This is an entirely off-topic thread, except in that it involves government behaving like scumbags (again).
In the next few months the full medical records of every NHS patient in England will start being hoovered up directly from GPs' computer systems by an organisation called the Health and Social Care Information Centre. They "share" this information (including selling it), sometimes anonymised, sometimes not, not only within the NHS but also with outside organisations such as researchers and pharmaceutical companies. For your convenience the government has changed the law so that the Data Protection Act doesn't allow GPs any say in this and you will automatically be opted in unless you object.
Thanks Fredd
I vaguely recall reading about this a while back.
Truth be told, I wasn't that concerned - but I realise that could be very conditional. I suppose it rather depends on what safeguards are in place, and the extent to which the data could be passed / released, really.
Think I'd be interested in other comments, though - so will let the matter percolate a little, and see if there's some persuasive argument to make me firmly one way or the other about it.
I'd been aware of it for quite a while before the thin leaflet arrived yesterday
What did come as a surprise was learning that the pseudomised data only removed names and didn't strip out other unique identifiers such as NHS number
I'm going to be opting out
Might start exploring the options of regarding the NHS as a last resort if I can get treatment at walk-in centres or across the channel
Getting a lot of grief from Mrs Gan because I've refused to see my GP since her report to an insurance company has stuffed me for getting cover again
No wonder her surgery has one of the three lowest ratings in the Midlands
Good post Fredd.
the more people that know about this the better.
Timely alert, Fredd, well done.
I just had to rush a few weeks back to my local GP surgery to make sure me and my Mrs are not opted in. The current crop of politicians who are in charge of this (as Ministers of HM Government) are total slime, set up this fire sale of private data.
Cheers Fredd, We are opting out
Thanks Fredd, I and all of my family are opting out, who knows what this information could be used for in the future, we all know only to well how politicians only tell you what they think you need to know. I am sure insurance companies will gain access sooner or later.
I'm not affected, but if I was I'd be interested to find out more about this. I'm all for my data being shared for research purposes to help solve medical mysteries.
However as Dwain says- insurance companies will no doubt eventaully get their greasy little hands on it.
Just dropped mine off at the doctors, they were the first they had seen, no one else in the whole of Ramsbottom has cottoned on..........yet.
Every time you go to hospital lots of staff ask you questions and take notes.
Since this happens every time you visit hospital it's clear that no-one ever reads the notes.
Since my local hospital seems unable to get notes to the appropriate ward within several hours of a patient's death I think it might be good to have SOMEONE read the notes.
[I don't really mean the last bit. Just ranting.]
http://www.gponline.com/News/article/1229152/gps-face-fines-patients-opt-data-sharing/
and yet your doctor may get fined / sanctioned or whatever if he informs you about opting out ,
Is this the same as the opt out where there were forms available at the quacks or posted out circa 18 months / 2 years ago or is this a fresh one with the government hoping that if we opted out previously we wouldn't realise there is another scam going on?
This has been going on for years - http://www.hscic.gov.uk/hes. This was started in 1987.
I have worked on this project and outside organisation could request reports written based on the data.
So when you see a report that says Cancer Deaths up/down etc then generally they come from that data.
The data was anonymous but not to any great extent.
Ah right - anonymous is one thing but someone being able to see my name plastered all over is a bit different. Form went to the quacks this morning.
found an e-petition - not sure that they have explained what the petition is for very well but suppose that can be amended
https://submissions.epetitions.direct.gov.uk/petitions/59971
Its been on the BBC today, starting with 'Today' I think the brown stuff is just about ready, just a few more reports and the fan will get it!
Related:
http://rt.com/news/uk-medical-records-backdoors-020/
Spreading?
http://www.telegraph.co.uk/health/healthnews/10634539/Crisis-of-confidence-in-NHS-database-warn-GPs.html
I think the Royal College of GPs is kind of missing the main point - a better explanation of all the benefits the medical establishment's anticipating isn't going to help, it's the lack of privacy safeguards and control over our individual, extremely personal, data that's the problem.
If all the data was properly anonymised at source, and individuals could retrospectively opt out and have their data removed, then I suspect most people would be OK with it. Which really makes me wonder why they've been so hell-bent on forcing through a scheme that doesn't have those fairly simple safeguards.
http://www.bbc.co.uk/news/blogs-the-papers-26221817
The backlash against this has now prompted what some of us more cynical observers regard as a standard Government response - http://www.bbc.co.uk/news/health-26239532 in the hope that people will have got fed up with the subject by then. No indication that any change is being considered, just "better communication" of all the wonderful advantages.
The BBC was even pushing the official line earlier that this scheme would enable the NHS to improve cancer outcomes to typical European levels - a plausible argument unless you pause to wonder how those Europeans managed that without a similarly intrusive scheme.
