Patient records to be made available to the private sector and other researchers

[Buelligan]

The opting out issue affects more than just the individual making that decision.  What happens if someone doesn't opt out?  Maybe they don't know they can, maybe they can't see the harm or can't be arsed.  So their records go in.

What happens to the next generation of people, people whose parents didn't opt out for *reasons*?  Maybe some of those parents went on to die of heritable diseases.  How would that information affect the futures of all those generations that will descend from them?  Bit like the DNA thing, you're not just letting The Man have yours, you're giving the state access to the privacy of everyone related to you now and from henceforth, forever. 

[TrenterPercenter]

I sort of understand your argument, however the only tool at our disposal right now is to opt-out.

Personally, I've worked in the NHS on IT projects. I know a lot of good work is going on with pop health etc. I don't mind my data being used by the NHS (or companies contracted by the NHS) to help deliver better patient care. I don't want it sold to third parties full stop.

People able to buy this expensive asset aren't likely going to use it for altruistic reasons. They will want a return on their investment, which means working out ways to monetise it.

I also don't believe many people know about this, the opt-out deadline etc. I only became aware of it again as a few Doctors I follow on Twitter posted messages about it.

What do you mean opt-out deadline?

[Zetetic]

If these scenarios are realistic in any way, why not attack those goals inhouse, why not have people working in the NHS to do those things?

Quite.

Although a starting point for that would be to ensure that NHSs have this data, rather than leaving it in the hands of private contractors (who are already handing it over to third parties).

[Zetetic]

I don't mind my data being used by the NHS (or companies contracted by the NHS) to help deliver better patient care.

Why would the NHSs need to contract other companies to do essential day-to-day work?

That seems a terrible idea.

[TrenterPercenter]

Why would the NHSs need to contract other companies to do essential day-to-day work?

That seems a terrible idea.

A) what is deemed essential day-to-day work and who gets to decide this?
B) All patient care is not delivered by the NHS and hasn't been for a long time (from it's conception in fact)

Maybe I'm not understanding you here what do you mean by patient care and essential day to day work; if dentists can improve patient experience and improve detection rates for cancers etc.. then is that not essential day-to-day care?

[Sebastian Cobb]

I don't mind my data being used by the NHS (or companies contracted by the NHS) to help deliver better patient care. I don't want it sold to third parties full stop.

You might want to add some caveats to that one:

I got an NHS referral to a private hospital at which I was asked to sign a page of tiny print. Included was a statement that if the government was late paying for my treatment, I would pay; and that the hospital's owner (BMI) could use my medical notes for any purpose it liked.

https://twitter.com/Captain_Janegay/status/1397298883429117953

[Zetetic]

A) what is deemed essential day-to-day work and who gets to decide this?

It would include analysis to support improving the delivery of services, the identification of individuals at risk, the identification of inefficient (in the broadest possible sense) interventions and so on.

B) All patient care is not delivered by the NHS and hasn't been for a long time (from it's conception in fact)

This is also a problem that needs to be resolved.

what do you mean by patient care

I didn't mention "patient care" - the essential day-to-day work of the NHSs clearly extends far beyond this, to include - for example - updating signage, running hospital cafes, and the use of information to improve of their own services.

[olliebean]

That isn't how ethics boards work and no they would not have said nobody needs to be informed.  I'll bet did say everybody needs to be informed about this which is why you are hearing about it; how that is framed all depends on the kinds of places you get your information from and how you react to it depends on how willing you are be critically minded about all of information you access.

You apply for ethical consideration; you state your methods based on what is ethical and legal and how you are upholding these ethical standards and protecting your data subjects.  An ethics board checks that this is in order and make recommendations.  One of those recommendations would for the option to opt out being publicised as much as feasibly possible and seta ask the risk of the data being harmful to the individual.

"As much as feasibly possible?" Are you seriously suggesting this was done? AFAIK, it was posted on a twitter account that most people won't be following, with details on a website that nobody has any reason to look at unless they already know about it. I've not seen anything about it in the mainstream media. The only reason anyone knows about it is, as I said, because 3rd parties have taken it upon themselves to disseminate the information. TBH, I'd be willing to bet most people still don't know about it, as most people don't follow the people and organisations that have posted about it. Neither the Government nor NHS Digital did anything like publicising it "as much as feasibly possible."

[TrenterPercenter]

It would include analysis to support improving the delivery of services, the identification of individuals at risk, the identification of inefficient (in the broadest possible sense) interventions and so on.

