Killing the Golden Goose.

This may seem a strange charge to lay at the door of our notably technophiliac (when he doesn’t have to use it himself) Prime Minister but I’m going to make it anyway.

I accuse Tony Blair of sqaundering the potential benefits of information technology, in the House of Commons, with the Database.

Rest assured, this not a post about the general incompetence of the public sector when it comes to the commissioning and development of information technology projects – although one could write several books on that particular subject and not run short of source material – but about public perceptions of the use of technology by the state that have be largely generated by the Maximum Tone’s twin-linked obsessions of control and modernity.

Let me permit the good Dr Crippen to pick up the story…

Dr Crippen, and many other medical writers, have been warning patients for over a year of the dangers of the government insistence that all private medical records should be on the government central computer, eerily known as “The Spine”.

Doctors are now being asked to supply the names and addresses of patients who have “genuine” reasons for not wishing their records to be stored on the government’s centralised computer. These recalcitrant trouble-makers will then be rounded up and taken to a secret location in North Wales for “retraining”.

Do not be silly, Dr Crippen. This is not Stalinist Russia. This will not happen. For, you see, there are no genuine reasons. The medical commissars want…

...the names and addresses of objectors in order to write to them to tell them that their request would not be granted because their reasons were not “genuine”.

Dr Crippen is certainly not wrong to voice his concerns, nor to take Sir Liam Donaldson, the government’s Chief Medical Officer, to task for his request for the names and addresses of refusnik patients, but he is wrong about ‘The Spine’…

…or rather he should be.

The underlying principle behind the NHS ‘Spine’ is a good one.

By computerising key information about patients of the kind that may affect or impact on their medical care, should they be taken ill or injured ‘out of hours’ or away from their home area and making this information readily accessible to doctors in, for example, A&E units, the summary care records held in The Spine could, quite literally, save lives (and money, as well – but that’s another story).

The NHS’s ‘Connecting for Health’ website lists the kinds of information that The Spine is intended to contain:

Your NHS Medical Number (obviously, so they can identify your summary care record).

Your Date of Birth, Name and Address (again, so they can be sure that they have the right records).
Any known allegies or adverse drug reactions.

Any major treatments that have been provided in the past, are continuing or have been completed.

And that, according the website, is it, even though, if anything, there would appear to be additional items of basic information that probably should be included, but aren’t – blood group and any medication currently prescribed to the patient would seem to be the main omissions, unless these are covered under the definition of major treatments.

The NHS Spine is not intended to carry patient’s entire medical records, merely a summary of useful information – the full records are dealt with under a linked project to develop full electronic care records for all patients, with those records to held locallly and not not on a national database.

Now, there are are two other ‘features’ of The Spine that need to be considered.

First, what is its stated purpose?

Well the website tells us this, in something that vaguely resembles English:

The Spine’s objectives are to:

improve patient experience at all stages of care from initial contact, through referrals, to scheduled treatment and back to home

reduce the fragmentation of care caused by inconsistent systems and records

improve the quality of care by setting standards across clinical and social care networks

enable effective access to clinical and administrative information across care providers and locations to support the NHS

develop policy and research through improved and more accessible data.

And to top it all off, we’re told that:

The most rigorous controls will put in place to ensure the privacy of information and people, in discussion with their doctors, can decide what will be visible in their Summary Care Records. A service called Healthspace will enable people to access their own records 24 hours a day so that they can see the information and can check for errors. These are the first steps toward giving people greater access to and control over their health information.

Now I’m not a doctor, but I am a techie (amongst other things) and understand how information systems work, and on a technical level, everything listed here is certainly possible and within the capabilities of current technology. Incompetence of execution notwithstanding, it can be done.

But then I also have to ask myself, is this really the kind of system that doctor would want? Such a system could deliver many benefits to the medical profession and improve patient care – which is what’s its all about in the long run – but then one also has to ask whether such a system might look rather different had it been designed by doctors, and if so, in what ways would it differ from the government’s proposals.

Let’s start with a simple proposition.

The Spine and the information it contains will be most useful/valuable at the ‘sharp end’ of medical care, i.e. in situations where a patient presents themselves to a doctor or in brought in for treatment and the patient is more or less a complete unknown.

Yes, we’re back, again, to our hypotheticial hard-pressed and desperately overworked A&E medic, who in many cases, especially when faced with a patient who is unconscious or incoherent, would probably give their right arm for rapid access to basic medical information about the patient in front of them. With routine appointments of the ‘we’ve booked you in with a consultant in a couple of weeks time, Mr Smith’ the ability to move information quickly from A (the patient’s medical records) to B (the doctor) is not really a factor. But when A, in unconscious, having collapsed in the street, and B, is an working in an A&E and trying to save A’s life, then the more relevant information you can get to B, as quickly as possible, the better A’s chances are likely to be.

