[News] NHS records to be sold to third-parties

[jonnyrovers]

It appears you have some very good information on this, so I'd appreciate a few tips as to the private companies that are experts in this kind of data analysis (purely from an investment point of view).

Obviously, I've opted out but any tips would be great, because I wouldn't want to be a misinformed numpty

Cambridge Analytica

 

[jonnyrovers]

Misinformed numpties such as the Royal College of General Practictoners, you mean?

https://www.rcgp.org.uk/about-us/news/2021/june/college-writes-to-health-secretary-calling-for-immediate-delay-to-patient-data-proposals.aspx

The Royal College of GPs is supportive of the initiative but is unhappy that the DHSS has not yet adequately briefed the public.

 

[GT49er]

The NHS website makes it clear that NHS Digital will never sell the data. I think that you and they should read the website quite carefully before trying to scare people. When I first opened this and the other thread I was concerned and sent off an e mail to my GP surgery asking for more information. I now feel like an idiot because I was misled by tin hat wearing conspiracy theorists who see Government corruption everywhere. Won’t happen again.

Maybe, maybe not - but we have the option to prevent our historical (and future) health information being passed from the GP to NHS Digital - that's what the link on the FT article leads to.

That's why that opt out form goes to your GP rather than to the NHS generally.

 

[beorhthelm]

Maybe, maybe not - but we have the option to prevent our historical (and future) health information being passed from the GP to NHS Digital - that's what the link on the FT article leads to.

That's why that opt out form goes [I[to your GP[/I] rather than to the NHS generally.

i'd wager until this you didnt even know GP data wasnt already shared within the NHS.

 

[GT49er]

i'd wager until this you didnt even know GP data wasnt already shared within the NHS.

TBH I hadn't really thought about it. I assumed my hospital consultant would have access to some records, but how much I've no idea. I do know that whenever I've had dealings with one department/consultant/GP/practice nurse or another, they usually have no idea as to what any other department/consultant/GP/practice nurse has done.

 

[PeterOut]

The NHS website makes it clear that NHS Digital will never sell the data. I think that you and they should read the website quite carefully before trying to scare people. When I first opened this and the other thread I was concerned and sent off an e mail to my GP surgery asking for more information. I now feel like an idiot because I was misled by tin hat wearing conspiracy theorists who see Government corruption everywhere. Won’t happen again.

In order -
1. My reading of the NHS statement is that they will provide the data to anyone who asks who can meet certain criteria. The criteria is not explaned or listed on their website. They will charge the organisation who asks for the data, but that charge will only cover the costs of providing the data - they will not seek to make a profit from the selling.

2. I have read the website quite carefully (I have no idea who the 'they' are that you are referring to is/are) - can you show me where I am trying to / have tried to scare people. I take serious offence at that remark.

I have no idea how you leap from how I posted a simple response to your earlier comments, showing that the Royal College of GPs have concerns, to such an unecessary attack and associating my comments with 'tin hat wearing conspracy theorists who see Government corruption everywhere'.

Your response to a view that differs from your seems quite extreme - are you feeling OK?

 

[Notters]

So what was the point of GDPR, where data sharing is by opt-in not opt-out and this seems to breach that basic rule could be a field day for the lawyers/ambulance chasers.

Also I would be too worried they cant find my data when they need access to it for legit reasons so how the hell will they find it to share, maybe financial incentive.

GDPR applies to EU citizens.

 

[Cheshire Cat]

I opted in.

Does that make me a Remainer?

 

[Igzilla]

Our politicians and press are largely technically illiterate. There is very little chance that we will have a grown up debate about the ethics and potential benefits of applying machine learning and artificial intelligence to medical records.

This is the real prize here and it has the potential to benefit so many people. Once you understand the basic principles, it really isn't that scary and ironically it relies on the data being anonymised in order to ensure that there is no unintentional bias introduced.

This use of our anonymous data is a great thing and well overdue.

Don't believe the fake news.

You would be amazed how backwards the NHS is in its data analysis. Paper records are still being used because many hospital trusts use different IT systems. Many are still heavily reliant on fax machines.

This data is a goldmine of information that has the potential to save lives. Unfortunately the NHS doesn't have the money, capacity or expertise to make use of it. That is why it is important for private companies, experts in this kind of data analysis to step in. The only problem with this shift is it's about 20 years too late.

Having worked alongside ML now in my day job for the past 2 years, I can safely say that is is ****ing shit and comes up with the most awful howlers that constantly need manual, human intervention to dig down into the data, work out what "unknown variable" has sent the ML output to StupidLand, so the data analysts, ignorant of the complex, human driven processes that underpin the products I (used to) forecast, and "build that into their model". Yeah, right. I sit back and wait for the next **** up.

 

[Neville's Breakfast]

In order -
1. My reading of the NHS statement is that they will provide the data to anyone who asks who can meet certain criteria. The criteria is not explaned or listed on their website. They will charge the organisation who asks for the data, but that charge will only cover the costs of providing the data - they will not seek to make a profit from the selling.

