Asking the patient if they want their data shared *FIRST*. And then give them a slice of the pie?
The UK government has said the NHS should be "fairly rewarded" by private firms that slurp patients' data. Outlining proposals for a code of conduct for data-driven care technologies, health minister James O'Shaughnessy said the aim is to create a "safe and trusted environment" for healthcare innovation. The Technology …
"It will set guidelines on how patient data is to be protected and include 10 commercial principles detailing how companies should work with the health sector, and what the NHS expects in return, for instance discounted access, equity or royalty schemes."
The above sentence makes it abundantly clear the gov' doesn't give a rats about the providers and owners of this data.
First it is only setting guidelines not regulations.
The principles are commercial not concerned with individual privacy.
What is the NHS getting out of it, not what benefit is there for the patients.
When will it get to the point where your treatment will be limited because the data has no value? You're no longer a patient you are an NHS product.
"What is the NHS getting out of it, not what benefit is there for the patients."
Depends what the data is used for, but from a research point of view, having the medical records of every person in an entire country from birth to death could bring all kinds of benefits.
For example, you could cross reference the first few digits of a patients contact number with cancer rates, thereby showing if people who use a mobile phone (ie their contact details start with an 07 number) are getting brain cancer. Don't forget, this data goes back decades and covers millions of people, so you could draw some pretty solid conclusions.
I agree that this particular suggestion (especially the voluntary nature of these guidelines) is pretty iffy, but there is definitely benefits to allowing some researchers limited access to NHS data (with strong oversight).
In most sectors, I would agree with this stance. In healthcare, if the outcome of "slurping" data is to provide clinical data that only experts will be able to make use of to improve patient outcomes on a national level, then I really don't have a huge problem with the funds going straight into the NHS.
The data was collected with the promise that it was confidential since GOV admits they are sharing without consent then some people need to be in court.
NHS your only right is to die but do not expect respect or dignity from us, also if we see something on your corpse we fancy then it's ours.
"They don't care, no MP or rich donor uses the NHS anyway they're probably all private."
I've always believed that as a matter of principle MPs should be be barred from private healthcare - so that they can experience first hand the consequences of thier (often dogma driven) decisions and policies. let them suffer alongside us the interminable waits for appointments or treatment, and queues to see a GP.
This is the thin end of the data slurping NHS wedge, later will come sharing with insurers and other "medical related" businesses, - "Dear Sir/Madam, we are aware of your recent diagnosis - allow us to introduce ourselves we specialise in illnesses of your type and can offer a wide range of devices and aids to help you in your daily life...."
This needs to be stopped.
"They don't care, no MP or rich donor uses the NHS anyway"
"Do you think the NHS would be in that state if our children were using it?"
Never mind that in the UK, private hospitals/practitioners which fuck things up or end up out of their depth dump the results on the NHS as emergency cases.
Banning _that_ particular scam(*) would probably be a wakeup call for $RICH_BASTARDS when they found their private medical costs rising to USA levels.
(*) Privating the profits, socialising the costs.
"The data was collected with the promise that it was confidential"
Yes, and if the ICO doesn't have the balls to step up to the plate, then going straight to the EU privacy Commissioner(*) for an egrarious breach by the government seems to be the correct course of action
(*) Due to the government having undue control over the national privacy commissioner.
The UK government has said the NHS should be "fairly rewarded" by private firms that slurp patients' data.
Seems reasonable. And a fair reward should be a nice, comfy cell with potential for early release, if the NHS executive volunteers for an exciting new research study. Or as Google's Red Queen would no doubt say "You're all going to die down here."
Yes, the NHS may have lots of potentially lucrative data, but it's our confidential, and sometimes proprietary data. Given past shenanigans with drug companies milking patients with unusually lucrative medical conditions, there needs to be carefully informed consent to make sure it's not just the NHS or the drug companies that benefit, but everyone. I guess some form of GNU licence could work.
This is after all the same NHS that charges £8.80 for drugs that may cost <20p..
"This is after all the same NHS that charges £8.80 for drugs that may cost <20p.."
...not forgetting it's also the same NHS that charges £8.80 for drugs that may run into £100s too and that a significantly large proportion of prescriptions are for users who don't pay at all for one reason or another. Bloody socialism eh?
Bloody socialism eh?
Bloody guinea pigs more like. Which is where access to NHS data could prove interesting. So take something like this-
Which had been >£8.80 but can now be had for <50p thanks to it's patent expiring. And for some reason probably based on marketing, a large part of the UK population has been prescribed. So has it had any positive effect, and have there been negative effects. Which would likely mean legal action against the NHS as prescribers because the pill peddlers had warnings.
But having been one of the world's largest clinical trials, patient data from our statin experiments would no doubt be valuable.
"Yes, the NHS may have lots of potentially lucrative data, but it's our confidential, and sometimes proprietary data."
