Donate to Remove ads

Got a credit card? use our Credit Card & Finance Calculators

Thanks to johnstevens77,Bhoddhisatva,scotia,Anonymous,Cornytiv34, for Donating to support the site

Did you know...?

A virtual pub for off topic, light hearted pub related banter and discussion. No trainers
AsleepInYorkshire
Lemon Half
Posts: 7383
Joined: February 7th, 2017, 9:36 pm
Has thanked: 10514 times
Been thanked: 4659 times

Re: Did you know...?

#416288

Postby AsleepInYorkshire » May 30th, 2021, 10:11 pm

I left the following link earlier in this thread.

National data opt-out

Mythbusting social media posts about the national data opt-out

Has anyone read the second link?

In this link the NHS clearly states
  1. You can opt anytime - there's no deadline - myth busted
  2. Data is only shared to improve health & care
  3. The NHS does not sell health & care data - myth busted
  4. Data is not shared with marketing of insurance companies - myth busted
I have spent most of life not being diagnosed or being incorrectly diagnosed. The symptoms of my condition caused many mental health problems over no less than 40 years.

I'd pay someone to read my medical notes and learn from them and make sure that I am the last to go through such a journey. Because it's the right thing to do. Fool on.

AiY

Mike4
Lemon Half
Posts: 7086
Joined: November 24th, 2016, 3:29 am
Has thanked: 1637 times
Been thanked: 3794 times

Re: Did you know...?

#416289

Postby Mike4 » May 30th, 2021, 10:15 pm

I suspect the biggest risk is a human hack rather than a technical one. Some programmer working on the system who has been monumentally pished off by his boss for example, figures out a way to leak large chunks of the database if not all of it. Or gets seduced by a huge sum of money, or blackmailed, or something along those lines. Another possibility is one of these third parties allowed access will themselves leak the data like they do now occasionally with credit cards/passwords/names/addresses etc.

But whatever it is, I'm reasonably confident it will get leaked or hacked sooner or later. Worst will be access being obtained by illegitimate parties secretly and no-one ever realising, other than people finding their life assurance applications being littered with exclusions for conditions no-one could have known about any other way.

GrahamPlatt
Lemon Quarter
Posts: 2059
Joined: November 4th, 2016, 9:40 am
Has thanked: 1032 times
Been thanked: 824 times

Re: Did you know...?

#416291

Postby GrahamPlatt » May 30th, 2021, 10:21 pm

AsleepInYorkshire wrote:I left the following link earlier in this thread.

National data opt-out

Mythbusting social media posts about the national data opt-out

Has anyone read the second link?

In this link the NHS clearly states
  1. You can opt anytime - there's no deadline - myth busted
  2. Data is only shared to improve health & care
  3. The NHS does not sell health & care data - myth busted
  4. Data is not shared with marketing of insurance companies - myth busted
I have spent most of life not being diagnosed or being incorrectly diagnosed. The symptoms of my condition caused many mental health problems over no less than 40 years.

I'd pay someone to read my medical notes and learn from them and make sure that I am the last to go through such a journey. Because it's the right thing to do. Fool on.

AiY


Yes, I read all that. You think you can opt out once the data has left GDPR jurisdiction? You think a central database is not a massive target? Look, whilst I absolutely agree that data-mining a resource such as that could be of huge advantage, I remain deeply sceptical that it couldn’t also be misused. Some people will (as we see) be prepared to join in. Others would not be. I do not think this has been adequately publicised and debated.

AsleepInYorkshire
Lemon Half
Posts: 7383
Joined: February 7th, 2017, 9:36 pm
Has thanked: 10514 times
Been thanked: 4659 times

Re: Did you know...?

#416294

Postby AsleepInYorkshire » May 30th, 2021, 10:41 pm

GrahamPlatt wrote:
AsleepInYorkshire wrote:I left the following link earlier in this thread.

National data opt-out

Mythbusting social media posts about the national data opt-out

Has anyone read the second link?

In this link the NHS clearly states
  1. You can opt anytime - there's no deadline - myth busted
  2. Data is only shared to improve health & care
  3. The NHS does not sell health & care data - myth busted
  4. Data is not shared with marketing of insurance companies - myth busted
I have spent most of life not being diagnosed or being incorrectly diagnosed. The symptoms of my condition caused many mental health problems over no less than 40 years.

