explaining the benefits and risks of data sharing
How about they start be listing the risks alongside the benefits.
A patients' group has urged doctors to automatically opt their patients out of the new "care.data" scheme until the patients give consent for the disclosure of their medical data. The Patient Concern campaign group said that patient trust in their GPs would be undermined if doctors shared the medical data stored on their …
I hope you don't mean "like" they did in the flyer they sent round in January which was just a marketing document FOR the take up of this intrusive Govt initiative. the negatives were just glossed over. no opt out form enclosed as that would make it too easy for people to opt out. you had to contact your GP or search the NET for an opt out form.
REAL pros and cons
It "may" help research - PRO
NOT all data released will be anonymous and even when it is it may be recreated using data from other sources. - NEGATIVE
You need to opt out at each and every medical service you use, GP , Nurse, Hospitals, every primary care centre every, NHS trust, every commissioning body. EVERYWHERE individually you cant just do it once for everywhere. - Making it hard so people don't do it or don't manage to do it completely.
In order to recover from a large theft of data, South Korea may need to issue new national identity numbers to each of its 50 million citizens.
On the basis of various precedents it seems not all that unlikely that the UK health summary database will at some stage be hacked or otherwise compromised. Although personal health records are to be 'anonymised' they are uniquely indexed by NHS number.
What would be the cost, both in financial terms and as a health cost, if an event similar to the hack which recently hit Korea meant that all NHS numbers had to be re-issued? What is the likelihood this occurring during, say, the next ten years?
"However, the Data Protection Act would still require patients to be given a full explanation of the options open to them, and why the GP has chosen to opt them out."
This really is a looking-glass world. The most obvious interpretation of the DPA is one where sensitive personal data is in the control of the individual, and explicit informed consent has to be sought before that data is passed on. Normally default opt-in to sharing sensitive personal information is considered unlawful. It then seems odd then to say that if GPs try to follow the spirit of the law are they are obliged to give an explanation, and inform patients of their rights, while those that act in a way that is prima facie at odds with the spirit of the law are assumed not to have any such legal obligations.
Which implies they are making money at someone else's expense, namely ours! How long before the insurance companies get their hands on this 'anonymous' data and amalgamate it with other bits of information already sold to them, and are able to work out your health history? Car Insurance denied, our data shows your blood pressure and cholesterol level were too high at your last check-up, you're too high risk!
NHS Information Centre - the predecessor to the Health and Social Care Information Centre, which is responsible for overseeing the care.data scheme have already released and have contracts to release data from the existing Data which has been collected from hospital visits etc
It has been said that the amount they can charge may not cover the cost of actually compiling and storing all this data so the companies will be getting this data below cost and we will end up paying for it in our taxes,
My 82 year old dad had a bleed on the brain, the sort that is statistically 88% effective at killing people of his age, he was not too well and one of the enduring memories of the experience was the constantly having to provide the same details that were supplied yesterday, but to a different person. We need to know his medication, history etc. yes you may have given those to the hospital yesterday but that was another hospital. He lost the power of speech and was partly paralysed so I would phone his GP who obviously could not give me the details (patient confidentiality) but would respond to fax from the hospital we were currently talking to, just like they did yesterday...
Fax - repeat etc.
So I'm trying to get him through a serious event and thinking FFS this should not be this archaic or this difficult, FAX should not be involved in 2014.
I can see the need for a database to me the ONLY problem is making sure the data is protected.
Oh and the old bugger pulled through but still tells bad jokes, some you win.
This is not about sharing data for patient care. That should already be being done under a different initiative. Care.data is about sharing data with non-clinicians who perform fundamental, mainly statistical research to correlate and synthesize new conclusions from data that is already held. That should be a good thing.
At least in theory.
The problem here is that the organisations allowed to apply for access to the data goes far beyond the NHS, and indeed beyond pure medical research, and I believe that insurance companies (supposedly for actuarial reasons) and drug companies (probably to assess whether a condition was worth developing a drug for) were the sort of commercial organisation that were applying for access.
Care.data would not have helped your dad at all. Medical personnel, such as hospitals, GPs, A&E, health professionals, emergency services, etc. are banned from using care.data to provide care.
The only intended use of the database is to provide private companies with identifiable, full medical information. The proposed merging of Summary Care Records with care.data at stage 3 will enable the purchase (without checks to security or usage) of identifiable full medical histories to companies and individuals who have a few quid. The misleading mantra that insurance companies won't be given identifiable medical records is simply laughable, as a company buys them, then legally sells it on to another part of the group.
NHS England are supposed to be in need of £6billion, so why do they keep wasting money on a failed, immoral idea?
Funny world we live in.
