Opt out of Sharing YOUR NHS Data

Do you want your personal data shared by the NHS? NO? Then its time to opt out of sharing your NHS data before its too late!!

It’s bad enough that all the social media companies and websites harvest your data constantly, even when you think it’s all switched off.

Every time you visit a website and click AGREE, you give that website and all companies affiliated with it the right to use and share your data. If you look, many have hundreds of ‘partners’ they share your data with and then allow to track you wherever you go on the internet. That simple ‘agree’ is really not that simple

What can you do?

Take the extra time to refuse. If there are too many, don’t use the website.

What can you do about the NHS using your data? You have the right to say NO!

How much of your private information is already shared and has been shared over the years? It’s time to fight back for all of us.

Did YOU Know about this?

Have you seen any information about this anywhere? No, nor me. I just happened to see a tweet about it. Quite amazing really considering that Twitter statistics state the average is 6,000 tweets per SECOND!

From Twitter statistics:

  • Every second, on average, around 6,000 tweets are tweeted on Twitter, which corresponds to over 350,000 tweets sent per minute, 500 million tweets per day and around 200 billion tweets per year.

There is a chart on the page showing the numbers if you are interested.

That’s just to show how amazing it was that I discovered it. I haven’t seen any other tweets about it or anything on other social media sites about it. Have YOU?

How did I find more information?Information. Opt out of Sharing YOUR NHS Data

I followed the link from the tweet I spotted on Twitter. It led to an online news website. So I checked it out, of course.

There it gave more information about what the government was up to without letting it be widely known. The article also stated that the opt out of sharing your NHS data would begin by 1st July 2021 but said the privacy statement gave 23rd June 2021 for the date by which the opt out had to be done. That did panic me. Now though, the NHS website says the data collection begins 1st September 2021.

From Wikipedia

  • Byline Times is a British political website and newspaper founded in October 2018 by Peter Jukes and Stephen Colegrave, who are also its executive editors. It is a development of Byline, a crowdfunding and media outlet platform founded in April 2015 by Seung-yoon Lee and Daniel Tudor.
  • The newspaper is published monthly, whilst Byline Times‘s sister organisations are the crowdfunding journalism platform Byline.com, its investigative unit Byline Investigates and the annual summer event Byline Festival. All are separate entities.

From Byline Times

  • It is likely that the majority of the population will not be aware of any of this. It will not know that the Government has commanded NHS Digital to instruct their GP to hand over a copy of their lifelong medical history to be sold – because the Government has taken the decision not to tell anyone.
  • Although it states that “there are lots of protections in place to make sure patient data is used securely and safely”, it is not doing the safest thing – which would be to not let its customers have copies of patients’ data at all.
  • Like the Office for National Statistics and Genomics England, NHS Digital does now have what is known as a ‘safe setting’ – a secure data processing facility with layers of rules, approvals, protections and monitoring. But the Government has not made it mandatory for patients’ GP data to only be accessed via this highly secure, heavily audited environment. And so, in all likelihood, NHS Digital’s customers will continue to buy copies.
  • NHS Digital does audit some (but not all) of its customers which receive copies of data. Several of these audits have revealed that, not only do organisations break the ‘protections’ in place, but that these do not stop them from getting data once they have been broken. Some of these protections are legal obligations, but audits have shown that one public body did not even conduct a legally-required data protection impact assessment.
  • This newly-acquired GP data will be disseminated in the same way as patients’ NHS data collected from other health and care settings already is. After the failure of a similar data grab in 2014, NHS England undertook that any subsequent collection of GP data would be in a safe setting only. However, that promised safeguard is now entirely missing.

Next Step

You can go to the NHS website to check out what it is all about and read up on it or just fill on the forms to opt out.find out more

There are parts that say where the data goes but we all know that once out there, it ends up in many different places. That has been proved over and over again by so many supposedly secure companies that have had data breaches.

