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back to article Here we go again: New NHS patient database plan sets off alarm bells

A paperless NHS that stores patient records in the cloud will be floated by Health Secretary Jeremy Hunt today. His plan to get medical files into a giant database by 2018 is already stoking fears given the public sector's poor record of protecting sensitive information. Hunt will claim in a speech to right-wing think tank …

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ACx

Trying to be trendy and "in" is fine, if not sad, when pretending to own onesies, but this cloud lark is plain dangerous. Fine, stick non critical stuff in a cloud like your stupid holiday snaps, but NOT my damn medical records. Once your data is in a cloud you have lost all reasonable control over it. Worse still, of some muppet allows some thing American to touch it, suddenly the US gov thinks its entitled to our medical records. Great. If this happens, I'll think twice about what I say to doctors, hell, I'll think twice about even visiting one. And this is with out the spectre of connection problems at critical time. Imagine the cloud being inaccessible during an emergency?

Why the hell is every one falling for this kings new clothes? Christ, some twat will "invent" a terminal server next.

Oh what's the point? Facebook and twitter probably have more than enough medical information freely given by their sheep idiot users to screw over the average punter.

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Devil

Yes but how is the government supposed to sell your medical information to private health insurance companies if it's behind protected firewalls and the data protection act?! ;)

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Facepalm

More stupidity

Again we see a senior MP spouting a variation of what has gone before. Again we see that it's the bureaucrats that run Whitehall and not the MPs.

We don't need any new massive IT systems, we need to sweep away huge swathes of senior civil servants and kill these projects once and for all.

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Alert

His records?

Are his medical records going to be on the system with just the same level of protection that we plebs get?

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Facepalm

start small

Make a local application using a local database which is the same for all hospitals, doctors etc, once everyone knows the system and is integrated with it, make the application upload to and download from a central database, reconciling any differences the central repository holds per patient with what they have

but no, they'll start off with the cloud and the database etc, then after months of work they'll say "now... what kinda things do hospitals log, and what interface would they like" etc. and then they'll have to change what they've already finished and adapt user behaviour to work with the cloud stuff rather than the other way about

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Here is what happens when you try to opt out......

You are denied access to a GP. This patients case has been written by Prof Trish Greenhalgh this month in the British Journal of General Practice. http://www.ingentaconnect.com/content/rcgp/bjgp/2013/00000063/00000606/art00022

Bucks PCT have not found a way for this patient to access GP service. The patient has been without a GP since the end of July 2012.

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FAIL

Re: Here is what happens when you try to opt out......

She has not been "denied access to a GP". She won't register with a GP unless that GP will opt her out of proactive health mailings, and no GP is able to do that. That may not be a good situation, but her GPlessness is entirely her own choice.

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Unhappy

Re: Here is what happens when you try to opt out......

"She has not been "denied access to a GP". She won't register with a GP unless that GP will opt her out of proactive health mailings, and no GP is able to do that. "

So the "opt-out" clause is meaningless in the NHS.

The process being with a lie.

Not a good way to build trust, is it?

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FAIL

Re: Here is what happens when you try to opt out......

Did you even read the article you linked to? It is about a patient's dislike of being targeting by QOF (Quality of Outcomes Framework) invitations...it has absolutley nothing to do with opting out of the Summary Care Record Service, or anything else.

"Bucks PCT have not found a way for this patient to access GP service. The patient has been without a GP since the end of July 2012"

Where is this mentioned in the article?

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Re: Here is what happens when you try to opt out......

I filled in opt-out forms some time ago. The receptionist seemed positively pleased to receive them, so I'm guessing that the local practice was not impressed with the last attempt. I don't remember receiving any proactive health mailings either.

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Anonymous Coward

*cough* data streaming *cough*

It's already quietly happening behind the scenes without the gov. having to get involved

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Meh

Who OWNS UK Patient Records

In Canada the doctor who actually writes the records owns the records BUT a patient has the right to demand unexpurgated copies (my doctor called me OBESE! in my records) of recors.

