NHS sharing records

There was a recent thread about this, apricot which may be of interest.

www.gransnet.com/forums/health/a1200513-Do-you-care-who-sees-your-GP-records

As there has been c*ck ups with NHS software and I've personally had problems with the accuracy of my own health records there's no way I'm allowing access by Tom, Dick and Harry. In the words of Dragons
Den "I'm out!"

I contacted the practice manager and asked for my notes to be coded. That is all that one has to do.

This is around the 3rd time in the last 15 years or so that I have had to request this. One appears to have to do it each time the Government in post thinks it a great idea for our notes to be more generally available for research or whatever.

40% of GPs are going to opt out, along with their families. If GPs do not trust it, why should we?
I have opted out. There is a form on the KONP website.

Have you all actually read the leaflet or did you throw it in the bin with the other recycling rubbish it had been put through the door with? Mine had a Spar leaflet on the outside. I do not normally check what's inside those, but this time I did.
The company that will collate your records is care.data, but it does not get a mention in the leaflet.

Mine was hidden away too, inside another leaflet. I thought this was odd in due of how important it is that we read it.
I am completely undecided as to what to do about this sharing records.
Can't help but feel suspicious about the whole thing. Something smelly fishy.

Smells.... but smelly fishy sounds interesting!

Mixed feelings here (and it does not apply to us as we are no longer in the UK). On the one hand, I think we would all agree that info that can help beat some of the nasty diseases around, be in cancer, diabetes, heart problems, etc. would be an excellent idea. Having access to that info for all- would give a much better overall picture, show up clusters, geographical differences, etc. And if it can help, then I am all in favour.

On the other hand- I have great misgivings about giving info which will decide on insurances, etc. Although to be quite honest, insurances have had access to our records for a very long time. If you want a mortgage, life insurance, private health insurance, etc- you already have to give permission for them to write to your GP and get a sinopsis of your health (the bane of GPs btw- it takes hours and hours and has to be done in the evenings and week-ends on top of everything else). We had huge difficulty getting a mortgage, as OH had renal failure after contracting a strep throat which was not treated in time. GPs cannot lie when asked for résumé of records for the above purposes (and you have no choice about giving permission, or they will just turn you down).

I'd like to understand a lot more about why and how before making that difficult decision.

I am already a participant in UK Biobank which uses data from 500K people (aged 49 - 69) selected across the country between 2006 and 2010. I had my second examination last year. I think some of the other grans are also in this research programme.
"The participants ... have undergone measures, provided blood, urine and saliva samples for future analysis, detailed information about themselves and agreed to have their health followed. Over many years this will build into a powerful resource to help scientists discover why some people develop particular diseases and others do not"

That's the point, Anno. You opted in to this. Everyone who wants to has to opt out of care.data. Why should we have to? Why is the government being so secretive? Why has some of our data been sold on already without our knowledge?
The revelations about Snowden in the paper this weekend, and the fact that anyone who wants to can already find out what they want about us is cause for concern.
The only thing that gives hope that our data will not be sold to all and sundry is the fact that the NHS cannot find a system to share data between two hospitals 20 miles apart at the moment. Care.data will stop that.

I agree we need to understand the motives a lot better.
If I lived in the UK, I would register Anno- seems like a really good programme. Think is Durhamjen- many of us spend hours and days fund-raising for cancer and other health realted charities- either because we are naturally empathetic and concerned, more often because we have a relative or close-friend, neighbour, etc- we have seen suffering and losing the race. I got into teaching because a friend's daughter had leukemia (she made a full recovery. hurrah)- so I raised money by teaching French to friends and neighbours then went to Uni to qualify.

Date covering the whole population, to look for trends, clusters, etc, etc- could be invaluable in curing many of the terrible illness people suffer from.

Even if you lived in UK, granjura, it wouldn't be a question of registering for Biobank. They selected randomly albeit from a precise age range and proportionately across the country according to population. I was asked, and I said, 'why not?'

http://pulsetoday.msgfocus.com/c/1knMq0ICN11mNkPRQjdb4vg

Two different things, Granjura, as I said to Anno.
What Anno is doing she opted in for. The government care.data scheme we have to opt out of.
Apparently only half of all GPs understand the scheme and only 15% of the general public.
By the way, Granjura, my husband died of brain cancer two years two weeks and nearly 14 hours ago. My family collect for cancer research, and the local hospice, and lots of other charities like the Bobby Robson Foundation, at the Freeman Hospital, which is where he had his radiotherapy which did not work. We do it because we want to, not because we have to. It's like being an organ donor. You do it because you want to.
This government makes a big thing about choice in the NHS, then tries to take choice away from us in this. Why?

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

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.

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.

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.

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.

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.

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

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?

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 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.

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