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

[dstanman]

So if I complete the form to opt out, hand it into my surgery, how will I know they have acted on it and not just thrown it in the bin. I will not be able to provide any proof I requested the opt-out

 

[Eeyore]

As usual in such cases, paranoia and hysteria are not unknown.

As usual, there are only vague details about what it involves, and I have had no contact concerning it.

So I have just sent my surgery an email opting out. If the ICO haven't properly reviewed it yet that's enough for me.

Thanks to [MENTION=33965]FatSuperman[/MENTION] for highlighting this.

 

[Sheebo]

I'm not trying to scaremonger, and I don't use Facebook etc. I was sent this by by cousin, who is a surgeon and thinks it is a terrible idea to allow access to commercial entities.

My NSC duty is simply saying 'if you are not happy with your medical records being included and potentially shared with third-parties, you might want to opt out'. For those of us that aren't bothered, then we can simply ignore it.

Sorry I wasn’t meaning to dig you out - I just hate it when there’s conflicting reports and I don’t know what to believe!

 

[zefarelly]

I've opted out online, and asked Mrs Zef, She works for someone who will know . . . . I'm all for sharing for research etc, and I'm sure the NHS do this anyway, quite legitimitely and in our interests, I also have no doubt its being exploited through the side door already. It will get worse I'm sure

 

[FatSuperman]

So if I complete the form to opt out, hand it into my surgery, how will I know they have acted on it and not just thrown it in the bin. I will not be able to provide any proof I requested the opt-out

I think you've given this more thought than the people that came up with the process

 

[GM98]

Opted Out

 

[Is it PotG?]

I hope I can get my dimness sorted on the NHS.

Should my previous medical history be sold on to those nasty private healthcare bandits, then any pre-existing conditions will be exempt anyhow.

That'll learn 'em.

 

[DudsFarm]

Its a great idea, more than happy for my data to be used for research by companies like DeepMind solve problems, whats not to like after all I expect Facebook, Google, Amazon already know more about me than the NHS, and if NHS gets cash for it all the better

 

[CheeseRolls]

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.

 

[zefarelly]

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.

Swings several ways Shirley, data pooled medical research for the greater good is great, but profit driven corporations don't work like that.

 

[CheeseRolls]

Swings several ways Shirley, data pooled medical research for the greater good is great, but profit driven corporations don't work like that.

This is a slightly different argument. If you think of this like developing drugs, what we are talking about here is development.

Once you have a working and fully tested solution, there is a commercial discussion around what is a fair price to charge/pay for this treatment. This will be the same as per medicines and it is a really important and controversial step, but I would argue this is a separate but linked activity.

 

[Weststander]

12" or 7"?

 

[beorhthelm]

Swings several ways Shirley, data pooled medical research for the greater good is great, but profit driven corporations don't work like that.

you mean like the same corporations that research and produce the Covid vaccine? or how about every treatment you receive?

the companies using the data dont care about you they are interested in the illness and disease, response to treatments. the pseudonymisation and security processes are very robust, and strictly implemented. usually beyond what is necessary. in some cases they'll want to track a group more closely for research, using processes that already happen.

 

[Kaiser_Soze]

If only it were, from the NHS website

We are not going to sell your data

NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital.

The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We do not allow data to be used solely for commercial purposes.

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public

In practise, none of us know what this actually means. An insurance company could argue they have a legal and legitimate need to use the data for health and care planning. It's such a loose vague decrption, it is very open to being abused.

The very first line is a contradictory. "We don't sell your data" but we do make it available to those who wish to access the data (but only charge them what it costs to deliver it.) The argument isn't about profiteering, its about access.

 

[Super Steve Earle]

Seems odd that the NHS should use NSC to let me know

 

[FatSuperman]

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.

The benefits to the NHS and patient care are not in doubt. The data stored will allow individuals to be identified, and access to both the data and the identities can be provided under certain circumstances.

As far as I'm concerned, there should be an unambiguous 'we will never, under any circumstance, let any third party access data that can identify individuals'. I don't care if they capture my data, or even sell it. But that doesn't mean I trust it to be used responsibly. Not aimed at you, but it's utterly naïve to think that commercial interests won't utterly abuse this in any way they can - money is at stake after all.

There are other people out there with sadder stories than my own. People that have been abused and hurt by others, people that have mental health concerns, or just those that have lost loved ones to diseases - this information does not need to be sold to third-parties so they can conceive products and services, or tailor-made insurance deals. And I say all this as someone responsible for a large tech team, capturing and exploiting a lot of data every year. I know it's value and benefits - but I think there is going to be a data backlash before long.

 

[FatSuperman]

you mean like the same corporations that research and produce the Covid vaccine? or how about every treatment you receive?

the companies using the data dont care about you they are interested in the illness and disease, response to treatments. the pseudonymisation and security processes are very robust, and strictly implemented. usually beyond what is necessary. in some cases they'll want to track a group more closely for research, using processes that already happen.

I agree. But you don't really need GP records for any of that do you. And you certainly don't need to know the individuals.

 

[zefarelly]

I agree. But you don't really need GP records for any of that do you. And you certainly don't need to know the individuals.

Thats the key, removing individual identity before releasing data for research

unless specific permission isa given by people who are effctively volunteer/paid guinea pigs etc

 

[beorhthelm]

In practise, none of us know what this actually means. An insurance company could argue they have a legal and legitimate need to use the data for health and care planning. It's such a loose vague decrption, it is very open to being abused.

The very first line is a contradictory. "We don't sell your data" but we do make it available to those who wish to access the data (but only charge them what it costs to deliver it.) The argument isn't about profiteering, its about access.

it means the medical data isnt going to be available to any tom dick or harry. it'll only be available to proper science, medical and pharmaceutical organisations. some of those will be commercial operations, so saying it wouldnt be available to them would be a lie. it would be available for the research phases. medical insurance companies know all they need to know, when you give them your history and consent for them to access your records.
the first line is not so contradictory when you understand the process of delivery, the client may not see the data directly but have reports and analytics generated for them about certain investigations. in other cases the client may access the data through a segregated system, so they can only manipulate and process the data. the data stays with the data owner (NHS), they dont send a file of raw data out.

 

[beorhthelm]

I agree. But you don't really need GP records for any of that do you. And you certainly don't need to know the individuals.

we dont most of the time, thats why data is pseudonymised. it can be reversed, via a third party with controls, for appropriate uses. GP records provides a very rich history of conditions, with treatments and comorbidities over time, valuable to good research.