back to article Time to kill the zombie health records

When the country is being asked to get ready for cutbacks, the last thing you’d expect is for civil servants to be squandering millions of pounds of public money now - and racking up huge bills for the future - or perhaps you would. That is the allegation made by Phil Booth, national coordinator of No2ID. He claims that in the …

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Unhappy

opting out is facebook-like

I live with iatrogenic health problems , and such wish to have very little to do with the healthcare system. The letter from GP arrived some moths ago, informing me they intended to upload the records from our local surgery. My P.A. read the letter through to me. In order to opt out we had to go to the website of the NHS download a pdf , print it , fill it in and post it to the surgery. A system designed to either fail or hack off the individual so they give up.

As with all data , it has a value, it will make research very much easier for health department researchers and drug companies. ..but also if breached Insurance companies and sellers of snake oil, potions and stair lifts. The value to the individual is presented as any doctor can have access to your records and thus your treatment can be fast and without delays from locating your records.

The PNC criminal data base has been breached for profit , it is fair to assume this one will be too. The borderline for a data breach against you medical records is no longer the network at your gp surgery but the most compromised terminal in the NHS system.

I think the mindset is to collect the data what ever happens. The fast-flux transfer between political and civil service sides of the Dept. of Health and the serving Industry means the boundary between the needs of the indigenous UK pharmaceutical industry and the greater good of the individual user of NHS services has become blurred in the eyes of those over seeing this project.

Not only should this monumental data colander be abandoned , but A 5 year moratorium on any one with decision making powers involved in a ministry or department and them transferring to a provider industry. If civil servants and minsters want to strut about talking about their "services to the public" and wearing pretty little bows and "good boy" stars from Queen Betty then this is the price they should pay.

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Anonymous Coward

Upvoted you.

Partly because I agree 100%, and partly to upset whichever government fanboi is methodically downvoting every posting in this thread that makes sense.

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WTF?

@AC 0907

I'm not a fanboi. That implies I'm blindly devoted to a concept because of who espouses it.

I simply have a carefully considered opinion about the relative merits of the SCR scheme that doesn't rely on the standard straw-men ("the data will be wrong becasue it's input by minimum wages trained baboons", "it means I'll be forced to carry ID wherever I go", "insurance companies will steal my medicalz!").

I find most of that type of reasoning spurious. I don't think the implementation of SCR is perfect by a long shot, but it's better than whhatever my GP must use currently, which presumably involves random number generation.

So yes, I downvote posts where I don't think the issue is considered in a balanced way when held up against reasoning like the above, or where someone attacks a poster for the manner in which they post, or where they are just wrong. That's the point, and you are free to do the same.

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FAIL

A note on logical fallacies

To quote wikipedia*:

"A straw man argument is an informal fallacy based on misrepresentation of an opponent's position".

I would suggest that worries about data accuracy and veracity, and the leaking of that information to third parties are both legitimate concerns that do not appear to be adequately guarded against. I can't see these concerns being put forward in such a way as to misrepresent the views of anyone here. As such, these are not straw man arguments.

A famous example of a straw-man is to claim that since Hitler was a vegetarian, then vegetarians must be fascists.

I would also like to point out that nobody here would appear to be claiming that this system would lead to people having to carry ID. As such, your argument itself ironically constitutes an example of the straw man fallacy.

I have to agree with you on one point, however - you are not a 'fanboi'. Such name-calling constitutes another common logical fallacy, the 'ad hominem' attack.

*Yes yes, I know everything written on wikipedia is lies, etc. etc.

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Pint

What's an SCR?

One of these things that connects GB to FR maybe? Silicon Controlled Rectifier with electrickery and nuclear guff? Where is a manfrommars?

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The SCR scheme is very vague

I have had the mailshot, and subsequently tried to find out what data is involved. For example, how are we idenitified? If I'm in a car crash 300 miles from home, unconscious and alone how will they get at my medical records? How will they know they are looking at the right one?

But all we get is the ultra-vague platitudes of the PR material.

Then there's the "later" linked Detailed Records. What is this system? What is the impact of opting out of SCR? Who will have access? Again, super-vagueness and platitudes.

We have decided we will just opt out regardless. I can't get proper details about what is going on (despite millions being spent on glossy mailshots) and I have no confidence in CfH.

