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NHS England set to share medical records with outside third parties!

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#1 [Permalink] Posted on 3rd June 2021 23:46
Seems that many are not fully aware...

You have until June 23rd 2021 to opt out

NHS England set to share medical records with outside third parties!

metro.co.uk/2021/05/27/nhs-england-set-to-share-medical-r...

If you live in England, you have until June 23 to opt out of your data being included in a ‘digital scrape’ by the NHS, which it will share with third parties.

Privacy campaigners have harshly criticised the plans of NHS Digital, which will see the medical histories of more than 55 million patients ported into a database, including mental and sexual health data, criminal records and more sensitive information.

The records will be scraped from every patient in England registered to a GP clinic by NHS Digital, which runs the country’s healthcare IT systems.

The data will reportedly be available to both academic and commercial third parties for research and planning purposes. Though NHS Digital publishes a monthly list of who it shares its data with, campaigners have said it will be difficult to find out who ultimately sees the data, due to the NHS’ ‘opaque’ commercial relationships.

While the data will supposedly be anonymised, the NHS will hold secret ‘codes’ to unlock the identity of the data’s owners if there is a ‘valid legal reason’. Privacy campaigners have said the overall plans are ‘legally problematic’ and that not enough time has been given to patients to opt out of the plan.


Digital rights campaign group Foxglove has issued a letter to the Department of Health and Social Care which questions the legality of the move.

‘Very few members of the public will be aware that the new processing is imminent, directly affecting their personal medical data,’ wrote solicitor Rosa Curling in the letter.

If patients fail to opt out by June 23, which can only be done by filling out a form and taking it to your GP, their medical records will become a permanent feature of the NHS Digital data set. If you miss the deadline, and opt out after the deadline, you can only stop future data from being included in the system.


The plan was first announced by health secretary Matt Hancock at the beginning of April, through a series of blog posts on the NHS Digital website and flyers at GP surgeries, but critics have said the publicity hasn’t been sufficient.

Advocacy group MedConfidential, who has sought to raise the alarm about the impending deadline, told the FT: ‘They’re trying to sneak it out, they are giving you six weeks nominally and if you do not act based on web pages on the NHS digital site and some YouTube videos and a few tweets, your entire GP history could have been scraped, never to be deleted.’



Opt-Out Online
your-data-matters.service.nhs.uk
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#2 [Permalink] Posted on 4th June 2021 11:36
Where can the form be found which needs to be filled and handed to the GP?
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#3 [Permalink] Posted on 4th June 2021 14:02
ummi taalib wrote:
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If you are asking about opting out, then it's the last link in the op.

You'll need the full name, d.o.b. and preferably the nhs number.
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#4 [Permalink] Posted on 4th June 2021 16:30
abu mohammed wrote:
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done that...i didnt realise it was sufficient
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#5 [Permalink] Posted on 5th June 2021 00:05
ummi taalib wrote:
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I would recommend you confirm with your GP anyway.

GP's are overwhelmed with such requests are the moment. One more call won't hurt them ;)

From what I know, people are completing the form online as above and also contacting their Practice.
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#6 [Permalink] Posted on 8th June 2021 20:09
www.bbc.co.uk/news/uk-politics-57400902.amp#aoh=162317927...

New NHS patient data store delayed by two months

The creation of a central NHS digital database from GP records in England will be delayed by two months, the government has announced.

The system was due to begin on 1 July, but the date has now been pushed back to 1 September.

The NHS had been calling for a delay to allow patients more time to learn about the system.

The British Medical Association and the Royal College of GPs had also expressed concern
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#7 [Permalink] Posted on 23rd June 2021 10:59
For Children under the age of 13, you will need to fill in a paper form as it cannot be done online.

2714-Make_and_manage_your_choice_or_your_childs_ch

If you're a parent or legal guardian of a child under the age of 13, you can also use this form to make and manage a choice on their behalf.

Information:
Email: enquiries@nhsdigital.nhs.uk

Postal address:

National Data Opt Out
Contact Centre
NHS Digital
HM Government
7 and 8 Wellington Place
Leeds
LS1 4AP

You can also make or change a choice for yourself by phoning the NHS Digital Contact Centre.

The phone number is 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).

A member of staff can:

  • help you use the online service
  • make or change a choice on your behalf
  • print and post a form to you
2714-Make_and_manage_your_choice_or_your_childs_ch
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#8 [Permalink] Posted on 22nd August 2021 12:29
www.theguardian.com/society/2021/aug/22/nhs-data-grab-on-...

NHS data grab on hold as millions opt out

A plan to share GP data was set to launch in September, but an online summer campaign has prompted widespread dissent

Sun 22 Aug 2021

More than a million people opted out of NHS data-sharing in one month in a huge backlash against government plans to make patient data available to private companies, the Observer can reveal.

The General Practice Data for Planning and Research scheme is now on hold with no new date for implementation, and NHS Digital has made a series of concessions to campaigners to try to salvage it.

Under the scheme, GP health data for everyone in England, with identities partially removed, would be made available to researchers and companies for healthcare research and planning. The scheme is more extensive than current GP data-sharing arrangements.

But after the proposals were quietly announced in May, doctors’ leaders objected to the short six-week deadline for the public to opt out of the scheme, while privacy campaigners warned the process to remove identities could be reversed.

The deadline was initially delayed to September, but an online campaign encouraging people to opt out grew over the summer. Government figures show that in May 107,429 people opted out. In June, a further 1,275,153 followed.

“We became aware of this latest GP [data] grab in late March,” said Phil Booth, coordinator of medConfidential, one of the groups most critical of the scheme. “We said ‘well that’s just going to blow up’ … and then it did blow up, exactly as we predicted.

“People do care about their GP records and their medical confidentiality. And there is a simple straightforward thing that they can do, which is to tell their GP ‘please don’t let my data be used in this way’.”

NHS Digital announced in mid-July that it was abandoning the September deadline, and pausing the scheme, with no new launch date. It will soon start a “listening exercise” and consultation process before launching a public information campaign. In a major concession to critics, patients will now be allowed to opt out at any stage, with their data deleted even if it has already been uploaded. NHS Digital is also pledging to increase the security and privacy of the data, even while researchers are working with it.

An NHS Digital spokesperson said: “Patient data is vital to healthcare planning and research. It is being used to develop treatments for cancer, diabetes, long Covid and heart disease, and to plan how NHS services recover from Covid.

“Medical research and planning benefits all of us but is only as good as the data it is based on. The better the quantity and quality of data collected, the more useful it is for researching new treatments or for planning good, sustainable NHS services to meet patients’ needs, so it is vital people make an informed decision about sharing their data.
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