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

[Sebastian Cobb]

I s'pose my belief is that (in a world of my wildest delusions) individuals should have self-determination to decide how their data is collected, stored, analysed or otherwise used, regardless of how noble the intentions behind collecting it are. I'm not part of an "anti-research movement", I simply wanted to (somewhat facetiously) vent my anxiety that executing this without people's informed consent is unethical.

Anyway, is it just me or is anyone else experiencing déjà vu?

This is an entirely reasonable position.

[olliebean]

Also, note that the intentions behind collecting this data are not wholly noble.

[Pinball]

Opt out. I did.

https://medconfidential.org/how-to-opt-out

[Zetetic]

Anyway, is it just me or is anyone else experiencing déjà vu?

Sure. Why does no-one care about QR*s**rch? Or S***L? Or even OpenS*FL*Y? The governance (and technical, in the last case) differences aren't irrelevant, but they're surely not sufficient to dissolve any discussion?

The main lesson from Care.data was "Don't tell the fucking proles" and the universities learned it well.

[Zetetic]

Also, note that the intentions behind collecting this data are not wholly noble.

No, much of this data has been collected so that 7000 odd private contractors can claim particular payments.

[Sebastian Cobb]

Sure. Why does no-one care about QR*s**rch? Or S***L? Or even OpenS*FL*Y? The governance (and technical, in the last case) differences aren't irrelevant, but they're surely not sufficient to dissolve any discussion?

The main lesson from Care.data was "Don't tell the fucking proles" and the universities learned it well.

I'm not convinced governance is thought about in a meaningful way by most people, like lots of 'serious' admin, the general attitude towards it seems to be it's an obstacle one perfunctorily plods through with no real engagement beyond 'will the auditor get upset at this next time they're here?'.

[Zetetic]

Okay. That makes the question more pertinent, surely?

If you don't trust Oxford Uni and EMIS's processes and interests more than NHS Digital's, what about QResearch?

[Sebastian Cobb]

I don't trust anyone trying to pool data into vast silos with limited oversight and no granularity over controls.

[Zetetic]

So... what about QResearch?

[Sebastian Cobb]

What about it? Are you saying 'data is already being taken without any patient control or oversight' as a justification to do more of that?

It doesn't strike me as a good argument, and in an ideal world, some sort of body like the EFF would legally have the authority to drown you in a bucket for making it.

[Zetetic]

Are you saying 'data is already being taken without any patient control or oversight' as a justification to do more of that?

No, I think the people involved should be brought to justice. But the universities are lost.

(As a separate issue, the NHSs of the UK should have access to basic healthcare demand, activity and process data generated in the course of the delivery of their services, and we shouldn't be distracted by the historical curiosity of GPs technically being private contractors from that.)

[TrenterPercenter]

I s'pose my belief is that (in a world of my wildest delusions) individuals should have self-determination to decide how their data is collected, stored, analysed or otherwise used, regardless of how noble the intentions behind collecting it are. I'm not part of an "anti-research movement", I simply wanted to (somewhat facetiously) vent my anxiety that executing this without people's informed consent is unethical.

Anyway, is it just me or is anyone else experiencing déjà vu?

You are allowed; and always have been allowed to use non-consent procedures for certain types of data i.e. if the data is low risk to an individual; the data is de-identified/de-personalised to the individual; the data is a in the "public interest" (something called public task - hence why selling it to people for purely commercial reasons disqualifies it)...and a few other things.

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.

It's not unreasonable to be anxious about this it is just unhelpful to present things in unbalanced ways.  I'm pointing out this is exactly the approach that people took on vaccines they focused on some aspects of what they believed the story was at the time because it travels well (it was largely a creation of media because panic and anxiety sells). 

[Dr Rock]

If anyone wants my entire medical history they can have it for £8. It's a good read! Maybe I should do an Audiobook.

[Johnny Yesno]

Lots of records are centralised already!? This is a new thing; it's yeah but what if? What if a rightwing government comes in and forces us all to have microchips implanted? or starts mercilessly exterminating the infirm in the street?.  Not sure what this has to do with NHS Digital trying (in largely good faith) to create a repository of data to help researchers create better treatments for people.

What if everyone had such unhealthy levels of paranoia about data and no one ever donated blood anymore in case their data was used for purposes that we don't quite know but assume must be bad, it's big after all, and at some point, probably, in the future,  some possible as yet unhatched big data frenzied government started using it? What happens then?

Now who's exaggerating?

The fear is merely that capitalism will continue doing what capitalism does, extracting as much profit from people as it can for those with power. In this case, it is part of the business model of insurance companies to seek to minimise their exposure to risk, and access to individual personal health data would be their holy grail. It would allow them not only to see who is already ill but make predictions about who is higher risk, possibly without the individuals being aware themselves. It's not difficult to imagine an Experian-of-health and all that that would entail, including how it would restrict people's behaviour.

[Paul Calf]

I think Trenter is scared of the basilisk.

[steveh]

Don't think it got mentioned in this or the other thread, but medConfidential have a site listing in readable form where NHS data has been used, whether opt-outs were honoured and the cases where organisations breached the rules over the handling of the data: https://www.theysolditanyway.com/.