We're gathering all this useful data about people that could potentially improve the quality of medical care, but our immediate response is "No, you can't have it it's mine!"
What's disturbing about that is how rational it is. For all that it makes perfect sense that this information could well be used to help people by tracking concentrations of particular conditions, or ensuring medical records flow seamlessly from one hospital to another as people move around, we just don't _trust_ our government not to abuse it.
I love the spirit behind the NHS, I really do. I'm going in to surgery tomorrow and they're going to cut bits out of my heart. This is the culmination of a process that has taken nearly a year and involved many doctors - all of whom have been caring, reassuring and professional. I'm pretty scared, but they've made me feel like I understand what's happening to an extent that I can make a rational choice about what's going to be done to me, and why it's the right thing to do.
In other words, I trust them. I trust them enough to sedate me and cut me open. That's some pretty serious trust right there.
Part of why I trust them - quite a large part - is that this hasn't cost me anything. There's no financial incentive behind it. I believe that they're recommending that I do this because it's good for me - not because they have something to gain from it. Once you take the money out of the equation it's much easier to have faith that people are doing the right thing for the right reasons.
Once there's money involved, the trust gets really hard. I do _not_ trust the people who are going to have the final say about how this data is used - namely politicians and bureaucrats. The assumption is that as soon as the data is there the overwhelming temptation is going to be to monetize it, not to use it for research into improving medical care, or to help people - because money is what politics runs on.
Very well said!
If successive governments around the world had not systematically destroyed any trust we had in them, this would be a fantastic system. But I do not trust that they will not misuse, abuse, or "loose" this data, and my medical history is one of the most private, intimate datasets I have.
'we just don't _trust_ our government not to abuse it.'
Actually given previous form I trust that my Government will misuse any and all information they can gather.
In Wales in Dec. 2015 the Government will start to harvest human organs for transplants, you can of course opt out (though they will try to pressurise you into acceding).
I don't have any objections to the current opt-in system and I think they should advertise donation more strongly.
What they haven't told us is what they will do with all the spare organs once the waiting list has been fulfilled.
I suspect (given previous form) these excess organs will be sold off to other paying customers.
"Part of why I trust them - quite a large part - is that this hasn't cost me anything. There's no financial incentive behind it."
I couldn't agree more. Its a lot easier to believe someone has your best interests at heart if there's no personal gain in choosing A over B. A recent BBC article on pioneering spinal surgery had the following quote from one of those who brought about a genuinely remarkable achievement:
"None of those involved in the research want to profit from it.
Prof Geoff Raisman said: "It would be my proudest boast if I could say that no patient had had to pay one penny for any of the information we have found."
Remind me why we hand out so many gongs to 'captains of industry' but so few to Doctors?
"ensuring medical records flow seamlessly from one hospital to another as people move around" has never been the intention of care.data. Tracking diseases and research are simply misleading sidelines and a cover for the true intention of care.data. Most researchers and medical personnel in hospitals won't have access to it.
"We have heard, loud and clear, that we need to ...."
... fuck off till you've provided an exhaustive explanation of exactly what our data will be used for, by whom, under what circumstances, and whether the third parties concerned will be profit making or not. Not to mention how eye wateringly expensive any misuse is going to be for them.
I won't be holding my breath.
The data could indeed be very useful, tracking disease clusters. looking for patterns, predicting future outbreaks etc.
Unfortunately the info being collected is far too easy to pin down to an individual. Full postcode is, in many rural locations, a single house. Add date of birth and sex - easy peasy.
Collect first half of the postcode, age in bands, and sex because so much medical depends on it, and it is much less easy!
In the case of some conditions - quite a number I suspect - even this wouldn't be general enough. Not just the rarity of a single condition either, as other conditions often come as knock-one from the first, making the idea of 'medical fingerprinting' quite feasible if you have other sources and the ability to crunch the data.
Which is why trust, the very thing the people pushing this seem so careless with, is so vitally important. If you could allow the information to be shared with the absolute and complete confidence it wouldn't be used in a way you were not comfortable with, the picture would be quite difference. But to re-establish something that has taken such a sustained assault over decades by government, civil servants and businesses would be practically impossible on any useful timescale. So they're left with the choices of compelling us with the law, lying through their teeth or playing the "think of the _____ (insert emotive group)" card. Or more likely all three together, dealing trust another unnecessary kick in the nuts.
I have been going mad trying to get my cluster of gp surgeries to converge on a single patient record system. Sounds obvious, but resistance to change and suspicion of motives runs high. Bonkers to not have regular patient records available when you call out of hours or go to a & e. I think care.data is an attempt build on existing great work which can use patient information to make startling calculations of heart attack or cancer risk. Problem in general practice is we are running fast to stand still.
