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?

The phrase get a life is springing to mind. But yes, I will be ignoring this thread as I've had enough of the hysteria.

Yes I have a life but there are certain aspects of it that I have a right to keep private perhaps you would like to tell certain GPs, MPs and privacy advocates to 'get a life'

Its not hysteria actually but a legitimate concern which demands clear truthful answers and until we get them this will not go away

But There is one thing I think we can agree on I am so very glad that you are not the caldicott guardian in my surgery and that you have no personal input and control over my personal data

I don't understand the hysteria about this.

My DH has a very complex medical condition and if not opting out allows further knowledge and research to be done then fantastic. Patient number xxxxxxxx medical records being read by research teams (some to linked to universities), pharmaceutical companies and insurance companies isn't going to change our lives however the benefit of research might.

Zeezeek I appreciate the value of research, keep up the good work.

This is all useful info and interesting viewpoints.

pigsmummy then don't opt out just because you have an legitimate reason for wanting to stay in does not change the fact that many people
have a problem with the whole concept and that the public have been mislead to a very large degree.

What's the worse that could happen? Or rather what is it that you are so worried about in the event of you not opting out?

OH please pigsmummy do not go down the nothing to hide nothing to worry about route

I am not,I was asking a question? What is it that is worrying you? I genuinely don't get it.

OK Then read some of my links I have posted enough you read the links you can then see what I and 1000s of others are worried about

If we can all agree on one thing, it's that patient communications have been very unclear. I am asking in various quarters for clarifications. Here they are, and if anyone wants to ask a question not yet covered, and we can see if those who have spent a long time looking at all the publicly available info may know already, and if not I am happy to add your Qs to those I am asking of NHS England and HRA for example. I've spent several months looking at the docs in the public domain, so will do my best, but without someone 'from project' we can all do, only that, and find out what we don't know and want to.

My questions currently focus on getting clarity and confirmation of:

1. Amber data use - ie the grey area of pseudonymised data is compulsory for all
2. A precise definition of what research purposes our information is already used? As our HES data is already at HSCIC and used so we should be able to ask what boundaries if any that has in place.
3. Will this assumed consent in care.data be deemed valid for any as-yet undefined future research purposes or will we expect another consent process to follow?

Anyone missing anything else important to you?

And for pigsmummy, I think concerns vary from person to person, but realistically, it comes down to this.

Patient data is being exchanged with third parties for cash. They must see a value in obtaining it. As yet, we see little in giving it away to them. So what do we not know about how they use it?

For me personally, my main concerns are:

1. For my children - their lifetime will hopefully be long, and in that time we do no yet know how their health knowledge may be used by others

a) will they be discriminated in their future - be it from a childhood condition they outgrow, such as asthma or a mental condition which may never resurface as an adult - discrimination in employment, health insurance, travel restrictions? b) will future governments use access to discriminate based on health reasons (such as Theresa May's new immigration proposals for restrictions on those who carry certain pathogens - mixes health and non-health data uses)

1. Will we be contacted by pharmacies under the umbrella 'brand logo' of the NHS to buy products to maintain our health, if we need none to cure our illness? There is a drive in pharma to find 'unmet clinical need' - but we won't know if we would really benefit or if it's possibly beneficial, not harmful, but also commercially driven

1. I simply like that my GP is the sole holistic owner of my family health data. I also feel there should be no pressure to give up that right to absolute confidentiality. Who else is there to talk to and ask objective advice from these days where so much privacy is removed?

1. The vulnerable need that confidentiality. Automatic data sharing, and planned 'electronic patient records for all' carries its own risks for the exploitable and those who cannot benefit. See pages 31-32 of the RCGP pateint Online Roadmap: www.rcgp.org.uk/~/media/Files/CIRC/POA/RCGP-Road-Map.ashx

Ultimately if you have no concerns it is great and you can do nothing without a second thought, but to me it feels wrong to impose this secondary uses sharing, with so little solid fact of who will access it, for what purposes, for how long (data retention) and what impacts will it have?

