GPs warn over plans to share patient data with third parties in England

[helvella]

I wasn't going to post this as it could be thought political - at one level or another - but the short time available to exercise your right to decide made me choose to post rather than not.

You have until 23rd June 2021.

GPs warn over plans to share patient data with third parties in England

Doctors say NHS Digital’s proposals could erode the relationship between them and their patients

Doctors have warned that plans to pool medical records on to a database and share them with third parties could erode the relationship between them and patients.

The warning came as the Royal College of GPs wrote to NHS Digital urging it to better communicate with the public about the plans and their options for opting out.

Critics have voiced concerns over the NHS Digital plans, which would put the medical histories of more than 55 million patients into a database available to academic and commercial third parties for research and planning purposes.

Privacy campaigners have already spoken out against the proposals, which include sharing anonymised mental and sexual health data, criminal records, and more sensitive information. The records would be scraped from every patient in England registered to a GP clinic by NHS Digital, which runs the country’s healthcare IT systems.

theguardian.com/society/202...

Link to form which can be used to opt in or opt out:

This link allows online registration of your choice:

nhs.uk/your-nhs-data-matter...

This link allows download of PDF to register your choice. The PDF can be emailed or printed then posted:

nhs.uk/your-nhs-data-matter...

Please keep comments away from at least party political discussion.

[Updated links to register your choice.]

[JGBH]

Thank you for the information and sharing the links. It’s most important we make our preferences known.

[humanbean]

Medconfidential is a website everyone needs to know about in relation to this subject.

The website has a lot of info on how to keep your data private and prevent this latest data grab from stealing your data.

medconfidential.org/2021/le...

I hadn't realised the last data grab ( care.data ) was so long ago - 2014.

What worries me is how this will affect children. I read about some parents opting themselves out of care.data but not their children. And I couldn't understand the logic of that decision at all. Children grow up to be adults too! And they can make their own decisions later in life. But not if their data has been stolen already! Once it has gone you can't claw it back!

[jsy_girl in reply to humanbean]

Thanks v useful

[helvella Administrator]

You are right that you can choose to opt in using the form. But, as I understand, there is no obvious reason to opt-in as that is the default if you take no action at all.

Nonetheless, I shall reword my post to cover that.

[humanbean]

If you read my reply below you can get much more data from Medconfidential on how to do this opting out.

[bantam12]

I personally think the relationship between Drs and patients is already pretty much eroded, can't see how this can make it any worse 🙄

[LindaC in reply to bantam12]

All time low, for me + others I know - dreadful, in fact. 🖤

[jsy_girl]

Thanks for sharing. I think this is outrageous. Have shared into the Lib Dem forums I’m in. Not sure why they arn’t making more of a fuss about it

[helvella Administrator]

And mental health.

[RedApple Administrator]

I'm confused!

'plans to share patient data with third parties in England' seems to suggest the sharing is just in England, but is the data coming from the whole of the UK?

humanbean

[helvella Administrator in reply to RedApple]

I have emailed medconfidential to ask them for confirmation - as I have greater expectation of a timely response from them than NHS Digital.

However, I have also contacted NHS Digital. It sort-of looks to be England-only but I want confirmation.

[helvella Administrator in reply to helvella]

medconfidential say misalignment of numbers doesn't matter as process is manual. And confirms it is England-only.

Wow! That was some speedy reply.

[RedApple Administrator in reply to helvella]

Just to confirm, only those in England will have their data shared unless they opt out?

[helvella Administrator in reply to RedApple]

That is what they said!

I do have some concern that old data might remain in one nation, or even one GP surgery, even when the individual moves nation or just GP surgery.

But that is a slightly lesser issue than "everyone everywhere".

[RedApple Administrator]

Yes, thanks for the link which says:

“data may be shared from the GP medical records about… any living patient registered at a GP practice in England when the collection started”.

[helvella Administrator]

A little bit more - a whole editorial:

The Guardian view on medical records: NHS data grab needs explaining

Editorial

In England, ministers’ plans to suck up GP records need to be scrapped and restarted with a proper debate about their use and privacy implications

theguardian.com/commentisfr...

[helvella Administrator]

Anonymisation can be ineffective. Especially if you have multiple sources of data about the population involved.

[jsy_girl]

Thanks for posting the link - is that all I have to do, as it was blinking easy for something that I fundamentally disagree with. I have a text confirmation?

Thanks!

[helvella Administrator in reply to jsy_girl]

Yep - it would appear it really is that simple.

I too have done it.

[jsy_girl in reply to helvella]

Wonderful. You’re an absolute star ⭐️

[jsy_girl in reply to helvella]

I’ve just read this at the start of that NHS digital online opt out form:

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.

So what is the truth?!!! I do trust the guardian to have fact checked it...

[helvella Administrator in reply to jsy_girl]

But if your data has been shared, there ain't no way back!

Shared data within the NHS is one thing. Sharing data outside, quite possibly abroad, is another.

[jsy_girl in reply to helvella]

I may be misunderstanding but there seems to be a few different things. The link takes you to the National Data Opt out. I think this is where once data is already with NHS digital you can say “no I don’t want you sharing it on or using it for research or planning” but the one we want, which has a deadline of 23 June is the “type one opt out”. And this is about your data held at your GP not being shared to NHS digital in the first place. This collection starts 1 July. You can ONLY opt out from this by notifying your GP directly with a form. The NHS have a form but then you must post or email that to your GP.

[Rapunzel]

How many times have we read of government wonks who have left data on trains / thrown away in public rubbish bins/ 'accidentally' disclosed...

From a disgusted of Tunbridge Wells perspective: You don't help me with my thyroid issues, I won't help you with your data grab. How's that for you? Because it's good for me

[jsy_girl in reply to Rapunzel]

You tell ‘em

[Pink_Bear]

Really glad you posted this, I've been concerned about it since I discovered it a couple of weeks ago, but didn't think to list it here. My main worry is not so much about my private data, more that it seems pretty clear to me that the US health companies will want as much data as they can get to draw up their pricing models as the inevitable sell off of parts of the NHS draws closer and closer. I know there are faults and problems with the NHS, but I don’t want to be part of its privatisation by stealth. I've written to my MP about it, no reply as yet.

[Marz]

medconfidential.org/how-to-... This is the link I used ...

[Batty1]

Does this mean a 3rd party would not only have access to your health issues and treatment but also your phone numbers, address and personal identification numbers? The whole world is going bonkers!

[helvella Administrator in reply to Batty1]

No - they would not have phone, address, etc., but there have been several cases where there has been identification of people when it was not intended.

[Batty1 in reply to helvella]

Awful. What exactly is the purpose to allow a 3rd party access to health records?

[Laine]

Thank You for your time and effort. Greatly appreciated.