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What is the case (business or clinical) for a "universal patient record"?

The “vision” of an all-purpose “Universal Patient Record” appears to be going the same way as that for a “Universal ID Card”. The currently envisaged records, were the system to work, are a very expensive compromise, unfit for most clinical purposes. That is partly because there is no agreement on the purpose of the record, who owns the data contained and who is responsible for its accuracy, availability and security. But the “vision” also ignores the basic principles of good practice in information management and governance as well as those of information systems engineering. Equally interesting, at a time when expenditure at all levels is being scrutinised is that way that the “vision” has evaded scrutiny – whether clinical, professional or financial.

 

 

After a recent meeting, at which the current situation was yet again being “savaged” by a mix of clinicians and IT professionals, I was sent copies of the extracts from the first evidence session for the enquiry into the “Information Management and Technology Strategies of the NHS” covered in the House of Commons Committee of Public Accounts Committee 13th Report Session 1999-2000.  These covered the meeting at which the seeds for the subsequent failure were sown – because those in Richmond House subsequently assumed their approach was acceptable, including to the PAC.  The minutes are a matter of public record and available in the House of Commons library, (I thank Ian Brown for scanning the extract and putting this on-line for me to link to after my original post).    

 

I asked my source if he would be willing to give evidence to the current Public Administration Select Committee enquiry on why government never learns. Unfortunately he said he was too old to spend time on an exercise that would offend friends who had spent many years trying to deliver the impossible. He also feared that the Department had already persuaded their new Ministers that it was too difficult to do more than throw good money after bad and did not wish to waste his time.

 

He did, however, agree that I could use his notes. 

 

The first session of the Public Accounts Committee enquiry was apparently the key to what subsequently happened, because it demonstrated that Richmond House had already abandoned the 1998 (localism) strategy and made the core decisions on what was to become the National Programme for IT. 

 

A member of the PAC who was present on 1 November told him that two of the key “witnesses”, Sir John Bourn (Comptorller and Auditor General) and Frank Burns (later the Head of NHS IT) looked glum during the session, albeit for different reasons.

 

The last sentence of para 83 reads “Chairman – Thank you very much Mr Burns, you have had a very enjoyable cheap spectator role today”. In fact Frank Burns did not answer a single question during the session, each enquiry by the Committee being taken by Sir Alan Langlands. Sir John Bourn sat silent as Mr Jamie Mortimer of the Treasury stated that a business case for the NHS IT programme was not required.

 

Some of the important points were:

 

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FINANCIAL CONTROL

 

Sir Alan put a cost on the 6 years (2000-05) of the strategy as “about £1Bn”. (Para 2) The Chairman asked the Treasury (para 4) “How can you justify expenditure in excess of £1Bn without an overall business case”.  Mr Mortimer (Para 6 & again in Para 14) “We did not think it sensible to insist on a business case for the whole of the strategy”.

 

The Chairman asked (Para 7) “What confidence do you have that projects forming part of this strategy will be delivered on time and to cost?”  Sir Alan “I think it is unrealistic to think that everything in this field will go perfectly, so I do not expect the strategy to go trouble free.  I think we have learnt a number of lessons. I think the Government is adopting a more directive approach in using earmarked money which was not the case before”.  He continues in para 7 listing several promises for the future, but sadly these were not delivered.

 

Mr Barry Gardner asked (Para 14) “My understanding was that there was Treasury guidance that it was important to justify programmes as a whole”.  Mr Mortimer, “It is true that the Green Book does say that, if individual projects are interrelated, then the proposals should be looked at as a whole”  Para 15 (Sir Alan) “We do not think it necessary to have to go through a full blown business case process for a strategy document which is essentially a general statement of direction”.

 

THE PROMISED DELIVERY FOR THE £1BN INVESTMENT

 

Chairman (para 9), “what improvements will the public get for this £1Bn investment?”.  Sir Alan “If you think of a world where we have electronic patient records easily accessible 24 HOURS A DAY, the key point will be access to information so that IF YOU ARE TAKEN TO AN A&E DEPARTMENT, IT WILL BE POSSIBLE TO ENSURE THAT CLINICIANS HAVE A FULL SET OF RECORDS AVAILABLE NO MATTER WHERE YOU LIVE IN THE COUNTRY and I think that is a huge change.” 

