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?

Let's please campaign to find out more: this will affect all of our future healthcare, the role of the GP in communities and health and social care mergers. www.mumsnet.com/Talk/mumsnet_campaigns/1983765-Who-will-own-our-Health-data-in-a-future-NHS

Our information already stored at HSCIC is traceable and identifiable from all sorts of care settings: mental health, maternity and child, schools measurement programme, Electronic Prescription Service and more (systems.hscic.gov.uk/) (www.hscic.gov.uk/datacollections). It can be linked on demand (www.hscic.gov.uk/dles into all sorts of formats) by the HSCIC linkage service and tracked: www.hscic.gov.uk/dlespst which must be important and useful for research over time.

I am not advocating opt out - patients must decide what is right for them - but the door drop flyer and GP bland posters are NOT good enough for communication - the project fully intended zero communications and had to be prompted by privacy groups and ICO to do any at all. We should demand politely to know more before this goes ahead. Not after they have all GP data, from all the Mums who never find out about it and their children too.

The flyer that was sent out was a disgrace tbh. It said NOTHING and just said to speak to your GP about it.

Which is fine, but we did. GP surgery knew NOTHING about it and was very confused. We had to wait 20mins whilst the copied photo idea and got us to sign that we wanted to opt out. They actually complained that the government had done this but not bothered to properly inform the GPs themselves and they were the last people to be told about it.

It makes me worry that they will actually know HOW to opt us out and whether it will actually be done as requested.

Opted out of summary care records because child has such complex medical treatment, which changes so frequently, it would never have been accurate enough to be safe imo. Opting out of the care data thing because same son already on several specialized research databases and thats enough to make us feel we have done our bit. Personally, like to have control over who sees my records. Previously got all our medical records copied and realise how inaccurate they can be. Also, how downright sneering and contemptuous some medics are when writing our records and assuming we will never see them.

RedToothBrush - it is a Department of Health driven top down project. If you feel that strongly about it, maybe as I did, take the time to drop your MP an email or letter. They need to start hearing the public more, we are after all their electorate and the NHS patients data whose data it is and who pay for the NHS. I asked them not to waste the money on a poor leaflet in September. Didn't make it any better, and cost us all £2 M. We need to work together to make things change for the better.

I don't have any interesting medical conditions but my husband has an extremely rare condition, we will allow our medical records to be shared and DH would allow any clinical trials to be made aware of his condition.

Whats the issue? We are not going to get bombarded with junk mail about our medical conditions, people are not going to be standing on the street pointing at me as I had a boil on my arse in 1998, or that my smear test normal last year.

Technically, the data held at a GP surgery "belongs" to the GP. Under the Data Protection Act 1988 they are the data controller and are therefore responsible for how it is used/shared. Patients are the data subjects.

Care.data will use patient identifiable information. Databases used for research use anonymous data.

Also, both only contain coded information - not free text.

The question about life insurance and car insurance is nonsense, it is your duty to provide information about conditions such as diabetes, epilepsy when taking such a policy out. To withhold this information can invalidate your policies.

Your car insurance company isn't going trawl medical records for all the people that might be you before quoting a policy ffs

Thank you for this thread I had no idea that this info wouldn't be used soley for medical research.

I want to opt out, can anyone tell me when you have to do this by? Is there a cut off date. Thank you

That was my point - about insurance companies. You HAVE to disclose this information yourself.

Ya

Yanbu. So glad you started a thread about this. I missed the leaflet completely.

You HAVE to disclose this information yourself.

Only if you take out a policy.

Why should insurance companies I have never done business with have access to my medical information?

Pigsmummy and Enlightenedowl you still do not get it do you?

Yes you have to declare certain conditions to insurance companies but they try every trick in the book to ensure they dont pay out if they can do THIS in 2012 just think what they will be doing once they buy everyones data

www.dailymail.co.uk/health/article-2247055/Family-cancer-victim-refused-life-insurance-payout-didnt-disclose-PINS-AND-NEEDLES.html

Did you miss my post when I said this

The HSCIC also says that identifiable (Red) data will be available to insurance companies - as long as those companies promise that they will not use it "for the purposes of selling or administering any kind of insurance", and as long as their reason for wanting the data was "to improve NHS patient care".

