Summary Care Record – an NPfIT success?

By Tony Collins

Last month the Department of Health briefed the Daily Mail on plans to dismantle the National Programme for IT.  The result was a front page  lead article in the Mail, under the headline:

£12bn NHS computer system is scrapped… and it’s all YOUR money that Labour poured down the drain.

The article said:

“The Coalition will today announce it is putting a halt to years of scandalous waste of taxpayers’ money on a system that never worked.  It will cut its losses and ‘urgently’ dismantle the National Programme for IT…”

Now the DH has briefed the Telegraph on the success of  Summary Care Records, the national database run by BT under its NPfIT Spine contract.

So the Telegraph has given good coverage to the summary care records scheme.

By its selective briefings the DH has achieved prominent coverage in the national press for dismantling a failing £12bn NHS IT programme, and for modernising the NHS by successfully creating summary care records (under an IT programme that is being dismantled).

The DH’s officials know that the national press will usually give priority to off-the-record briefings by representatives of departments, especially if the briefing is in advance of the issuing of a press release. The Telegraph’s article was in advance of the DH’s publication of this press release.

Prominent in the Telegraph’s coverage was Simon Burns, the NPfIT minister, who in May 2011 spoke on BBC R4’s Today programme of the “fantastic” NPfIT systems [which are based on Cerner Millennium] at the Royal Free Hampstead NHS Trust.

Last week in his praise of summary care records in the Telegraph Burns quoted various medical organisations as supporting the scheme. Taken together the Telegraph articles depict the Summary Care Records scheme as a success – an important part of patient care and treatment.  Said Burns :

“Patient charities have seized on the Summary Care Record; a new type of national, electronic record containing key medical information, as a way of making sure the NHS knows what it needs to about their condition.

“Some of these groups have told us how this can sometimes be a real struggle. Asthma patients being asked to repeat their medical history when they are struggling to breathe. The patient with lung disease carrying around a wash bag with ‘Please make sure I take this medication’ written on it when they are admitted to hospital. Or even the terminally ill patient who ends up dying in hospital because their wish to die at home wasn’t shared with an out–of–hours doctor.

“Patient groups are recognising that one of the easiest and most effective ways of giving these patients a stronger voice is to use the record to tell the NHS the most crucial information about their condition.

“The record contains information about medications, allergies and bad reactions to drugs and is mainly being used by outof–hours GPs to provide safer care where no other information is available…

“Patients can speak to their GP about adding extra information that they want the NHS to know about them in an emergency to their record. The Muscular Dystrophy Campaign has urged their patients to do just this as the first group to recognise the potential of the Summary Care Record. Mencap, AsthmaUK, DiabetesUKand the British Lung Foundation are also raising awareness among patients about how the Summary Care Record can be used to improve and personalise the care they receive.

“Some seriously ill patients have added information about their end of life wishes to their record, helping to ensure that their wishes, typically to die at home, are respected.

“This is because information about their wishes can be shared with everyone, including, most critically, outof–hours doctors and paramedics, involved in their care.

“Some patients have voluntarily added ‘do not resuscitate’ requests to their records, which would be cross–checked against other sources of information at the point of care. Families and carers report that this has saved them and their loved ones much needless distress…”

The Telegraph noted that about 8.8 million people – a fifth of the total number of patients in England – have summary care electronic records. All 33.5 million NHS patients in England are being offered the opportunity of having the service, said the newspaper which added that only a “few” people have opted out. [About 1.2% have opted out, which is about double the rate of opt-outs in the early stages of the SCR programme.]

Comment:

When he meets his Parliamentary colleagues Simon Burns does not like to hear criticism of the NPfIT. He is earning a reputation as the NPfIT’s most senior press officer, which may seem odd given that the programme is supposedly being dismantled.

But Burns’ enthusiasm for the NPfIT is not odd.  He is reflecting the views of his officials, as have all Labour NPfIT ministers:  Caroline Flint, Ben Bradshaw and Mike O’Brien were in the line of Labour NPfIT ministers who gave similar speeches in praise of the national programme.

That Burns is following suit raises the question of why he is drawing a minister’s salary when he is being simply the public face of officialdom, not an independent voice, not a sceptical challenge for the department.

Burns and his Labour predecessors make the mistake of praising an NPfIT project because it is a good idea in principle. Their statements ignore how the scheme is working in practice.

The NPfIT’s projects are based on good ideas: it is a good idea having an accurate, regularly-updated electronic health record that any clinician treating you can view. But the evidence so far is that the SCR has inaccuracies and important omissions. Researchers from UCL found that the SCR  could not be relied on by clinicians as a single source of truth; and it was unclear who was responsible or accountable for errors and omissions, or keeping the records up to date .