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Vanishingly vague...

I love the bit in the mailshot which deals with security:

When the new system is fully up and running... [A quite impressive list of federated security controls] Until the controls are fully in place...

So basically, "trust us until we've got it working". If anything goes wrong in the meantime, it's your local PCT's fault, because their security wasn't good enough. Not CfH's fault at all. Nice.

I'm waiting until the first service pack before even considering it.

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Alert

Re: the SCR scheme is very vague

I agree.

The initial upload will be medication in the last 6 months, adverse reactions and allergies.

The "enrichment" phase (no further notification tot he patient) will include diagnoses and other information uploaded at every consultation - or a set of data nationally agreed or decided by your GP practice - either in consultation with your GP (I can see surgeries running *very* late!) or with a notice in the waiting room.

Following that, the next step is to include all correspondence - A&E letters, hospital discharge letters (the quality of these would ensure that anyone relying on them for information would be putting themselves and patient at risk - unless there is very serious effort to improve them everywhere: no sign of this at present).

In Scotland, they have the ECR (Emergency Care Record) which is - **and will remain** an upload of medication and adverse reactions/allergies only.

Cheaper, more likely to be accurate (apart from lacking secondary care medication such as chemotherapy) and very useful for medication reconciliation (making sure the hospital doesn't give you something which has serious interactions with your regular medication).

I'll say it again: if you have serious allergies, major conditions or multiple medication, invest in Medic Alert : no-one is going to stop resuscitating you to check whether you have a SCR.

If you are elderly, confused, multiple medication and frequent admissions, a SCR might possibly be of benefit - but you or your carer could ask for a summary print out from your GP practice.

Even if you have a SCR, the evidence so far appears to be that, even in Hampshire where there has been a similar upload of patient records since 2004, the number of times these records are accessed by urgent care services is remarkably low: so is the SCR (as opposed to the ECR) really value for money?

Security and large databases are contradictions in terms: and both Alex Salmon and Gordon Brown are known to have had their ECRs accessed ilegitimately: they must be glad they didn't have enriched SCRs!

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Unhappy

..how are we identified...?

If I'm in a car crash 300 miles from home, unconscious and alone how will they get at my medical records? How will they know they are looking at the right one?..

Well, the nurse at my mother's surgery was rattling on about blood test results etc to her the other week and fortunately my sister was there with her and detected a rat... poked her nose around to see the screen to find a different patient's records there!!! OOPS , wrong patient and records... and that is in her OWN doctor's surgery..

I think I would rather take my chances being treated as 'we do not know his records so better take care' than 'according to the records this chap has X and Y wrong with him, use these drugs....' and it is the wrong medical records they are looking at... !

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Anonymous Coward

Why should they care?

The bureaucrats in charge of this project don't give a damn - that can be taken as a given, with no surprises. They look after their own little empires knowing full well that - unless the government suddenly develops real balls, which is unlikely - they're 100% fireproof. No-one is ever sacked, and if they were asked for their resignations tomorrow, they'd leave with a golden handshake and walk right into another old-boy sponsored sinecure job.

We aren't a priority with such people - they have their own agendas, which are nothing to do with the public or even for that matter very much to do with the government. I've worked for such people, and their contempt is absolute - you only have to listen to the chit chat as they socialise to have your eyes opened.

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by the way

Google, Amazon, Salesforce, Spotify, Facebook etc all have robust online systems which give secure access to patient, sorry, customer records.

Why does the gov keep wasting squillions on trying to develop health records systems from scratch when they could buy in proven cloud based technology and modify it?

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Standards?

Problems with all of the above... no standards!

In order for a record to be understandable by all computer systems you need one standard.

Google for one does NOT reach NHS security standards which is why the NHS uses NHSMail and not GMail.

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@Seareach

In "...could buy in proven cloud based technology..." you missed out a couple of words. Revised "...could buy in proven TO FAIL cloud based technology...".

Or have you completely ignored all the stories on the privacy breaches in those systems?

I'm with No2Id on this - just get rid of this costly privacy-invading pile of crap.

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Standards, we don't need no stinkin' standards!

"Google for one does NOT reach NHS security standards which is why the NHS uses NHSMail and not GMail."

