Confidential report on Summary Care Records finds database is inaccurate

The Summary Care Records database – which is central to the government’s plans to create health records for 50 million people – contains inaccuracies and omissions that make it difficult for doctors to trust it as a single source of truth, according to a confidential draft report.

The findings by researchers at University College London, are likely to reinforce the concerns of the British Medical Association which has called for a halt to the “rushed” rollout of the “imperfect” Summary Care Record scheme.

The Government launched Summary Care Records to help doctors and nurses make better clinical decisions. The aim is for clinicians and out-of-hours doctors to have access, particularly in an emergency, to a central record of a patient’s allergies, medications and adverse reactions to drugs. 

But the researchers at University College, London, found examples where the Summary Care Records central database failed to indicate a patient’s allergies or adverse reactions to drugs, and listed “current” medication that the patient wasn’t taking.

The database also indicated allergies or adverse reactions to drugs the patient did not have.


The inaccurate information in the central database came from uploads ofpatient records by GP practices. Though there have been technicalproblems with the automatic uploads of GPs records to the Summary CareRecords [SCR] database, and significant bugs in local systems, theerrors are likely to have pre-existed the uploads.    

Researchersat UCL found no evidence that incomplete or inaccurate data on the SCRdatabase had led to patients to coming to harm – but precisely becausedoctors did not trust the new system as a single source of truth, andtook extra time to double-check details of medications and allergies.

Theresearchers found no direct evidence that the care records system ledto safer care, though they said that access to the database may reducesome rare medication errors. There was no clear evidence thatconsultations between doctors and patients are quicker – and in somecases use of summary care records made consultations longer.

Butresearchers also found that when central records are accurate, they canbe useful for clinicians, particularly when patients are poor atcommunicating or, if they are on multiple medications, cannot rememberwhat they are.

The Summary Care Records scheme is one of the main reasons for the £12.7bn National Programme for IT [NPfIT], which was launched by the Blair government in 2002.

Bythe end of February 2010, about a third of the 152 Primary Care Trustsin England had begun mailing leaflets on Summary Care Records to nearlynine million patients, of whom less than 15,000 had opted out of havingtheir health data uploaded.

About 1.2 million summary carerecords have already been created. CfH’s internal target of one millionSCRs was reached on 12 January 2010.

NHS Connecting for Healthrequires that GP practices meet minimum standards of data qualitybefore they can upload records to the NHS data “spine”.

Butofficials at the Department of Health are concerned that if they setthe standards of data quality that are too high, only small numbers ofGP Practices will upload their data.

Until there is a critical mass of patients on the system, few doctors will use it.

NHSConnecting for Health commissioned a series of reports from UniversityCollege London, so far costing about £723,000 to inform the nationalroll-out of the Summary Care Records.

NHS Connecting for Health has continued the scheme without waiting for the reports to be completed.

Officialsat the Department of Health hope that about 50 million people inEngland will have a summary record on the SCR database. 

Thefinal UCL report, which is due to be published next month, is expectedto make clear that NHS Connecting for Health is a politically-drivenorganisation whose dedicated staff have strong support from primarycare trusts for delivering Summary Care Records –  whatever thedifficulties.

The problems so far include a low take-up of thescheme by hospital clinicians. UCL researchers found that about a thirdof GP practices in some PCT areas were using systems that were neverlikely to be compliant with the Summary Care Record central system.

A further problem is that nobody has yet defined what medical information should go in the Summary Care Record.

Thedraft report takes no view on whether Summary Care Records are a goodor bad idea. It highlights the benefits and problems, and particularlythe complexity of the scheme and the many barriers and uncertainties onthe way to possible success.

Researchers say that the SCR, like other parts of the NPfIT, requires fundamental changes to systems, protocols, budget allocations – and to organisational culture and ways of working.

There are limits to how much centralised, standardised approaches will work locally. 

The final report may conclude that the success of SCRs will depend on whether the NHS, Connecting for Health and the Department of Health can bridge the deep cultural and institutional divides that have so far characterised the NPfIT.

It may also ask whether the government founded the SCR on an unrealistic assumption: that the centralised database could ever be a single source of truth.

**

The Times has today reported on our article. 

Links:

I couldn’t opt out because nobody has my records – Karen Blakeman’s blog

Is Summary Care Records plan feasible? – IT Projects Blog 2008

UCL’s 2008 evaluation of Summary Care Records scheme – UCL website

BMA and CfH argue it out over Summary Care Records – IT Projects Blog

Patient-records project ploughs on but evaluation isn’t finished yet – Silicon.com

New patient records database contains errors – The Times

Summary Care Records – an attack on privacy? – Independent Letters

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Connecting for Health does make it clear:

"You can also ask to see a copy of the GP Summary contribution to your Summary Care Record before it is created."

I think that any patient who opts in to having a SCR should ensure that the data that their GP is going to upload is accurate, before the data is uploaded.

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Good point. Perhaps GPs should write to their patients who've had PCT leaflets suggesting that they check the GP summary before it is uploaded. This, as you say, is also a form of specific consent to the upload.

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As a GP, I feel that the idea that you could check your records before upload rather misses the point!

In the first phase, medication and recorded adverse reactions will be uploaded. This information is very likely to be accurate - but, as far as allergies goes, may be incomplete.

The "enrichment" phase follows - and this is where the problems start.

As your GP, even I don't know what will be uploaded.

All of the summary? (different GP systems handle Summaries differently - and there are important things I, as your GP, need to keep visible which shouldn't be uploaded).

Specific items excluded? ( the Welsh equivalent excludes sexual health, mental health and obstetrics/ gynaecology)

Free text as well as Read Code (Diagnoses and a lot of other things are Coded on computer, so that they can be searched)? The problem here is that while it is useful to know that you are recorded as having a condition - e.g. stress, it doesn't actually tell you much - it's the gory details which threaten your confidentiality - and might stop your GP, in the future, from recording enough information to manage your problems in the GP practice.

My main problem is that we just don't have any answers - and nor do the patients (which includes me!)

*Is* it possible to give informed consent to something which is so ill-defined?

And if implied consent is given, can this be informed or applicable if, in the future, the SCR is further enriched?

What do you - the patient - think?

I'm just a GP - I'll observe your wishes...

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It's a question likely to be asked in the final UCL report: what are patients consenting to, given that nobody is clear what the summary care record will contain - and what's to go in it will change, and may never be clearly defined.

I suppose patients, by implied or specific consent, are saying to the government, in effect, "share on the SCR database anything and everything you wish, in the interests of my health, if perhaps not my privacy".

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Since there are no examples of what the SCR will look like, or a complete description of what exactly it will include or exclude, either initially or in the future, I will be opting out of the SCR. Making a decision on the basis of vague statements like "things such as current medications and allergic reactions" is simply not enough information, particularly for those with previous health record entries that may be stigmatising, e.g. does an A&E nurse need to know someone who has broken their arm suffered a breakdown a decade ago? Does a radiographer need to know the person they're X-raying was recently treated for an STD?

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Projects like these are massive and data quality can be enhanced gradually. No matter how much criticism there is everyone going to a GP can sense an improvement.

The importance of having data stores like these should not be undermined.

Data Quality is a gradual process and the required 'data' [needs] to be there first...

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If it is true that the SCR is "ill-defined" then this is a terrible indictment of those who have authorised, designed and implemented the system.

On the other hand, database management systems such as Oracle can only work if someone has already defined a "data model" that serves as a template for the data to be stored in the physical database.

So, it seems to me that someone somewhere must know what the data model looks like. Since there is no personal data involved, it seems that a step forward could be made if CW makes an FOI request for the data model to be make public.

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