Do you care who sees your GP records?

Article about it in today's BMJ

https://www.surveymonkey.com/s/caredata

This is a survey done by the Department of Health. I found out about it on the Guardian's NHS page where Hunt had given a speech about IT last Wednesday. I doubt whether many of the population know about it.
He reckons about one third of the 111 services will be able to access GP data on us by the end of this year. Do you trust the 111 services to get things right?

That's true, durhamjen. It's astonishing that the IT world seems to have largely bypassed the NHS!

Went to website and felt really depressed about the way the NHS is
going. Thank goodness for people like RAF.

I heard that too, Hummingbird, and it did nothing to reassure me. As I said before Pulsetoday interviewed over 400 GPs and over 40% of them were opting out with their families because they were worried about it.
Less than 40% were going along with the scheme, with 20% undecided.
However, we only have a few weeks to decide before our info can be used in ways that we will not know about. If you do not opt out, they do not have to tell you how they are using your information.
Considering that the NHS has not as yet managed to sort out its computer systems so that my GP can get information about me from a hospital 20 minutes drive away, I do not hold out much hope for the NHS being able to monitor the way this information is used.

I heard an item on 'Inside Health' on Radio 4 this week about this - it debunked some of the myths, and I felt a little reassured. You can get it on Iplayer (not great at links, I'm afraid).

I have opted out as well as will my DH.

That's good, Iam. I got my form off the internet, a website called keep our nhs public. I think the NHAP also has them.
There was some talk about taking practices to court that did what your practice does. I told my GP I wanted to opt out, so she put it in my notes. Then I signed the form as well, belt and braces.
The problem is with people who never read leaflets and never go to the surgery. What choice do they get?

I've opted out. I have monthly visits to the surgery. On the most recent visit, information sheets were available, together with a form to opt in or out. i just signed it, and left it at the surgery.
I agree though durhamj, I believe it ought to be an opt in situation.

Just resurrecting this because I have received my NHS leaflet about my records. I think many people will not notice it as it was delivered with lots of other leaflets for local shops and insurance, etc., and will have thrown it into the recycling bin without reading it.
I get information from a website called Pulse, which is for people in the NHS, and today it was said that 41% of GPs have signed out of having their data and that of their families shared.
Care.data is not mentioned on this leaflet, although it does mention
www.nhs.uk/caredata
In bold on the leaflet it says if you are happy for your information to be shared you do not need to do anything. There is no form to fill in and nothing to sign. And you can change your mind at any time.
Next to it, not in bold, it says If you have any questions or are not happy for information about you to be shhared, speak to your GP practice.
I think it should be the other way round. I think it should be opt in. We all know how difficult it is to contact our GPs, and are told not to unless it's a real problem.
Have you all had your leaflets and read them?
Have any others opted out?

Having had my medical records mixed up with another person's I do care who sees my records! (We shared the same name, DOB and NHS number, I had thought the latter was impossible!)
The experience was most unpleasant and quite frightening as my GP assumed several things about me that were totally untrue, that I had had a hysterectomy for example, and even worse that I had had an HIV test. If anyone else had access to 'my' records they would, presumably also, have read these inaccuracies with goodness knows what consequences!

You can always opt out Jendurham, Health Minister Jeremy Hunt was forced to give that assurance when it was pointed out that a challenge appeal to the EU under the Data Protection Act would most likely succeed, which would have proved embarrassing for HMG. 38 Degrees were on the ball there. At least you know now. You have enough on your plate, I can't imagine the worries you have on a day to day basis, my heart goes out to you.

You are right, RAF. We never met anyone else with cerebellar ataxia.
I have just had an aortic dissection, and apparently there is only one operation for that a month in the North East, so I am quite traceable.
It can also be genetic, although I do not know of anyone in my family who has had an aneurysm or dissection.
I could be saved by the fact that I have a lazy GP who gets all sorts of things wrong.
I understood, Eloethan, that they had to pay more to get names. It's still a pittance for the private health companies and the insurance companies.

It was my understanding also that it would be possible for companies to cross-reference the different types of data they have obtained to find out who the information refers to.

Opendemocracy NHS website
www.opendemocracy.net/ournhs
You'll find information about what has already been planned on their.
It's EU wide and NHS England already has permission to sell our data, not anonymised.

The GPs won't get any money out of this, only HM Government, via the Health and Social Care Information Centre.

I am glad you had at least heard a bit about it. The insurance companies will be able to buy the data. The scenario you describe is exactly why these companies want it. Although they won't have the family names, how many with your husband's disease live at your postcode....? So they could choose to load the postcode occupants, or with a small amount of research, your family.

Your last question would take a discussion list of its own. If you are commissioning services to save the £20 billion the NHS has to save by 2015, do you give your patient the cheapest or the more expensive, more effective drug.....? But that is for another day!

I was aware of it. What about the implications for insurance?
My husband had cerebellar ataxia. Sometimes it can be inherited.
What if an insurance company wanted my sons to be genetically tested before they would give them insurance? We were told it probably wasn't genetic as nobody else in his family had died of it, but you cannot be sure unless you have the tests.
An insurance company can probably get the information for £1.
I think that GPs who are on the CCG boards can also be compromised.
Do they do what's best for the patient or the bank balance?

It is England only.

The adoption agencies would, I am sure, ask for references from all concerned before making a decision. And they would ask for your permission to consult your GP. What we are facing here is lack of information and hence no chance to make an informed decision.

The point is that GP records are made as an aide memoire for the GP. They note down all sorts of suspicions that never turn out to be anything. As long as they stay between your GP and yourself, or another GP following up, it works very well.

Some people have past histories they do not wish to share. eg abortions they have not even told their partner about, or drug abuse whilst teenagers, I believe they should have the right to know about, and object to this data being taken if that is their wish.

What about if it helped to prevent a child being adopted by someone with say, really bad PMT?

Just thinking aloud.

Does it apply just in England, or all over the UK?

If your GP surgery looks blank because they haven't heard about it either, then there is a sample out out letter here medconfidential.org/how-to-opt-out/#download which you can take with you.

It is naturally up to the individual to decide. Some will have no problem with sharing everything, and that is absolutely fine, but that doesn't hold true for everyone. I would just like all patients (we are all patients after all) to have sufficient knowledge to make an informed decision.

Thank you for your responses, sounds as though so far no-one was actually aware of it?

You're welcome Glamma I think as RAF says there has been little publicity, and even less discussion about the implications.
I'll be off to the GP surgery next week to make sure my data isn't sold.

Thanks for that understanding it better now thanks so much ja

glamma If the data anonymised and is used for research, or if your records are used with your permission, that is one thing.
But suppose, for example, someone applied for a job with the council, and the council gained access to their medical records through a third party, would that be acceptable? I think not.

Small organisations have to have policies, and strictly adhere to them, to avoid falling foul of the Data Protection Act, but it seems that the Government is exempt from its own laws.

If it is identifiable then it should be resisted. We confide in our medical advisors believing that the information is confidential. If we have been cursed with embarrassing ailments, physical or mental, we have a right to have them restricted to those who are treating us, or may be treating us in the future.