Senior health tech pros warn NHS England: Be transparent with mass database trawl or face public backlash

Senior healthcare techies have warned England's National Health Service (NHS) that it will need to be open with industry professionals and the wider general public as it forges ahead with the collation and potential sale of millions of Brits' medical records via a mega database. As exclusively revealed by The Register on 12 …

[Anonymous Coward]

More fundamental than that.

We're seeing "electronic patient records" but no custodians of them. Changes to the record over time, format of files and more importantly accuracy are eroded due to how the record is split across dozens of clinical systems with different "data protection reports" possible from each, differing audit logs etc. It use to be the case that if a clinician wanted to see a record they had to physically get hold of it. Now they can see parts of it but not the whole thing at any one point, the idea is they get to see only the parts they need to, so ensuring that data is correctly held on appropriate systems is more important than ever. You don't want a situation where mental health professionals can't see ALL of the medical you are currently on because System X hasn't passed that data onto System Y which is part of the portal the mental health professional happens to see.

I'm just not convinced we're in a place for electronic patient records yet, my own NHS has over 100 clinical systems..

[Pete4000uk]

Happy to share

I'm happy to give my health data today so others can have a healthier tomorrow.

BUT it must be done transparently and honestly.

[Anonymous Coward]

Just count them beans!

The NHS data on 65 million Brits was said at the meeting to be worth £9.6bn a year through "operational savings, improved patient outcomes and economic benefits," based on research by EY.

One of the problems with the NHS is that there are too many people employed to tot up the “savings”.

[Anonymous Coward]

And who wasnt in the room ....

Representatives from the ICO, Representatives of the people whos data it is ....

[Anonymous Coward]

"to make the UK a world beater in"

using people as guinea pigs to increase the rich ones life expectancy... while sorting people into health groups and using them accordingly.

[alain williams]

"records that are said to be anonymised as necessary"

and then promptly de-anonymised. This has happened in the past and will happen again.

The only way of, maybe, avoiding this is: deep audits to see what happens with the data. When de-anonymisation is found huge fines must be paid, not by the organisation but by: the individual who did it, their line manager and the CEO.

[Doctor Syntax]

"improvement chairwoman Baroness Dido Harding,"

There's a strange combination of words if there ever was one.

[CrazyOldCatMan]

"improvement chairwoman Baroness Dido Harding,"

There's a strange combination of words if there ever was one.

Depends what the "improving" refers to. Her corporate masters' bank accounts? The amount of data all the shadowy 3rd-party companies behind the headline companies get?

How many times the system(s) involved get hacked/malwared/stolen?

[Mephistro]

"The stated objective is to make the UK a world beater in finding cures..."

Fixed!

[Chris G]

Patient's rights? What are they then?

"It is vital that the public realise who has access to their data and the purposes for its use."

It is vital that the public HAVE A SAY in who has access to their data and the purposes for it's use.

There you go FIFY, I'm sure that's what he meant to say.

[Duncan Macdonald]

How anonymous will it be ?

My guess is that the data will be so easily identifiable that most men over 50 will be getting adverts for Viagra and hair dye!!!

If the data is processed on computers owned by US corporations (eg AWS, Google etc) then the US government can get full access to the data irrespective of any provisions in any contract.

If (unlikely!!) the NHS actually believes in privacy and confidentiality then at a minimum the following should apply

1) All data is stored on NHS owned computers held in the UK

2) Only NHS staff have direct access to the data

3) External parties (researchers, drug companies) may make search requests - these requests are checked by NHS staff before submission and the results are checked before being returned to ensure that personal data is not leaked

4) Unauthorized disclosure of the data should be treated as an offense under the Official Secrets Act

[CrazyOldCatMan]

Re: How anonymous will it be ?

men over 50 will be getting adverts for Viagra and hair dye

Adverts? Whats dem? Oh yes - those things you fast-forward through when you have to watch a recording from a channel that has them..

Another request - no GDPR exemptions based on the old chums/brown envelope network..

[upnorth]

Too much money to be made

This data set is way to valuable for the confidentiality interests of the public to have any impact. Sure, they will say soothing things but the reality is that your personal mediacal data will be out there and identifiable for those willing to pay for it. Just point me at the process to opt out of hving my data shared, and I will sign up as I did with care data, and recommend all my family do the same.

[N2]

Trust

I wouldn't trust this lot with anything.

[Anonymous Coward]

They should definitely give it all away for free to amazon or google or facebook, assign them ownership of any patents, inventions, or discoveries made with our data, then pay them to license it back.