What is the status in the UK and CAN PATIENTS OPT OUT OF E-RECORDS?

These records hav a great financial worth when used by insurers - so what protection/encryption is being usd to keep Plod and Murdoch.

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M7S
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Stop

Ambulances

There are a few issues here.

Firstly if I am despatched to a patient as an emergency, rarely will I know the identity of the patient. Mostly we are given one out of male/female and another out of adult/child and a brief description from a member of the public about the injury which may well be incorrect. Many times we have gone to call given as an adult male in cardiac arrest to find the young girl sitting up and chatting but suffering from a sprained ankle, or perhaps vice versa. I exaggerate not. That is why every call is treated as an emergency until a reliable identifiable traceable person can give an assessment, which will usually be the first crew to arrive. We simply cannot rely on information from unqualified persons.

Secondly many of the patients are unknown to the callers (helpful members of the public) and therefore to us. Even if a person is found unwell in an address, no-one can be certain that they live there and are not their sister visiting for a weekend or are a burglar taken unwell "at work" (its happened), or are driving a car registered to someone else so until we start searching them for photo-id, with a recent reasonable photograph (and the hope that the scene is well lit, and there are no disfiguing facial injuries, changes of beard since the photo was taken etc) and then we can tie this back to some patient data (and lets leave identical twins out of it as well) then again what use are the records? I will do my best to identify the patient but if life saving interventions are required and there are no close friends or family nearby then I don't have time to do this before things start happening, by the time I found out anything relevant to emergency treatment from "the database" it might well be too late.

If we had the ability to "pull" the record in the street once we found out who the casualty was, rather than it being "pushed" to us from control when the call is despatched, then we'd also need a damn good data carrier. Large events tend to overload the cellular networks. I am sure people will suggest accolc, airwave and all sort of other things but to be frank when it all goes tits up then some of us still have a few handheld VHFs for resilience and "local control". One major service I know has retained 200 vehicle VHF sets. I've seen them (I wasn't supposed to). They're all in boxes at the back of a warehouse. Fantastic. I'd seriousl consider semaphore at events it the scouts still taught it. The idea of using my warning lights as some kind of Aldis lamp appeals but I realise here that I'm getting off topic.

As a few people have mentioned. it would be nice to assume that everyone with a known pre-existing medical condition wears some form of medic-alert bracelet. This simply does not happen, and there are quite a few situations where it is impractical to do so. You could say that this will be a form of Darwinian selection then, but in the same way as we don't refuse to treat the many many people who go to an all day music festival and "didn't think they'd need their inhalers" (for various respiratory conditions, which are often life threatening) we have to manage as best we can. This does make a reasonable argument for the proposal and I acknowledge the good intent.

Patient records can be wrong. A relative (and I appreciate this is a minor point but its the principle I am trying to illustrate) was incorrectly listed as a heavy smoker. She'd never smoked in her life and of this I am certain. A salive swab test (for life insurance) confirmed this insofar as such tests can. The GP accepted that the record was wrong but could not alter the record as he did not put that particular note on. The GP who had added this at a previous surgery where she had been registered had left that surgery and no-one else could remove that note. I pointed out the bit about Data Protection Act requiring information to be accurate and this cut no ice. An amendment could be put on but this was pages away from the summary which would be all we might have time to read. If the incorrect information had been for something more serious, well the consequences of treatment withheld or incorrectly give could be fatal.

There are many agencies involved in pre-hospital emergency care. Statutory ambulance services. Voluntary Aid Societies (Red Cross, St. John) who do 999 work for some statutory services or also cover events on their own, private services covering events or againg doing 999 work. BASICS Doctors. Local first responder schemes (some allow theirs to do considerably more than basic 1st aid, O2 and Defib). Would all of these have access? If so the papers will scream about the "untrained and unsupervised" people with access to your records. If not the papers will scream about the postcode lottery and the incomplete provision of services. If they do have access, will every first aider covering a small event (who will in effect supplement for the ambulance for some time until it arrives) have some sort of data terminal? You might say that first aiders don't need it but many are fully qualified ambulance personnnel, could they be held liable for a poorer standard of care given due to not having such information?