Yes but we are in a situation now where patient care is delivered by other organisations and goes far beyond the inpatient and the very minimal community care that the NHS provides; other organisations are obviously involved in patient care, support and treatment. 

[Sebastian Cobb]

"As much as feasibly possible?" Are you seriously suggesting this was done? AFAIK, it was posted on a twitter account that most people won't be following, with details on a website that nobody has any reason to look at unless they already know about it. I've not seen anything about it in the mainstream media. The only reason anyone knows about it is, as I said, because 3rd parties have taken it upon themselves to disseminate the information. TBH, I'd be willing to bet most people still don't know about it, as most people don't follow the people and organisations that have posted about it. Neither the Government nor NHS Digital did anything like publicising it "as much as feasibly possible."

Trenter personally made sure the plans were on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying 'Beware of the Leopard.

[Zetetic]

Yes but we are in a situation now where patient care is delivered by other organisations and goes far beyond the inpatient and the very minimal community care that the NHS provides; other organisations are obviously involved in patient care, support and treatment.

This needs to be brought to an end.

(Edit: Regardless it doesn't really matter. Private organisations will presumably have information about their services. The NHSs need whole-system and population information, and they can obtain what is relevant from private contractors as part of the commissioning arrangements.)

[Zetetic]

Trenter personally made sure the plans were on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying 'Beware of the Leopard.

The rather sick and sad irony is that England actually only has these eruptions of indignation because it is far too transparent whilst still not being transparent or competent enough to handle the public and special interest groups' reactions.[nb]That, and that England supports a broad civil society of sorts in a way that other parts of the UK really struggle to, to different degrees.[/nb]

Scotland and Wales watched care.data unfold - and presumably now this - and fairly quickly decided that they were going to find a way forward that minimised both the public awareness of the data flows that they wanted to put in place and the ability of the public to opt-out at all. (Scotland was a little noisier about the existence of SPIRE than my gloss suggests, but they've stepped very carefully around talking much about the actual movement of information.)

To be clear, I don't like Scotland and Wales's approaches. I wish that the lesson that they were learning from England was very different.

[TrenterPercenter]

"As much as feasibly possible?" Are you seriously suggesting this was done? AFAIK, it was posted on a twitter account that most people won't be following, with details on a website that nobody has any reason to look at unless they already know about it. I've not seen anything about it in the mainstream media. The only reason anyone knows about it is, as I said, because 3rd parties have taken it upon themselves to disseminate the information. TBH, I'd be willing to bet most people still don't know about it, as most people don't follow the people and organisations that have posted about it. Neither the Government nor NHS Digital did anything like publicising it "as much as feasibly possible."

I'm suggesting that is what an ethics board would have said rather than saying "nobody needs to be informed".

I don't know how it well it was disseminated I've known about it for about 2 years and seem to remember some information making into the big papers quite a while back (that doesn't mean most people would no about it though I agree).  You might want to consider there has been something else taking precedent over health messaging for the last two years as well.  It would seem quite reasonable for people to request a longer period for this public messaging to take place because of Covid.

There is a very good claim to ethics that the public does not know enough about opting out if someone actually bothered to do that work rather than repeating newspaper headlines that are just designed to get you anxious so you click on them to read them (an quite ironically give them your data in most cases).

[TrenterPercenter]

This needs to be brought to an end.

I understand that but you are, quite uncharacteristically, not explaining how this can be done and willing to identify parts of the patient experience that are not delivered by the NHS that would suffer - you want the NHS to nationalise dentists, GPs, hip replacement factories, all medical aids, pharmaceuticals, care homes, disability advocacy groups, opticians, university research labs, physios, psychotherapists, dieticians, third sector disability groups.....

There are problems with privatisation sure these are clear but being so fundamentalist about "patient care" is absolutely unworkable.  You can't have centralised community care.

[Zetetic]

I think that's something of a tangent (from third parties being contracted to provide basic analytical and management services to the NHSs, which is what I believed the subject was), but most of the things you've mentioned either:
- should be nationalised, or
- should be liquidated, or
- are irrelevant to the issue patient-level data flows for planning and evaluation purposes

(Edit: There's one example in your list that's an exception, and in that case data flows should be established by a combination of contract and agreement.)

(Edit: I'll also admit that I'm in a slightly ebullient mood. The real answer is usually that we should establish data flows by contract or regulation - which is broadly what this attempt to make GP data available nationally in England involves.)

[Buelligan]

Just trying to opt out here, https://digital.nhs.uk/services/national-data-opt-out , it's telling me I need my NHS number to do so, it's also telling me that I can't read some pages because I'm not in the UK.  Why would that be?