Oh. Wait. No. They should definitely not do that. Obviously. Any fucking idiot acting in the national interest would definitely not do that. But they will, because you geniuses voted in a set of sociopaths who've recognised fellow sociopaths across the pond as useful stabilisers of each other's regimes and helpful in dissipating their vision of a corrupt corporate-welfare blind patriotism-meme-brainwashed white nationalist individualist consumerist kleptocratic utopia where they are perpetual rulers.

It's going to be awful. I'm going to escape to somewhere nice like New Zealand.

[Tom Paine]

Very interesting

Excellent story. Something tells me we'll be hearing more about this in the years ahead...

[Dave 15]

Backlash? Why should they care?

Honestly, there is sod all we can actually do short of a major revolt and burning Whitehall down. People vote the same parties regardless because they are stupid and tribal. How long before someone shows how the anonymous data can be traced back to you as an individual? We have allowed a monster to grow for 50 years and it is eating us for lunch

[sbt]

The de-identification will be a fig-leaf ...

... that will blow off in the slightest breeze from the winds of ML change.

The amount of de-identification needed for such a comprehensive collection undermines the research value.

But if the motivation for building the collated dataset is not first and foremost better continuity of care for patients but the assembly of a saleable product, you can bet the de-identification will be minimal and the veil readily pierced with a little effort, particularly for those with chronic or rare conditions with particular patterns of contact with medical practitioners.

Happy New Year!

[Fruit and Nutcase]

The NHS data on 65 million Brits was said at the meeting to be worth £9.6bn a year through "operational savings, improved patient outcomes and economic benefits," based on research by EY.

Excuse me whilst I cross check those figures by reading some tea leaves and multiplying by my inside leg measurement

[Frederic Bloggs]

GDPR? Informed Consent?

Have they heard of it? Or, when there is (considerably more than they will ask for) money to be made: "oh well, it'll be OK. No-one really cares anyway".

I wonder who gets to keep the fine?

[Al fazed]

and provide better healthcare overall

Well let's have a look at data integrity.

It's something your average GP doesn't have much control over.

A little while ago, GP's and other Health Care Professionals were encouraged to run a "worthiness" triage on their client base. This was supposed to root out malingerers and other service abusers, just like the DWP Welfare System changes from DLA to PIP, "Sick Notes" being replaced with "Fit Notes".

So in this biased and ever changing value system, which seems to be fed primarily by the personal opinions of people who have already filtered out things like, scroungers, you know .... junkies, the unemployed, people with depression and anxiety and existing complimentary treatments, fringey stuff like Mc Timoney Chiropractics, Aromatherapy, THC/CBD and Psylocybin, etc --- Yeah we are defintely going to be in a much better position for making informed decisions in the future about UK population's health needs.

Oh Yeah, pull the other one. If this is supposedly the point of the exercise, even I know that this baby is destined to crash and burn before it leaves the ground, but only after the corporate mothersuckers have all the relevant data they need for making better drugs, life insurance policies, prisons........

[OzBob]

OK here's an analytical observation that could be considered "low-hanging fruit"

if you are fat or drunk, you will cost the NHS more than if you are not. So tax those pricks that are and save the rest of us some money.

[Anonymous Coward]

Re: OK here's an analytical observation that could be considered "low-hanging fruit"

if you are fat or drunk, you will cost the NHS more than if you are not. So tax those pricks that are and save the rest of us some money.

It may surprise you to learn that heavy drinkers and smokers do pay more in tax. And good luck with penalising the 60% of the UK population who are overweight. Can't see why you won't get a thumping majority in support of that policy.

But more pertinently, it is a naive oversimplification to imagine that fat people, or heavy drinkers, can just change their lifestyle. Money, social pressure, addictions and habit are all very powerful, usually insurmountable, drivers in people's behaviour. Do you really think people put up with the stigma of obesity, the increased anxiety, poor body image, and impaired quality of life because they just can't be bothered to lose weight?

[CrazyOldCatMan]

Re: OK here's an analytical observation that could be considered "low-hanging fruit"

UK population who are overweight

Of which I'm definately not one - nor was I before I lost the 15kg last year. However, I do have complex health needs due to unfortunate genetics[1] - none of which are due to lifestyle.

[1] Sadly, you can't chose your parents. You can (however) decide to never have offspring and (fortunately) marry someone who doesn't want kids either..

[BigSLitleP]

Re: OK here's an analytical observation that could be considered "low-hanging fruit"

By definition, if you are drinking a lot of booze you are buying a lot of booze. That is one of the highest taxed products in the UK. That means you are paying higher taxes than those of us that do not.

Logic.

[Wolfclaw]

No Thanks

Just say no, we know it will be abused and leak !

[Anonymous Coward]

If they included any data from opted out clients

Then when do the guilty go to prison and when are the illicit funds recovered?

[Trollslayer]

Call me cynical

But who will get a nice sinecure somewhere after all this?