 

The statement above, expressed at this time for the first time, and subsequently included in a speech by Tony Blair, set the direction for NPfIT from which it could never recover.  There never has been a costed plan to achieve this goal, at best the NHS has had, as Sir Alan (para 15) says, “a strategy document which is essentially a general statement of direction”.

 

A NEW FORM OF PROCUREMENT

 

In para 32, Sir Alan explained to Mr Geraint Davies that “we are looking at the moment at procurement in some detail on a whole NHS basis. We are thinking of piloting a collaborative procurement from an agreed shortlist of suppliers so that local organisations have some discretion, but limited discretion”. This local service provider approach, which was adopted and has severely restricted local NHS bodies, is considered by many to have cost the NHS hundreds of millions of pounds.

 

THE IMPLEMENTATION PLAN

 

The Appendix lays out the milestones that were intended to be achieved during the 6 years from Dec 1999 to Dec 2005.  Although different terminology was introduced, the milestones of NPfIT remained very similar to those in the Appendix. Many have not been meet and remain distant aspirations.

 

IS THE CURRENT NHS IT STRATEGY APPROPRIATE FOR THE NEW WHITE PAPER?

 

Sir Alan (para 1) states, “I think it is important to recognise that IT strategies are conditioned by the government policy at the time.  The 1992 strategy was drawn up for the internal market in the NHS. The 1998 strategy was drawn for a different NHS with the internal market abolished and an emphasis on integration of services”.

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My source felt that the new policy, “Equity and excellence: Liberating the NHS“, is so different to the last government’s vision that an entirely new IT strategy is needed to support it.  The measure of success of the new policy is the improvement in outcomes.  Under the policy’s timetable, a good set of outcomes will only become available in 2015 and trends will not be confirmed until 2018. 

He felt that the current NHS IT strategy does not support in any substantive way the new ‘improved outcomes’ led NHS. There is no strategy or plan published by the NHS to support the new policy. He felt that when it was produced, the implementation cost to end of 2018 was likely to be least £10Bn.

He felt that the time had come for some-one, “to kill off the mad dog” and go back to a bottom up approach, but with a more vigorous approach to inter-operability standards (at all levels, not just technical but also for clinical, financial and managerial information), to link systems that had a clinical and/or financial  “business case”. 

I think that also means building on the thinking behind the 1992 and 1998 strategies. The former was intended to support an internal market and the latter helped create many of the systems (clinical and GP) that keep current health care going. But killing a centralised, top down strategy which has enriched the careers of a generation of consultants, lawyers, officials and administrators is a lot harder than killing a mad dog.    

 

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Patients are seldom consulted in matters of electronic patient records. May I put my humble oar in.

I am being treated by two hospitals for separate conditions. Similarly, my wife is being treated by two others. None of these hospitals know anything about the treatments the others are giving. To me, this could be expensive, because of duplication of treatment, and dangerous.

Fortunately, we are both, despite our great age, still compos mentis enough to tell the doctors our histories. Most of our contemporaries are not. So the doctors who treat us are flying off the seat of their pants. The 7000 people a year who die from "inappropriate treatments' are evidence that this is not the way to be.

I also have a problem of forgetting what medications I am taking, or what allergies I have, when I come across an unfamiliar doctor. An accessible Summary Health Record would be much more reliable than I am.

I am living proof that there is a clinical need for EHRs. Also, there are now reports from Out of Hours practitioners and NHS Direct, that EHRs, where they have been implemented in England, enhance patient safety. And Scotland, whose ECR system is now nationwide, has been saying the same thing for nearly a year. It seems to me that the only nay-sayers are conventional GPs, the doctor/patient confidentiality lobby and the BMA. Not the most innovative community.

The present "spine" may not be the best place to hold all these records. But what gets me is that the nay-sayers have never come up with a Plan B. In the meantime, the poor English patient wallows in a paper-based limbo.

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Hey, Philip, whatever happened to my comment to this blog posted on or around 12 March? I hadn't mentioned it before, because your silence since your 11 March posting, made me thing you might be ill, which would explain your not posting my comment. However, your posting on 22 March shows me that you are alive and well Gott sei dank.

Your title for the above piece was "What is the case (business or clinical) for a "universal patient record"?" In my comment, I am making a clinical case, albeit one that runs counter to conventional wisdom.

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