Not to want the NHS to share my confidential medical records?

[SusanC5]

I'm unhappy that any medical information that I share with my GP will be shared as from April this year I believe. My postcode and my NHS number could be released to "approved researchers".

I do not trust the NHS with my personal and confidential information.

AIBU?

They have made it hard and unclear as they do not want us to opt out and only printed the leaflets cos they were told to by the information commissioners office - don't let your surgery say they dont know what to do show them the guide if they try that one

Yep. I have to go down there anyway so will be taking DH with me along with our completed opt-out forms and the guide in anticipation of any bullshit resistance. Won't be for a few weeks, but I'll report back with how I get on...

Thanks for raising this again. I have printed out the downloadable letter and will be popping it through their door this weekend. i am not usually drawn to any "big brother is watching us" scares, but I do feel concerned about this and want to withdraw myself and children.

MrsDavid as I said, the receptionist at my surgery didn't know what I was talking about. She kept insisting I meant the summary record.

I think some staff genuinely don't know what caredata thing is!

Please find this link to report surgeries who refuse to allow you to opt out, demand photo ID or just don't know what the fuck they are doing

medconfidential.org/2014/formfix-help-protect-your-gp-from-nhs-englands-data-protection-fines/

I sincerely hope people do not waste precious GP appointments because they think they HAVE to see the GP to "opt out" of care data.

When there is in fact no need for mass hysteria over care data in the first place.

For many people the only way they can get to speak to their GP is by making an appointment. If only they'd included an opt-out form on the leaflet, instead of just saying "contact your GP"! You can hardly blame people for contacting their GP when that's the only instruction given for opting out.

Secondary care data (ie hospital data) has been shared in this way for ages without issue.

Bit grim if you're ill though and can't get an appt because the system is blocked with people who aren't ill but want to "opt out"
Agree as above re hospital data
The NHS is so fragmented this might actually be a good thing to help bring it all together and plan services for the future. Plus help some of us with chronic, life long conditions.

Enlightened dont blame patients even the GPs heading the big opt out fight are telling people not to make an appointment and take up time needed to treat patients

Oh yes and in response to people who say is already being used like enlightened and stealth

What is Care.data?
Care.data is an NHS England initiative to take data from your GP records and upload them to the national Health and Social Care Information Centre (HSCIC) databases. The aim at least nominally is to combine this with existing hospital records in the HSCIC database to provide a picture of the care being delivered between different parts of the healthcare system and to identify areas where more work or investment might be needed. The NHS says that Care.data will help find more effective ways of preventing or managing illness; monitor the risk of disease spread; streamline inefficiencies and drive economic growth. The data will be updated each month and will be taken automatically from every patient in England, unless you explicitly opt out.

Didn't this already happen?
No. For the last few decades the NHS Information Centre has collected patient data from hospitals, which it has used to identify, for example, the problems within the Mid Staffordshire Trust. The HSCIC was created by the Health and Social Care Act 2012 in preparation for this data gathering, and launched in April 2013. The same data has not been collected from GPs. Until now.

What are the potential benefits of using this data?
From a research point of view, this data could be enormously valuable. Not having access to this data means that the NHS is, in some cases, allocating resources blindly, not knowing with accuracy where gaps in healthcare provision are occurring. Moreover, the datasets could provide an incredibly useful resource for third-party researchers investigating the effectiveness of certain drugs, giving them access to enormous samples and an ongoing stream of data.

Is it that big a deal if it's already happening with hospital data?
Most people visit hospital much less frequently than they do their GP. GPs will generally have someone's lifetime of conditions, prescriptions, family history, blood tests and referrals. It's a much, much richer dataset.

The above is taken from a pro care data site but even these people say there is more info in GP records than there are in Hospital records

Sorry but ...I wouldn't trust the Government to look after my hamster (or even an umbrella) - why should I trust them to "look after" my medical records when all this goes online..