[Mephistro]

Re: Call me cynical

"Call me cynical realistic"

Fixed!

[Anonymous Coward]

"There are clear benefits to be had from sharing clinical data between organisations both for direct care and for understanding population health. However, we have learned from similar initiatives of the past that it's very important to be open and transparent about it with the public," he said.

In other words - they were caught out. I'm sure lessons will be learned etc..

So - where's my opt out form?

[BebopWeBop]

Leaving aside the imagined financial benefits for the NHS (I am sure there could be some, but the figure is just another guestimate aimed at promoting the project and the real beneficiaries - by orders of magnitude will be assorted companies) the one thing you can guarantee is that NHS management will ignore their experts, and Westminster will support them in that disregard - after all their record, let alone their understanding of privacy and anonymity is hardly sparkling.

[Hans 1]

NHS, all your data belong to US

NHS is on its last legs anyway since buffoon was elected. All our data belong to USA

[Tom 7]

"anonymised as necessary"

I would laugh at that but I doubt I can afford the insurance to cover any damage that might cause now.

[jason 7]

Backlash?

Who cares about that now? You just double down and pretend it never happened.

All blows over within a week. By that time you have the next backlash, rinse and repeat.

Like cock-ups and scandals matter anymore. It's a new era.

[A.P. Veening]

Looks to me like alternative funding for NHS, which would allow the government to reduce the funding, thus booking a saving while keeping it underfunded.

[CrazyOldCatMan]

while keeping it underfunded

Unfortunately, the problem isn't just the underfunding of the NHS (and the chronic lack of staff due to working conditions and the loss of a lot of the staff of EU origin), it's also the chronic lack of funding of the secondary care systems that are provided by local councils - all of whom have had their budgets slashed massively because of Tory centralisation (which means the local governments get deprived of funds while still having the same responsibilities and costs).

So all the local nursing homes are no longer run by the councils but by for-profit organisations paid for by the council money - which wastes money since the for-profit organisation want to make money and so charge more than the old council did. Even so, they go out of business regularly, dumping old and vulnerable people out. Those people then end up in hospital (along with people who, in the old days, would have gone into a nursing home post-treatment but can't any more because the council can't afford it) taking up beds that are needed for incoming patients - who end up on trolleys in hospitals waiting for a bed.

The problem isn't always the funding for primary care - it's the funding for *all* the bits of the care system, including secondary and tertiary care. So any politician that talks about 'record levels of funding for healthcare' is either lying outright or (at best) disingenuous. A pox on the lot of them.

[Barrie Shepherd]

"The information, including medical and genetic records that are said to be anonymised as necessary...."

Yeah right!

No names possibly but I bet postcodes will end up in the list, justified by the need for identifying "geographic" anomalies. Anyway if the NY Honours list is anything to go by names and addresses will be spread all over the Interwebs anyway.

Only GP's and hospitals need my data as part of my treatment all the other hangers on only want the data to make money out of it and they should not have it - anonymised or not - because it won't be.

[Anonymous Coward]

As long as...

It's easy to opt out and opt out is the default.

I also want to be able to access the medical records of every Tory and celebrity as a reciprocal benefit...I feel a burning need for a public personality deadpool gambling site.

We could also build an algorithm that calculates how long each MP has left to live and rate them to prevent people voting in a potential stiff.

This must be their vision right?

"Don't vote for X he has a 98% chance of arse cancer within the next 2 years, vote for Y, 99% chance of living another 10 years".

I reckon Ticketmaster could use the data to inform ticket purchasers of entertainers health status to pre-empt a last minute cancellation.

"It has come to our attention that Jay-Z has an 80% chance of a stroke within the next 30 days, click here for a refund".

[Will Godfrey]

It won't work

They won't take the slightest notice, as they will have already convinced themselves that it's a fantastic idea, and will bring in lots of money. It will, of course fail abysmally, and leak sensitive data like the proverbial cullender.

A few people of the right class, will however make a lot of money.

[Martin Gregorie]

My answer is the same as it was to care.data. NO. NO. NO.

Nobody outside the NHS gets their hands on my medical history without my explicit consent to each and every access which must state explicitly who wants the access, what they want it for, for how long and how access will be terminated and the data deleted. GDPR penalties must be levied on companies and individuals using NHS data for any failure to comply with these conditions.

But, I have a great idea for a trial program. Run a pilot using the medical records of all members of Parliament and their families, all members of the House of Lords with their families and everybody in the NHS from Senior Consultant upwards with THEIR families. If there isn't a 100% buy-in from this cohort, then any idea of NHS data sharing should be completely and irrevocably forbidden.

[steviebuk]

Was it here or the private eye

Where I read the NHS will not make any money from this. They have to pay for this and then pay to get the data back when these companies sell it back to them.