I'd pay someone to read my medical notes and learn from them and make sure that I am the last to go through such a journey. Because it's the right thing to do. Fool on.

AiY


Yes, I read all that. You think you can opt out once the data has left GDPR jurisdiction? You think a central database is not a massive target? Look, whilst I absolutely agree that data-mining a resource such as that could be of huge advantage, I remain deeply sceptical that it couldn’t also be misused. Some people will (as we see) be prepared to join in. Others would not be. I do not think this has been adequately publicised and debated.

Hi Graham,

My apologies. I've not really clarified myself. I will remain opted in as I believe that the benefit far outweighs the issue of someone getting hold of my medical notes for other means. And of course those who want to can opt out whenever they want. I suspect you're right about publicity - perhaps I am being naïve but maybe that got a little lost as we faced down Covid?

AiY

Mike4
Lemon Half
Posts: 7086
Joined: November 24th, 2016, 3:29 am
Has thanked: 1637 times
Been thanked: 3794 times

Re: Did you know...?

#416295

Postby Mike4 » May 30th, 2021, 10:44 pm

AsleepInYorkshire wrote:
My apologies. I've not really clarified myself. I will remain opted in as I believe that the benefit far outweighs the issue of someone getting hold of my medical notes for other means. And of course those who want to can opt out whenever they want. I suspect you're right about publicity - perhaps I am being naïve but maybe that got a little lost as we faced down Covid?

AiY


All very well for those of us old gits who won't be needing life assurance in the future, but how about for those whose premia will be a hundred-fold higher than if they had the foresight to opt out?

And what about our young children? How do they opt out?

AsleepInYorkshire
Lemon Half
Posts: 7383
Joined: February 7th, 2017, 9:36 pm
Has thanked: 10514 times
Been thanked: 4659 times

Re: Did you know...?

#416299

Postby AsleepInYorkshire » May 30th, 2021, 10:58 pm

Mike4 wrote:All very well for those of us old gits who won't be needing life assurance in the future, but how about for those whose premia will be a hundred-fold higher than if they had the foresight to opt out?

And what about our young children? How do they opt out?

National Data Opt-out

Patients can view or change their national data opt-out choice at any time by using the online service at http://www.nhs.uk/your-nhs-data-matters or by calling 0300 3035678.

By 30 September 2021 all health and care organisations are required to be compliant with the national data opt-out policy.


AiY

Mike4
Lemon Half
Posts: 7086
Joined: November 24th, 2016, 3:29 am
Has thanked: 1637 times
Been thanked: 3794 times

Re: Did you know...?

#416300

Postby Mike4 » May 30th, 2021, 11:17 pm

AsleepInYorkshire wrote:
Mike4 wrote:All very well for those of us old gits who won't be needing life assurance in the future, but how about for those whose premia will be a hundred-fold higher than if they had the foresight to opt out?

And what about our young children? How do they opt out?

National Data Opt-out

Patients can view or change their national data opt-out choice at any time by using the online service at http://www.nhs.uk/your-nhs-data-matters or by calling 0300 3035678.

By 30 September 2021 all health and care organisations are required to be compliant with the national data opt-out policy.


AiY


I feel you're missing the point. How does you (or your children) opting out help, once the insurance companies have grabbed the data illustrating your children are genetically predisposed to <whatever> horrid disease when they grow up?

GrahamPlatt
Lemon Quarter
Posts: 2059
Joined: November 4th, 2016, 9:40 am
Has thanked: 1032 times
Been thanked: 824 times

Re: Did you know...?

#416313

Postby GrahamPlatt » May 31st, 2021, 7:56 am

UncleEbenezer wrote:
GrahamPlatt wrote:There are no doubt many like you, who have led blameless, (or as you say, boring) lives and have nothing to hide. The saying goes, “if you’ve nothing to hide, you’ve nothing to fear”. And the rejoinder goes, “so you’re happy to leave your curtains open at night then?”.

Curtains? How quaint!


“so you’re happy to leave your Windows open at night then?”.

There, fixed it.

UncleEbenezer
The full Lemon
Posts: 10691
Joined: November 4th, 2016, 8:17 pm
Has thanked: 1459 times
Been thanked: 2965 times

Re: Did you know...?

#416317

Postby UncleEbenezer » May 31st, 2021, 8:06 am

GrahamPlatt wrote:
UncleEbenezer wrote:
GrahamPlatt wrote:There are no doubt many like you, who have led blameless, (or as you say, boring) lives and have nothing to hide. The saying goes, “if you’ve nothing to hide, you’ve nothing to fear”. And the rejoinder goes, “so you’re happy to leave your curtains open at night then?”.

