Opponents of the plan to share medical records on a giant database are “peddling scaremongering myths”, medical research organisations say.
The warning by Patients4Data, an umbrella group for more than 70 bodies, comes after the launch of Care.data was delayed this week to the autumn.
Patients4Data said the opponents risked preventing patients benefiting from a revolution in modern medicine.
Frankly, I don’t care. I expect my patient records to be as confidential as the priest’s confessional. I do not want them shared and expect that wish to be respected. So I sure as hell object to a system that tries to sneak in under the radar and is intent upon selling my information to outside parties. The common good is simply another euphemism for communism. My records, my data, my decision. And that decision is that they remain private. However, even though I have opted out, it seems that this isn’t what you and I would understand by the term.
GP magazine Pulse reported on 7/2/14, “Patients who have opted out of the scheme will still have their records sent to the HSCIC stripped of identifiers” (see 4th paragraph from bottom of this article). This confirms something buried on page 9 of NHS England’s recently-published care.data Privacy Impact Assessment [PDF] (UPDATE 12/2/14: there appeares to be a problem with the official link to the PIA, so here is a copy), which states:
Where patients have objected to the flow of their personal confidential data from the general practice record, the HSCIC will receive clinical data without any identifiers attached (i.e. anonymised data).
i.e. the intention is to still to extract information from the medical records of people who had opted out, just not with their NHS number, postcode, date of birth and gender attached.
This is not what any reasonable person would understand by opt out – if you opt out,no information from your medical record should leave your GP practice. We are working hard to resolve this and will let you know as soon as we can what is going on.
So, we haven’t opted out at all – our information will still be stolen and flogged off to whoever the NHS decides. And these fake charities and other third sector parasites have the gall to accuse those of us who object of misleading people.
George Freeman, a Conservative MP and founder of Patients4Data, which represents charities and drug companies, said: “There are those who oppose not just the mechanism of data handling but the principle of patient empowerment and greater accountability.”
“We cannot let opponents peddling scaremongering myths stop patients benefiting from this quiet revolution of modern medicine. There are issues to be addressed. But data is a force for good, not a Big Brother-style conspiracy.”
See the above, you vile cunt. How dare you, how fucking dare you! Damned right I object to the principle – and I always will because it is deeply immoral and unethical. Take your fucking fake charities and drug organisations and stuff them where the sun don’t shine. You are supposed to be a fucking Conservative, not a communist. Invading my privacy and selling it to your chums in the pharma industry is not empowering me it is precisely the opposite – so 1984 is very apt; in this case slavery is freedom. I don’t care who you think might benefit from the invasion of my privacy – it is private and I insist that it remains private. And that means not one iota of my information is taken out of my GP’s surgery. Not one byte.
Any ethical scheme would be opt-in and if these people had any faith in the veracity of the scheme would be happy to encourage people to do so. But, of course, they won’t because they realise that people will object as they have done and won’t opt-in. So instead we get the sneakiness, misinformation, lies and bullying. Well, I am not easily bullied.
I wonder how many of the 70 bodies who form ‘Patients4Data’ have anything approaching a mandate from, er, ‘patients’ which would make that particular moniker even slightly honest?
I’d be happy to wager zero. Certainly I have never been asked by them to represent me. They don’t and never will.
I have already opted out because ATOS were involved, something which the proselytisers for the data base seen very reluctant for people to know about. People need to know about the ATOS involvement because many will wish to opt out because of it.
Yours was the first document about caredata which was written to be understood by patients. Everything that was produced by those setting the system up was designed to obscure what was intended, and the commentaries in journals like the BMJ were anxious and hedged about, or only looked at the issue as it affected one set of individuals, rather than the mass of the population. No wonder the conspirators are angry with you!
(And the rest of us correspondingly grateful!)
Dear Mr Longrider
Without privacy, you are livestock.
I wonder if the MP has noted the irony in his name.
List of supporters
http://www.patients4data.co.uk/supporters
DP
Wasn’t it only a few days ago that yet another story hit the press regarding huge amounts of personal data being lost by the NHS? As long as ANY personal information is able to be copied from large data centres onto CD/DVD/memory sticks & PC’s there will ALWAYS be a risk of it getting out. And even if the above was stopped, the tossers in charge would probably continue flogging off old equipment with information still on hard drives in unencrypted form..