Who is going to pay for all these portable devices, the data contracts, the training, remote security management etc, and the replacements when the yoof of sarf lundun realise that some of the medics now go home from events in the evening with something more nickable and floggable than a couple of No. 4 Dressings. I'll protect my patients confidentiality but perhaps not at the point of a knife or looking down a tube with an inner diameter of 9mm or so.

It's a minefield of legal, technical and financial issues, however I think that the thing that will stop me worrying about it for some time is that for mobile users at least, you'll never get it to work properly anyway.

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Re: Ambulances

The thing is, this type of record isn't designed to help first responders. As you pointed out, you show up and try to figure out what's going on.

It is a lot more useful in other situations. Let's say my usual GP surgery is closed, I could just walk into any other, have an equivalent of France's "Carte Vitale" scanned, and the GP has immediate access to my records, including prescription history, so they can re-issue a prescription for example. No need for registration. There are "pharmacist precribers" as well, so if they have your records they could e.g. renew your prescription for insulin, without you wasting doctor's time for what is effectively an administrative function. After (limited) renewals, you would have to go see your doctor again, but that could be customized to the drug/patient, or over-ridden entirely.

Again following the French system, once I have my prescription I got to the pharmacy get my drugs. The pharmacist scans my card, and discounts/waives are applied automatically.

Also it prevents "double prescribing". A distant relative of mine had studied which symptoms to describe to get which drugs she wanted, so she had a GP prescribing her antidepressant, another sleeping pills, another heart drugs, etc., and picked it all up from different pharmacies so they wouldn't pick up on interactions. All for free (well, paid by French taxes anyway) because of special circumstances. She had to give it up when the Carte Vitale came into place. Had to go cold turkey, but did her good in the end.

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Meh

Re: Ambulances

"have an equivalent of France's "Carte Vitale" scanned, and the GP has immediate access to my records, including prescription history, so they can re-issue a prescription for example. "

Very commendable.

That is not what is being proposed.

It's too human scale for the DoH bureaucrats.

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Anonymous Coward

Re: Ambulances

"One major service I know has retained 200 vehicle VHF sets. I've seen them (I wasn't supposed to)." Well if you arent down south, that makes two then.

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@M7S re: Ambulances

Many thanks for your brilliant comment, which opened doors and shone searchlights on the subject for me (and many other ignorami no doubt). It's always reassuring to see how often a discussion like this brings out a real expert who knows the ropes from practical experience.

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Beta test

I suggest a 12 month beta test before the database goes live using all 650 MP's complete medical history as the test data, then we call all test the security of the system. If no data leaks we'll have an idea of the basic security of the system.

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Re: Beta test

I salute your suggestion +1

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Anonymous Coward

Re: Beta test

Running a test database with just 650 records might not be entirely sufficient. Perhaps it would need to be bolstered with additional records of council members and staff and police forces.

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Holmes

Re: Beta test

Simpler than that, all politicians families, financial backers, lobbyists, current mates, school mates and the entirety of Whitehall and their families.

Trust me, if they get it wrong, then they'll get it directly in the ear, which will result in them having a genuine, greater than 10 second attention span on the subject.

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Anonymous Coward

Slang

I think that 'Berkley Hunt' and/or 'Charlie Hunt' should now be superceeded by 'Jeremy Hunt'.

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Anonymous Coward

It already seems to happen quite effectively in Scotland.

When I took my son to the Sick Children's Hospital in Edinburgh, the consultants there had instant online access to all his scans from our local hospital, many miles away, and to all his GP practice records. Same with the people at NHS24.

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Anonymous Coward

Re: It already seems to happen quite effectively in Scotland.

Quite the opposite experience here.

Since last year I have made monthly visits to see a consultant.

One occasion I apparently didn't exist - ever. On another I did. On another I existed but they held no contact details for me.