Should an impractical scheme be justified on the basis that it would be a good thing if it worked?

The organisations Burns cites as supporting the summary care record scheme are actually supporting the underlying reasons for the scheme. They are neutral or silent, and perhaps unaware, of how the scheme is working, and not working, in practice.

That has always been the way. The NPfIT has been repeatedly justified on the basis of what it could do. Since they launched it in 2002, ministers and officials at the DH and NHS Connecting for Health have spoken about the programme’s benefits in the future tense. The SCR “will” be able to …

Hence, six years into the SCR,  the headline of the DH’s latest press release on the scheme is still in the future tense:

Summary Care Record to benefit millions of patients with long term conditions, say patient groups

Burns says in the press release that the SCR has the “potential” to transform the experience of healthcare for millions of patients with long term conditions and for their families and carers.

Caroline Stevens, Interim Chief Operating Officer at the British Lung Foundation says in the same press release that the SCR “will” bring many benefits for patients.

And Nic Bungay, Director of Campaigns, Care and Support at the Muscular Dystrophy Campaign says in the press release that his organisation sees the great “potential” for Summary Care Records…”

Summary Care Records – the underlying problems 

Shouldn’t the SCR, hundreds of millions of pounds having been spent, be transforming healthcare now? The evidence so far is that the SCR scheme is of limited use and might have problems that run too deep to overcome.

Trisha Greenhalgh and a team of researchers at UCL carried out an in-depth study of the SCR with funding from NHS Connecting for Health though CfH did not always  extend the hand of friendship to the team.

Greenhalgh showed a conference of Graphnet healthcare users at Bletchley Park code-breaking centre last year how the SCR scheme was entangled in a web of political, clinical, technical, commercial and personal considerations.

Quite how political the scheme had become and how defensive officials at the DH had been over Greenhalgh’s study can be seen in her presentation to Graphnet users which included her comment that:

“All stakeholders [in the UCL report] except Connecting for Health wrote and congratulated us on the final report.”

CfH had sent Greenhalgh 94 pages of queries on her team’s draft report, to which they replied with 100 pages of point-by-point answers. The final report, “The Devil’s in the Detail“, was accepted by peer review – though it later transpired, as a result of UCL investigations, that one of the anonymous peer reviewers was in fact working for Connecting for Health.

These were some of the Greenhalgh team’s findings:

– There was low take-up of the SCR by hospital clinicians for various reasons: the database was not always available for technical reasons, such as a loss of N3 broadband connection; and clinicians did not always have a smartcard, were worried about triggering an alert on the system, were not motivated to use it, or might have been unable to find a patient on the “spine”.  The  SCR was used more widely by out-of-hours doctors and walk-in centres.

– GP practices had systems that were never likely to be compliant with the Summary Care Record central system.

– The SCR helped when a record existed and the patient had trouble communicating.

– The SCR helped when a record existed and the patient was unable to say what multiple medications they were using.

–  There were tensions between setting a high standard for GPs to upload records or lowering standards of data quality to encourage more GP practices to join the scheme.

–  Front-line staff didn’t like asking patients for consent to view the SCR at the point of care. This consent model was unworkable, inappropriate or stressful.

–  There was no direct evidence of safer care but the SCR may reduce some rare medication errors.

– There was no clear evidence that consultations were quicker.

– Costly changes to supplier contracts were needed to take in requirements that were not fully appreciated at the outset of the programme.

– The scheme was far more complex than had been debated in public. Its success depended on radical changes to systems, protocols, budget allocations, organisational culture and ways of working. And these could not be simply standardised because nearly every health site was different.

So what’s the answer?

The SCR is an excellent idea in principle. Every out-of-hours doctor should know each patient’s most recent medical history, current medications and any adverse drug reactions.

But this could be provided locally – by local schemes that have local buy-in and for which there is accountability and responsibility locally. It can be argued that the Summary Care Record, as a national database, was never going to work. Who is responsible for the mistakes in records? Who cares if it is never widely used? Who cares if records are regularly updated or not? Why should GPs care about a national database? They care about their own systems.

It appears therefore that the SCR has benefited, in the main, the central bureaucracy and its largest IT supplier BT.  The SCR national database has kept power, influence and spending control at the centre, emasculating to some extent the control of GPs over their patient records.

The central bureaucracy continues to justify the scheme with statistics on how many records have been created without mentioning how little the records are looked at, how little the information is trusted, and how pervasive are the errors and omissions.

BT and DH officials will be delighted to read Simon Burns’ commentary in the Telegraph on the SCR. But isn’t it time IT-based schemes were unshackled from politics? DH press releases on the success of local IT schemes would be few and far between. But why should £235m – the last estimated cost of the SCR – be spent so that ministers can make speeches and be quoted in press releases?

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