Gransnet forums

Health

GP Data Collection: How to Opt Out

(34 Posts)
annodomini Sat 05-Jun-21 00:05:21

The measure to collect data about NHS patients has been kept very quiet. You might have heard from your GP that they have been ordered to had over your records to NHS Digital so that they can be made available to third parties for commercial gain. I have strong objections to this and have opted out. Here is some information for you:

"From 1 July 2021, and every day thereafter, the Government has Directed NHS Digital to take from your and your family’s GP records:

^data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health” (more details)
“data on sex, ethnicity and sexual orientation”
“data about staff who have treated patients”
You can opt out if you wish.^

Here is how to opt out if you don't want your health details to be sold for profit to pharmaceutical companies or research organisations.

medconfidential.org/

Ro60 Sat 05-Jun-21 00:19:44

I've already got my daughter to print the form off for me.

I'm also concerned with what the data could / will be used for in the future.

As they look to privatise the NHS who knows what will be allowed or not - insurance, treatment, work, social benefits, mortgage risk assessments?

jusnoneed Sat 05-Jun-21 08:37:30

You can also opt out online via NHS website.

Shelflife Sun 06-Jun-21 00:43:37

I am worried about this ! Can't decide if I should opt out and time is running out! This has been kept under wraps , many people are unaware of what is going to happen on July 1st. Advise please ! I read that individuals can not be identified , is that untrue?

allium Sun 06-Jun-21 01:22:07

I've opted out, don't trust them!

boat Sun 06-Jun-21 02:51:36

I've opted out.

I looked at the website and thought it had been very carefully worded.. It denied that there was any intention to share data with third parties but left out the words, "At the moment".

I would prefer to live in a country where I could happily allow my data to be used for research without the risk of the government selling it on at a bargain price to whichever friend/donor is next in line for payback but sadly I don't.

Also I am aware that, on this government's whim, I could lose my right to protect my data. It seems that that is a step too far even for them as things stand so they have resorted to going ahead with setting up the data base without actually making it obvious to the public.

ayse Sun 06-Jun-21 07:58:58

medconfidential.org/wp-content/uploads/2021/05/Type_1_opt-out_letter.pdf

A link to the letter you need to take to your GP.

inews.co.uk/opinion/nhs-data-shared-third-parties-weeks-opt-out-gps-worried-1028042

A link to an article in Inews

I’ll be doing this letter tomorrow

ayse Sun 06-Jun-21 08:03:18

Shelflife

I am worried about this ! Can't decide if I should opt out and time is running out! This has been kept under wraps , many people are unaware of what is going to happen on July 1st. Advise please ! I read that individuals can not be identified , is that untrue?

The letter has to be with your GP by 23rd June.

All records with have a code. Access to the code will allow you to be identified.

If it’s not ‘a big deal’, why has it been kept virtually secret with no information on the BBC or mainstream media? I’m very suspicious of this lack of information.

A conspiracy of silence?

MaggieTulliver Sun 06-Jun-21 08:11:47

Why would anyone opt out? All the data is anonymised. Sharing this data will help in providing improved healthcare in the future and might even help the cash-strapped NHS too (perish the thought). I think it’s selfish and petty to opt out and wonder why people don’t have more important things to concern themselves about.

MaggieTulliver Sun 06-Jun-21 08:13:04

Ayse, you don’t know what you’re talking about. I work in the NHS and there’s no way people can be identified.

ayse Sun 06-Jun-21 09:13:21

I read everything very carefully. Everything can be coded and then reversed, if you have the correct authorisations. No data is 100% safe online.

In any case, it’s MY information and I wish to decide who, apart from my doctors, NHS my data is shared with, especially if financial gain is part of the package.

I object to your very rude comment “YOU DONT KNOW WHAT YOU ARE TALKING ABOUT”. I wouldn’t dream of speaking in those terms to anyone. How about you find some good manners and do some research?

BTW, I am part of the BIOBANK research, of my own accord. MY CHOICE😡😡😡😡

ayse Sun 06-Jun-21 09:15:45

I apologise to all for shouting. I wish folk on here would stop being so unpleasant when they don’t agree with a particular point of view. It makes the whole experience of contributing very unpleasant.

BigBertha1 Sun 06-Jun-21 10:22:58

What MaggieTulliver said. We have been 'reporting' in every day and every week to two research studies re Covid. Its the gathering of this information that is helping us all.

