The NHS are about to hit the button on sharing your personal data with third parties who will not need your consent to do what they like with your data. You need to opt out before 3oth June 2021.
GP practices in England have been instructed to hand over their patients’ medical data with just six weeks’ notice. There is a very informative article on this in the guardian - theguardian.com/commentisfr...
NHS Digital have some information on this including a video and how to opt out.
After you have read all the information about this, if you are happy for the NHS to share your data, you need to nothing.
However, if you want to opt out, you need to be quick. You can also find out how to opt out here:
Thank you for the link, absolutely shocking. I learnt of this a week ago but this is really interesting. People need to read as I opted out via the NHS website on monday - they text me a code to confirm it was me, then after clicking the opt out option I got a text from NHS digital stating I have opted out & my data will not be shared..
However, after attending my gp practice yesterday 8/6/21 for blood tests,
I received a text from my surgery informing me about the data sharing and a link to the actual opt out form to fill out. - date says 23rd June deadline..
so it seems people may think they opted out via the website but actually not!
I am going to submit the form tomorrow, but I worry about explaining this to people like my mum for eg.
so many people are going to be unaware of this especially the older people who are not online.
Copy of the text:
(On 1st JULY your data will be shared with NHS Digital for NHS research and planning. If you want to opt out please click on the link and complete the form online and email/post a copy to your GP by 23rd June. digital.nhs.uk/data-and-inf... )
There is a scandalous thing or two I noticed in their (exemptions) to still access our data but I won't get into it now,
I just hope people really read all of that ridiculously long page they have put up,
it really is a farce,
I volunteer for the nhs & anyone that has had to complete hours of mandatory training in regards to GDPR, information governance, confidentiality, etc etc, will know this just turns it all into a complete shambles!
I honestly doubt I will be returning to my role when we are given permission to,
I received a text from my surgery informing me about the data sharing and a link to the actual opt out form to fill out. - date says 23rd June deadline..
Thanks for that. I have done the same as you and used the opt out online, but have no idea if I originally opted out at the GPs so will have to do that as well presumably.
Yes I would definitely do the form aswel, I guess at least that way it is signed and it is back up evidence for us in case anything gets that really shouldn't be.
I believe it is truly England-only. However, I do question what will happen to anyone who has ever been registered at a GP surgery in England. I'd like to think that their records followed them but wouldn't be at all surprised to find that they are still on the servers of the GP surgery in England and, even if by accident, could be included.
Also, I believe some people who live very close to borders could be registered "on the other side".
I suggest making no assumptions if there is any question at all as to whether your records will be included.
My GP surgery has always been in Wales, but some services, like my thyroid and arthritis treatments are carried out just across the border in England because there are no hospitals in my part of Wales (the Marches) that cover that. Would I have to opt out at those hospitals?
So many questions that really need a comprehensive answer so an informed decision can be made.
I and my husband down loaded the form , signed it and handed it in to the GP’s surgery , Hope it’s is responded to now there with them ? Is there any further way to ensure ?
Maybe Patient access which we have ?
If clearly written there maybe that’s more reassuring.
lynmynott This has been postponed for 2 months as it was finally realised that patients need more time to understand and respond. I assume the cut off date to opt out will be late August.
Have already done this as was something briefly mentioned on Tv a few days ago, was all very quick and vague...but how can this be right...to have to op out not in! And so little publicity to inform people. Especially as the Irish Healthboard has recently been hacked and is struggling. Weeks in and they are still not up and running again. Nothing is sacred!
There have been posts on social media with false information about opting out of sharing your data with the NHS.
Here’s what you need to know:
There is no 30 September deadline for opting out of sharing your data. You can opt out at any time.
NHS Digital will never sell your data.
There are strict rules about how NHS can use your data. It’s only shared securely and safely.
Shared data helps the NHS. It has been used to find the first treatment for coronavirus and for vaccine research.
For information and to choose if data from your health records is shared for research and planning, please visit the Make Your Choice page on the NHS website.
The deadline for registering your opt-out is June 23rd, 2021.
If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out.
This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with the surgery by 23 June 2021.
The data held in your GP medical records is shared with other healthcare professionals for the purposes of your individual care. It is also shared with other organisations to support health and care planning and research.
If you do not want your personally identifiable patient data to be shared outside of your GP practice for purposes except your own care, you can register an opt-out with your GP practice. This is known as a Type 1 Opt-out.
To register a Type 1 Opt-out, for yourself or for a dependent (if you are the parent or legal guardian of the patient) (to Opt-out) you can download the form here, once completed, please return the form to the surgery before the deadline of June 23rd 2021.
Type 2 Opt-out: Make Your Choice
More information about this matter can be viewed on NHS Digital: General Practice Data for Planning and Research
The data collection won’t include people’s names or where they live. Of course, that’s not the only information that can identify someone. Other details, like NHS numbers, postcodes and dates of birth, which can identify people, will go through a process called pseudonymisation, which means codes will be generated to replace these details. NHS Digital says this means that no one will be able to directly identify you in the data, without also having access to the key that links each patient to their code. However, NHS Digital does make a distinction between pseudonymisation and complete anonymisation, and so although the data will be de-personalised it will not be completely anonymous (you can read more about the distinction here).
But they add a rider to this...
NHS Digital maintains the keys to convert these codes back into data that could identify you, but won’t do that “unless in the circumstances of any specific request it is necessary for it to be provided in an identifiable form”.
NHS Digital says they’ll only do that in certain cases when there is a valid legal reason, for example, if you consent to participate in a clinical trial, or where the data was needed by a health professional to provide you care.
And about selling your data...
Is this data being sold?
This depends on your definition of selling data.
The NHS Digital website says: “We are not going to sell your data”. But there is a price list on the organisation’s website listing charges for its Data Access Request Service.
Well worth reading, but too long to paste into a post here.
I got myself added to their mailing list, and it was well worth it, in my opinion. I've had one email so far and it contains the info in the news link I've given above for the 11th June 2021.
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