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The government wants to put your lifetime medical records onto a database for research or to sell


honeybee13
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The government has quietly introduced these plans and half a million people have already opted out, as many did in 2013. People have until 23rd June to opt out of having their records sold.

 

Here are a couple of articles, one from someone representing GPs and from one of the organisations mounting a court case next week that's trying to at least slow down the process so people can make informed decisions.

 

https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england

 

https://www.opendemocracy.net/en/ournhs/legal-threat-sharpens-over-uk-government-plans-harvest-patient-data-gps/

 

HB

 

 

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Illegitimi non carborundum

 

 

 

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Couple of NHS Link on this matter:

 

WWW.NHS.UK

Information about sharing health records.

 

DIGITAL.NHS.UK

The national data opt-out is a service that allows patients to opt out of their confidential patient information being used for research and planning.

 

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I cannot give any advice by PM - If you provide a link to your Thread then I will be happy to offer advice there.

I advise to the best of my ability, but I am not a qualified professional, benefits lawyer nor Welfare Rights Adviser.

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New article link which is interesting.  "Where the NHS data grab meets the PHE data black hole"

 

Cambridge Analytica on Steroids - Keeping the Receipts (substack.com)

 

Personally, I am not fully aware of the list of pros & cons to make any judgement on this issue.  

 

The crucial question for me would be.  Does the provision of this data improve the planning and provision of health services, medicines etc ? 

 

 

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I don't think you're going to get an answer on what they will do with your data. It went wrong last time because they issued flyers and 2 million people objected so this time they're doing it almost by stealth.

 

Another article.

 

WWW.THEGUARDIAN.COM

We need more transparency before offering up our health information

 

Illegitimi non carborundum

 

 

 

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The process has been paused until 1st September to allow for more consultation. It's only paused though, they still plan to go ahead.

 

HB

Illegitimi non carborundum

 

 

 

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  • 2 weeks later...

Thanks for posting this Honeybee I am surprised there arent more comments on this thread

 

Regarding that pause, and extension from deadline - there isn't even clarity on this

 

on the NHS digital site - https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research

it says 1sep , but that is the collection date , (ie the original collection date was due to be 1 july, with the 23rd june deadline for patients)

 

I get various dates of 1st Sept,   25th augusts (https://www.medicaldevice-network.com/features/nhs-data-grab-gpdpr/)  and 23rd August

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Hi Todd.

 

You're right, it's a matter of great concern. As you say, the latest date seems to be around 23rd August and opting out on 1st September will be too late.

 

The Citizens and other groups, who are trying to contest this with public contributions, have issued an update today.

 

WWW.CROWDJUSTICE.COM

Just Treatment, Doctors’ Association UK, the Citizens, openDemocracy, and the National Pensioners Convention and David Davis MP, are the...

HB

 

 

 

Illegitimi non carborundum

 

 

 

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Posted (edited)

I just phone up my GP to ask what to do - they gave me the link to register online

 

But they had no clue about the  Type-1 opt-out   (which is a note added to the patient record to prevent data grab)

 

The national opt-out and type-1 opt out are two separate things . So I filled out a form for type-1 (link below) and took it in to GP by hand . There was still confusion about what it was, one of the staff said i didnt need it and could just do it on line, and the other said it was a new thing (even though it dates from at least 2014). I feel for them - they have a lot of pressure with COVID etc but no information.

 

Co-incidently, someone else came in with the opt out form at the same time as me

 

here is a link to the explanation and what to do: https://medconfidential.org//how-to-opt-out/

 

 

Edited by Todd from Toddmorden
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My surgery didn't know much about it either. The first lady asked me where I'd seen information that this was happening and sounded suspicious. When I said it was in the Guardian I think she was quite surprised.

Illegitimi non carborundum

 

 

 

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From what I am hearing from some WhatsApp app groups, many people who are quite level headed are looking to opt out from this data sharing.

 

 

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Some doctors already have, UB.

 

I said before that last time, about two million people opted out and it put a stop to the data grab. This time, they've tried to sneak it out so people wouldn't have the chance to opt out and indeed, today would have been the last chance to do that.

 

Thanks to the court case, we get another couple of months.

 

HB

Illegitimi non carborundum

 

 

 

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I have no problem with them sharing my data. 

 

I think that my data will be shared, even if I opted out.

 

 

We could do with some help from you.

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If you're happy, UB, that's fine.

 

I probably posted this somewhere else, it's by someone who worked on the last data grab. Just reposting it in case people would like more details.

 

BYLINETIMES.COM

Robin Burgess, who witnessed the chaos of the 'care.data' scheme eight years ago, sees the same lack of consent, trust and engagement in its most...

 

Illegitimi non carborundum

 

 

 

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Here's another article from openDemocracy who are involved in the court case.

 

WWW.OPENDEMOCRACY.NET

The health secretary says his plans will put us in control of our health data and suggests no one but our clinicians will see it. But he’s either lying or...

HB

 

Illegitimi non carborundum

 

 

 

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So the title of this thread is ''The government wants to put your lifetime medical records onto a database for research or to sell', but the banner on the forum home page promoting the thread says ''Are you happy that your personal medical details are sold to industry''.

 

Is the latter click bait, left wing propaganda or just BS?

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Probably just BS

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  • 2 weeks later...

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