Just watched an interview on BBC Breakfast
"let their information be used for the common good"
"it's going to save lives"
"I've discussed this with lots of people that have agreed to participate"
"will provide more time so that people can make a considered decision"
"of course there will be some that are very concerned about privacy"
So much for a balanced view
Nobody to challenge it at all and no mention of the commercial organisations that are the main concern
Nice soft interview with Tim Kelsey, the NHS National Director in charge of this fiasco, on BBC R4 http://www.bbc.co.uk/radio/player/b03vgd8w (1:52:10 in); a splendid example of the arrogance of government.
The gist of it was that the communications to date haven't been a failure, but they'll be talking to their "colleagues" and "partners" (that doesn't seem to include us citizens, BTW) about how best to communicate the myriad advantages of this scheme over the next 6 months. He's not keen on individually addressed letters to patients, though, since his media marketing advisers say they're not very effective (not in persuading people to buy double glazing, no). Presumably all the social media activity he mentioned was just the thing, according to those advisers. However, despite the fact that this is apparently an important national "debate", there's no question the scheme's going to happen in the autumn; this is just a public awareness campaign.
Perhaps his media advisers should advise him that with his refusal to engage with anyone expressing contrary opinions he's coming across as an arrogant *****.
Our policies are never wrong or misguided - we just need to browbeat communicate better.
I can remember hearing that "need to communicate better" line in the 70s
If you want to know how much (or how little) our private medical records are being sold for, http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf. For some reason providing personally identifiable information is more expensive than pseudonymised information - which seems odd just for a slightly different database query. It's all dirt cheap, though.
pile it high
sell it cheap
transaction numbers will be LARGE
and ongoing....
As Sandi Toksvig said on the News Quiz, if they want to share our details but only make it available to other NHS professionals just get GPs to write them out in the same handwriting they use on prescriptions.
I don't get what the fuss is about. Or, rather I do.
This seems to me a perfectly rational move and I'm happy to let the NHS have me on a database outlining all my medical records, as I have nothing to hide & everything to gain.
Sound idea. Imagine the scenario...... one has a heart attack, or suddenly collapses in the street or is involved in a traffic accident. You're rushed to hospital for emergency treatment, unconscious (as happened to me last year) and prior to emergency surgery or medication, the staff can access information on whether you're diabetic, HIV-positive, have leukaemia, heart disease, life-threatening allergies & a whole raft of other medical conditions which immediately inform the consequent medical procedures. Otherwise, you're just Joe Soap on a stretcher.
I think this is a vital step forward for the NHS and will save many lives.
Now, I recognise that there's a right-wing agenda running in the opponents of this move & within this thread, based on the usual American-funded anti-NHS sources: 'Nanny State', 'Socialist', 'Personal Freedom', 'BBC Lefties', 'NHS is broken' & other "Daily Mail"/"Telegraph" standard memes, but rationally, the consequence of anyone's medical records being hacked or 'sold to private firms' would merely, conceivably but improbably, result in the odd mailshot from a Nigerian trying to sell me heart drugs or Statins, which I already get free on the NHS.
I can live with that, given the potential catastrophe should I ever need emergency treatment & the responders having absolutely no idea of any pre-existing conditions.
Remember those very recent assurances that concerns that our personal medical information would be flogged to, amongst others, insurance companies, were all just "scaremongering"? http://www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-of-all-NHS-patients-sold-to-insurers.html.
HMRC - bandwagon - jump
http://www.bbc.co.uk/news/uk-27086401
Care.data database now scrapped
https://www.theguardian.com/technology/2016/jul/06/nhs-to-scrap-single-database-of-patients-medical-details
If this is still active, then I guess I should opt out, but I avoid the NHS, so I'm not sure what they will have in my records.
I'm 78, and it is well over 50 years since I had a vaccination, or took any Pharmaceuticals, and I include, aspirin, antacids, an antibiotics as pharmaceuticals. During that period, I haven't had more than a couple of minor sniffles. The NHS is great for patching up people after accidents, but when it comes to disease prevention, you only need to look at the width of many of the care workers to realise that they don't have a clue.
Seems the latest government sheet show has been mothballed with no further "deadlines/launch dates"
Whoever ponied up the money last year to link hospitals with GPs electronically in Health Information Exchanges isn't going to be best pleased.
TBH I'm not against data sharing across the NHS. It's ridiculous that if you are admitted to A&E with a cardiac arrest, the hospital cannot see your GP has recorded that you do not wish to be resuscitated. However, data security currently is so basic that any universal access would inevitably be abused.
The second link in the OP seems to refer to a different kind of member than those that usually post here. Perhaps a Mod might want to delete it?
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