NHS sharing records

The Powers That Be would have us believe that the info is anonymised, but we can easily be identified by the postcode, dob, NHS number which will be with our info. The info will not be encrypted.

When I went into my GP's surgery I chatted with the Reception staff and they have all opted out and so have the doctors etc. That spoke volumes to me!!

I don't think it's simply a question of having anything to hide about ourselves, it's more about who will have access to sensitive info in the future - ie just how secure is it?!

The other important point is that Care Data does NOT benefit you in any way regarding for example if you were rushed into hospital and they needed access to your medical information. From what I have read, that information is already on a separate system.

www.opendemocracy.net/ournhs/ournhs/nhs-boss-apologises-for-tweeting-hitler-parody

This is what David Nicholson thinks of the man resposible for care.data

www.care-data.info/

This is a very interesting website written by a GP to show you exactly what information will be given about you and to whom.

Don't you think, RAF, that that is what NHS England wants, along with the government? It means that the total takeover by private companies is made much easier. Divide and rule.
Even the CQC is ruled by an ex-Tory MP. Every part of the NHS is controlled by Tories.

GadaboutGran (fantastic nickname!) you are very fortunate in being a patient of Tim Walter, who is a lovely GP who provides a huge amount of support in his spare time to the EMIS clinical system user group. I am not surprised you have a good surgery website! :-)

NHS England is going to have to wake up and change their attitude, or they risk destroying all trust in patient confidentiality. The result of that will be that patients will be reluctant to be totally honest with their GP, and that could have unhappy consequences.

www.nhscarerecords.nhs.uk has a map on it where you can find out if your GP practice has summary care records.
This system was set up by the previous government, and you received a 12 page booklet about it. You could also opt out of it if you wanted to.

That's what the summary care record is supposed to do, Gangy.

I am quite happy for my details to be shared within the confines of the NHS but, this doesn't appear to be what will happen as details of patients have already been supplied to insurance companies. Where will it all end!!

I would like to think that confidentiality will be observed because it will be of great benefit to the NHS to have our details readilly available at the touch of a button. For one thing we would hope it would reduce filling in forms requesting the same details at every point of contact we make in the 'medical' world

I do not hate all things governmental. I just hate what this government is doing to the health and welfare systems.

Having decided to opt out (I'm very identifiable) I've just been to my surgery and was efficiently given a form to fill in. The problem is that it really isn't clear exactly what each of the three categories you can choose from actually mean! I'm now off to do some more research!

"Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system,"

That doesn't sound 'anonymous' to me and we all know just how insecure these systems are!

No, POGS, that's not one of the reasons behind this. That's a different use of your information, which seems to get mixed up with the care.data system.
That's the summary care record, which all healthcare people who are directly concerned in caring for you can have access to. This system protects your confidentiality. Care.data does not, whatever the government tells you. I do not like being lied to by the government.
The third party being referred to above, opendemocracy, wants the government to stop being secretive. Not a bad ideal, in my opinion.

I still can't get my knickers in a twist one way or another over this.

All I would care about is if I was taken ill outside of my local area or in the middle of the night, would I receive quicker medical assistance or evaluation of the health problem I present the hospital with. Or is that not one of the reasons behind this??

I'm sorry I don't read 'blued' posts when it comes to any thread of substance as it is inevitably nothing more than a posters political view. I like to read what the poster thinks and posts in his/her own words otherwise you are just debating with a 3rd party.

As for my records being used in a dubious way, I keep hearing from those who hate all things governmental, all my details are accessible anyway. I think that is possibly true but I don't have a concern over that either.

www.opendemocracy.net/ournhs/jane-fae/is-selling-our-medical-data-to-insurers-crime-or-not
Put this link on the other thread. What does pseudonimised mean? Nothing according to this link. Insurers have been given your info. Who's going to be given it next? Any private healthcare company which wants it.

I am still waiting to get the promised leaflet. When did you all get yours ?

I understand the point of it & that the amount of data held, because we have the NHS, is a very valuable resource, financially & for research. But I just don't like the way it's being done & really don't yet trust any Government computer system or promises about real anonymity as I believe they still have specific information that could be used to identify to some degree. Some of our GPs are against the National Scheme but are for a more local scheme so I have opted out until I feel better about it. On the other hand I'd readily agree to take part in surveys mentioned above & applied for a couple - without success.
Our Surgery website <http://www.falklandsurgery.co.uk/data-sharing/> has a useful piece stating the facts and have a link to a GP who opposes it.

The data is going to be anonymised, so where is the problem. It's to help with research.
Mind you I'm not going to be a gold mine for them. I haven't seen my GP for about 8 years

I've just put a bit of information/thoughts on another thread, www.gransnet.com/.../a1200513-Do-you-care-who-sees-your-GP-records, if it helps?

www.medconfidential.org
This is one where you will not have to cross out the surgery name, Apricot.

Apricot, just do a search for "caredata opt out", which I have just done, and you will find a plethora of forms.
You may need to cross out the name of a surgery and put your own surgery name in. It's amazing how many surgeries are producing their own forms.

Information is shared already, Granjura.
If you look at www.nhs.uk/caredata you will find the leaflet we have been given.
You will see how this government patronises the people in this country and tries to lull us into a false sense of security. Why is it that 40% of the GPs in this country do not trust this government enough that they opt out of this scheme?
Anyone who has a connection with cancer knows how many people and groups are involved. They must already have the information.
After my husband came out of hospital after his operation for cancer, the first person that phoned was someone from the local hospice. We were quite shocked at this. It turned out that the Macmillan organiser in the area worked from Willowburn Hospice and she had been given his details by the surgeon's secretary. The next people that rang up were from Marie Curie.
As a family we are quite careful which charities we donate to. The main charities do very little research into brain cancer. Not because they do not have the numbers, but because very little can be done about it.

Durhamjen- I just can't imagine the pain you went through, and I am so sorry. If you read my previous post, I am saying I have mixed feelings and would like to know a lot more before making the decision. However, I would have thought that anyone who has seen a loved one go through what your poor husband went through, wiht you- would want research including the whole population to tra and find solutions for those terrible diseases in the future. And to pick up patterns and clusters- which only research covering the whole of the population can do. Totally agree that we should be wary of pharmaceutical companies' agendas.

For organ donation, many countries have opted for an 'opting out' rather than 'opt in' register- as there is a huge shortage of donors- Many people would be happy to be donors, but for all sorts of reasons never go on to register or carry a card. Many of the countries who have an opt out system are not authoritarian communistic bullies either. I truly feel both my country and the UK should follow suit. I do not know anyone who has watched a loved one die for lack of a donor who does not feel the same.

The leaflet said contact your surgery to opt out. Today I tried. The receptionist said she knew nothing about it but that I must put my request in writing and take it in. That means almost nobody will bother and their records will be sold to anybody who asks for them.

By the way, I take part in the million women study run by Oxford University. Before that both my husband and I used to take part in the Oxford study, about diet and nutrition where they took blood samples and found out about what had changed.
It did not stop my husband from dying of brain cancer less than four months after diagnosis. There's an awful lot of research done already.
We chose to do it to help research. We were not forced to give our data to research companies.

pulsetoday.msgfocus.com/c/1knMq0ICN11mNkPRQjdb4vg
Sorry, forgot.