What doctor’s working at the sharp end of emergency medicine want is fast access to information about the patient in front of them that may be relevant to or assist with making an accurate diagnosis and determining the right treatment to administer.

Or, simply, they want a system that will help them save lives. And by no great coincidence, that also tends to be the kind of thing that the general public wants, just in case they ever find themselves in position B.

How does this translate to the objective listed above?

Well, for starters, ‘enable effective access to clinical and administrative information across care providers and locations to support the NHS’ is obviously relevant. No its not just relevant its axiomatic – if the system cannot do this one simple task then it serves no purpose whatsoever.

‘Reduce the fragmentation of care caused by inconsistent systems and records’ also seems to be a good one. It would be nice to think that one would get broadly the same standards of care whichever A&E unit you end up in and this is obviously not going to possible if the only unit with access to your records is your local one and you’re taken ill or injured while away from your local area.

So far so good…

Then there’s ‘improve patient experience at all stages of care from initial contact, through referrals, to scheduled treatment and back to home’ – okay, perhaps, but only in the case of initial contact is rapid access to information sufficiently critical as to require a central national database, so we’re stretching things here.

And while ‘develop policy and research through improved and more accessible data’ is a nice thing to be able to do, that’s strictly speaking only a byproduct of having this kind of information system, not a primary objective, which leaves only, ‘improve the quality of care by setting standards across clinical and social care networks’.

No, sorry, can’t quite what that has to do with our hypothetical ‘Emergency Medic’ scenario. Standards may well have their in the grand theme of things, but I’m rather more interested in how this will all help our hypothetical doctor get one with doing what he (or she) does best, some actual ‘doctoring’.

Does it not strike you as just a little strange that nowhere in these objectives does it state, clearly and explicitly, that the single most obvious and fundamental purpose of this system is to provide doctors with information about patients that contribute to saving those patients lives?

Am I just being a bit too obvious here, or is that not the primary function, purpose and raison d’etre of the medical profession – in which case you might think that this should be acknowledged.

Okay, so the press release is rather better, inasmuch as it does state clearly:

The summary care record will provide basic information to anyone in England treating patients out of hours, in an emergency or away from home. It will ensure they receive quicker and safer care.

Thank you. Now why could you not just have said that in the first place!

This kind of thing in entirely symptomatic of the government’s attitude and approach to the use of information technology in the public sector, and its this that more than anything else, even the abject incompetence of its commissioning processes, that is eating away at public confidence.

What doctors, and other medical professionals, actually need from a central NHS information system is very simple; fast access to reliable, accurate and relevant information that assist them to fulfil their primary purpose, treating patients.

In the case of patient medical records such a system should simply deliver information from the patient’s ‘file’ to a properly accredited medical professional on presentation of the necessary electronic credentials to authorise their access to this information. As long is this information is stored securely and properly classified and tied in to an appropriate access control system such that, depending on the credentials presented, the user is provided with access only to those portions of a patient’s file that it is necessary for them to access to carry out their job, then the system should function very well.

This is not, in terms of information technology, complicated stuff – it’s bread and butter data processing, as long as you’re clear as to your primary purpose and build your system accordingly.

You need a closed network that’s not exposed to the internet and all those nasty hackers. You encrypt all data stored on the system and all traffic across the network. You deploy both physical and electronic security measures – to access the system you have to use a PC that’s connected to it, supply a user name and password and supply physical verification of your ‘indentity’, which could mean anything from a chip and pin card to biometrics. You store the bulk of the data locally, maybe not at GP surgery/Health Centre level, but nothing in scope larger than a PCT or other Healthcare Trust and you employ ‘redundancy’ – which has nothing to with sacking people, all that means that you don’t put all your eggs in one basket or your data on one site, you have a master data store and one or more backup systems that kick in if the master fails for any reason, and because you have more than one data storage system, you can also automatically cross-reference them in order to find and correct data errors.
Any IT professional reading that will tell you right away that, give or take the biometrics, everything described above is easy – all you need is common data standards and protocols so that the PC in the A&E department in Brighton talks the same ‘language’ as the data store in the patient’s home area, which could be anywhere in the UK, and Robert, as they say, is your mom’s brother.

Do you need a national database is such a system? Only in a very limited sense, as a master index to enable you to locate the information you need, but for the sake of speeding up the retrieval of information in emergencies, you’ll get some benefits from tacking on a summary record of key information on to the national index, which give you your NHS spine.