Curtains? How quaint!


“so you’re happy to leave your Windows open at night then?”.

There, fixed it.

Happy to say I don't use Windows.

(but I wouldn't dream of closing my windows at night).

88V8
Lemon Half
Posts: 5769
Joined: November 4th, 2016, 11:22 am
Has thanked: 4098 times
Been thanked: 2560 times

Re: Did you know...?

#416331

Postby 88V8 » May 31st, 2021, 10:15 am

Mike4 wrote:I feel you're missing the point. How does you (or your children) opting out help, once the insurance companies have grabbed the data illustrating your children are genetically predisposed to <whatever> horrid disease when they grow up?

So assurance companies shouldn't set the premium to take account of specific risk factors? Hmm
Or proposers should be allowed to conceal familial predispositions? Also hmmm.

Life assurers are not a charity. It's bad enough that we have this ludicrous EU bilge from 2012 obliging life assurers to ignore gender. Proposers' medical history and predispositions should be fully transparent.

Anyway, this is a sidetrack. What matters for me is that there should be a central database. Hooray!

Whether it gets leaked is a very secondary matter.

V8 (Pro-curtains. And sheets blanket eiderdown counterpane)

bungeejumper
Lemon Half
Posts: 8064
Joined: November 8th, 2016, 2:30 pm
Has thanked: 2846 times
Been thanked: 3939 times

Re: Did you know...?

#416343

Postby bungeejumper » May 31st, 2021, 10:56 am

88V8 wrote:So assurance companies shouldn't set the premium to take account of specific risk factors? Hmm
Or proposers should be allowed to conceal familial predispositions? Also hmmm.

Isn't that missing the point of a health insurance policy, though? It's there to insulate you from the risk that the flying fickle finger of fate will do something really unlucky to you, without you having done anything to deserve it. In the full awareness that it probably won't. Most clients will have the bad luck never to get a return on their premiums ;) , but that's not quite the point. It's up to the insurer to set his prices so that they still provide him with a profit, without unfairly picking on one person because he's been the unlucky one.

What do I mean by unfairly? Doesn't a motor insurer raise its prices for a person who's got a bad accident record, or who belongs to a demographic that's more likely to result in a claim?

Well, yes it does, and for the very good reason that an individual can control (and improve) his driving risk through his behaviour. The same can't generally be said for whether he gets laid low by cancer, or arthritis, or by an inherited tendency toward mental illness. That's the kind of risk that health insurance is supposed to tackle without fear or favour.

Of course, there are gradations of controllable risk in the health arena too. Being overweight, smoking, drugs and alcohol are only a few of the areas where individuals can choose to raise or lower their risks. (So are activities like skiing, motorcycling, competitive running and shooting.) As things stand, the NHS does not generally penalise those individuals who do those things. But you can bet your life that a private insurer who got his hands on confidential NHS records would not hesitate.

But to return to the point. What I "have to hide" is that I have been successfully treated for cancer - probably a genetic thing, since my grandfather died of the same cancer back in the 1950s. And that means that I will be on the records as a smallish ongoing cancer risk for the rest of my days - and that in turn will impact on any insurance policy that I buy from now on (although it shouldn't affect any pre-existing policies.)

The NHS, on its present course, will be even-handed toward me. But consider this. They say that 20% of all Americans can't get affordable health insurance because of the unfortunate illnesses that they've had in the past. So now ask me how I feel about the NHS flogging off my details to the US private sector, at the exact moment when it's gunning hard to be allowed into the NHS policy sector? Be careful what you wish for.

BJ

onthemove
Lemon Slice
Posts: 540
Joined: June 24th, 2017, 4:03 pm
Has thanked: 722 times
Been thanked: 471 times

Re: Did you know...?

#416367

Postby onthemove » May 31st, 2021, 1:13 pm

bungeejumper wrote:So now ask me how I feel about the NHS flogging off my details to the US private sector, at the exact moment when it's gunning hard to be allowed into the NHS policy sector? Be careful what you wish for.


