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?

Painty you still can't in certain circumstances

Your postcode date of birth and your highly personal NHS number will be sold off for research then that party will sell your data to insurance companies and suddenly your life insurance is 3 times as much and your claims are denied based on your socio economic disposition suddenly you find yourself suspected of fraud because you have bipolar or you spoke to your GP about DV

There are some things that are not meant for public consumption

It's very easy to work out who's who from an address and a date of birth and a gender

www.i4health.org.uk/

The former Chair of NSCIC is a Non-executive Director of i4health

Oh well, that's alright, then.

www.telegraph.co.uk/health/nhs/10659147/Patient-records-should-not-have-been-sold-NHS-admits.html

Patient records should not have been sold, NHS admits
The records should not have been sold to the insurance industry, says the Health and Social Care Information Centre which has taken over responsibility for NHS data

Last night a spokeswoman for the Health and Social Care Information Centre (HSCIC), which is now in charge of NHS data, said its predecessor body was wrong to sell the information to the insurance industry.
The £2,220 purchase in 2012 was made by the Institute and Faculty of Actuaries – a professional body for professionals who work for insurance and investment companies. It was then handed to another society for actuaries, which published guidance on how to "refine" critical illness cover.

And so bloody cheap!

If I'm going to sell my private medical data to the highest bidder, I'd expect a lot more than 2 grand for it. Let alone the records of 47 million of us.

Seems cheapness is the attraction.

"Prices charged by providers of proprietary data have for too long been punitive. Pharma companies have much to gain by supporting i4Health in our efforts to reduce this aspect of pharma’s input costs."

" i4Health – established by the industry for the industry "

From MrsDavid's link to i4Health.

"The industry" is pharma, btw.

I've noticed the forms our Dr is giving out has two boxes summary care record and care.com

But the official NHS ones are only for summary care records

So they are being shady before they start making it difficult to opt out

I will be opting out. I am going to type the letter today.

It may be that with SCR there was an official opt out form that came with the literature explaining it (it took a bloody great fight to get them to do that) as yet the NHS have not provided an 'official' opt out form for care.data thats why people have been using the one from medconfidential.org/how-to-opt-out/

As long as you opt out and the 'read' codes are as the the medconfidential
information it does not matter if your form has an NHS logo on or not
they have to accept the fact you have opted out.

It MAY be that the NHS/HSCIC will have to supply an official form before the new deadline but don't hold your breath

Twilight there is a template letter on the link above

This makes it more scary
Telegraph link.

The letter has gone to my GP and Ds will be doing it today.

If you wish to opt out type 'opt out care data' in Yahoo/Google and it will bring up various sites. They have a standard letter template you can save on your desk top. Complete it, print and hand to your GP.

Dawn ATOS were awarded the contract to extract data from GPS records in 2011 HSCIC data is only part of the data that has been/will be collected but it seems that the software they have been using is not working
www.pulsetoday.co.uk/your-practice/practice-topics/practice-income/gps-forced-to-manually-enter-achievement-into-cqrs-until-april/20004731.article#.Uw3YYCikJ54

Why, Mrsdavid am I not surprised that the software isn't working!

Thank you for the info.

This is the Health Secretaries 5year plan to computerise everyones records and give everybody including 111 operators access to our GP records

www.ehi.co.uk/news/EHI/9205/nhs-will-be-dependent-on-ehrs----hunt

Please also note the big LIE

Hunt said the NHS will “get through” the heated public debate this scheme has caused regarding patient privacy and the potential for the data to be reidentified.

“The reason we’re having it is because [Kelsey] decided to send a leaflet to every household to tell them about what was happening and the result of that is we will earn the trust of the public because we’re being open about it and giving them a chance to opt-out,” he said.

The ICO wanted everyone to have a letter addressed to them personally but was told no so a leaflet was the next 'best' thing HOWEVER according to the Royal Mail NHS England did not seek for the leaflet to be classified as being ‘exceptional circumstances’ as we understood that the leaflet would not qualify. This means that the leaflet has not been delivered to households that have registered with the Royal Mail’s ‘door to door opt-out’. The leaflet has been delivered to households where an individual has registered with the Mail Preference Service.

www.whatdotheyknow.com/request/royal_mail_contract_for_caredata

Is there no end to the lies and evasions from these people

Oh and it looks like DNA could be added

The Human Genomics Strategy Group (HGSG) and the Wellcome Trust have proposed that everyone in the NHS should have their DNA sequenced and stored linked to electronic medical records in the NHS, building a DNA database of the entire population. You can see the plan in this presentation.

The Government has backed this plan and Health Secretary Jeremy Hunt has stated that every baby should have its whole genome sequenced at birth. The Government has already identified partners and investors (including Google and Asia's richest man) and started to build the infrastructure to create the database. The first step is to upload all the medical records in NHS England from people's GPs to a central database called the Health and Social Care Information Centre.

www.genewatch.org/sub-569340

Oh my God no.

That is SHOCKING.

Fucking hell.

Thanks for the reporting, Mrsdavidcaruso.

Why the hell is this not being widely reported everywhere?

www.sias.org.uk/view_paper?id=SIASDec2013Paper

Please look at PDF and note

The Institute and Faculty of Actuaries, who kindly provided funds to allow us to purchase the Hospital Episodes Statistics data and note the HSCIC logo on the pDF as well

Since the care.data pause announced, there has been little news or any public communications. I've been keeping up to date, as I'm sure many of us have, and decided to start a blog to keep a track of some of the developments. And at least try and share some of my hopes and fears, what can be fixed and what we should I believe, rightly expect to see happen in the pause. If you want to pop over and have a read, my latest point-of-view is here: mumonfire.blogspot.se/2014/04/caredata-transparency-and-remit-vs.html
This project is not going away, just paused. For anyone interested in our children's future rights, and a national NHS, we need to keep alert on it.

I have my suspicions about the pause. They 'paused' the health bill but still managed to ram through the most egegrious proposals pretty much unchanged. This 'pause' might just be a 'let's go ahead at a later date when we hope everyone will be distracted'.

With the health bill, now an Act, we've got the NHS opened up to European commercial competition rules, having to tender services and open them up to privatisation, with all the associated extra costs and bureaucracy. The competition authorities have just stepped in to block the merger of two hospitals, in Bournemouth and Poole, on commercial grounds. Not clinical grounds, not the best interests of patients or anything, just the best interests of business. (Although they cloak it in the idea that competition is somehow intrinsically 'good for patients'.)

I don't know whether the merger was good or bad for patients, but the point is the decision to block it wasn't about patient care, it was about business.

There has been action but not to the good

medconfidential.org/2014/hscic-opt-out-form-phrased-like-a-threat/

In essence, HSCIC completely unnecessarily added a section to its form relating to a system called NHAIS (National Health Applications and Infrastructure Services) which if someone had completed – as many do when filling in complex forms, by signing wherever the form asks for a signature – would have meant they’d be de-registered by their GP and not be called for essential screening.

Things are still being discussed with a lot of lies and back tracking by HSCIC and NHS England

No doubt we will get the usual posters one here telling us we are all silly and there has never been a breach of confidentiality etc

www.telegraph.co.uk:80/health/healthnews/10753001/NHS-blunders-put-millions-of-records-at-risk.html