A major NHS scandal – or a storm in a teacup?

(You decide.)

You may remember that the Maldon and South Chelmsford PCT sent a press release to all the local newspapers – which was used verbatim by most – saying that it had been given “a clean bill of heath” by the Information Commissioner. Well here’s the story behind that … and I’ll save the best ‘till last.

The boring bit:

This concerns the principle of confidentiality – which, from the time of Hippocrates, has been the cornerstone of the doctor-patient relationship.

Briefly … the story is as follows:

The PCT were running a practice … which was selling patient data/records to a third party. I personally feel very uncomfortable about this sort of thing – although, in fairness, I should point out that there are quite a few docs who don’t see the harm in it. This particular scheme had been passed by an ‘ethical committee’ on the basis that posters would first be displayed in the waiting room. (The ‘ethical committee’ clearly didn’t have much time for those people who rarely visit the surgery and therefore would be unlikely to see the notice … nor, indeed, for the people who do visit but don’t systematically read every notice on the board.) That apart, the PCT saw fit to display a large poster in the main waiting room saying “Here to listen, not to tell” (which wasn’t really what the ‘Ethical Committee’ had in mind.)

When I blew the whistle, a tiny (A5) sized poster appeared in the upstairs waiting room of the practice saying in a roundabout way that this project was being undertaken for “research” purposes. In so doing, the PCT walked into another trap; all such projects had to be approved in advance by their ‘Research Governance’ person (This is one of those jobs you see in the Guardian – each one gobbling up tens of thousands of pounds of taxpayers money, which is one of the reasons you don’t see the improvement you’d expect in the NHS for all Gordon Brown’s billions and why I (and other clinicians) see “starvation in the midst of plenty” – sackfulls of dosh being thrown away whilst many clinical services are run on a shoestring.) Anyway – returning to the theme - I wrote to the ‘Research Governance’ man to see if he’d approved the sale and it turned out he hadn’t heard a word about it.

I also wrote to the Information Commissioner. Simon Ward’s view on this (Simon Ward being a ‘Compliance Officer’ for the Information Commission) was set out in a letter dated 12/1/05. It read as follows: “The data is provided in anonymised form.  In view of the fact that no patient identifiable data is forwarded to THIN, there would be no requirement to seek patient consent for this disclosure.” (NOTE – ‘THIN’ SET UP THIS SCHEME AND WAS THE PURCHASER OF THE INFORMATION.)

Is Mr Ward correct? I think you can argue against this on two counts: firstly, if you gave any of the (so called) anonymised data that washes around the healthcare system these days to an investigative journalist, my guess is that they’d come up with a name for you ninety nine times out of a hundred. Secondly, is it true that patients have no claim on their medical records if, for example, their names and/or addresses are removed? I gather that the Source Informatics case holds the key here.

(R and Department of Health (Respondent) ex parte Source Informatics Ltd (Applicant) (1999) LTL 2/6/99: TLR 14/6/99: (1999) 7 Lloyd's Rep Med 264: (1999) IT+CLR 374) See also Times June 14th 1999.

Mr Justice Latham, a man of wisdom and sagacity, said that the Department of Health (which doesn’t have a wonderful record when it comes to upholding the principle of confidentiality) was correct in saying that patients have rights over their records, even when they have been ‘anonymised’ … and irrespective of whether or not there is aggregation.

The case was reversed in the Court of Appeal … given that this case concerned only prescriptions … and seemingly on the grounds that the judges believed that prescriptions did not contain very much confidential information. (They record names, addresses, often dates of birth and, of course, drugs prescribed.)  If you remove the identifying details, the judges seemed to think that the people buying the data wouldn’t get very much more information from this exercise than they would if the reps asked the doctors and pharmacists how many prescriptions for ‘New Improved Bloggo’ they had written or received in the past week. (They knew that this was already going on.) The medical records are a very different matter, however – there’s all sorts of juicy material in these! I’m not a lawyer (and would appreciate feedback from those with a better grasp of the subject) but I suspect a different conclusion would have been drawn on appeal had the subject under discussion been the intimate secrets of the patients concerned rather than simply the medication they take.

That apart, this seems to be the case that is quoted to justify disclosure of (so called) ‘anonymised’ patient data (often without the patient’s knowledge or consent.)

Those interested can do a bit of research - websites I have found include:

http://www.swarb.co.uk/lawb/ipMedConf.shtml

http://www.swarb.co.uk/lisc/Information.shtml

http://www.swarb.co.uk/lisc/Intellectual_Property.shtml

http://www.courtservice.gov.uk/View.do?id=149&searchTerm=Source+infomatics&ascending=false&index=25&maxIndex=27  (This one was unavailable last time I checked – but it may just have been a temporary blip.)