And the NHSMail system is so locked down and broken, that those in the NHS use Hotmail.

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Trying to force the govt's hands?

With so many cuts, perhaps this is the contractor trying to force the govt to *not* cut this project. Or at least, to maximise the amount billable before it gets cut.

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yes minister?

Sounds like an episode of "yes, minister".

So sorry, Minister, but all the records have already been uploaded, and someone went through and "used" each one, we can't possibly delete them now. Should I go ahead authorising the budget for the next 10 years?

To which the only response SHOULD be: "No, you're fired. As is the rest of the staff. And the project is not only cancelled, but will be shredded into very fine little pieces. You can be on the street, or you can be one of the pieces."

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Many a true word.

What made "Yes Minister" so funny was that it was so frighteningly close to the truth.

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Anonymous Coward

Just the other day...

I was walking through a hospital car park and found a nice big bundle of patient notes that had fallen off a trolley being pushed by a pair of office girls, loaded to overflowing with a pile of care records...

I caught up to them and gave it back.

No point here, just saying.

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WTF?

Also Happening With ContactPoint....

The policy & implementation teams aren't going to quietly disband, give back the money and go off to the dole queue. They're trying to reconfigure the projects as local initiatives, arguing that the benefits were recognised years ago and shouldn't be sacrificed.

I know that in at least 3 council areas local to me, there is a rearguard battle to continue Contactpoint. The killer problem is subject consent - eg how can they ignore it without without national legislation? We should watch out for 'creative' proposals being slipped under the radar to get around this.

www.no2id.net

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@B Mulholland

From what I gather if they can find a piece of ID on you (driving license, passport etc) which carries enough information to reliably identify you, then they will use it to call up your record and look for things such as medication allergies ( eg penicillin) or other allergies (latex, food allergies) plus other illnesses (asthma, COPD, high blood pressure, angina) or even what medicines you take (very many medicines react)

If they can't reliably identify you then they will treat you as a john / jane doe, it just means without access to your medical records, your treatment might take longer and not be as effective or be higher risk due to not having your medical history and being unaware of allergies / other medications.

Frankly I would rather have my records online and available to the doctor to save answering the same questions over and over and over again (that alone would be a godsend) and to potentially save my life by ruling out illnesses already tested for in the past and therefore allowing them to focus on other possibilities.

NO2ID used to make sense, more and more though they are sounding like chicken little (the sky is falling, the sky is falling) or the church (progress is evil and will result in us all burning in hell, I dont like the idea so no one else should)

If you don't like it, then opt out, simple, stop moaning and get on with your life. Then again that would mean getting a "REAL JOB" instead of being an "activist", "campaigner" or other such non jobs.

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I still don't see how they can be sure

I can see the benefit of knowing about some existing conditions, medication, etc. but how likely is a match for most names? If they find your credit cards will they try to dig deeper and will banks etc. cooperate? And how can they be sure they are your details? Even your car doesn't identify you. For sure, the guys who pick you up can do a great deal of exploration to find who you might be but most of the time they can't possibly match you to a Health Record unless it contains loads of information about you and your stuff.

In these days of ID theft it would be pretty hard to ID me or anything in my car with certainty. I just don't routinely carry anything specific that I don't need. And if they are going to treat you on this info, and if it is critical, they need to be pretty certain. How often will they know? Almost every time when you are accompanied, and almost every time if you have conditions for which you already carry medical warnings. Otherwise... I'd be very surprised... unless the SCR data is very intrusive.

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Unhappy

@Mike JVX

I suppose the first part I don't like is the fact that it is opt-out - and that is made needlessly inconvenient. Let it be opt-in, and then people like yourself can sign up and be the canaries the rest of us can watch and see if it is safe...

It seems everything in Government these days needs to be "monetised" - notice the selling with minimal safeguards of DVLC data which we, by law, are forced to give. (As an aside, if I were a scam artist I would *love* to have the details of the 30k or so who signed up for ID cards.)

How long I wonder before health records are monetised to pharma or insurance companies?

So if you want to opt-in to be a canary, and wonder why your insurance premia suddenly go up, or find that you are "volunteered" to take part in medical trials, feel free to keep on taking the pills. (See - ad hominem attacks easily work both ways, and are just as unpleasant either way.)

