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?

Who is talking about HACKING I have never mentioned hacking
I am talking about data being sold, not hacked

Mrsdavidcaruso - it seems that everything I say you are going to disagree with. So I think the best thing is to say nothing more to you. Just hope other people have more open minds.

Why did you mention hacking when I have never mentioned hacking in any of my posts - and you talk about closed minds when you keep saying that the data will not be identifiable data just because the data you use in your job isn't when they I have given you links from a GP (who is also a caldicott guardian ) who says it will be, when I have given you links from the HSCIC own site which shows how to buy it.

Its not just me who is disagreeing with you.

Yes I agree there is nothing more to say to you I am just pleased that
this is now in the open and questions are being asked

Mrsdavidcaruso can I recommend some very good medication

It's called a Chill-Pill

Your posts sound aggressive, which is a shame because it detracts from any arguments you put forward.

Sorry Daisy but it was clear that one particular poster hadn't even read the links I posted just kept on repeating the same old mantra and then for some unknown reason mentioned something I hadn't even discussed and was never even a part of my opposition to this

How do you know I didn't read them? How do you know that I haven't read every single item from all sources regarding this issue?

Has it ever occurred to you that I am actually the Caldicott Guardian at the GP practice where I work part time (the rest of the time being in a medical school where, amongst other things, I lecture in information governance.)

Zeezeek if you have read all sources I am curious to know why you posted these

The HSCIC does not collect information itself - it is a safe haven where data can be linked safely - as CPRD does for the HES and primary care data. Both sets of data are pseudonymised - coded - so that they can be linked, but only the GP practice or the hospital providing the HES data can tell who the patient is

Your postcode and ethnicity is not going to be included WholeLottaRosie in the extractions for research. Even for the care.data - these data will not be included - it will be your NHS number. It is a well known fact that postcodes are classed as patient identifiable data as for some postcodes there is only one house!

Yet this is a 'price list' www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

Bespoke extract - containing personal confidential data
A one-off extract tailored to the customer’s requirements of specified data fields containing patient identifiable data, sensitive data items or both

You say that you are a caldicott guardian as if that goes to prove that you are correct in what you say but this

care-data.info/ is written by a caldicott guardian

What ever you lecture in what ever data you can see in your job is of no importance.

Let me put it simply my OH works for the Navy - he has moved sideways and now works in a different department, this new job has bought him into contact with parts of the Navy he didn't actually know existed, its the same organisation, but he is now working to different rules and has access to sensitive information that he didn't have before.

And that will be the same for you, your job gives you access to certain kinds of data, but that does not mean that others will only have the type of data you use.

And I am still perplexed as to why you mentioned hacking.

care-data.info/

www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

sorry links didnt work

What ever you lecture in what ever data you can see in your job is of no importance.

Interesting that you seem to think that my job educating future doctors about information governance and my other role - protecting data in a GP practice are of no importance.

I think you have just admitted your extreme ignorance and bias against any other side of the argument other than your own - if it doesn't fit the facts that you want to present, then it is wrong. That is not logical, reasonable or scientific - but I guess you don't care about that.

No they are not important when the sensitive medical data of millions of people in this country are up for grabs

You have said that you are a caldicott guardian and you protect the data
in a GP surgery, yet the care.data link I have supplied was written by a caldicott guardian whose job it is to protect the data in his surgery - yet you are right and he is wrong.

The opposition I present is not a knee jerk reaction to media stories as I have said many times I opted out in September well before this hit the press.

I am not ignorant or biased but I have done my research I know that MPS have raised questions about this and have asked for it to be put on hold until there is wider public debate, I know that one MP has made a formal complaint to the ICO over this I am also aware that there has been a FOI request sent to HSCIC in fact there have been 2 one was sent today they have until 5th March to reply so that will be interesting

I have seen objections from people of all walks of life, GPs, MPs Journalists and the general public I have also seen comments from people who are for it, most of these (but not all its true) are from people who have a vested interest in it.