My view, for what bit’s worth … I don’t think practices should sell their patients’ data – even when it is ‘anonymised’ – it’s a breach of trust. Remember that the more information you remove in the attempt to ‘anonymise’ records, the less they’re worth … people want to know how old you are when you have your heart attack, they want to know roughly where you live so they can tell if the statistics are more or less favourable in one particular part of the UK … etc etc.

I also think that PCTs should set an example – rather than breaking their own rules and then pretending all is well. The simple rule is ‘always get the patient’s consent’ – it may be a bore, and it may mean that I’m the dullest guest at the dinner party rather the one with a fund of hilarious anecdotes, but believe me it’s the only way to protect patients’ interests.

As in the case of justice, confidentiality must be upheld AND must be seen to be upheld.

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OK, now the meaty bit.

Cutting a long story short …

In a letter accompanying a 'Request for Assessment' dated 25/8/04, which was sent to The Information Commissioner's Office I said:

As for your involvement in this matter - when the PCT left the practice, my computers were sabotaged whilst I was out of the building and ALL the data removed and transferred to 'XXX XXX XXXXXXX.' The operating software (referred to in the correspondence as 'Vision') was also removed - so, although the hardware was largely left intact, the computers were of no use for running a practice. I had made it clear that I would continue to run Greenwood Surgery - and the expectation was that I should do this without the benefit of any records.

I went on to say:

I later approached the same software company which had been involved previously in order to have the situation rectified. In a conversation with Mr X of In Practice Systems, he mentioned his surprise at finding me still at Greenwood Surgery. He told me that, in a meeting with the "key players" who were involved in the moving of the data he asked what were my plans (given that I have been a customer of this company, in its various guises, for many years) ... and was told that I was moving out of Greenwood Surgery and into the @@@@@@@@@@@. I asked him if he would be prepared to give me this in writing (as this would be evidence of removal of data by deception.) He said he could not, giving the impression that he found himself in an embarrassing situation.

I questioned him again about this in a second conversation  (see my notes - attached) - in this conversation he was quite specific - he confirmed that he had been given this information (that I was moving out of Greenwood Surgery) - and, lest there be any doubt, went on to say: "I very pointedly asked the question in the presence of the key individuals."

Given that I couldn’t get anything in writing out of the computer people at the time (and some months later, I gave the MD a second chance to come out of this sordid business with some honour before I went public) I decided to release details of the next conversation I had with Mr X. Have a read (below) and see what you think. I’ve highlighted the more important bits in case you want to skip through it.

Conversation between Mr X of In Practice Systems (Computer/software supplier) and John Cormack (JC) of Greenwood Surgery.

Exchange of greetings.

MR X: "How are you?"

JC: "I'm alright. Thank you very much for leaving a message this morning. So you have quoted for the extra printers."

MR X and JC: Conversation about printers. Mr X confirmed he'd sent JC quotes for additional printers for Greenwood Surgery.

JC: "Well look ... I've sent those off to the PCT. I'm not sure how much cooperation we're going to get in the first instance."

MR X: "OK"

JC: "Because I think, mainly because, whoever it was who told you that I was moving to the @@@@@@@@@@@ would presumably get found out when they get the big bill so ... I shall have to sort of argue that ... but I don't think there's any problem because, as I said to you, the deal with the PCT was that they should leave it as they found it ... in other words that they should leave the place in working order ... as a working surgery."

MR X: "Yea - I suppose in any case there would have been equivalent costs - um - it's not - what they've done has not substantially added to the cost except in terms of engineering ... so what we have is a second visit which wouldn't have been required ... um, so, in that respect, what they've done, although somewhat odd, is not going to contribute overall to the extra cost. Um, one thing ... obviously.. er ... I hope I tried to make it clear in my message, was that, I'm just very concerned that we have the full cooperation, um, when it comes to accessing your patient data."

JC: "Yes - sure, sure - yes - we'll have to make sure, `cos, of course, it's a waste of everybody's time and money if an engineer comes down and is kept hangin' around and nothing happens ... so ... yea ... alright.

Was it the XXX XXXXXXX people or the PCT people who said I was moving to the @@@@@@@@@@@?"

MR X: "Oh ... well it was ... um ... I think it was the PCT themselves, actually."

JC: "Oh, right."

MR X: "Urn yea, I mean ... it's probably not worth dwelling on really ... but ... er"

JC: "Well no, its' just that, if it was them that said it, and they're paying the bill, um, then they can't argue with it cost-wise if they've given you - knowingly given you - inaccurate information so ... um ...

