denny.53 wrote:

Hi Sanji - I work at a GP surgery and I didnt know about this.

Denny, My son and DIL both work for the NHS and they didn't know about it, but then as nurses why should they, when it doesn't involve direct care and treatment. ? This is data mining to share/sell data and is entirely different to the Summary Care Records.

I rang my GP's surgery this afternoon to check that the codes had been added to both our records (I posted my form last week) and I got through to the practise nurse. She didn't have a clue what I was talking about.
She thought I was referring to the Summary Care Records. Eventually, I got it confirmed that the codes have been added to both our medical records, by some other person who came to her rescue.

Sanji. One thing though, what about our records which are now with the hospitals? I don't know how much of our information they hold (and in my case they often seem to lose it), but is our 'opt-out' passed to them as well?

As it's now clear that they are going to collect data from other care settings such as hospitals and combine all this data, I had thought about opting out of the SCR, but by adding those two 2 codes to your records ..... The 1st stops upload to HSCIS and the 2nd stops them passing on data gathered from elsewhere, including hospitals.

Sanji x

Thanks for all that info Sanji.

We have had a few enquires about this at surgery now, so there must have been a leaflet drop in that area. Its hard to explain to the patients the difference between SCR and this and trying to explain how SCR is beneficial and of course there are always patients that 'kick off' with the admin staff plus a couple who are going to sue the NHS too!

The surgery was going to go paperless and we have decided against this now for the moment.

Personally, I think that one of the less welcome side effects of this is that the way the Government and the NHS have gone about it, it means that medical researchers will also be denied access to data in relation to those of us who opt out. It doesn't currently affect me because I live in Scotland but if a similar scheme is implemented up here I will opt out because of the very broad range of people who could have access to it whereas if there were tighter controls and it was only made available to eg not-for-profit medical researchers I might well have agreed to it because I know how useful such large statistical data sets can be to medical researchers in the Universities. The prospect of a quick profit to be taken because of the commercial usefulness of this data has potentially set back medical research, especially if large numbers of people opt out and those data sets cease to be representative of the population as a whole.

SM

Sorry to be dim but do I need to opt out of the hospital data handover separately then ?

Thanks for that Sanji. If I understand you it would appear that provided the right codes are entered by your doctor this should also cover information held by a hospital.

SMa wrote:

Personally, I think that one of the less welcome side effects of this is that the way the Government and the NHS have gone about it,

The way I read it the NHS have had nothing to do with it.

Also with regards research, I was under the impression that this data was already, (albeit anonymously) available to researchers? I know diabetes statistics are as are several others. Is this not the case?

Denny, the Health and Social Care Information Centre that will run this database is part of the NHS

http://www.hscic.gov.uk/patientconf

And, yes, much of this data is already made available to medical researchers and I personally have no problem with them accessing this data anonymously. I don't even mind that social science and policy researchers can access the top level processed statistical data. I don't even mind us as patients being able to access some of this data re eg hospital mortality rates. But this new system means that a far more people including insurance companies can request direct access to the actual database as opposed to processed statistics derived from it.

Though it will be anonymised with identifiers being stripped from individual records, anybody who has enough information already about an individual could potentially re-attach it to a particular person as is made clear in the article from the Guardian that Sanji provided the link to in her very first post. For example, this data is collated and can be sorted by postcodes which actually relate to relatively small numbers of households but given that my travel insurers also have my postcode, my date of birth, a list of pre-existing medical conditions, details of any hospital visits in the last two years and the like, they could if they wanted to fairly easily request data relating to everybody living in my postcode and then without too much difficulty if they were so minded eliminate people who don't share my DOB, then look at only those who have Meniere's Disease and so on. Bingo, the only record that matches my details is actually mine and they then know everything else about my medical history too.

That is what concerns me and why if something similar is set-up here I would opt out too. But it would also then mean that medical researchers looking into Meniere's Disease would not be able to access my data and include it in any data sets for investigating eg correlations between Meniere's and other medical conditions or possible environmental factors etc.

SM

Thanks SM

Thanks for this Sanji I have printed off four forms and my family intend to submit them. Don't like the idea of this at all TBH.

Really bad how poorly publicised it has been.

Doe

Personally, I think that one of the less welcome side effects of this is that the way the Government and the NHS have gone about it, it means that medical researchers will also be denied access to data in relation to those of us who opt out

I think the most disgusting thing about this sneaky, underhand and ill thought out scheme conducted by this government, is posting information leaflets in-between junk mail for the local pizza outlet and the local gardening centre, with the aim to trick people by not fully explaining that the care.data scheme is not the same as the Summary Care Records, and having decided that we are all going to opt in, by not providing an opt out form.
I wouldn't put it passed the Government to have deliberately done this to confuse folks, and people are being given forms to opt out of the Summary Care Records instead of the care.data scheme when they contact their surgery.

The other side effect may be that patients now knowing the confidentiality between the GP and patient relationship has been shot through. Patients may be more reluctant to confide in their GP or even hesitate making an appointment to see them, when early diagnosis may mean the difference between life and death. No research or data collecting/selling will be of any use to these people.

The data sent for research from the GP is anonymised and far more research material is gathered from hospitals by the National Institute for Health Research (NIHR). Your GP won't know about the detailed observations recorded in a patient's 'care plan' and hospital notes. He/she will get information consisting of, eg: Consultant, date of admission/discharge, test results, medicines and diagnosis.

I can see that researchers would be 'jumping for joy' to have the medical history of every man, woman and child in England on a database for them to access, however, nobody seems to mention that unless it is of national interest, like an epidemic, every patient has to give their consent to take part in research.

