Do you care who sees your GP records?

Even if you don't have anything in your medical notes now that you wouldn't mind others finding out about, is that going to be the same in 6 months or a year? The data is not just being taken once it will keep being taken and updated all the time. See your doctor today and by the end of the month they will know why you've been and what treatment you had. You don't know who is going to get their hands on this data, what their purpose is or how they intend to use it. Once they have the information you can't ask for it back! If you are at all concerned you need to opt out.

Have you noticed any full and frank discussion on this?
The government is now planning on bringing it back, with patients again having to opt out.
I think the plan is now for all the info to be stored on the cloud, so if anything it has changed for the worse.

Sorry I have been away, working on this. So glad you have found the thread again, happy to answer any questions if I can.

The delay should result in a full review, Tim Kelsey is still blaming the upset on poor communication. (This is the second delay because of failure to make people aware, the first one resulted in the leaflet drop decision, they were tucked inside pizza menus, or never delivered at all (latest survey says 67% unaware after the campaign, so congratulations for finding this thread!)

Things that should be included in the review -

1) Pseudonymisation at source. Dreadful word, I know, (complicated explanation alert) but means that instead of all your identifiable data except name and address going up as will happen now, it is all stripped out bar a string of unintelligible numbers. Data from hospitals and other sources can be treated in the same way, and will come up with the same string for each patient, so the data can be linked for research purposes, but the patient's identity is not revealed. This is technically possible already, but would make it more difficult to sell on, as not so desirable to clients (or the Health and Social Care Information Centre!)

2) Opt in, not opt out. The concept of being able to 'donate' your data for research is an attractive one, and should be fully examined. However the main problem is that we are a naturally lethargic population when it comes to opting in to anything, look at kidney donation for example. This would mean the data would be less valuable for research, and could be skewed, as the population who did opt in would not be truly representative of the population as a whole.

3) Do we actually need a massive database? Data could be extracted as required and approved, to meet specific research requests. This would fit the Data Protection principle not to take more data than necessary, and to keep it for the minimum period.

4) Could the HSCIC do the data processing, and not actually release the data itself to third parties wanting it? eg Diabetes research into eye disease could ask for a specific search to be run, and just receive the results, not the actual data.

5 A full and frank discussion with the public, on TV, newspapers, social media, websites, and including patient participation groups, privacy campaigners, researchers, the medical profession.

I think a full review, to be done properly, will take more than six months....

more info on www.care-data.info/
Opt out form www.medconfidential.org

And just to lighten things up,

paulbernal.wordpress.com/2014/02/25/tim-kelsey-discovers-care-data-is-in-trouble/

I am really torn on this issue, it worries me too, but a friend has sadly just had to find a home for her 96 year old mother, and has had assessments from various health departments, various branches of social workers, hospital and Drs and NONE of them knew what each other was doing. One day she had to repeat the same information five times, in a week she reckoned on having to do it a minimum of three times a week over the past two months. If it had just been her it wouldn't have been as bad, but her poor bewildered mother was not coping with it at all well, she said it made her want to give in and she would have done if she hadn't been desperate to get some help.

wish anyone luck trying to read my doctors records, all the doctors I have had since I left the doctor of my childhood and complained about not being able to read his writing, or the doctor I had as a baby
have only been to hospital since really for the babies . think I have seen my current doctor once.

An update on care.data. I am definitely worried.
www.opendemocracy.net/ournhs/jane-fae/is-selling-our-medical-data-to-insurers-crime-or-not

Perhaps that's why the Nurse Practitioner thought I had COPD. My name's not unusual either. But the doctor I saw yesterday did have the right records - in considerable detail.

Have not heard anything yet, but am concerned because I realised during a visit to the senior partner in the practice he mentioned a couple of things to me about my previous history and I realised that it was not me! Somehow my records have been mixed up with someone else; not totally because most of the details were correct but some, including one fairly major operation, were not mine. I have a fairly common name, but this is not the only time this has happened apparently. We eventually went through it together and corrected mine, but don't know if the other person realises.
GP said that this must have occurred when medical records were digitalised.

Just realised my post should have read 'were not even aware...'
I wasn't suggesting that Gransnetters were unaware!

I was well aware of it and I have opted out but I have not received anything official. Ibelieve that around 1/3 of the population are like me, have received nothing.

I gather from the media this project has been stalled for six months because of the furore about security and use of information. That's a good thing, isn't it? Maybe it won't actually happen now...

Well, panic over, it's been postponed - no wonder, since so many people (not on here) were even aware of the proposal!

I was at our surgery this morning, so asked at reception for a form. They were taking names for a collective list. They were doing it in two groups. I had the option of going on a Summary Care Record, a database available only to hospitals or other practitioners in an emergency; or also opting out of the General Practice Extraction Service (GPES) which would be available to such bodies as research organisations. Their recommendation was to opt in to the Summary Care Record, which I did. They left it up to the patient to decide about the GPES which I rejected. Anyway, the news this evening is that the whole scheme has been shelved for six months because it was not sufficiently understood. I certainly had not realised that there were the two parts of the scheme.

www.bbc.co.uk/news/health-26239532

I signed yesterday at the GP's . They only had forms specific to their practice.

Printed out the form from medconfidential tonight, will submit to GP surgery tomorrow. My sister is a practice manager and she is opting out, if she doesn't trust the people that employ her then neither do I.

I've signed the petition and will be opting out at my local surgery this week.. It seems that privacy has become impossible without a battle. It was something we used to take for granted and made us feel secure. No longer the case, unfortunately.

Last week on the NHS choices website, someone had mistyped a link and over 300 links on the site were sent to a malware site.
Do you still trust the NHS with your information?

RAF Thanks for bringing this to my attention. I believe we got this leaflet a few months ago and I remember giving it a cursory glance and recycling it. After reading your post I researched the situation further, discussed it with my DH and we've both opted out. There is a small poster up at the surgery, but it is very easily missed. I'm all in favour of sharing medical records to benefit medical care, but I believe this sort of sharing is the start of a very slippery slope.

I will do that, I did say I was confused.

Still not bothered about it though if I am to be honest. Thanks.

If you are not sure what form you received,POGS, have a look at www.medconfidential.org and read the blog. There is a copy of the summary opt out form.
There is also an article in the same blog from the GP who is being threatened.

I do not think many people read the BMJ, Galen, or Pulse, come to that.
In yesterday's Pulse was an article stating that Monitor is to investigate how to make it easier for alternative "high quality" providers to set up GP practices in areas of low quality care.
That's how care.data will be used, to allow Bupa, Virgincare, etc. to set up practices.

Are you talking about the same thing, POGS?
I think that's the summary care record, which is sensible to opt into.
The care.data scheme is completely different, and you would not get letters through the post. The data from care.fata can be sold on to anyone who requests it; private healthcare companies like Bupa have already bought data from your GPs.
A GP practice in Oxfordshire, I think it was, signed up all the patients to opt out. He has now been threatened with having his licence to practice as a GP being taken away.

I am confused about this. Both my hubby and I had letters through the post telling us about this and you had a section that you could fill in 'to opt out' if you wanted to. It looked like a letter that was sent out in general, no details required so I don't think it was a scam or anything!

I am not bothered about it particularly but I will say that if I was taken Ill in the middle of the night I would think it would be handy to have my records to hand.

I just had to send an email to the practice manager to put a code on my notes and that is mine sorted. Very simple.

Been into GP's today where they have a form ready to opt out. They complete the form and you just have to sign. Very organised.