The US private sector ploughs a heck of a lot of money into research and development for drugs and treatments. I know this because my employment now, and for the past couple of decades, has largely been thanks to US (and UK/European(*)) big pharma's huge investments in their research and development facilities and pipelines. [(*) in practice, most of the big pharma have R&D and other operations spread all around the world, so it doesn't really make sense to distinguish US from non-US big pharma; it's really global 'big pharma']

The size and scale of big pharma's operations is enormous. There are a lot of very clever people doing a lot of exceptionally good work in those private companies on a seriously industrial scale.

Far more, and far more focused and determined than I ever believe that keeping it 'public' (or whatever the correct term is) could ever result in. I simply do not believe there would be anything like the same amazing rate of progress in medical research without these big pharma companies and their willingness to take investment risks.

The kind of money these big pharma companies invest on a speculative basis would be prohibitive for (e.g.) the UK government to ever justify. I mean, just look at that recent announcement for a UK agency (I forget what they plan to call it) to do speculative development that they announced a few months ago - I couldn't help laugh at the pathetically small sums of money they were making available. Those kind of sums aren't even a rounding error compared to what big pharma invest in their R&D.

For my employer, the vast majority of orders in $$$ terms come from big pharma. It's true that a small proportion do come from publicly funded bodies. But the vast majority is private, big pharma. The largest orders, the largest investments, the largest facilities are all for big pharma.

Just look at for coronavirus, how the most successful efforts needed to call upon big pharma. Even if those big pharma didn't do the original R&D in this case, it is their size and money and huge investment in facilities, etc, that enabled rapid scale up of vaccine trials and the manufacture of the vaccines, etc.

Just think - if you provide your data, and your late father's data, to these companies, wouldn't you be happy if they could learn something from it, develop new treatments, and improve your chances if your cancer were to come back?

Wouldn't you want to help prevent others going through what you and your family have gone through?

I just really don't understand where you're coming from what you say "Be careful what you wish for".

Personally, I wish for as much money as possible to be ploughed into medical and scientific understanding. I wish for scientists, doctors and researchers to be given as much access, to as much data, as at all possible to help them do their research.

I just do not understand, in practice, in the real world, any argument that could justify keeping potentially life saving data under lock and key, blocking the best scientists and the best equipped facilities in the world from accessing that data to mine it for scientific 'gold' that could benefit us all.

For example, I don't buy into the concerns that some others have raised about e.g. insurance companies nefariously getting hold of this data and penalizing individuals on that basis. Insurance companies don't run on the basis of one or two individual people analysing the data of one or two people and deciding their premiums where they could incorporate such information into their policy decisions without it becoming known. These companies deal with huge quantities of data about a lot of people. It wouldn't be possible to incorporate illegal use of data into their premium calculations and not (at least eventually) be found out. So much so, that the vast majority of companies will - out of practical necessity - play by the book. Even if someone offered them hacked data on the dark web, they simply would not accept it. The risk to their business - when, not if - they are caught out, would not be worth it.

It saddens me that as a nation, we seem to have twisted ourselves so far in knots, from tabloids portraying big pharma as evil, the media creating scare stories about hacking, labour creating scare stories about the NHS god forbid being 'sold off' (whatever that actually means), and such like... that we would actually seem to prefer to keep our data under lock and key, than give some of the worlds best scientists, in the best equipped labs in the world, access to data which they might be able to use to help drive research and develop new scientific understanding and treatments that could be a force for global good.

88V8
Lemon Half
Posts: 5769
Joined: November 4th, 2016, 11:22 am
Has thanked: 4098 times
Been thanked: 2560 times

Re: Did you know...?

#416379

Postby 88V8 » May 31st, 2021, 3:17 pm

bungeejumper wrote:The NHS, on its present course, will be even-handed toward me. But consider this. They say that 20% of all Americans can't get affordable health insurance because of the unfortunate illnesses that they've had in the past. So now ask me how I feel about the NHS flogging off my details to the US private sector, at the exact moment when it's gunning hard to be allowed into the NHS policy sector? Be careful what you wish for.

Well argued, but now we've drifted off life assurance onto health insurance.
From a personal perspective I see your point, but I still say that the premium should reflect the risk.

And as regards the NHS being universally free, if I could devise some means whereby those who smoke, drink excessively, take drugs, or are fat... have to pay towards their treatment, then it would not be universally free, not at all.

onthemove wrote:....we would actually seem to prefer to keep our data under lock and key, than give some of the worlds best scientists, in the best equipped labs in the world, access to data which they might be able to use to help drive research and develop new scientific understanding and treatments that could be a force for global good.