The ABB most of the questions I have are already being asked by MPs and GP groups, as I have said I understand there is a FOI request in hand at the moment www.whatdotheyknow.com/request/independent_audits_of_hessus_and

TBH I am in touch with privacy groups and other people so am getting information on a daily basis but If I get answers I will share them with you and others on Mumsnet

Well I've just had a very interesting experience in my Drs surgery.

I asked the receptionist about how to opt out of the caredata programme. She told me to go to their website and the was a section on how to opt out of the summary record. We then had a five minute conversation with me trying to persuade her that the summary record was not the same thing as the caredata.

She eventually phoned the practice manager to clarify the situation- you should have seen her face when she realised she was wrong. She went a very deep red, told me I was correct them blurted out that she'd told lots of other people who had asked about opting out of Caredata the wrong info! She actually said "what am I going to do, I've told them all the wrong information".

I wonder if this is the general level of knowledge, up and down the country?

Anyone know the situation for anyone born after April? If you can't opt out after then, if you have any children, then they essentially have no rights over their data.

I am extremely concerned over this.

redtoothbrush I have asked the question as that will affect my own unborn baby so will let you know

Thanks MrsDavid

Just had a tweet from @docneilb Neil Bhatia he says you can opt out newborns when you register them

Hey RedtoothBrush - don't be concerned - you have a wonderful baby to be looking forward to. Speak to your health carer - the NHS number and your delivery information is all recorded for good clinical purposes so that will all be recorded on an electronic patient record anyway. The GP data in care.data is just one little part of the big picture of health records - and whether it's maternity, community care or hospital it's managed via the same place. If you are unhappy about that, and /or want the GP part specifically not to be stored, I would speak to the GP practice now - but don't be concerned. Ask the professionals who are caring for you. Sounds Like MrsDC has a plan of action too. ;)

Aside from the obvious question mark over who exactly would get access to my medical records, there are a few things that bother me about the way this has been communicated:

1/ The leaflet looked like junk mail. In fact, mine has a small tear where I started to rip it up like everything else... until I spotted the NHS logo and took a second look.

2/ The instructions for opting out are so vague "contact your GP" - hard enough to get through to book an appointment, never mind opt out of this. I'd rather people ringing to make appointments got through than have me - and a load of other patients - clogging up the line with this.

3/ The information on the leaflet is just all so fucking vague.

I am a massive fan of the NHS, but their approach to caredata has been dreadful - and for that reason I am opting out.

I feel bad for vulnerable people who'll find themselves agreeing to this just because they didn't notice the leaflet or understand what was in it.

But my GP knows fuck all about this! So talking to them is useless! Which is half the ruddy problem...

RedTooth and Slimjimmy you dont have to make a GPS appointment to opt out just print of the letter or form from this

medconfidential.org/how-to-opt-out/

If your surgery does not seem to understand what care.data is or give you an opt form for the summary care records instead give them a copy of this

www.england.nhs.uk/wp-content/uploads/2013/08/cd-guide.pdf

We have (well we think we have) opted out.

Our Gp wouldn't accept that form. They insisted we provide photo ID and signed that we opted out on photocopies of it.

Even then, they took 20mins working out what they were supposed to do and admitted they didn't know how to do it.

I'm not left with the greatest amount of faith that they will observe our request, and I've no way of checking it has definitely been done. I have very little trust in the opt out system tbh.

That is total BOLLOCKS They cant do that at all I would make a serious complaint about this what if you do have photo ID ? NO GP can refuse you
the right to opt out if you do not have it.

They have to accept the form - I will ask what my informant what to do
That is disgraceful and your GP needs to be stopped.

I have asked the question about this.

Thanks for the links Mrsdavidcaruso I know you don't have to make an appointment, but it does say "contact your GP" on the flyer and normally I would make a phone call in the first instance to find out what's required, but that means trying to get through on an already busy phone line when other people trying to make an appointment are also trying to get through. I'll complete the form and take it down there myself, but it's concerning that nobody seems to know what they should be doing in order to process the opt out. The words "piss up" and "brewery" spring to mind...