From the NHS website:

* Our legal basis for collecting, analysing and sharing patient data

  • When we collect, analyse, publish and share patient data, there are strict laws in place that we must follow. Under the UK General Data Protection Regulation (GDPR), this includes explaining to you what legal provisions apply under GDPR that allows us to process patient data. The GDPR protects everyone’s data.
  • NHS Digital has been directed by the Secretary of State for Health and Social Care under the General Practice Data for Planning and Research Directions 2021 to collect and analyse data from GP practices for health and social care purposes including policy, planning, commissioning, public health and research purposes.
  • NHS Digital is the controller of the patient data collected and analysed under the GDPR jointly with the Secretary of State for Health and Social Care.
  • All GP practices in England are legally required to share data with NHS Digital for this purpose under the Health and Social Care Act 2012 (2012 Act). More information about this requirement is contained in the Data Provision Notice issued by NHS Digital to GP practices.
  • NHS Digital has various powers to publish anonymous statistical data and to share patient data under sections 260 and 261 of the 2012 Act. It also has powers to share data under other Acts, for example the Statistics and Registration Service Act 2007.
  • Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 (COPI) also allow confidential patient information to be used and shared appropriately and lawfully in a public health emergency. The Secretary of State has issued legal notices under COPI (COPI Notices) requiring NHS Digital, NHS England and Improvement, arm’s-length bodies (such as Public Health England), local authorities, NHS trusts, clinical commissioning groups and GP practices to share confidential patient information to respond to the COVID-19 outbreak. Any information used or shared during the COVID-19 outbreak will be limited to the period of the outbreak unless there is another legal basis to use confidential patient information.

What does it all mean?

Basically that they can take your data to use. They don’t have the totally secure protections in place for our sensitive and very comprehensive information. So it can be sold on willy nilly as they see fit. If it wasn’t going to be sold on, surely they would have all the complete safeguards in place?

To me, this is saying they can do what they like, when they like and we don’t matter. They seem to be turning into the big social media giants they apparently deplore for the way they harvest and sell our data.

Haven’t we seen many new laws come into being over the last few years supposedly to protect us from data harvesters? Does that not apply to governments too?

How to STOP it!Stop the steal.

From The NHS website.

  • If you do not want your patient data shared with NHS Digital, you can register a Type 1 Opt-out with your GP practice. You can register a Type 1 Opt-out at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out.
  • Data sharing with NHS Digital will start on 1 September 2021.

  • If you have already registered a Type 1 Opt-out with your GP practice your data will not be shared with NHS Digital.
  • If you wish to register a Type 1 Opt-out with your GP practice before data sharing starts with NHS Digital, this should be done by returning this form to your GP practice. If you have previously registered a Type 1 Opt-out and you would like to withdraw this, you can also use the form to do this. You can send the form by post or email to your GP practice or call 0300 3035678 for a form to be sent out to you.
  • If you register a Type 1 Opt-out after your patient data has already been shared with NHS Digital, no more of your data will be shared with NHS Digital. NHS Digital will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.
  • If you do not want NHS Digital to share your identifiable patient data (personally identifiable data in the diagram above) with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.


If you don’t want private and personal, or any of your data shared, then get the forms filled out in good time and opt out of sharing your NHS data.

DO check out the NHS website so you have all the information at your fingertips. I was shocked to know that they can share everything about you. That the doctors are legally required by them to hand over your medical records.

How long do they keep them? As long as they NEED them apparently.

I intend to opt out. We all know how careless government agencies can be, especially with sensitive  information.

I hope you found this useful. Once I had seen what was happening, I felt it was imperative to try and reach more people if possible, especially as the government has been very remiss in giving the information to the public.

Wouldn’t it be nikce if one dasy a government put the people first. The people who elected them to run the country, us the taxpayers who are constantly ripped off by MPs with expenses, second homes and nowadays giving contracts to friends. Government contracts to peiple who know nothing about what they are supposed to do, overprced government contracts to make their mates rich.


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