If you actually believe that insurance companies will honour the above
then I may have some bad news for you about Father Christmas and the Tooth fairy

Excuse typos link to the opt out from and letter
medconfidential.org/how-to-opt-out/

This link provides some of the information given to GP surgeries
if they don't know what you are talking about data will be extracted from Spring this year and from what I gather will start in march so print put the form or letter and opt out NOW
www.england.nhs.uk/wp-content/uploads/2013/10/cd-proc-guid-bma.pdf

Actually i want to make this very clear certain people have siad their surgeries know nothing about it or give them info on the summary care record instead please print out this link and take it to your surgery if they don't know what they are doing or are trying to make things difficult to opt out

www.england.nhs.uk/wp-content/uploads/2013/10/cd-proc-guid-bma.pdf

Thank you MrsDavid

God this is scary.

Can you explain how to opt out of all sharing of records please?

I don't wish to share data because I didn't know it was going to be shared in the first place. Ignorance is NOT consent.

Can someone clarify what I'm supposed to be stopping?

1. Summary care records
2. care data
3. spine???
4. And this new initiative is something different or one of the above???

YANBU

Misc you have to opt out of ALL of them as they are used for different purposes and different read codes

This is the last letter I sent to my GP in Sept when I first heard about care.data as it was I had already opted out of all the NHS data but in Sept had the leaflet about SCR and even though had already opted out decided to give them a reminder

This letter is to be added to my medical records along with the other letters I have sent in regard to data sharing
I am returning the opt put form for the summary care records duly signed
I have already returned the opt out form for the IW shared health records duly signed.
Therefore please ensure that the following read codes are added to my details
93c3 refused consent for upload for national shared electronic records and also 93c1 refused consent for upload for LOCAL shared electronic records.
I also require you to add 9Nd1 no consent for electronic record sharing
Also please note the following
As you are probably aware, on the direction of NHS England you can now be required to transfer patient-identifiable data from the electronic medical records that you hold to the Health and Social Care Information Centre (HSCIC), via the General Practice Extraction Service (GPES) or other means. This is to be done without seeking my explicit consent and for purposes other than my medical care.
There are substantial concerns about the privacy and confidentiality of any information transferred to HSCIC, not least because NHS England has been given legal exemptions to pass identifiable data gathered by HSCIC between itself and a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. I am also disturbed to note that HSCIC provides access to patient data, some in identifiable form, to a range of ‘customers’ including private companies.
I do not believe that these widely distributed systems with so many potential users and such a wide range of uses, some as yet undefined, can be regarded as secure. And no guarantees can be given as to the future re-identification of pseudonymised or de- identified data; indeed HSCIC admits this is a risk.
I cannot know what specific information my medical records might come to hold but I regard the entirety of my medical records, existing and future, as private and personal.
Please take whatever steps necessary to ensure my confidential personal information is not uploaded and record my dissent by whatever means possible.
This includes adding the ‘Dissent from secondary use of GP patient identifiable data’ code (Read v2: 9Nu0 or CVT3: XaZ89) to my record as well as the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (Read v2: 9Nu4 or CTV3: XaaVL).
I am aware of the implications of this request, understand that it will not affect the care I receive and will notify you should I change my mind.

I went to my GP a week ago and he conformed all the read codes were on my notes so my letter was acted upon

Hey MiscAssortment - OK, let's not panic. GP records will be shared, in part, from April. You have some time to consider, decide and act.

1. Summary Care Records - this is different. If you chose not to have a Summary Care record before, then you need to tell your GP practice again, you do not want a SCR.
2. In addition, two types of sharing are part of care.data - identifiable items can be blocked from leaving the GP practice by code 9nu0. In addition code 9nu4 prevents fully identifiable data leaving the HSCIC, except with the planning and purchasing requirements 'commissioning groups which are designated as Accredited Safe Havens' and if in the Secretary of State deems a requirement. It would block researchers in the normal course of events receiving identifiable data.