I was then told that I would be in for an operation within 4 weeks by the consultant. After hearing nothing I phoned and the hospital told me they had no record of this.

Then another call a week later, and there I was back on the system, but now they did not have any contact numbers and no operation data.

Then, as if by magic, there I was, back on the system again, but they still had no clue that the consultant wanted me in for an operation within 4 weeks of my last appointment.

They also had no record that the consultant had requested an urgent pre-op biopsy.

I'm not so full of confidence.

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Anonymous Coward

Re: It already seems to happen quite effectively in Scotland.

AC15:51 - I'm with you - my own GP cocked up my records (not in Scotland I must admit).

I needed to be referred to a consultant, so when my GP practice gave me the referral documents I read them (like you do). Firstly the referral letter itself incorrectly outlined the history of the condition I needed investigating which wasn't a great start. Then it included some "highlights" from my records - apparently I was overdue for my over-75 check. At the time I was 37.

I don't have an issue with the idea that all GPs and hospitals share patient data as that only be a good thing in the long run. But I have no confidence that the information would be correct.

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Anonymous Coward

Give us your med recs!

I can see a whole raft of people who would love to get their hands on peoples medical records. Insurance companies being possibly the biggest. I can also see targeted adware companies salivating at the thought of it. "Get 20% off your next order of (insert related health product here)"

Where there is a physical connection to the internet or in the airwaves then there is a way in and thus a way for that info to 'leak' (someone in the ambulance services loses a device with access to the system etc). The cloud has not been proven secure yet and I don't trust anything the government approves with my personal information in it.

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Anonymous Coward

Haven't we failed at this just recently?

Haven't we tried this before?

The reason EMIS works for GP practise’s is that my local GP only stores names, contact information and medication previously prescribed. He showed me it once explaining with amazement how the system is able to select all drugs by each pharmaceutical company and create a printable prescription.

I wasn't so amazed since I knew they system was just selecting values from a database of each drug manufacturer. These GP practice systems are not as interoperable as being advertised. If you change doctors you have to go through a manual registration process again. All medication prescribed by the previous GP most likely gets printed out and follows you in a paper file.

The objective set by the National program therefore hasn’t really been met. Information cant be shared throughout the country or between GP'S or Pharmacies. My local GP cant electronically send my prescription to my local pharmacy. It has achieved one thing which is preventing doctors from suffering handwriting/pen fatigue.

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Re: Haven't we failed at this just recently?

Most importantly, it has prevented the wrong drug being given out by the pharmacist because of doctors' atrocious handwriting. Pharmacies have a similar system to check doses/potential interactions. But yeah, it is far from being an interoperable system.

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Not my experience

I can share information between all of the hospitals in the region and probably the UK electronically and with all of the GP;s in wales and probably the UK independent of their software, most use EMIS GV or web but some use other solutions and it works perfectly. We are currently in a trial for digital signatures on prescriptions but only one chemist chain are willing to purchase the hardware at present so the others need paper prescriptions. To be honest it isn't much hassle either as a doctor or patient so not that urgent. The doctors have been using digital record for years and they DO interoperate very well thanks, it is the hospitals that have been slow to catch up and the blame lies largely with consults who do not like their actions being traceable and prefer the power of their paper notes and prescription pads and therefore refuse to use any of the systems.

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Anonymous Coward

Just a thought!!

One question - how long will it be before some civil servant decides that the best way to connect the patient to their records in the cloud, prescription service etc. would be via a chipped card containing the relevant identification data that would have to be carried at all times (for the emergency services and in the patient's best interests of course!!).

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Its official patients are to be denied access to care

It is official Bucks PCT have responded to Prof Trisha Greenhalgh article in trhe British Journal of General of General Practice. The article concerns one of their patients and the patient sent me their response unless you agree to your data being used on these databases you are denied access to GP services. Its official in black and white. http://www.ingentaconnect.com/content/rcgp/bjgp/2013/00000063/00000606/art00022

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Anonymous Coward

Re: Its official patients are to be denied access to care

I've just read the linked article. It is stated that the patient (being fed up with proactive care), has "chosen not to have a GP at all".