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@Mike JVX - Stop with the Scare Tactics

Tell me, are you some sort of shill for a company who has a nice lucrative contract for this system?

I got a letter from my local GPs office saying "We notice from your medical records that you have requested for your records not to be held on the shared electronic record" and pointing out that there is a local record that I also have to opt out from with an attached form so I could fill that in and drop it in (very helpful of them).

Also attached was a document (see the link below) basically trying to scare the reader into thinking "OMG if I don't have a summary car record I might be killed by someone in the NHS screwing up and not taking the basic precautions that they should!"

http://issuu.com/skybluemedicalgroup/docs/if-i-do-not-have-a-summary-record---patient-leafle

Well I don't have any allergies, on-going conditions or other medical problems that anyone needs to know about. If I did then, like my friend who is diabetic, I would carry a card in my wallet or an emergency bracelet/ dog-tag with the relevant details in, rather than having the people attending me have to a) look for some details in my wallet and *then* phone up/ log in to a computer system to hopefully find *MY* records and not someone else with the same name or, even worse, the records of someone else which have been incorrectly input by some minimum wage contract staff.

So, no thanks, I'm not going to be scared into submitting my details to something, even one which I will have "24 hour access to" in order to check it for errors (why should I have to validate *their* data input?) and I don't think that this will give me "peace of mind" when I'll be thinking "how secure is their system *really*?"

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Big Brother

NO2ID's issues...

It's not the 'computerisation of patient data' that's the problem (I mean, have you seen the paperwork the keep at your local GP), it's 'keeping it all in one place' that's the problem. It introduces single point of failure problem - if it goes wrong, everyone suffers. It provides a single attack point for hackers / insurance companies / etc. It takes control of personal information out of the patient's hands entirely.

A much better solution is to have patient details stored at the GPs surgery and define a framework to allow other GPs, hospitals, A&E departments and so on to access the data. GPs would then be involved in the patients data access providing an extra level of control over the data.

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Stop

If I had a penicillin allergy

I'd make damn sure I always wore a medicalert bracelet.

If I had an embarrassing health problem, such as an STI, it would be the business of my GP, and NOT a paramedic if I happen to get hit by a bus.

And seriously, do you think any qualified doctor would not be able to spot the rather obvious symptoms of COPD?

Add to this the fact that in most cases, people being admitted to hospital are fully conscious at the time and quite capable of giving their own medical history, there really does seem to be little point to this system, and you have to ask yourself whether the costs justify the perceived benefits.

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Unhappy

@Skizz

Yes, I agree. I think your solution is reasonable. However, I think it would become unmanagable and might require some sort of roving regional IT team, or maybe someone in each surgery with some responsibility for this (for standardisation, compliance, performance issues maybe?) and that could be a problem on its own.

I guess if I were the hypothetical patient here I wouldn't care whether the point the system failed was central or local to me, and the central model seems more robust to me.

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Happy

My doctors...

...has been known to cut bits off me and inject me with things purely on my verbally-declared name and DoB.

If I am out driving, I will almost always have my wallet on me, which contains my driving licence, which has sufficient information to identify me. In fact, I almost always have my driving licence on me whereever I am. Now, at risk of inciting any "in our facist police state" or "papers, citizen" comments, I think there should be a requirement to carry ID when you drive like most EU states and (I believe) the USA. Mind you, I'm not averse to having to carry ID all the time.

However, I digress. Given the (relatively) low threshold for ID verification I have seen in the past, I would imagine that any ID you might be carrying, the registration details of your car (I assume some sort of accident scenario here, where the police would be present), or the PNC insurance database would probably be sufficient to locate my SCR.

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Insurers?

What's the betting that insurance companies are (at least in part) responsible for pushing ahead with this whole mess? Nobody else seems quite so obsessed with getting hold of medical data, and previous encounters with them seem to suggest they view it as a right rather than a privilege, with all the rather cavalier attitude that goes alongside such an expectation.

Whether or not it's the case, it's worth opting out on that basis alone. Of course employing a less than conducive method of doing so is par for the course, but it's probably better to play the game to get the desired result than to have to try to clean up the mess afterwards, which if prior experience is anything to go by is neither entertaining nor particularly successful.

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Flame

Crap in, crap out

What's the problem?

