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January 26, 2024 - 1:00pm
Tony Blair is back in the news, once again calling for sweeping reforms to Britain’s public services. This time, the former prime minister — in a joint report with his one-time rival William Hague — is calling for a revolution in how we keep our medical records or, as he puts it in his article in the Times yesterday, a “new approach to using healthcare data to support breakthroughs in medicine”.
The essential argument is seductively simple. Britain is good at biotechnology and we have a vast source of information — the NHS — if only we could prise open its vast treasure chest of data. Coupled with developments in technology like AI, Britain could turbocharge both new medical breakthroughs and economic growth — a win-win for everyone.
In their joint report, published by the Tony Blair Institute, the former party leaders call on the NHS to set up a company to sell access to anonymised records. Such a scheme could bring “massive benefits to research, public health and patient treatment,” they argue. Patients should also be given access to their own medical records through a cloud-based “personal health account”.
All of this might be wise, sensible, ingenious or wrong depending on your view. As ever with Blair, the idea is carried along on a current of liberal prophecy: the future is coming, and we must get with it or be left behind. Once upon a time, the future was Europe; now it is tech.
The first thing to say about this — and it may be uncomfortable for some — is that Blair might well be right. Anyone who uses the NHS knows it is in a desperate state and needs to find ways to get more money into the system. At the same time, though, anyone who lives in Britain knows the country itself is in a pretty desperate state and needs to find new ways to grow the economy. This might be one answer.
But the second thing which must be said is that Blair cannot be seen as a neutral voice on this question. He is the owner and executive chairman of the Tony Blair Institute for Global Change, whose principal donor is the world’s fourth-richest man, Larry Ellison. Now, Ellison is the owner of Oracle, the giant Silicon Valley firm which is trying to become the world’s most important online medical data company using its cloud technology.
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SubscribeEt tu Hagus?
Whoever buys the data also wants to monopolise its use to monetise it. And unless its done really carefully , inadequate anonymisation is real risk ( eg how many people are there of your age and sex, living in your postcode).Im sure insurance companies would like to get access to as much of an individuals’ health data as they can. However much of the data is already available and can be interrogated – have a look at opensafely.org and the steps they take to preserve anonymity.
If they can’t ‘monopolise and monetise’ it then how will they pay for the development of new products and procedures?
This is where people have to let go of their insecurities and embrace the use of data in this way.
Ultimately everyone wins.
In any case it would be an effective way for insurance companies to calculate premiums especially if they were privy to information such as whether clients smoke, do drugs, are overweight, walk enough etc.
They get that information anyway, if a policy holder doesn’t supply it accurately then forget about making a claim.
I think Blair is displaying the same naivety as when he wasted £100 million on NHS computerisation during his time in office. Most of this fabulous ‘data’ hoard still consists of scribbled and largely illegible paper notes.
and is of dubious reliability
It was a lot more than £100m. I think it was more like £10bn, and it failed completely.
Dangerously naive.
The difficulty is where the data starts providing information to insurance companies about things that individuals cannot control. We’re not yet at the point where people’s genetic profiles would be part of this data, but we’re certainly at the point where, say, a series of blood tests made over time for normal reasons might contain enough information for a machine-learning algorithm to determine that individual’s chance of having a certain gene that is a factor in a certain disease. That alone is enough for an insurance company to change the risk profile for that individual, at which point we’re all very much reliant on the supposed anonymisation process being 100% bulletproof.
Would you take that bet?
The quickest and easiest way to give the NHS ‘more money’ is to cut out waste’. If you go down to your local general hospital and rummage around in the stores/cupboards in most departments you will find much (up to 20%) of their stock is out of date and some dangerously so.
Waste isn’t just in out of date stock, it’s in the massively inflated prices they pay for everything from drugs to new flooring or a bit of re wiring. Scams are being run on just about every level.
But the records would be “anonymized.” Surely you trust Blair, the NHS, and assorted other bureaucrats and politicos to uphold the public trust, right? Right?
The main problem is that research on treatments that are effective but not immediately profitable could be locked out from accessing the data.
If the data is only available to big pharma then high cost treatments of dubious effectiveness will swamp the NHS removing all potential extra income.
Wouldn’t trust that snake with my medical records!
Can we really trust Tony Blair with anything?
Ps William Hague cant be trusted either. When he was a student he used to drink 12-15 pints a night. Honest
One’s instinctive reaction to the suggestion is cynicism, however, the big winner here is humanity. People often bang on about ‘big pharma’, but we do of course need big pharma and the products and breakthroughs that they make.
Utilising this data in an appropriate way is a complete no brainer and will lead to all manner of huge medicinal benefits.