Of course this should be pursued under GDPR but by the time anything gets processed, the NHS will have been Brexited out of GDPR so expect patients rights to all but disappear in the interests of rewarding the NHS.
Any? Same short-termism! Suck the life-blood out of whatever you're involved in and its off to the glorious land of lucrative revolving doors.
Governments don't actually want to do anything any more. They're drunk addicted to tech kool-aid and expect the private sector to do everything.
How were safeguards not in place before Google-Deepmind? That's a good predictor of the future. Its going to be 'dark' unless you're in the elite circle!
Why must my data be given away in the first place?
At no point while being treated by the NHS was I told that my data would be shared or sold with anyone. I have never given permission for my data to be sold or shared nor have I ever signed any paperwork that said that my data will be shared outside the NHS if I accept treatment.
If they start asking patients to sign away their rights, they may stop using the NHS to avoid their data being shared. This could lead to instances where for example someone who suspects they have contracted HIV may choose to not get checked/treated and go on to infect others rather than risk company x,y,z getting hold of that pseudo-anonymized (not anonymous at all) data.
Sharing NHS data in 99.9% of cases will not benefit NHS patients.
NI means nothing.
But whatever the NHS has is funded by the taxpayer. That includes data. So now we're saying we have to pay (again) for data we already paid for. I remember this battle over map data: it seriously held back developing geographic information systems when you had to pay a King's ransom to the OS for anything.
Oh, and to those commentards speaking of data in the first person, I hear a whooshing as the point goes over your heads. That is to say, I presume we're talking statistical data, not personal data here.
I presume we're talking statistical data, not personal data here.
A presumption is as good as an uninformed assumption, and that's basically the nub.
The government prefers to waffle and be vaguer than a shifty 'fell-off the back of a lorry, honest guv' dodgy trader on these matters too often.
People rightly suspect them of shenanigans because of this vagueness.
NHS and data: The never-ending conversation! (That's because it's not a conversation.) Here's how this works.
Nothing will ever be done about all the NHS crimes and violations. The new system was set up specifically to collect, collate, share, and sell data to third parties, and that's what it does.
The Department of Health is complicit, with its endless DPA and GDPR violations.
The ICO is well aware of it all and chooses to do nothing.
The government IS the ICO -> The government IS the Department of Health -> The government IS the NHS.....
Of course the government isn't going to be ethical, or practice to standard. And no-one is ever going to be able to make it.
Speaking of the NHS and data, another thing you might not know which several million of really should.
The NHS keeps a database of all its former and current employees. If you have ever worked for the NHS, or if you now do, there is a very good chance that any applications you make for jobs, either in the NHS or outside, will see your data being accessed and read by any number of outside people. You will not know who they are. You will not know what they have seen. Whether this is legal is questionable. But this is the current system.
If you have four or five years to spare, conduct this experiment: Submit a new SAR to the NHS. It then has one calendar month to send you everything, in the new GDPR required format. This is the template the ICO put out for people to use to request data.
There are very few acceptable 'excuses' (and no 'reasons') for a company to refuse to give you what is yours, so read the ICO site before you submit your SAR so you know what you will need to prepare for next, when the company breaks the law. We've been dong this a while. We know how it works.
Try it. When the NHS fails to respond in the legal timeframe with all your records, try using the process and you will begin to see how the System works.
I signed myself out of the last 'anonymised' proposal because all anyone needed to identify me was age bracket and postcode - there's hardly anyone here at our postcode. I don't expect any new proposal to be any better, so its up to the government to *prove* my information is safe.
Have you not heard of the national data opt-out, another one of those government run botched IT projects. You get the right to opt out of your data being used for anything not directly related to making you well.
Anyway the point is, Information is valuable, and even completley annonomised data sets are valuable. And currently private firms have access to this data for peanuts and make millions, so to find the shortfall the NHS needs but the Gov dont have, surley they should pay fair price for it.
But the NHS is broken, and throwing money at it wont make it better. It needs to be re-formed, ie get rid of all these "trusts" and go back to one national organistaion that makes everyone better. Remove the postcode lottery, the stupid contracts where you have to get 3 busses for an MRI cos the CCG saves £10 per patient, where the areas that are more efficient pass those savings not to private companies as profits, but to those areas that still need a service, but it costs more to do.
Centralise procurement and de-centralise care, improve patient choice and remove the fat cat Trust Boards, CCGs and Commisioning units, that sap all the sense and care out of the system.
Sadly, the NHS was never a single entity, but a forced amalgamation of many private health suppliers.
Possibly comparable to nationalising the railways but still having the individual railway companies infighting and settling old grudges.
Which is a depressing thought, as that could be a model for the NHS in the future. Constantly changing commercial franchises with some underlying architecture (IT for example) still provided by the state. Just hope you don't get sick in Southern Region when they are in dispute with the hospital porters.
Icon for your new selfie if this happens.
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