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Anonymous Coward

We have useful records in each general practice

They are useful because they mean something to those that wrote them and use them. Adding a shim or adapter to allow other systems to make proper enquiries of them is a job that has been done repeatedly in other areas of IT.

One advantage of several of that is that records would be interrogated individually, and that records of access would be very close to someone who is unlikely to decide that an easy life or national confidence requires ignoring a suspicious access.

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Children cannot opt out

... and of course parents are not allowed to opt their children out of this scheme - only adults have the option not to have an SCR.

If you read the leaflets and the opt out form (which of course dosen't come with the leaflet and you have to accuore yourself) it treats you as if there is something wrong with you for wanting to opt out.

To be honest with the way it is written it can be paraphrased as:

"You live in the UK therefore your medical records are ours to do with as we wish and you have no say about it - so we don't look to bad we will give you an opt out option, but we will suggest that you are not capable of looking after yourself if you do"

Considering how poor PC security usually is at GP surgeries, and the fact there is no consistancy of IT access accross the various PCTs, I cannot see a way that medical records will not be accessed by unathorised 3rd parties.

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Unhappy

Why the focus on catastrophe

It seems that a lot of people are constructing a straw man argument to oppose this scheme. A substantial amount of the criticisms directed at the SCR are based around hypothetical scenarios that involve some kind of major accident, rendering the patient unable to ID themselves. SCR or no SCR the problem of ID in these cases will remain.

Transcriptions errors are a major problem in medicine, it seems that although there are legitimate concerns regarding privacy there is a relatively higher potential for benefit here. It seems that El Reg is becoming a bit of a safe haven for the reactionary, anti-establishment brigade...

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WTF?

Really?

I would suggest that it is those who are in support of this scheme who are constructing the 'straw man argument' that you speak of. IN the absence of a major accident, these records would appear to be of little use.

The one advantage I have been made aware of that the SCR may bring is the issue of medications and notes following patients when they are transferred from one hospital to another, e.g. to a tertiary centre for a major operation, often across PCT boundaries. Because of the mess most hospital systems are already in, there can be delays in getting things like x-rays transferred.

IMHO, this problem would be best tackled through better integration of systems between hospitals, without the need for long-term persistent data about patients. Proper digitisation of diagnostic data, such as x-rays and MRI scans, combined with an efficient pathway for one hospital to request this information from another. At present, this sort of request requires a call to a radiology department, and the hope that someone is available to find the appropriate prints, and send them through an internal post system, or courier.

It is worth noting that in these cases, the identity of the patient is known and it is the acute medical information that is important, not the patient's medical history from their GP, which is of little relevance.

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@AC 0847

Blimey, what a refreshingly sensible opinion!

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FAIL

@Anonymous Coward

If you think that having lots of people having access to your medical records is so great, please post them here.

Oh, but you're anonymous...

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Joke

@ Graham Marsden

While we are on the subject of critical thinking, thats what we call a 'false implication'.

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Stop

Catch up old boy.

I suggest you have a read up on PACS with regard to digital transfer of radiological images. Actually, if you want a good example of how IT can work well in the healthcare setting, and how it can offer considerable benefits, you could do worse than to see how radiology departments across the country have introduced PACS with minimal fuss and without the drama that we see here...

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Ah well, that's all good then

No need for all this patient record guff at all then.

I'm only going on the anecdotal evidence that I have from a junior doctor friend of mine. She worked in a tertiary centre* hospital in Bristol and experienced this type of problem with patients transferred from other local hospitals. I suspect some are better administered than others.

* For those that are not aware, tertiary centres are those hospitals that people get sent to for specialist care, Brisotl has several, such as a Children's Hospital, Eye Hospital and new cardiology unit.

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FAIL

@Anonymous Coward

Actually that's what we call "Taking the piss"...

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Bronze badge

But is the data correct?

I'm well aware of the advantages. I've had a few too many emergency admissions to hospital.

But the mailshot had NOTHING to say about ensuring the data was correct,

If this information is supposed to include such things as drug allergies, and they're not willing to mention this part of the problem, can any competent medical professional rely on the results?

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CfH : new chief exec announced as Phineas T Barnum

emergency treatment will not be changed/affected.

Chronic problems seeing someone else about - you can talk to them

You will still have to give a history - all those questions whether this happens or not.

