NHS Connecting for Health created to manage NHS National Programme for IT

March 2007 Launch of SCR pilot in Bolton Primary Care Trust

May 2008 Publication of University College of London’s Summary Care Record evaluation

March 2010 Letters sent to households in England, informing people that SCRs are about to be created.

March 2010 BMA asks government to suspend roll-out

April 2010 Final UCL evaluation report due