Come to think of it, the NHS is way behind just about everyone else as regards migrating their IT systems from XP to Win7. And that’s only the central organisation – GP practices are usually dealt with locally, and may be even worse. Old fashioned paper files had one advantage – their sheer bulk meant that “accidentally” losing thousands of patient records was far less likely than a tiny USB stick holding Gigabytes of data. Paper isn’t at risk of malware, key-loggers and other forms of remote access either…
Another advantage of paper records is that patients could be given the option, if they so desire, of looking after their own records. True, this could be done with computerised data too but it would require the patient to have a copy of the software for viewing it and wouldn’t provide much guarantee against copies having been made at the surgery.
No doubt some would say that patients holding their own records is unacceptable due to the consequences of loss or alteration. I dispute this, since so long as the patient is aware of these risks and has made an informed choice, nobody is affected but them. Centrally-held records are not immune from these problems anyway.
I recall Anna Raccoon talking about her experiences with the French healthcare system, and she said exactly what you describe – when her doctor referred her to the hospital, he handed over all her records, which she took with her, so there wasn’t a problem of the specialists not being aware of some important detail.
Something really stinks here. They originally stated that ALL data would be “anonymised” anyway. Now they’re saying that the purpose of opting out is to cause your data to be “anonymised”. The logical outcome of this is that data pertaining to those who haven’t opted out won’t be anonymous at all. So they told a big fat lie.
It’s almost guaranteed that when they create the so-called anonymous data (which will presumably still need unique indexing, or it becomes useless) they’ll also create a lookup table for referencing it back to the original. No matter how securely they claim to store this lookup table, it WILL leak out – either intentionally or by somebody making a cockup. Once it’s out there’s no going back (compare with Microsoft’s experience with the leaked source code of a significant proportion of Windows NT 4 and 2000, yet another demonstration of the so-called “Streisand Effect”).
So the government have already been caught with their pants down on this one, yet pointing it out constitutes “scaremongering”? And stealing highly-personal information and flogging it off to the highest bidder constitutes “patient empowerment”? Even Stalin would have struggled to keep a straight face when telling that one.
Quite. Although we do appear to have them on the back foot. Their attempt to sneak in below the radar has gone horribly wrong.
Interestingly there is nothing in any of those quotes which even attempts to address the lie that this data is in any way properly anonymised. In fact the data is so badly redacted that a ten-year old could re-identify the records with external data sources (for those who are still wondering, the combination of postcode and date of birth alone is easily enough to achieve it, as postcodes alone narrow the possible matches down to less than 25 households)
But we are dealing with industry shills here, not people who are used to dealing with the truth. They just want our data with the minimum of obstruction and they’re prepared to get pissy with an ignorant and easily bullied media because they’ve been rumbled – just as they were 4 years ago when they tried it the last time and got caught.
I have heard a rumour,and so far it has not been confirmed or denined by the NHS Trust concerned that, while a patient with a head injury similar to Richard Hammond’s, when he was playing fast cars in Yorkshire would normally have about 60 interrogations of his status per day in hospital, a famous patient could (and did) have 6,000 interrogations of his status in the day. This was in a hospital where access to the data is generally accessed only from work stations attached to the hospital network. Perhaps the trust would like to comment. The point I am making is that data is not even secure within the NHS.
The question is much more basic. Who has ownership of the data? Is it the patient, the GP who treats the patient, or the NHS? I expect the answer will correlate pretty strongly with the politics of the person answering.
But data is a force for good, not a Big Brother-style conspiracy
Ha! Oh yeah! Pull the other one, mate. it’s got bells on.
I haven’t been to a doctor in the UK in 20 years or so, so they can do what they like with my data – I won’t be using the NHS again. The only recent health data on me is held (probably lost) somewhere in Northern Greece, and by a private clinic in Eastern Thailand. Fuck the data gatherers. My life is private, and I intend to keep it that way.