It's not clear to me, however, that this is the same as your "denied access to GP services". Is it not possible to attend a GP with being registered there?

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Re: Its official patients are to be denied access to care

"unless you agree to your data being used on these databases you are denied access to GP services" - It does not say that at all, the article is about preventative care which is entirely separate and in most ways a very good thing.

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Gimp

*Where* is this "cloud?"

In the UK?

Ireland?

Mainland Europe

The United States.

Israel.

Because by EU data protection all of the have equivalent data protection.

Including the home of the PATRIOT ACT.

I smell the DoH data fetishists, hence the icon.

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@davidward @anonymouscoward

The response from Bucks PCT to the BJGP article was only received this afternoon so does not feature in the BJGP article.

The issue is they collect all this data from your medical records for eg for preventative care for this database that is featured in the above Register article. If you do not agree to your medical records being used for these GP contract purposes which are then sent to this database you are denied care.

The problem is in Bucks where this patient lives there is only one GP in the area so the patient cannot use another GP Surgery as an temporary/emergency patient as she lives outside the GP Practice boundaries of the other Practices which are 4/5 miles.

Prof Ross Anderson who blog also features in the above Register article is fully aware of Bucks PCT response he has seen the email. I have worked/campaigned with Ross for a number of years on medical confidentiality issues

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Anonymous Coward

Have they not shipped all our records out to India yet?

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Big Brother

Arrested for demanding a copy of her medical notes

"A 67-year-old retired scientist was escorted handcuffed from a doctor's surgery in Bedfordshire on Thursday for demanding a copy of her medical notes"

http://www.bbc.co.uk/news/uk-england-beds-bucks-herts-20817107

This is only the beginning

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Anonymous Coward

So the handling can be outsourced to India?

No thanks, you Hunt. It would also smooth the way to full piratisation to the benefit of the politicians who voted for the piratisation bill. Who wants Beardie looking after their medical records. He couldn't even get the trains to run on time.

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FAIL

Every time I hear about something like this I want these clauses to be written into the data protection act or something similar:

anyone found in breach of their duties e.g. lax security lets hackers in/leaves usb drive on train/sells details on to third party or passes them onto another department for same company personally faces an unlimited fine and serious jail time along with some senior people in the same company. The company can be fined too oh and the government department with oversight gets a kicking also.

Harsh I know but given the track record of data security both from government and private companies I don't see an alternative.

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It can be done and works

Here in New Zealand, we had a few earthquakes a while ago, and medical facilities got a bit run off their feet. What doctors needed was knowledge about the people they were treating, and none was available.

So, what we have now is eSCRV, electronic shared care record view, which allows suitably permissioned people to see some of ones doctors notes. Important stuff, like allergies, drugs prescribed, summary of known conditions, X-rays. The really important useful stuff.

It's up and running now, didn't cost the earth to implement, and leverages the existing electronic health communication standards. Uses off the shelf software.

It's just in canterbury at the moment, but it'll grow to country wide eventually.

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Meh

Re: It can be done and works

Sadly just because it is possible to do using off the shelf software doesn't mean that it will happen here. Instead it will go out to tender and be awarded to the large consultancy firms who will develop custom software to allow them to maximise their fees and future income stream from trivial changes.

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FAIL

Not again....

Oh no, another £14 billion down the pan...

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Trollface

You're all 'glass half empty' people.

Look at it this way. With all our records being in the ether, the sacks of garbage won't need to carry pen-drives with our data on them... thus, no longer do we need to worry about them losing our data on pen-drives on the train, or on laptops in mini-cabs... See, glass half full :)

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Big Brother

Track Record

If I could trust them to implement it properly, and could trust all future governments not to abuse the information, then I'd be 100% in favour of such a database.

Sometimes it's worth paying a bit more and suffering a bit more inconvenience for a system that isn't quite so joined up.

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