MR X: "Yea

JC: So, it's a bit ... er ... I think they will be, be contrite enough to do the decent thing - I hope they will, anyway.

MR X: Oh, I ...

JC: If it was someone else who said it they could say well: "It's nothing to do with us" - you know ... we just er ..."

MR X: "Yea ... I mean I would ... I, I very pointedly asked the question in the presence of the KEY individuals so, um, you know, I don't think ... I think it would be odd if they actually argued that."

JC: "Yes - yes - ah - I mean, particularly as you asked the question because I'd held the contract for years and years and years - and, um, I guess they must have known they were, sort of, trying to pull a fast one. But there you go - that's life."

MR X: "Well yes, indeed."

MR X: "Just to come back on your point about the patients ... " ... other matters were then discussed.

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I have made sure that the subject has been mentioned again and again in subsequent correspondence – so there is a mountain of corroborative evidence – but I still think the original conversation is the key here.

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So, what did Simon Ward decide? He basically decided not to get involved, accepting the PCT’s version of events..  The Chief Executive of the PCT had written to the Information Commissioner on 5/1/05 to say:

“Thank you for your letter of 22^nd December about Dr Cormack’s allegation that the PCT either obtained or transferred a database by deception. I would like to say from the outset that we totally reject Dr Cormack’s claims ….”

I was gobsmacked! On December 19, 2004 I’d written to Ward as follows:

“The PCT told the software company (InPractice Systems) that I was moving out of Greenwood Surgery and into XXX XXX XXXXXXX  (knowing full well that this was untrue) in order to obtain the data. I cannot imagine that a more serious charge concerning a PCT has ever been (or will ever be) laid before you.”

And what does the PCT make of all this? They’re sticking to the ‘clean bill of heath’ story … which is all very well until you look at the evidence. Here’s the latest letter from The Chairman:

Our Ref: TP/R             5th May 2005

Dear Dr Cormack, I am responding to your e-mail of 2nd May to Terry Collin, who wrote to you on the 13th of April during my absence on leave. As I have made clear in previous correspondence, we will investigate any claims you make where they are substantiated by evidence. In respect of your charge of deception in respect of data transferred from your building to XXX XXX XXXXXXX, you still have not provided any evidence upon which we could investigate. As Terry Collin made clear, I regard the matter as closed until such time as you provide some evidence to substantiate your various claims.   Yours sincerely  Tony Plumridge, Chairman

My reply to the Chairman, Maldon & South Chelmsford PCT, is as follows:

Our ref:  Woodhamgate             3rd June 2005

Dear Mr Plumridge, Thank you for your letter of 5^th May. I don’t think there’s any point in continuing a correspondence in which you say there is no evidence … and I say that the evidence you yourself have seen is damning (whilst the StHA, which long ago crossed the border between complacency and complicity, looks on and does nothing.)

I think a wider public should be allowed to decide … so I intend to publish evidence you already have in your possession. Let’s start with that relating to the meeting attended by the “key players” in which a representative from In Practice Systems was told that I would be moving out of Greenwood Surgery and into ‘XXX XXX XXXXXXX’, thereby removing the patient data by deception. It will be interesting to see if others agree with your contention that the PCT doesn’t have a case to answer.

(I should point out at this point that The Essex Strategic Health Authority … and the DOH/Sir Nigel Crisp/Secretary of State … also have copies of the relevant documents … which makes the ‘Woodhamgate’ element of this affair all the more poignant.)

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You decide: Where does the truth lie here? Are the Chief Exec and the Chairman of the Maldon & South Chelmsford PCT to be taken seriously?

What of the computer man who told me about the meeting where he was told to move patients records (i.e. their computerized data) out of Greenwood Surgery on the basis that I would be moving with them? Had he been smoking too much Happy Baccy? Was he a storyteller to match Karl Friedrich Hieronymus Baron Von Munchausen? Or was he simply telling the truth, the whole truth and nothing but the truth?

And does it all matter, anyway? Is it really such a big deal that patients were put at risk by the removal of their medical records? Isn’t this just a little colloquial spat of the type that occurs every day of the week in every walk of life? Or does it denote an alarmingly lax view of the principle of confidentiality in particular and medical ethics in general both here in Essex and within the wider NHS? The choice is yours.

Dr John Cormack

If anyone wants to see all the correspondence with the Info Commissioner, by all means send an e-mail to greenwood.surgery@btintenet.com. Please allow a few days for a reply … and if at any time in the future there get to be too many queries to handle individually, I’ll put the correspondence on the website.