But the worrying aspect are the people who are confused and scared by it, the people who have never had a leaflet, the people who when they try and opt out find their surgery and their GP know nothing about it and yes, the people who believe this data will be left on a train or even hacked (although I certainly am not one of them).

This data and how it will be used now and in the future (when laws and ethics change which they will) is more important then the opinion of someone who uses this data, it is more important then the opinion of people like me who are researched it and are apposed to it.

The way this whole issue has been addressed is appalling, the fact is that we the general public whose data is going to be used were never meant to be able to opt out in the first place and that is unacceptable.

So just to be clear, its not just my argument, its not just my 'facts' that
I am presenting and if I am not logical reasonable or scientific than neither are a lot of professional people who are also against it,

SOOOO 1/3rd Of 111 operators will have access to the medical records
of callers www.ehi.co.uk/news/EHI/9205/nhs-will-be-dependent-on-ehrs----hunt thats 111 operators who are not medical professionals

Where was this printed on any the care,data or summary care leaflet information

Mrsdavidcaruso that's an interesting link, thanks.

The article also says "from April 2015, the full GP record will be available to patients". However I wonder if this access will be (unfairly) dependent on having not opted out of care.data and having a Summary Care Record.

Er actually thats a big fat lie under the access to medical reports 1988 you are able to see your medical reports with the following exemptions

Exemptions.

(1)A medical practitioner shall not be obliged to give an individual access, in accordance with the provisions of section 4(4) or 6(3) above, to any part of a medical report whose disclosure would in the opinion of the practitioner be likely to cause serious harm to the physical or mental health of the individual or others or would indicate the intentions of the practitioner in respect of the individual.
(2)A medical practitioner shall not be obliged to give an individual access, in accordance with those provisions, to any part of a medical report whose disclosure would be likely to reveal information about another person, or to reveal the identity of another person who has supplied information to the practitioner about the individual, unless—
(a)that person has consented; or
(b)that person is a health professional who has been involved in the care of the individual and the information relates to or has been provided by the professional in that capacity.

So no you will not ever get on line access to all your medical records they will be scrubbed before you can can see them

And lets not forget under the connecting for health the NHS other data base there was already a provision put in for people to access medical records on line - it was called healthspace and it was found to be unworkable and scrapped

www.theregister.co.uk/2012/05/25/nhs_healthspace_axed/

Mrsdavidcaruso - and still.....you are banging on long after everyone else has lost interest in your posts.....

I'm rather concerned that non-medical staff on 111 could possibly see my medical record.

I think you are doing a terrific job MrsD keeping this thread going.......

zeezeek on the contrary, Mrsdavidcaruso's posts are very interesting.

Mrsdavidcaruso - and still.....you are banging on long after everyone else has lost interest in your posts..

zeezeek - please don't make presumptions about what other posters want to read. You are in danger of coming across as arrogant.

I am very interested in MrsDavid's posts. You seem to be very dismissive of some salient points she makes.

I'm still interested. I've opted out but I'd like to opt back in if my fears are unfounded so it's worth keeping informed.

Zeezeek actually I posted twice - once to link to something from the Health Secretary and also in response to a question that was asked.

And although you may not like it there is still a lot of interest in this - so sorry I will post other information when it comes up

And the Guardian's latest - the police - yes, any old policeman - will be able to access all your medical records in future from this database EVEN IF YOU OPT OUT.

This is MADNESS.

See www.theguardian.com/society/2014/feb/06/police-backdoor-access-nhs-health-records

And Zeezeek - you're talking complete pants, sorry.

trying - yes I have just seen that posted on twitter

It also claims on one of those "excuse sheets" that the NHS will make no profit from the care.date scheme

However, on the "price list for information" previously uploaded, it tells us that, although no charge is made for ther information itself, the fee will be levied for the work involved in providing it

In other words, yes they WILL profit from it - but this is a clever way of pretending they won't

zeezeek yes us and thousands of other people concerned about this - don't like this thread? then please feel free to ignore it I however will keep posting any news I get about it and so I hope will other people