Also, I want to know what happens to the data for dead people?  I want to opt out for my mum but I'd bet the farm they steal it from your family when you die.

[Zetetic]

The English National Data Opt-Out is different to the Type 1 Opt-Out anyway.

it's telling me I need my NHS number to do so,

Well, yes. How else do you identify which records not to include in whatever flows?

[Buelligan]

Not very accessible for people who just want to pop in an opt out though, they should make more of an effort.  At least warn you when you start reading what you'll need.

[Zetetic]

Also, I want to know what happens to the data for dead people?

Not personal data under the GDPR (which I do think reflects a fairly narrow view of personhood), which usually broadly means that all bets are off in theory if not in practice.

[Buelligan]

So how does that impact all the, I imagine, enormous undersea lake of data for the dead?  They can sell it all and no one can say a word, even though when it was collected the people whose data it was were never warned that it might be sold or given the option to opt out?  This seems very wrong.

[TrenterPercenter]

(Edit: I'll also admit that I'm in a slightly ebullient mood. The real answer is usually that we should establish data flows by contract or regulation - which is broadly what this attempt to make GP data available nationally in England involves.)

Ta. Good to have you back Z : )

Edit: Btw I don't massively disagree with your nationalise, liquidate, exterminate policy (good slogan for a new leftwing party perhaps) but there are complications to this in some areas (but it is a tangent so perhaps another time).

[Zetetic]

They can sell it all and no one can say a word, even though when it was collected the people whose data it was were never warned that it might be sold or given the option to opt out?  This seems very wrong.

My understanding is certainly that data protection law doesn't come into it (other than where it might reflect on living descendents or partners, say).

[Buelligan]

Yes, that's what I'd guessed.  Seems pretty shonky to me but I ask myself, is that a surprise?  No, no it is not.

[Zetetic]

RCGP saying do not want.

[Midas]

Everyone is given the right to opt-out and has been informed (as to what has been deemed sufficient by an ethics board) about this.

FWIW, I don't think opt-out is within the remit of my fantasy in my previous post.

In a broader sense, I do not believe opt-out systems operate with the honest intention of giving people power over themselves, or their data. They function as a tool of institutional power, largely stripping away the barrier of informed consent that would otherwise be in place if the public had to manually opt-in, in an effort to maximise results. Opt-out is a disingenuous form of autonomy because institutions are depending on and expecting a lack of engagement from the public. I'm always wary of those that consider "not opting-out" the same as consent, even if the legal minutia says otherwise.

[olliebean]

Apparently around 90% of the time NHS Digital ignores the opt-out anyway. Which is why the option of preventing your GP records being shared with NHS Digital in the first place is so important.

[The Ombudsman]

What do you mean opt-out deadline?

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"

So the deadline is to opt out before then.

[The Ombudsman]

Why would the NHSs need to contract other companies to do essential day-to-day work?

That seems a terrible idea.

I'm more thinking of research purposes, less day-to-day operations. I can see the NHS may need specialist services some of the time but might be expensive to have in house staff. Also consider they may not get the candidates applying either.

[The Ombudsman]

You might want to add some caveats to that one:

https://twitter.com/Captain_Janegay/status/1397298883429117953

Yes, explained that in a subsequent reply.

That small print is horrifying and should be illegal.

[TrenterPercenter]

FWIW, I don't think opt-out is within the remit of my fantasy in my previous post.

In a broader sense, I do not believe opt-out systems operate with the honest intention of giving people power over themselves, or their data. They function as a tool of institutional power, largely stripping away the barrier of informed consent that would otherwise be in place if the public had to manually opt-in, in an effort to maximise results. Opt-out is a disingenuous form of autonomy because institutions are depending on and expecting a lack of engagement from the public. I'm always wary of those that consider "not opting-out" the same as consent, even if the legal minutia says otherwise.

It's not the same as consent that is why it treated differently.  You will not get ethical approval for opt out procedure unless you are ensuring several other criteria including; is something in the public interest; are you informing to a reasonable standard (set by ethics committees that are independent bodies) the accessible means and time for participants to opt out and that your data is sufficiently low risk to the individual and de-identified.

That is how it works.  Don't shoot the messenger these are just the processes that ethics applies; these are legal matters. 

There is massive difference between allowing concerned people to opt out and trying to make all research by explicit consent, something that simply means all research regardless of how safe and in the public interest it might be gets cast in the bin of dishonesty.  This is silly; population work is essential; not least to help vulnerable groups and communities.