Arguably we don’t need ‘big pharma’ because for centuries it wasn’t available yet the population still grew. The downside is that some people would suffer more and die sooner – something we used to accept. But is ‘health at any price’ worth the cost?
We need a grown up debate about how much we spend on health (and sharing health data). Something I expect politicians instinctively shy away from.
Were these the centuries when the average person died at around 40 years old?
When your loved ones are dying for previously incurable diseases I have no doubt you will need big pharma then.
I wouldn’t trust Anthony Blair Esq to look out for my dog, never mind with my or my family’s medical data. He is the worst kind of leech…
Blair won’t have any of the data ffs.
Of course not. But he will syphon off his cut of the money. And we’ll face the usual regulatory and control failures that come with his fabled “public-private partnerships”. Remember what a huge fan of private equity (an industry based on state subsidies for debt interest and state-induced near zero interest rates – both policies that Blair enthusiastically supported) that the charlatan Blair was.
Large improvements in health in the past were mainly due to the discovery of the importance of sanitation (clean water, viable sewage systems etc) rather than Pharma products, with the exception of (now overused) antibiotics.
The growth and dominance of BigPharma in our time is the power it uses over many other aspects of our lives due to its funding practices, such as with the media and politicians to further its own interests. In the USA, 75% of all TV advertising is monopolised by Pharma.
What has not been tried by governments (obviously due to the power of Pharma) is a policy of enlightening citizens generally about the foundations of good health. Whilst some have worked this out for themselves, an astonishing number remain in ignorance.
NHS please note:- In the US, citizens not only have access to their medical records online but are provided with the results of any tests simultaneously with their doctors and don’t have to wait for their GPs to reveal them. Usually this is within a couple of days, not weeks or months as in the UK.
Thanks. I wasn’t aware of the Us situation. Of course, our medical records should be our property. Just as our DNA should.
Big Pharma no longer believes in the future of big pharma.
I worked on a software project that did something specialized in the pharma production line and can tell you the industry is internally reshaping itself for a niche/boutique pharma future.
The big hitter universal drugs that funded their fortunes are fading. If the Big Pharma companies of today are going to survive it will be as umbrella orgs for a fragmented landscape of small independent research teams creating niche drugs shaped to the DNA of patients or the organisms that infect them.
If the NHS were a competent institution it would already be mining this data itself, and collecting a lot more.
The NHS are a user of products not a developer.
If my clients saw themselves that way they’d have all gone bust years ago. Fortunately most of them recognise that their data is the heart of their business. Meanwhile my health info is maintained as a largely illegible collection of scribbled notes on paper.
Your health info is highly codified in digital form using an international medical coding standard. There are a handful of commercial companies that provide the main patient record computer systems to all NHS GPs. These rival systems are interconnected.
Your perception of NHS medical records is 25 years out of date for primary care.
It really isn’t, you know. Or wasn’t as of my last hospital visit in October. Perhaps the system has been magically transformed since then?
Sez who?
They have the resources to do both.
I think you’ll also find that private companies like to own and mine their own data and regard it as vital proprietary information. They regard this as an opportunity, not a threat.
The fact that the NHS cannot or will not step up to the plate and do this work – which is part of the “day job” for them – the “day job” does evolve over time – is yet another sign that it’s broken.
The NHS has neither the resources or inhouse entrepreneurial software development expertise to progress where you expect it to go.
The NHS knows this which is why is has created an integration backbone system previously known as N3. The innovation will occur when 3rd party systems plug into N3.
I didn’t say I expected this.
But it damn well should do this. Rather than settle for being third rate (if that) and hoping outsourcing will solve all their problems.
It’s the largest single employer in this country. And supposedly the third largest in the entire world.
And you tell me it’s not capable of doing something that some smart university graduates could take on ? This stuff isn’t rocket science.
How is it that the largest outfit in this country has just about the worst IT record ? Is there perhaps some correlation ? And was the malign hand of Tony Blair involved ? (Yes it was, he’s already thrown multi-billions at NHS IT and made it worse).
All the NHS needs to do is recruit a crack team of young UK software engineers and put them to work. Outside the stifling NHS/civil service management structures. And paid proper market rates for the job. That would be far cheaper and better than outsourcing.
We all know how the government/quasi government IT outsourcing movie ends …
The NHS tried to pursue a big-bang comprehensive IT project back in the 1990s, this was the famous £15 billion failure that you might be thinking of. That was £15 billion in old money. Call it 50 today.
I am not sure what the “something” is but the headline article hints at AI i.e. something like the Deepmind/Moorfields diagnostic success from 10 years ago.