We cannot prevent any data at all going from GP to HSCIC - if you really want that you'll need to speak to the GP practice and perhaps call the helpline and see what they suggest - but that data is considered deidentified and we have no rights to refuse it under the Data Protection Act 1998. The Secretary of State has declared that there will be a way however, to respect patients who choose this - so I have asked NHS England directly and I will post here what they say - if and how we can do that in reality. The two codes currently availble (above) do not achieve this.

1. Don't worry about Spine or Spine 2 - those are names of the system which links the different data sets together once they are all stored at HSCIC (the Health and Social Care information Centre) - the Spine is not in itself a database - more like the 'fetch' system I think. The backbone of all the systems, but the data are held in lots of silos, not the spine itself.

1. The new initiative is using the label 'care.data' see 2 above.

Here is the link to the flyer with helpline on back page and the care.data web link :-->http://www.england.nhs.uk/wp-content/uploads/2014/01/cd-leaflet-01-14.pdf

I've been researching for several months - happy to help if I can at all - and I really could do with your collective help to find out more what this US agreement means - asking on my own will not get anywhere - will you support asking some questions? Please take a look and comment on the campaign if you would support -->>>>

Let's please campaign to find out more which will raise awareness for Mums not here and who get no door flyer: this will affect all of our future healthcare, the role of the GP in communities and health and social care mergers. www.mumsnet.com/Talk/mumsnet_campaigns/1983765-Who-will-own-our-Health-data-in-a-future-NHS

I am not advocating opt out - patients must decide what is right for them - but the door drop flyer and GP bland posters are NOT good enough for communication - the project fully intended zero communications and had to be prompted by privacy groups and ICO to do any at all. We should demand politely to know more before this goes ahead. Not after they have all GP data, from all the Mums who never find out about it and their children too.

I'd worry more about marketing companies - for example, you are pregnant and have not told anyone as you are considering a termination, you get bombarded with targeted advertising and it becomes apparent to other people in your household.... But of course, life insurance companies will love to find out who the good and bad risks are without having to screen you first .....

This whole thing has been really badly reported in the media, it's scaring a lot of people and I can understand why. That Guardian article cited up thread is one of the worst. However, there's a reason that new treatments take 15 -17 years to work their way into clinical practice, and that's because the data needed to hasten the research is very, very hard to get access to. I don't think anyone wants this to continue, do they?

Approved researchers are just that - approved, and the approval process is fairly arduous. They don't just give access to anyone. I know, because I've had to give up a 3 year cancer research project that I got a considerable amount of government funding for because data access proved to be a nightmare. That's a crazy situation and it genuinely stops diseases being researched and, in time, treated effectively.

Please don't automatically dismiss this because you are scared of data being found on a train. You have no idea how tight access controls to patient data even within one board are. I work with teams where people in different jobs in the same department can't access the same information, and rightly so. You can't just walk out of a hospital or other care setting with a ton of accessible data on your laptop, that's not the way it works.

There's a lot of scaremongering going on, and it makes me really sad because lack of data sharing is impacting our ability to give people the care they need and deserve now. Mass panic based on rumours about this not being about healthcare and about business are frankly bullshit and is only going to make that situation worse.

It totally is scaremongering. I'm just utterly bewildered. Yes insurance companies do wriggle on paying out (sometimes) but they would have done that anyway. Its nothing to do with this issue. You do know hospital data is released don't you and has been for years? The data GP holds completes the picture as it were.
Look, the data that is uploaded is not going to be flogged to all and sundry. At least not in identifiable form anyway. And you know it could just have benefits for the long term good?

I don't understand. This has been coming for about two years. Some great info here but how have many of you not known this?

Do you all know radio is in digital too...? They will switch off analogue at some point.... Just a warning.....