Basic principle should be that getting free NHS care involves collection of your data, which is used for benefit of other patients in NHS. If privacy is your priority, pay for private healthcare and it's all yours. We are then all duty bound to protect that data, but can share the benefits. And if you don't like the government, vote for another one!
"If privacy is your priority, pay for private healthcare and it's all yours"
The words "Private" and "Privacy" are not equivalent. One does not infer the other in case this was a simple case of lexical confusion .... but I doubt it.
This looks more like, as the previous commentator says, a case of vested interest. If you have no particular wish to keep your medical records private then bully for you. The rest of us do. As for your inference that because the state pays for the NHS then it is inherently public. Maybe this is another lexical confusion. Just because the NHS is paid out of the public purse, doesn't mean that all confidential information they hold is therefore public.
And as for the unbelievable statement "And if you don't like the government, vote for another one!" .. well .. I have no words.
OK, coming back for another bite.
I don't know what vested interest you think I have? I am a normal working GP, who has looked into the care.data proposal in some depth and concluded it to be a most excellent idea. Since there is little being said in support, I dared to express my backing.
Your suspicion that I am some sort of shill is slightly unexpected, but probably reflects my differing views. I feel the same way when I read comments in support of windows 8.
Have you taken time to study the aims, methods and potential applications in more detail? I have, since I am asked about this by patients who trust me to protect their confidence. I think their information is secure and the benefits of using this data are potentially very significant. Of course there is some risk involved in the data collection, but this has been considered in some depth and good safeguards are planned.
I should point out most of my colleagues are opposed and presume bad motives being a government backed idea. Hmmm...
"... but probably reflects my differing views."
No, more the way you chose to express them, which had something of the tone of the official statements, which (a gross understatement) have tended to treat objections rather glibly and gloss over them in the rather nanny state way we got used to under Blair. I have a particular problem with the following:
"Basic principle should be that getting free NHS care involves collection of your data"
As someone else points out, its not free, we pay with our taxes. And the general principles of data protection these days just don't allow arbitrary assignment of 'greater good' by functionaries to ride roughshod over personal choice over control of your data. Without stating my own opinion here, I may or may not care less about the well being of others that use the NHS; in a democracy that remains my choice - and the strongarming of choice is at the root of much objection.
As to trust; your patients may well trust you, but as a rule trust in GPs is not what it was, certainly not in the absolute way it used to exist. I've had many GPs in many types of surgery over the years, and the trust I've had has varied. My current surgery seems to devote an enormous amount of energy to increasing its own funding, and in particular facilities, mainly space, while the GPs using that space seem to spend ever more time in private practice and therefore unavailable to NHS patients who cannot or will not pay. Sorry, but public sector funding supporting private practice just doesn't look great to me, and between that and my assessment of the standard of treatment and care I receive at the practice, my trust is as low as I've ever had for a GP because they seem more interested in income than patients.
So when I'm presented with another mailing, newsletter, leaflet or exhortation by phone, I do indeed try to figure out what its about before making a decision if one is called for, an objection if I think its wrong and being foisted on me. For all the reasons so eloquently put by commenters on this and other articles, Care.Data does not appear even to be intended to deliver what its being touted as.
I'd absolutely agree with you that a system must be found to share data for the benefit of the individual and medicine as a whole, but until the civil servants come up with proper safeguards and transparency about who gets what and what can be done with it, while acknowledging fully the ownership of the data, I'll be siding with those who just won't participate, and no variant on "think of the children/old/sick people at any cost" argument will cut any ice.
"but this has been considered in some depth and good safeguards are planned."
As every article says and all of the details released by the Government seem to confirm the safeguards are about as robust as a chocolate teapot.
And then you have to take into account the general security and success of large UK Government IT projects, NHS ones being some of the worst. Even if the original ideas about security were good, which they aren't, they would, on past experience be so badly implemented that your personal data might as well be mailed directly to insurers and marketing companies.
I see my GP tomorrow and will, again,take in signed and dated opt out forms from me and my family.
I only hope that my GP's staff have the ability to correctly act on them.
"I only hope that my GP's staff have the ability to correctly act on them."
That, after all else has failed, is my greatest concern. My surgery has a habit of occasionally changing a single digit in my phone number, then blaming me for not giving it correctly. The same number half a dozen times? So what chance of marking my records correctly.
I haven't had a single letter from my doctor's surgery delivered to me in 15 years, despite them claiming to send me one every two months.
This is more than likely due to Royal Mail incompetence, as the address is rather hard to find on the ground *, but makes me worry if my medical soul is going to be sold without me even noticing.
* The surgery claim they "can't do anything about it" and it's "my fault, not theirs" - a great start to data security methinks
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