2. I have read the website quite carefully (I have no idea who the 'they' are that you are referring to is/are) - can you show me where I am trying to / have tried to scare people. I take serious offence at that remark.

I have no idea how you leap from how I posted a simple response to your earlier comments, showing that the Royal College of GPs have concerns, to such an unecessary attack and associating my comments with 'tin hat wearing conspracy theorists who see Government corruption everywhere'.

Your response to a view that differs from your seems quite extreme - are you feeling OK?

Sorry. My response wasn’t meant as an attack but I can understand why you might take it that way. The ‘they’ I referred to was the GP representative body and the group of London GPs referred to in the Guardian article. I suppose I was a bit irritated by initially being misled as to the nature of this story. Anyway, sorry again.

 

[Sid in the Sharknado]

Removed

 

[PeterOut]

Sorry. My response wasn’t meant as an attack but I can understand why you might take it that way. The ‘they’ I referred to was the GP representative body and the group of London GPs referred to in the Guardian article. I suppose I was a bit irritated by initially being misled as to the nature of this story. Anyway, sorry again.

Apology accepted - I am happy to move on

 

[johanngull]

https://fullfact.org/health/nhs-data/


HEALTH
What’s happening with your NHS data?
4 JUNE 2021

We’ve been asked by readers about a forthcoming change in the way the NHS in England shares patient data, the various opt-outs available to the public and whether the data is really being sold.

What is changing?

From July 2021, NHS Digital will start collecting patient data from GP medical records in England about any living patient, including children, and any data about patients who died after the collection started.

This is called the General Practice Data for Planning and Research data collection, and NHS Digital says it will be used to help the NHS improve health and care services by allowing it to plan better, prevent the spread of infectious diseases, help with research and monitor the long-term safety and effectiveness of care.

NHS Digital is the NHS provider for data and IT systems for the NHS in England.

What will be collected?

NHS Digital will collect information on diagnoses, symptoms, test results, medications, information about physical, mental and sexual health, a person’s sex, ethnicity, sexual orientation and which staff have treated them.

This will include most of the historic data from each patient’s record.

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).

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

Opting out

There are two ways of “opting out”, if you don’t want your data to be shared in the ways described.

Type 1 opt-out
This prevents your data being shared outside your GP practice for anything other than individual care for patients.

People have asked us about this opt-out recently, because there is a deadline on 23 June 2021 if you want to use it to stop your GP data being shared with NHS Digital.

To use this opt-out so that your GP data isn’t shared, you need to print, fill in and return this document to your GP practice by 23 June. The campaigning group MedConfidential has more information on how to do so if you don’t have access to a printer.

You can also use a type 1 opt-out at any time after this date, and no further GP data will be shared, but any data shared up to that point will still be held by NHS Digital.

National Data Opt-out
This opt-out stops NHS Digital from sharing any confidential identifiable information (not just GP data) for reasons other than your individual care. Essentially, this stops your data being shared with other organisations, except in the cases where it’s a legal requirement or there’s a public interest argument, for example in managing coronavirus.

There is no deadline for this type of opt-out.

The national data opt-out used to be called a type 2 opt-out, and people who previously secured a type 2 opt-out should have had that converted to a national opt-out. As of 1 May 2021, there were just under 1.7 million national data opt-outs.

To use the national opt-out or check your status, you can go to this NHS website. To read about opting-out by phone, for your child (if they are under 13), or for someone else, you can visit this page.

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.

On this page, NHS Digital says “We do not charge for data but we do apply charges to cover the cost of processing and delivering our service.”

Any organisations that want to pay to access this data need to convince the NHS Digital Data Access Request Service that they have a legal basis to use the data and will do so safely, securely and appropriately. Requests are also subject to scrutiny by the Independent Group Advising on the Release of Data.

NHS Digital publishes information on what data it releases and to whom every month. Many recipients are organisations like the Office for National Statistics, local authorities, government departments like the Department of Health and Social Care and research organisations like universities and charities, but they can also include companies that get approved.

NHS Digital says: “Any data that NHS Digital collects will only be used for health and care purposes. It is never shared with marketing or insurance companies.”

 

[FatSuperman]

End of thread. Everything you need in order to stop panicking is right here in this post. From start to finish this entire thread has consisted of hot air blown about by misinformed numpties incapable of finding and appraising accurate information. Is it any wonder we end up voting for incompetent governments and silly nationalist ideas when we react like this?

You and several others are also being misinformed numpties but simply ASSUMING the government would only ever do the right thing for the people. They aren’t you and I mate. They are dodgy as ****.

Half the links people are sharing are not directly relevant to this new initiative. ‘New’ but they’ve been quietly working on it for three years, only to very quietly announce the plan with some very confusing information, during a pandemic. Condemned by industry bodies and GPs. But yeah, feel free to blindly shout about conspiracy theories.

https://amp.theguardian.com/comment...-data-grab-pandemic?__twitter_impression=true

Even better now we hear Dido Harding, chief of appalling test and trace programmes, is the potential next head of the NHS.