[IceC0ld]

not too sure where I stand here :o(

the NHS is possibly the ONE thing that we, in the UK can be truly proud of, in that is is free at point of contact for ALL citizens of the UK.

but the world, apparently, is changing, and today, ALL data is seen as up for grabs, so IF they can GUARANTEE that the data will be anonymous and will be of REAL use, and that the $10 BILLION they speak of actually goes to the HS, then maybe .............

BUT

NHS is 'only' 65 million souls, FB has almost 2 BILLION, and they seem to make a few bob out of their data mining, so my real question would have to be WHY o they 'need' the paltry 65 million we can offer at all when there are SO many more places with so many more souls to pick from ?

[Yet Another Anonymous coward]

Re: not too sure where I stand here :o(

FB doesn't have detailed info about you to decide if a bank should give you a mortgage based on that dodgy heart valve or even your grandparents history of dodgy hearts

[Aussie Doc]

Re: not too sure where I stand here :o(

Have you seen some of the info FB users actually share?

"'ere's me in 'ospital after me 'emmoroid op 'avin' lunch. Lunch looks deplorable. Click like and share if you agree."

Doctor's coat's over there --->

[Anonymous Coward]

Anon postcode?

The original plan was to just use postcodes instead of names. Granularity maintains the value of the info for researchers and other interested parties.

So.. sell it to a life insurance or health insurance company anonymised.

An insurer "thwarted" would simply raise the premium for the fifteen postcoded households instead of the one containing the bloody expensive risk (precondition). As long as none of your neighbours have something nasty or hereditary you'll be fine.

If we have the gender and age of of the risky person in your anon postcode of 15 houses.... Nice simple couple of filters. So you just hope your next door neighbour is a healthy person.

Either I don't trust insurers or I need a tinfoil hat.

[Richard Crossley]

Opt in only

That's the first requirement and even then do you believe them?

If you later demand to opt out, what removes your data and what guarantees do you have it was removed.

Tin foil hat? Maybe, but the data is far too tempting for ne'er-do-wells to ignore.

[AnoniMouse]

What? No safeguards?

"The information, including medical and genetic records that are said to be anonymised as necessary, will be accessed by NHS practitioners, along with researchers and possibly private companies. "

True anonymisation of such data is impossible, especially when it includes "genetic records" (which reliably identify e.g. criminals beyond reasonable doubt").

Private companies, especially the insurance and finance industries, must be rubbing their hands with glee. They will

[Anonymous Coward]

Baroness Dido Harding?

That'll *really* increase confidence that our data is being handled safely.

[AnoniMouse]

Useful datasets CANNOT be truly anonymised

"The information, including medical and genetic records that are said to be anonymised as necessary, will be accessed by NHS practitioners, along with researchers and possibly private companies. "

Only one small, inconvenient difficulty: if the data contains any useful information then, in conjunction with other datasets, it can be de-anonymised.

No woder the health insurance and finance companies are drooling at the proepect of getting hold of OUR personal data! Which they will then be able to use in ways over which we have no control to reduce their risks and increase their profitability.

Whatever happened to the concept of risk-sharing (across a population)?

Without extensive safeguards, this ill-considered initiative will discriminste unfairly against those whose medical and genetic heritage is less fortunate than others'.

[NeilPost]

Dido Harding

Having Dido Harding- Ed CEO of Data Breached Talk-Talk elbow deep in this does not inspire public confidence from the get go.

What did she get a Baroness Peeragw for??? Being Very Sorry, as she did much of that at the time, but little else constructive. Talk-Talk was a sorry take of corporate ignorance.

[dvd]

Re: Dido Harding

Read her Wikipedia page. Her career is a tale of failing upward from one failed company to another.

[adam payne]

"The information, including medical and genetic records that are said to be anonymised as necessary, will be accessed by NHS practitioners, along with researchers and possibly private companies. "

Where's the opt out?

"We hope the lessons of Care.Data have been learned. I'm not sure what patient representation goes into current policy thinking. I suspect not enough," he added.

I would suspect none.

[codejunky]

Ha

The issue here is a really good idea of sharing this important data to improve healthcare vs the government being so cynically untrusted that we would check if they said the sky was blue.

Not an easy problem to solve I suspect.

[Kibble 2]

Basic Point

"senior heads at Microsoft, AWS, AstraZeneca and other businesses met behind closed doors with leaders of the NHS to thrash out ways to create a commercially valuable repository of 65 million patients’ data"

I suspect that there was NO discussion of how to allow individuals to opt out of the DB: just how to create one. And don't get me started on genetic DBs. Just creation of a searchable pool of info with de-anonymization capability is rather abhorrent.