Have yet to receive any information through the post (aka Junk mail) or from my Surgery about this.

My Sister has apparently received a leaflet which was stuffed in the middle of a whole load of junk mail - so maybe that is where it went.

Lookover dont wait for the leaflet I have been told if you have not seen one yet you will not get one and you will NOT get anything posted to you from your surgery print out opt out form or letter from this medconfidential.org/how-to-opt-out/

You dont need to make an appointment if you have any problems with your surgery who dont understand or wont let you use your opt out form then follow instructions from this medconfidential.org/2014/formfix-help-protect-your-gp-from-nhs-englands-data-protection-fines/

The care.data extraction from GPs is only taking one year of history - post -dated from 1st April 2013.

www.bbc.co.uk/programmes/p01s07d1 The link you mentioned to Radio 5 - Sir Professor Brian Jarman OBE called for a delay to sort it all out. We shall watch next steps with interest.

FYI - there are two more active threads on this - we seem to have all overlapped: www.mumsnet.com/Talk/in_the_news/1830491-Opting-out-of-NHS-health-data-sale?reverse=1

(100 messages - shall we see if we can move those posters to this one, as this is the longer 256 post ?? is that etiquette?)

and

www.mumsnet.com/Talk/_chat/1964118-What-does-the-NHS-share-about-us-for-any-purpose-other-than-providing-care

(26 posts)

ANY WAY TO PULL TOGETHER- Would it make sense?

For a reasoned argument -

www.kingsfund.org.uk/publications/articles/caredata-%E2%80%93-your-bits-their-hands

From the link above

"However, before being released to researchers like me, HES replaces the date of birth with year of birth, removes the second part of the postcode, and replaces the NHS number with a unique, meaningless pseudonym so that I can still link episodes of care within and between years without seeing any of the patient’s 'real world' identifiers."

Many people will still be pretty identifiable by a combination of their year of birth and first part of their postcode.

Thanks to a lot of hard work by a lot of good people this has been postponed

www.hsj.co.uk/news/hsj-live/hsj-live-18022014-caredata-programme-postponed-by-six-months/5068115.article#.UwOaKCikJ54

Yes, just heard about the postponement too. Thank goodness for that

www.bbc.co.uk/news/health-26239532 Now let's hope we get some really clear communication and honesty for everyone. Clarity of what objection means vs opt out, and some real fair and equal explanations of the benefits and risks understanding. We all need it to work, it has cost too much to fail. Please though, they do not spend ££ on another ineffective campaign. No soft language to make it palatable. Fair communications both ways and no one sided propaganda. Now at least everyone has a fairer chance of knowing what is going on.

I hope that the vague "postponing until the autumn" means that there will be a re-think and the data capture will be cancelled.

I do hope that the extra time will be spent with some people educating themselves about how care.data and CPRD are different.

So do I zeezak then people can find out for themselves not to take the word of someone like you just because the data YOU use in your job does not identify patients.

Oh and by way you have never commented on the fact that the GP I have linked to time and time again is a Caldicott Guardian like yourself, since you seem to think its such an 'important position' why no comment when another CG is not only opposed to this but has been one of the people driving the campaign to get information into the public domain.

I for one am very pleased that the campaign has had the right result.

To be honest to go from not having patients informed at all, to having a leaflet that comes with the junk mail and no opt out form to being made to put it on hold until measures put in place to fully inform patients and health workers, all in the space of a few weeks means that a lot of very good, informed and enlightened people have done a wonderful job.

I have never commented because a) I have no desire to be drawn into your debates and b) because you obviously no intention of listening to anyone's view other than your own.

Oh dear as demonstrated time and time again I have listened to a lot of people who know what they are talking about, I have posted links with more information than the " I don't have this identifiable data so no-one else will' twaddle you keep posting

Of course you have no desire to to be drawn into my debates since I seem to be able to get information that does not suit your own agenda.

The reason why you haven't commented on the CG issue is that you cannot without losing face