AF Association

Health and Social Care Information Centre

I'd be interested to hear some informed views about the NHS's Health and Social Care Information Centre. A new scheme whereby GPs will pass all confidential patient medical records to a Care Database and from which the NHS can sell information to third parties including insurance companies. This is coming in soon and unless you send a written opt out, it will happen. I have only heard scare stories in the media during the week and I've sent my GP an opt-out as a result - but it would be good to hear of a more sympathetic angle to the story, if there is one. Some of the press stories poo poo'd NHS suggestions that the records would be anonymised. Opponents say it will be quite easy for an insurance company, for example, to identify persons from the information they purchase.

There it is. Sinister Big Brother, a worrying way for the NHS to make some money or a sensible scheme which will bring benefits to all of us? Any thoughts?

10 Replies

Interesting thoughts Leelec

I haven't opted out yet, I suppose my thoughts are

Against, insurance companies having info for "genetic" quotation, unscrupulous drugs companies targetting development based on profit not need.

For: We lack a coherent national statistical medical database, especially in things like AF for example, and proper use of the stats would be advantageous to proper medical research,

So for me, how do they anonymise? and who are they selling to. And I suspect we shall never get a straight answer to those two questions.

Not yet made up my mind, don't read either any redtops or the Mail or Express so my exposure has been relatively informed.



I like the idea of a coherent medical database but not the potential for corruption so for me the jury is out at the moment. It's a good idea to talk about this and I will be interested to read everyone's opinions on the matter. Hopefully I will make my mind up as a result although it has to be said that decision making isn't my strong point!


Hi Lee, I am really against this and opted out of the previous attempt a few years ago,. My reasons are not medical at all but based on my perceived notion that ALL governments have so far proved totally incapable of managing any computer system without losing data discs , enabling hacking and generally ballsing it up.. The last attempt I understand withered on the vine due to the inability of computers to talk to each other.. The system they bought was flawed and it all went very quiet. This is nothing new, just another attempt to screw it all up.

Just as an aside. my Brother in law made a fair amount of money selling a software package that enabled MOD and other government payments systems to talk to BACS.



I think this is NHS England so it doesn't apply in Wales... That's my understanding but I'm not sure I'm right. I just wonder whether the anonymising will be sufficient to prevent someone from piecing the jigsaw back together, and how secure it will be.


Don't worry Eatsalottie, the public sector has an excellent record for data security. They'd never leave a laptop full of personal info on a train or anything like that, it's unthinkable !!!

If it's anonymised, how can they know it's you, so what's the point? There will have to be some sort of way of unlocking it. You can absolutely guarantee that the data will be easy to access. In fact, it will have to be easy to access at least by staff. And if it can be accessed by staff, end of security.

It's a nice idea but no thanks. The older I get the more cynical I get; I thought it would be the other way round!



The press will always take the most cynical and scaremongering angle so that it makes a good story. On the plus side, if you collapse in Scotland and you are normally treated in Cornwall, for the dr's to have access to your notes would certainly be a plus for getting treated quicker and without duplicating what you have already gone through



Good comment, Mumknowsbest. I lived in Scotland until 4 years ago, when I moved south. All my medical history, of course, was in Scotland. Down here, I was continually asked about my history, including AF attacks and back operations and I could only suggest my GP would find all this in my records. They still haven't been sent down as far as I know. I would have thought there was already a database - but obviously not.


i Think the anonimising bit is if the details are used for research

If theyget it running like most other systems we have a good few years to make up our minds.


I've opted out. This does seem a different scheme to the last one with no benefits. I considered the idea of it being a good idea for some details to be accessed in case of emergency but this scheme doesn't even have that advantage. It seems just to be about making data available (Sold) to insureres and drug companies. Not for me! I do use the ICE system on my mobile phone so that emergency crews know I'm on WArfarin and have an unusual heart rythym. Forgive the spelling my shaky hand keeps putting in the wrong letters. MaryC


A lot of of medical information is already shared. I have had cases where people with a mental health history have been refused insurance, the information was not volunteered. Social services, education authorities and police all have the right of access, there is no such thing as right of confidentiality in law or religion - check it out. I really don't think it will matter if you opt in or out, one way or another there will be 'leaks'.

Like Beancounter I am in favour of shared information regarding health records by medics in differing areas, I think it daft and dangerous not to in this day and age. If the NHS can find an alternative AND ethical source of revenue then I am also for that, unless we are all willing to pay a lot more for our health care? The questions is really about what is ethical and of course that is where we are all going to draw the line in a different place.

It is also about how it will be managed, it will be a huge project to integrate NHS computers so that they share information and having several IT bods in my family who have worked on these projects, their opinion is that unless all the present systems are scrapped and everything designed from scratch to work as a whole, it won't happen because of the complexity of trying to make differing systems talk to each other.

Good idea about the ICE system re personal medication Maryjc!


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