GPs can't just send off information about you without your permission, unless it is between other health professionals concerning your health. We accept that has to happen within the NHS and it is generally beneficial to us (the patient) if health professionals 'talk' to each other.
GPs are independent contractors and they have been put in this position by the quango HSCIC, who are forcing them to upload data for this scheme.
Data which will be combined with other data and made available to a multitude of organisations outside of the NHS and the UK, who are willing to pay the price....Virgin Health Care, BUPA, GlaxoSmithKline, Insurance Companies,Tesco etc.

Every child born after data is extracted in early March, the child will automatically be opted in, and the child's parents will have to opt them out when they first register the child with a GP.
The Health and Social Care Information Centre (HSCIC) was set up as an executive non departmental public body last year. - In other words it's a quango 'warehouse' to gather data of individuals from care settings across the NHS. Neither doctors or nurses will have access to it.

HSCIC won't be running the servers, the contract has been given to the private company Atos ..... Atos healthcare are the people working on behalf of the DWP accessing the sick and their ability to work.
Mmmm, Atos running the system housing your medical history and conducting examinations/assessments for the DWP.?

When there is a breach of data because no system is safe, any IT expert will tell you that....When your private and sensitive data ends up in India or some other far flung country.The government by contracting out to a private firm, they'll will be able to say, "it's nowt to do with us."
The fact that Atos are involved with their appalling record in connection with the DWP. That alone would be enough to make me opt out of this care.data scheme.
http://medconfidential.org/

Sanji

.nobody seems to mention that unless it is of national interest, like an epidemic, every patient has to give their consent to take part in research.

Yes, generally people need to give consent for researchers to access a complete individual record and yes, researchers definitely need to obtain signed, informed consent from anybody who is to become an active participant in eg clinical trials or any longitudinal studies that monitor their progress or the development of the medical condition on an individual base but they don't necessarily have to do so in relation to the sort of statistics-based research that I was referring to where what researchers are accessing is not raw data records but collated and processed data sets. Mortality rates for hospitals, for example, and any other league-type tables etc are released without every individual patient having signed a consent form agreeing that they will form part of that anonymised data set. Like so much associated with this initiative, the ethical issues re consent are very muddied and perhaps people don't realise that data collected by the NHS and derived from their records is already made available not just to medical researchers but the general public.

SM

perhaps people don't realise that data collected by the NHS and derived from their records is already made available not just to medical researchers but the general public..

SMa, We are singing from the same hymn sheet, however, AFAIK, the data collected from hospitals is anonymised when it used for statistical purposes and released to the general public, and when it is fully anonymised with no chance of identifying the subject, then the law doesn't require the person to give their consent.... it's 'number crunching'.

The NHS has been collecting data (electronically) for over two decades, but, it was sporadic because not all the local health authorities (as they were called in the past) forwarded the data on a regular basis to the now considered 'out of date' NHS database, and therefore it was impossible to gain a complete picture of what was happening either with patient care or the nation's health.
I think it was 'Dr Foster' who bought all this data from the NHS and with the software produced more accurate statistics, and then sold it back to the NHS making a considerable profit.

Your GP also releases anonymised data on a regular basis. When you go to see the doctor because you've got a splinter in your finger that has become infected, and he/she starts asking you if you smoke and how many fags a day, or how many units of alcohol you consume in a week.
It has nothing to do with your finger, it is data required in the form of codes on a list, which will give information to the 'number crunchers' of how many people continue or have ceased to smoke, or if we are (as a nation) consuming too much alcohol.

Apart from giving results, for example, on how many people have stopped smoking and how successful any campaigns have been, it forecasts what services will be required in the future, and as GP's are independent contractors, uploading this type of data is now compulsory and it is how they get paid.

This care.data scheme has put GP's in the position of uploading data that is not anonymised when it leaves his/her control, therefore breaking their oath that whatever is discussed with your doctor remains confidential and within those four walls.
It cannot be fully anonymised, otherwise it couldn't be amalgamated with data collected from other care settings on the HSCIC database.

Sanji

Thanks for the extra info re Atos Sanji, that is very interesting indeed, and very sly

Sanji, I just wanted to say thanks for starting this topic. As far as I know, we've never had any info through the door on this scheme (I usually check through the junk mail before recycling it). I went to our surgery the other week and asked them to add both the codes to mine and my husband's records so hopefully we are ok now.

No-one I know has heard a thing.

I'm still peed off at the Atos thing. Basically anyone who attempts to claim, won't be aware that the DWP already have access to medical information.

Thanks Sanji

Breaking News !!!

http://www.rcgp.org.uk/news/2014/february/rcgp-calls-for-reassurances-before-controversial-data-scheme-goes-ahead.aspx
Jaysus, I'm wasted sitting here, I could have told them that weeks/months ago.

If they don't do this properly (instead of a cheap junk mail drop) and take every measure possible to inform the general public about Care.data, with clear information that doesn't muddle it with other NHS databases, such as the Summary Care Records or the HES ( Hospital Episode Statistics), then I'll wait for the 'fall out' and the first person to sue NHS England.

I don't give in to emotional blackmail either, I'm not here to leave a digital footprint on a database for researchers, I'm here to be remembered for who I am.
I'm sorry, but my medical history belongs to me, it's neither my doctors, the government or any researchers to grab and profit from it.

Ask me nicely and I might sell it you.

Sanji x

Now delayed for 6 months.

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

NHS England must now write to every patient direct and include an opt out form.

Sanji x

Brilliant! Thanks so much Sanji!
took my letters into surgery today and receptionist knew EXACTLY what they were for!