What matters most in all this is not where your data lives, physically – this website you’re reading now is physically located in the US, but unless you went to soem trouble to trace its location, you wouldn’t know that unless I told you – which I just did.

What matters is how your information in controlled and managed, and more importantly by whom – who, if you like, is the custodian of your information.

And that can remain as it always has been, your GP, who decides what information should be recorded on your file, how it should be classified – within the parameters of a recognised system used by all medical professional , etc.
And when it comes to your summary record, its your GP who can decide what information from your full records should be included on the summary on the basis of their knowledge, experience and expertise as a doctor – who else is better placed to decide what information from a patient’s file might be useful or relevant to out hypothetical A&E doctor than another doctor.

And if that were not enough, because you have system devised and designed by doctors for use (primarily) by doctors, you have a system that’s also governed by good old fashioned medical ethics.

‘Selling’ a system like that to the general public would be, for the most part, a doddle – you’ll always get a few people who don’t trust technology at all. Why? For two reasons.

First, although the way patient records are stored and accessed has changed mssively, the way those records are managed and controlled, hasn’t. The same people (doctors) that the public have trusted to look after their medical records since the founding of the NHS are still in charge and running the show.

Second, and more importantly, such a system has a clear purpose and purpose that is unmistakably in everyone’s interests. In an emergency, getting the right information to the right person at the right time could help to save your life – what possible argument could be more compelling than that.

But that’s not what the goverment wants. It’s not content with a system that does a clearly defined and beneficial job, what it wants as well is a system that will enalbe bureaucracts to set targets, finance directors to allocate budgets, policy wonks to write policies and protocols and auditors to monitor standards.
Now many people may not understand the technology, but they do understand that when you start tacking the bureacracy on to the system, that means a whole lot of people who aren’t doctors getting the grubby little managerialist paws on their personal, confidential, information – and if people that like are suddenly to be included in the information loop then just exactly who else might worm their way into the system in future? The Police? Insurance companies? Employers?

It’s not necessarily hackers you need to be concerned with, in fact the quickest way to circumvent that issue is to cast around, find the best available and give them a job testing and validating the security on your system – ‘it takes a thief to catch a thief’ as the saying goes – but all those other functionaries, policy wonks and bureaucrats who’ll suddenly that they have a reason to access your data as soon as its all safely tucked up somewhere that’s relactively easy to get to, as long as you’re inside the system.

And so, a project that should accrue near universal support from the general public, if only its kept simple and directed to delivering genuine and worthwhile benefit to patients, suddenly becomes controversial and starts spawning refusniks all over the place – and with that they disappears just that little bit more trust in the beneficial potential of information technology and its use for the public good.

One can see the same thing taking place in relation to Identity Cards and the National Identity Register.

A national identity card that simply verifies that you are who you say you are, but that leaves you in control of how its used and what, if any personal information, might be disclosed when you use it would still be a bit controversial, but only because as a nation we have a marked historical aversion to such things. But it would nowhere near as controversial as the leviathan, with its all consuming database system, that the government is trying to foist upon the British people.

Such a system is entirely possible – it would be based on a principle called ‘zero knowledge proof‘, and a system contructed on this basis would be simple, straightforward and reasonably cheap to deliver – give or take the use of biometrics (again).

But, again, that’s not what the government want – what they want is system that will fight crime, secure our borders, catch terrorists and deport illegal immigrants. The fact that we have all those things already; they’re called (respectively) ‘Police Officers’, ‘Passports’, ‘MI5’ and ‘Immigration Officers’ is immaterial, because somewhere along the line a technofetishist policy wonk has told the Maximum Tone, a rarity of a man who combined both abject technical incompetence with extreme technophillia, that all this is a good thing and will do wonders, solve the problems of the country and, probably make the tea as well – and Tony believes him.

Why? Not because Tony understands but because ‘modern’ is Tony’s personal crack cocaine and someone’s told him all this is modern.

Information Technology can be, and should be, a force for social good, just so long as you remember always who’s the master (people) and who’s the servant (technology) but it can also be a mechanism of control, an overlord and a tool of the autoritarian state. Much the same as governments then – and it should, therefore, be no surprise to find the Maximum Tone slowly, and systematically, destroying public confidence in both and killing his own golden goose in the process.

Meanwhile, if you head down into the deepest recesses of Whitehall and look very carefully, you find the techies who’ve been filling the Maximum Tone’s head with all thise strage ideas, scurrying around like and tittering to the themselves a la Beavis and Butthead as they chant their favorite mantra.

“I bet we’ll get a nice fat pipe out of this project”

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