NHS sharing records

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?

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?'

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.

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 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"

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.

Smells.... but smelly fishy sounds interesting!

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.

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.

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.

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.

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!"

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