[Zetetic]

Think that's just England and maybe just HES (and similar) data via NHS Digital steveh.

Completely ignores the existing data flows that bypass NHS Digital in England, and the three other countries of the UK (as MC usually does) AFAICT at a glance.

[Zetetic]

But there's some orgs in their that *also* have data flows direct from NHS secondary care orgs - most Royal Colleges will run a bunch of audits (that you have to pay to participate in, often) that hoover up personal data (often involving significant admin burden).

Which I think is broadly fine (although I wish that the data was made available back to us more consistently), but again it's interesting that this stuff is largely hidden.

[olliebean]

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.

I don't know what "an ethics board" might have said - presumably, "nobody needs to be informed about this," because as far as I am aware nobody has been, other than indirectly (i.e., on news feeds or blogs etc. rather than by direct communication) by concerned third parties who feel that it is ethically important that people should know about it.

[chveik]

i wouldn't want for some uni ponce to get his filthy hands on my hard-earned data

[Sebastian Cobb]

The idea that most people's health data will save lives is just emotional blackmail aimed at making you think you're special really, most of us won't get any interesting esoteric illnesses worthy of research, most of us here will probably die of heart attacks that we know how to mitigate or some form of chronic baldness.

[Zetetic]

Absolutely - and that would suggest that it's far more important the data is available for service planning and improvement within the NHSs, than it is that it's made available for clinical research.

[TrenterPercenter]

Now who's exaggerating?

The fear is merely that capitalism will continue doing what capitalism does, extracting as much profit from people as it can for those with power. In this case, it is part of the business model of insurance companies to seek to minimise their exposure to risk, and access to individual personal health data would be their holy grail. It would allow them not only to see who is already ill but make predictions about who is higher risk, possibly without the individuals being aware themselves. It's not difficult to imagine an Experian-of-health and all that that would entail, including how it would restrict people's behaviour.

I think it was quite clear I was doing being facetious, just like the OP.

Yes, capitalism will do what capitalism does that is no excuse for purposely only telling the side of things that plays into paranoia and hysteria.  There are lots of rightwing anti-intellectuals who "hate capitalism" and the intellectuals that uphold it and they spend their time telling everyone that will listen their paranoid fantasies never balancing things out with reality but always asking "what if? what if?".

I asked what are the worries? You say insurance companies; I've explained that accessing individual personal data would be illegal; NHS Digital have literally explained in their blurb how they are countering this by use de-identification software; this is standard practice for most research teams it's just the scale and the software that is new.  In order to collect such data under a opt out procedure the data must be de-identified AND of such a nature that it could not be easily re-identifiable to the individual (as such attempts by people to re-indentify the data would be illegal and subject to criminal inquiry). 

Saying things like "holy grail" is just rhetoric; insurance companies pre-screen for conditions; insurance is gambling for the insurer and for the individual; they want your money on an aggregated risk and that is the agreement you are taking on.  I don't have private health insurance because I believe in universal healthcare (and work the NHS).  The data could be used for them to better predict what life expectancy certain conditions might have; which as mention may actually reduce premiums if they find certain condition actually have better prognoses.  There will still be massive variabilities between people even then.

Why focus on this though; how about a new treatment is introduced that is actually reducing lifespans that can be indentifie and removed? What about people living with conditions no one gives shit about but can be linked up and supported through the data; what about identifying groups of individuals who combination of symptoms put them at risk and can be treated early? 

Your misrepresenting what I'm saying; I'm saying IF you want an informed public then you need to be clear on the advantage and potential dangers on this type of big data and not just going on about state surveillance, big brother and insurance companies as the only reason these data is being "stolen" from people.

[The Ombudsman]

.

[TrenterPercenter]

I don't know what "an ethics board" might have said - presumably, "nobody needs to be informed about this," because as far as I am aware nobody has been, other than indirectly (i.e., on news feeds or blogs etc. rather than by direct communication) by concerned third parties who feel that it is ethically important that people should know about it.

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.

[TrenterPercenter]

edit glitch

[Johnny Yesno]

I think it was quite clear I was doing being facetious, just like the OP.

Well, you think wrong.

I don't have private health insurance because I believe in universal healthcare (and work the NHS).

lol, the tories don't give a flying fuck about your opinions on public v private healthcare.


Anyway, bottom line is Peter Thiel is a right wing libertarian cunt and I don't want him to have my medical data. Geddit?

[TrenterPercenter]

No I don't because presumably you know you can opt out don't you?

I don't want Peter Thiel having access to NHS data (not just my own) but the problem isn't "NHS Digital selling your medical data to insurance companies" it is who the fucking government is willing to give NHS contracts too (in the case of Peter Thiel this already having happened).

[Buelligan]

Why focus on this though; how about a new treatment is introduced that is actually reducing lifespans that can be indentifie and removed? What about people living with conditions no one gives shit about but can be linked up and supported through the data; what about identifying groups of individuals who combination of symptoms put them at risk and can be treated early? 

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?

[The Ombudsman]

No I don't because presumably you know you can opt out don't you?

I don't want Peter Thiel having access to NHS data (not just my own) but the problem isn't "NHS Digital selling your medical data to insurance companies" it is who the fucking government is willing to give NHS contracts too (in the case of Peter Thiel this already having happened).

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.