Minimal benefit at the end of the day.

Might stop some "gaming" of the system - if the person doing so admits to who they actually are.

And if you have a severe allergy, I would rely more on bracelet/tattoo than CfH

And I am in a position to know lots about the care delivery - and the reality on the ground of CfH

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Anonymous Coward

repeated questions

The reason they ask you the same question repeatedly has nothing to do with the availability of your records, that's going to carry on regardless

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Flame

NO2ID likely to be in business for a while

As has been pointed out (and to mix metaphors) the folk on various gravy trains have *no* plans to desert this particular trough.

They're digging. They will do (say and write) *whatever* is necessary to keep their jobs. Some because it's a cushy little number and others because they *believe* in their sacred duty (and *right*) for the civil service (never of course themselves) to collect *whatever* information it wants, whenever it wants of whoever it wants.

No need to ask. No need to know.

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Fear

Anyone choosing to stray from the sunlit uplands of SCR benefits is given the 'be afraid' hard sell several times before they can opt out. The mail out mentions going online for more info on opting out, but is very sketchy on the details of how. It does however leave you in little doubt you are being a silly boy and putting yourself at risk by saying no to nanny, more by alluding to bad things in dark Tory like language than actually stating what they are.

Bizarrely, a supposedly positive point given for having an SCR is that "The NHS has significant problems now with lost records and test results and treatment and prescribing errors." Hardly confidence inspiring. Given governments track record with data, it's hard to see how more records will make this particular Piss Up In a Brewery problem any easier - or is there an assumption that if there are enough different records around they won't be able to fuck all of them up?

The issues around SCRs are all about trust, competence and the sudden unexpected shifting of goalposts, usually in the direction of the private sector for financial gain. UK.gov of any colour has a very poor track record on all of them where data is concerned, and they'll keep meeting resistance till they can point to some longer term evidence they are getting it right.

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FAIL

Opt-out Form? or just no clinical data?

Check the wording on the downloadable opt-out form!

What it actually requests (unless you alter it) is for your SCR to have no clinical data added to it.

So even the standard opt-out form doesnt actually prevent you getting an SCR.

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Mailshot designed to stop the opt out

I received the letter and the nice information about how to get the relevant form to opt out of this insecure and not very reassuring mess of a project. In the envelope was another document to allow me to order the form/letter in another language. Surely it was not beyond the wit of the people sending the letter to send me the opt out form as well.

This mailshot was designed to stop people opting out by making it necessary for them to jump through the unnecessary hurdles to do so. Surely a fairer and more appropriate approach would have been to include the opt out form (so people could make an easy choice) and give people the web address to download foregin language versions of the documents.

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Some questions

I can see both sides of the argument on this one. I suffer from high blood pressure for which I take medication. Were I to arrive in a hospital unconscious and in need of emergency surgery, I would prefer the operating theatre staff to know about my medication. So having an SCR may help.

Also there's nothing in my medical history that I'd be worried about, should it fall into the hands of a data-thief. No grounds for blackmail, nor even embarassment.

What I don't get, is why an SCR cannot be deleted (or at least voided of content) at any time in the future, on request by the patient. If this were the case, my nagging doubts would be assuaged.

I was dead against ID cards because of the nature of the data that was going to be stored -- everything an ID thief could possibly want to know -- and because of the criminalisation of anyoune who failed to tell the state whenever anything that they wanted to know had changed. There are doubtless a few people who feel the same way about their medical history, because it begs questions about their lifestyle or suitability for employment or insureability. But for the rest of us ... am I being hopelessly naive? What should I be worrying about?

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Dear Mr Nigel 11

It has come to our attention that you have been treated in the past for high blood pressure. As such we are increasing your life insurance and car insurance premiums as we consider you to be a greater risk.

Yours sincerely,

The Big Insurance Company.

PS Still, you've got nothing to hide, so why should you worry?

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WTF?

errr....

You understand that you are supposed to declare pre-existing medical conditions if you are applying for life insurance don't you? I mean if you don't and then keel over you don't actually expect them to pay out?

I think insurance fraud is what it's called.

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Dead records

Consider they utility of secondary keys when Plod has a body on the autopsy table. But IMHO this is for the benefit of Big Pharma.

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