McDonalds, like the NHS, is a massive corporation but would they consider creating a crack AI software team? Of course not. Employing 1/2 million nurses or burger flippers gives no indication of cultural competence that would host a new software team and lead the world in medical software diagnosis.
Most large organizations suffer from bad IT. If a new team of bright young things from University was the solution to a global problem then capitalism would have discovered this solution.
Software development is harder than “rocket science”. The gravitational science to land a rover on Mars is simple, it takes software to confuse meters for feet and then crash the rover,.
Software development is not harder than rocket science. Second and third rate people and organisations just make it look that way. I’ve worked in software for thirty years. The best people can be over 10x more productive than the average. And the worst simply destroy value. It’s not like factory work where the gap is much smaller and everyone’s contributing something useful.
You need the right people and managers – and that almost always means managers with real technical backgrounds and not generalists who think they understand and don’t.
Teams of bright young things do work. They’re usually called start-ups. And do the innovative work large companies have allowed themselves to become too lazy and/or too stupid to do.
But being lazy/stupid is a choice and not inevitable.
I suggest that NHS IT is both lazy and stupid. And that lazy and stupid organisations are as incapable of managing outsourced work as they are at doing the work themselves.
The only solution here is to re-skill NHS IT. And that means busting the restrictive NHS employment rules and practices.
They say a nation gets the newspapers it deserves.
After 40 years in software development I would say “An Organization gets the software development team it deserves”.
Who in their right mind could ever trust Tony Blair?
Tony and his deal with Larry Ellison (Oracle) stinks. This is about money … and Blair’s good at lining his pockets. The Blairs and the Clintons have a great deal in common including islands and foundations.
This article can be reduced to a single word: “NO”.
There’s no need for the NHS to hand over any data. Companies can pay to have the NHS run queries on their data while the NHS retains complete control.
AI training cannot be done via traditional database queries.
Consider the excellent advances made when Google’s Deepmind teamed up with the London Moorfield eye hospital. The Deepmind AI training system needed 10,000s of eye retina images with matching eye disease diagnoses made by human experts.
“Anyone who uses the NHS knows it is in a desperate state and needs to find ways to get more money into the system.”
It doesn’t. It needs complete reorganisation so that it uses the eye-watering sums it gets in the most efficient way.
The answer to the question in the headline is a resounding NO. Blair can’t be trusted with anything at all.
I’d extend that “no” to pretty much anyone else listed in Jeffrey Epstein’s contacts book.
Man who destroyed country returns to scene of crime.
Blair: a man who did more damage to the UK than Hitler and the black death combined? No. Can’t be trusted. Look at his record on devolution (disaster), NHS reform (disaster), education (ongoing disasters), investing in infrastructure like power stations reservoirs etc (nil), his record on producing reams of crap legislation like the hunting ban and his record on encouraging mass migration. The Iraq war was the icing on the poop. he’s a walking weapons grade disaster area.
What the NHS needs is to be moved to a social insurance based system like Germany the Netherlands France or whatever, with poeple paying what they can if they can to upgrade, and then a safety net for those who can’t pay.
Hospitals are not best run by idiot civil servants. Or doctors.
If Tony Bliar’s in, I’m out.
I read a something interesting years ago about supposedly anonymised data: by cross-referencing different datasets, including the electoral roll, phone directories etc, it was possible to identify as much as 96% of the people on an anonymised list.
So clearly, the first thing I’d ask is for is the view of a data scientist on whether it’s actually possible to rely on any anonymisation here. The next thing I’d ask is how safe is the data in its present state anyway: the NHS – meaning the byzantine collection of institutions, trusts, hospitals, GP practices, consultants etc – already has patient data online and to judge by the quality of some of the websites I’ve seen, not designed particularly well.
And even in the event that a particular website has been secured as much as possible but uses a cloud provider like AWS, Azure, or Google Cloud Platform, the data is already in the cloud and we’re already relying upon the competence and ethical principles of American tech giants not to abuse the privilege.
I suppose the big unknown is what effect might machine learning/AI have once it can access a unified dataset of the UK’s health records. Would it lead to dystopian effects, such as insurance companies finding new risk profiles for certain groups and turning them into uninsurable second-class citizens? Or might it take the form we’re already familiar with on social media where certain people and certain views are shadow-banned: they’re still there, but demoted in profile so that they have no influence: could something similar happen so that certain people inexplicably can’t get credit cards, bank accounts, insurance policies and even jobs?
There is little hope of protecting people from these things through legal rights, in my view: the effect of market information always filters through, in some form, and as for the idea that the inevitably-promised “safeguards” would work, well in my view the moment a politician stands up and makes a speech about promising safeguards, you know already that it’s not actually going to be safe.