... which is surely the pro bono point.

The public good trumps the private premium.
At any rate, it does for me.

V8

marronier
Lemon Slice
Posts: 280
Joined: November 7th, 2016, 8:31 am
Has thanked: 11 times
Been thanked: 88 times

Re: Did you know...?

#416397

Postby marronier » May 31st, 2021, 5:22 pm

Casting my mind back to the late '40s , when the NHS and National Insurance was born , I seem to remember that the founding principle was that public funds would be provided when trouble troubles you ,but they were not there to underwrite a reckless and hedonistic lifestyle. Maybe , having moved far from that original concept contributes to why the Labour Party is in its present parlous state.

Moosehoosenew
Lemon Pip
Posts: 69
Joined: December 16th, 2019, 8:59 am
Has thanked: 12 times
Been thanked: 47 times

Re: Did you know...?

#416504

Postby Moosehoosenew » June 1st, 2021, 7:53 am

And as regards the NHS being universally free, if I could devise some means whereby those who smoke, drink excessively, take drugs, or are fat... have to pay towards their treatment, then it would not be universally free, not at all.


Well those that smoke and drink certainly pay a fair whack in taxes towards their nhs costs. Additionally they generally kick the bucket a great deal sooner than others, who by living longer will later in life still consume a huge amount of NHS services (as I am witnessing with elderly parents who do not smoke or drink to excess). I would think that the actual costs on this unknown.

GrahamPlatt
Lemon Quarter
Posts: 2059
Joined: November 4th, 2016, 9:40 am
Has thanked: 1032 times
Been thanked: 824 times

Re: Did you know...?

#416505

Postby GrahamPlatt » June 1st, 2021, 7:58 am

Re the 23rd June deadline.
This applies to the “Type 1” opt-out, which can only be done by sending a form to your GP.

https://digital.nhs.uk/data-and-informa ... ncy-notice

You really do have to search way down the screen to find this information...

“Opting out of NHS Digital collecting your data (Type 1 Opt-out)
If you do not want your identifiable patient data (personally identifiable data in the diagram above) to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice. This is known as a Type 1 Opt-out.”

Continue until you find this paragraph:

If you wish to register a Type 1 Opt-out with your GP practice before data sharing starts with NHS Digital, this should be done by returning this form to your GP practice by 23 June 2021 to allow time for processing it. If you have previously registered a Type 1 Opt-out and you would like to withdraw this, you can also use the form to do this. You can send the form by post or email to your GP practice or call ‪0300 3035678‬ for a form to be sent out to you.

And click on “returning this form”.

Sunnypad
Lemon Slice
Posts: 744
Joined: November 4th, 2016, 1:17 pm
Has thanked: 153 times
Been thanked: 309 times

Re: Did you know...?

#416600

Postby Sunnypad » June 1st, 2021, 3:27 pm

A GP expresses concerns

https://inews.co.uk/opinion/nhs-data-sh ... ed-1028042

There's very little we can influence now but this might be something that we can. Get form filling and writing to all if you're not happy with this. It might be something that gets stopped.

Sussexlad
Lemon Slice
Posts: 382
Joined: November 4th, 2016, 12:49 pm
Has thanked: 317 times
Been thanked: 163 times

Re: Did you know...?

#416625

Postby Sussexlad » June 1st, 2021, 4:51 pm

Sunnypad wrote:There's very little we can influence now but this might be something that we can.


You need to get a footballer onboard !

Sunnypad
Lemon Slice
Posts: 744
Joined: November 4th, 2016, 1:17 pm
Has thanked: 153 times
Been thanked: 309 times

Re: Did you know...?

#416644

Postby Sunnypad » June 1st, 2021, 6:29 pm

Twenty years ago, I knew a nice one! But I no longer hang out in bars so...no luck.

So much of my nhs record is wrong or badly written up, it would be nice to scrub it but I bet that's not allowed.

Sunnypad
Lemon Slice
Posts: 744
Joined: November 4th, 2016, 1:17 pm
Has thanked: 153 times
Been thanked: 309 times

Re: Did you know...?

#416669

Postby Sunnypad » June 1st, 2021, 8:21 pm

Doctors looking at the ethics of this now

https://www.theguardian.com/society/202 ... hs-digital


Return to “Beerpig's Snug”

Who is online

Users browsing this forum: No registered users and 11 guests