 

[FatSuperman]

https://fullfact.org/health/nhs-data/

Brilliant, thank you Johann Gull!

Assuming this summary is the most accurate, the data can be de-anonymised if the reasons are good enough. It sounds like the only reasons good enough would be legit, but everyone has to take their own view on how much they trust that position (or in my case, how much you care either way)

Peace

 

[DJ NOBO]

Apology accepted - I am happy to move on

Eh? This is NSC.
Finish him.

 

[jonnyrovers]

You and several others are also being misinformed numpties but simply ASSUMING the government would only ever do the right thing for the people. They aren’t you and I mate. They are dodgy as ****.

Half the links people are sharing are not directly relevant to this new initiative. ‘New’ but they’ve been quietly working on it for three years, only to very quietly announce the plan with some very confusing information, during a pandemic. Condemned by industry bodies and GPs. But yeah, feel free to blindly shout about conspiracy theories.

https://amp.theguardian.com/comment...-data-grab-pandemic?__twitter_impression=true

Even better now we hear Dido Harding, chief of appalling test and trace programmes, is the potential next head of the NHS.

GP's support it. Their only criticism is the lack of public engagement.

Choices to opt in or out should be 'informed choices' made only once all relevant information has been considered. Your post waded straight in with a lie about information being sold, and offered no balance in view whatsoever, rather inviting the scared and the scaremongers to make hay.

I'm long enough in the tooth to know when and when not to trust politicians. Thing is this is not a politically motivated project. It is motivated by the clinicians and civil servants in charge of the NHS, keen to move us forward with integrated systems and the ability to access metadata about trends and patterns in health profiles and health outcomes. We will all benefit from this project.

Without looking it up, can you tell me who the current CEO of the NHS is, and what is your view of him? Why on earth would Dido Harding be putting his tenure at risk? Maybe look beyond the daily news for your information.

Keep up the good work. Or maybe don't.

 

[FatSuperman]

GP's support it. Their only criticism is the lack of public engagement.

Choices to opt in or out should be 'informed choices' made only once all relevant information has been considered. Your post waded straight in with a lie about information being sold, and offered no balance in view whatsoever, rather inviting the scared and the scaremongers to make hay

You'd make a good politician yourself Jonny

"It's not being sold, who told you that nonsense!!? We are not SELLING this data. We are merely charging people to access it. Entirely different"

Christ, Jonny. Money will be exchanged so that third-parties can use the information. The fact that it is being labelled as 'paid access' instead of 'selling data', the outcome is exactly the same. There are many ways of going about getting public support for this initiative, and the way it's being done is absolutely the wrong approach.

 

[jonnyrovers]

You'd make a good politician yourself Jonny

"It's not being sold, who told you that nonsense!!? We are not SELLING this data. We are merely charging people to access it. Entirely different"

Christ, Jonny. Money will be exchanged so that third-parties can use the information. The fact that it is being labelled as 'paid access' instead of 'selling data', the outcome is exactly the same. There are many ways of going about getting public support for this initiative, and the way it's being done is absolutely the wrong approach.

I work for an independent sector healthcare (trading) charity that works very closely with the NHS. In order to operate we need access to the clinical information systems and patient information systems that NHS Trusts use. NHS England and the trusts charge us a nominal fee for registrations and access to these data systems. These transactions have been happening for decades. These relationships have existed for decades. There really is nothing to see here.

If you are looking for dirt on this government just go for the low hanging fruit mate. They lie and lie and lie and lie and no-one seems to care. Push that envelope.

 

[PeterOut]

I work for an independent sector healthcare (trading) charity that works very closely with the NHS. In order to operate we need access to the clinical information systems and patient information systems that NHS Trusts use. NHS England and the trusts charge us a nominal fee for registrations and access to these data systems. These transactions have been happening for decades. These relationships have existed for decades. There really is nothing to see here.

If you are looking for dirt on this government just go for the low hanging fruit mate. They lie and lie and lie and lie and no-one seems to care. Push that envelope.

I really think that this is part of the problem.
Of course the NHS has (and has had for a long time) partnerships with 'private' commercial providers, charities, other services such as Social Services etc who have a valid and necessary reason to access patient records, in order to provide care. The Horder Centre in Crowborough is just one of many many examples, the MRI Cenntre at Princess Royal Hospital is another, there are many more examples in Sussex and up and down the country.

However, if I have correctly disentangled the rather anodyne statements on the NHSI website (note the 'I' at the end), this latest initiative is not about sharing my or your medical record so that a partner agency can provide care.

It seems to be a constant uploadfing of data from every GP surgery to a single central database, that others can access. The issue is with the vague definition of 'other', and the uses that the data can be put to, and the ease with which that data can be 'de-anonymised'.

This is a separate issue to the entirely proper sharing of patient data in order to carry out an operation, assist recovery etc that you seem to be referring to.

I think - as I say, the lack of transparency is what is causing the confusion, in my view.