Grany Sun 06-Jun-21 16:05:50

@jeremycorbyn
Open Democracy is issuing a legal challenge to halt the government's plans to seize the GP data of everyone in England without proper consent.

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

Lucca Sun 06-Jun-21 16:10:32

Healthwise at least I have nothing to hide...

SusieB50 Sun 06-Jun-21 16:28:21

If it means that when I collapse in the high street and an ambulance picks me up unconscious and takes me to
A +E , my GP medical records will be readily available , unlike now, where they are unable to access the records , it must be better . But if they are going to be used for commercial use without consent then no . Many people will have information on their records that they would wish to remain private. I’m surprised that this has been kept so quiet (or maybe I’m not!) Has this gone through any legal / government discussions? Have I missed it ?

SusieB50 Sun 06-Jun-21 16:30:27

Sorry Grany missed your comment thank you

Lin52 Sun 06-Jun-21 16:50:29

jusnoneed

You can also opt out online via NHS website.

I have just done that, very easy to do.

B9exchange Sun 06-Jun-21 17:36:26

There have been some misunderstandings in some of the posts above.

This will not affect your care in any way. Data collected for the purposes of looking after you is called primary use. The GP data grab is only about the secondary use of data, not connected with your care, it is for research and other purposes. All diagnoses and most parts of your medical record are given an appropriate SNOMED code. All these codes will be extracted, along with your name, dob, ethnicity, and first half of your postcode. Make no mistake, this is identifiable data. It will be stored in one vast NHS database held by NHS Digital, who will sell access to any organisation that asks, provided they agree the reason the organisation puts forward. The information released by NHS Digital will be in anonymised form, or pseudonymised, which is at risk of re-identification if you pay extra to link two databases. For example if you have a rare disease and part of your postcode is known, it is not that hard to find you. You might want to hide from an abusive partner, or you might have uncertain immigration status and not want the Home Office or Social Services to locate you ​through your medical records.
​ No Goverment will be able to resist giving access to the enforcement agencies. .Don't.confuse The GP extractionnandd aNationalData Opt Oypeneois the one we are talking about, the extraction of all your GP records. You cannot opt out online please understand this. The only way is to tell your GP surgery, and the easiest way to do this is with the form here. medconfidential.org/wp-content/uploads/2021/05/Type_1_opt-out_letter.pdf

Type 2, now known as the National Data Opt Out, is the one you can use to opt out of having your hospital data used for research and other purposes. This too is stored in an NHS Digital database, and you cannot stop them collecting it, only the use that is made of it. The two databases will be linked. You can opt out of giving access to your hospital data on line, and can check your status in the NHS app. But you cannot do this for Type 1 opt outs, that has to be direct contact with your GP surgery.

I am very relieved that this is finally getting into the mainstream media, when I posted the first thread on this, some thought it was a conspiracy theory! 😃

If you want to see where your data might end up, there is a list here of who has your hospital data already.
www.theysolditanyway.com/

A legal challenge has been mounted to give more time for an information campaign, but so far Matt Hancock is resisting. The British Medical Association and the Royal College of GPs have written a letter of protest to NHS Digital.

If you can make your friends and family aware that they do have a choice if they act now, we would all be grateful.

B9exchange Sun 06-Jun-21 18:02:00

In October 2019, NHS England bosses met with tech and pharmaceutical giants to discuss price list of millions of Brits' medical data
Full details here www.theregister.com/2019/12/12/nhs_england_database/

B9exchange Sun 06-Jun-21 20:19:48

I am not sure if this will help, but this picture displays the different types of opt out, both for primary us (your care) and secondary use (for others to view)

BeverleyJB Sun 06-Jun-21 20:31:38

MaggieTulliver

Ayse, you don’t know what you’re talking about. I work in the NHS and there’s no way people can be identified.

It's not Ayse who doesn't know what she's talking about.

The data that is subject to the opt out is NOT anonymised data at all.

B9exchange Sun 06-Jun-21 20:40:34

No, it isn't.

Greeneyedgirl Sun 06-Jun-21 20:48:31

I have opted out, and as usual this is being managed in an opaque way, so that many do no have a clue what the implications are. I used to work for the NHS and have serious reservations about it.

Chapeau Sun 06-Jun-21 23:36:11

Does anyone know if this data-harvesting includes Scotland? I had a look at the link provided by annodomini and the NHS site but they seem to apply to England.