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GP Data Collection: How to Opt Out

(35 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/

TopsyIrene06 Wed 09-Jun-21 09:09:56

Chapeau I have written to my MSP to ascertain our position regarding the NHS GP data grab in Scotland. They are going to let me know when they are sure of the details that might affect us. I have looked very thoroughly and as far as I can see we are not included but as I don't trust the Westminster government I would like to hear from Scottish MPs exactly what the position is. Good though that it has been delayed until September so we are given more information. Fingers crossed.

ayse Wed 09-Jun-21 08:58:33

Blinko

As a lay person, I've looked at just a couple of the links in this thread I'm fairly horrified at the way in which our so-called confidential information seems to be routinely shared with any organization that asks, without any individual being asked for their permission.

It looks as though NHS Digital will simply lead us further down the rabbit hole of total disclosure to all and sundry.

I agree wholeheartedly. It’s the secrecy surrounding the whole issue. The public should have been informed so they can give informed consent to the use of our data by private companies.

I’ll bet the money made out of selling this data won’t be going back into the NHS.

Blinko Wed 09-Jun-21 08:51:04

As a lay person, I've looked at just a couple of the links in this thread I'm fairly horrified at the way in which our so-called confidential information seems to be routinely shared with any organization that asks, without any individual being asked for their permission.

It looks as though NHS Digital will simply lead us further down the rabbit hole of total disclosure to all and sundry.

ayse Wed 09-Jun-21 08:26:38

For anyone who is concerned that if they opt out their data will not be available for NHS treatment.

This is not true. The opt out form makes it quite clear that your data can be shared with other NHS professionals if you need treatment. It just opts out from the gathering of data for this new database.

Discussion on LBC yesterday. One contributor said that large pharmaceutical companies and other commercial giants have already been in talks with the government. The data is worth huge amounts but I can’t remember the figure quoted. I’m just reporting what I heard not stating this as a fact.

Notinthemanual Tue 08-Jun-21 15:12:26

Thank you Annodomini for posting this.

B9exchange Tue 08-Jun-21 14:09:16

Yes, they caved in, after a huge effort from MedConfidential, huge thanks to Phil Booth, and pressure from the BMA and RCGP. Exactly as happened with Care.data when they tried in 2014 without proper consultation.

chelseababy Tue 08-Jun-21 13:47:51

It's been delayed to September now

lemsip Tue 08-Jun-21 09:07:01

digital.nhs.uk/services/national-data-opt-out

B9exchange Mon 07-Jun-21 12:00:30

Don't worry Chapeau it doesn't include Scotland. Your data is already shared, but you might be able to trust your Government more not to sell access to it?

youtu.be/QqZXH0CJYcM might help explain things for my English colleagues ?

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.

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.

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

No, it isn't.

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 20:19:48

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)

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 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.

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.

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

Sorry Grany missed your comment thank you

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 ?

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

Healthwise at least I have nothing to hide...

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/

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.

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.

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????

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.