nhs sharing your details opting out

[DAPPH]

Being a total physical ( and mental ) wreck at the start of my so called autumnal years , I've no objection whatsoever of any of my health related anonymous data ( even down to the general post code area ) where things might be happening ( Covid incidence anyone ) being used/ purchased by companies to enhance treatments or develop new medical science for the rest of humanity . Any one could easily look in our bin bags and get a pretty good idea of things, they can also get lots of general info in the area from chemists and drug sales in supermarkets . Getting a clearer data picture will, I offer , lead to new worthwhile developments

If people never allowed such data to be collated & used I doubt I'd be injecting my self with the latest type two anti diabetes meds that actually remove sugar from my blood & stop my body trying to turn it into fat or enlarge my blood cells till that happened .
Big pharma & research companies will only spend a lot of money on research where they think they can make a profit or stay in business . There's not much sense in spending £ billions on small projects knowing you're going to make a car crash losses every time is there , it flies in the face of all business & common sense ?
The covid vaccine at cost by Oxford Astra Zeneca keeps them ticking over & funding new research .

 

[MattF]

sometimes quality rather than quantity of posts may be desirable.

Half the members, myself included, would likely be up the creek if we go that route.

 

[DAPPH]

Hah. Utterly useless shower of record-keepers.
I sent for my medical records and paid a fee of £25 for the service.
In exchange for my money, they sent back two pages of wide-spaced A4, containing some info from 1983 and 89. Absolutely nothing about any life-threatening illnesses, injuries or conditions I've had.
I was told that older records are kept in a salt mine in Cheshire, and best of luck finding anything.

Think I ended up paying £128 for all my records from several places ..got a fair few FOC too to present a compensation claim after getting crippled at work because of injury's with the liability accepted by my employers. They filled almost two & a half standard A3 paper box cartons .
It's a bit of a bug bear but because of our difficult experiences wrt records & scans going missing at ( in appropriate & inopportune times ) we've decided to keep them all in sealed plastic storage boxes just incase anything from the past rears it's ugly head . That also include several private MRI scans & X rays that cost an arm and a leg at the time .

 

[Farside]

In This adversary with all the craziness going there has been some fantastic innovation.

couple of my team, a microbiologist and a materials scientists have helped to develop a reusable isolation gown. It can be washed up to 75 times in a hospital laundry following the washing instruction set out in HTM 04 01 and uses an RFID tag to track the number of washing cycles

Hope it gets every trace of clinkers out.
Wouldn't fancy sharing the detritus of 74 others.

 

[DAPPH]

you see its been tried before under the name care data

NHS patient data to be made available for sale to drug and insurance firms

Privacy experts warn there will be no way for public to work out who has their medical records or how they are using it

www.theguardian.com

If an application is approved then firms will have to pay to extract this information, which will be scrubbed of some personal identifiers but not enough to make the information completely anonymous – a process known as "pseudonymisation".

However, Mark Davies, the centre's public assurance director, told the Guardian there was a "small risk" certain patients could be "re-identified" because insurers, pharmaceutical groups and other health sector companies had their own medical data that could be matched against the "pseudonymised" records. "You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk," he said.

My extensive experience of insurers when you need them is that they will seek out and try to use every morsel of information they can get to either try and prevent you getting the right financial claim compensation or use it to charge you the earth for a policy that is not as sound/ good as you might eventually discover should you need to make a claim. . But Hey Ho that business , giving out massive director type high incomes & shareholder a worthwhile return on their investments.
I can see such data if connectively linked resulting in much higher premiums or refusal to insure people who unknowingly tick too may risk boxes.

 

[DAPPH]

View your GP health record

View your GP health record online, find out what's included in a GP health record and what to do if there's an issue with your record.

www.nhs.uk

Accessing GP services for someone else, with proxy access

GP surgeries can give someone secure access to another patient's GP services, so they can help them manage their health and care. You can give or get help with prescriptions, appointments and other GP services.

www.nhs.uk

Note

in the bottom link it’s clearly states

Health and care records are confidential so you can only access someone else's records if you're authorised to do so.

This means they can’t have your information by default. You have to give permission, authorisation etc etc. It’s a very big deal to have this information

Could a surgery/ NHS group legally sell totally anonymous selected data they themselves have collated from surgery records ?
For instance such as the number of diabetic's they have on thier books ... so sales & directed TV or un-named postal ads can be upped in the area around the surgery ?

 

[Parm]

Hope it gets every trace of clinkers out.
Wouldn't fancy sharing the detritus of 74 others.

It’s no different from washing the hospital bed sheets, also washed in the same machines to the same standard

 

[MattF]

So what are they actually giving access to? Just anonymised basic data? I've not read any of those links.

 

[gaz1]

if you want me to go down the last data grab which was known as care data im fine with it

but to give you an idea im not the only one that dosnt like it

this is the last time they tried a data grab of medical files

UK patients should have greater data slurp opt-out powers – report

Explicit 'don't take my info' box needed for uses beyond direct care

www.theregister.com

Privacy advocates left out of NHS care.data 'oversight' board

...while lobbyists keep their seats at the table

www.theregister.com

One million patients have opted out of Care.data

Health & Social Care Information Centre also gets 'NHS Digital' rebrand

www.theregister.com

instead its just a new name with the same data grab for medical files

so why only give people 6 week notice what are they hidding theres no info at the local doctors thats if you get into them due to the situation where in at moment

 

[addjunkie]

if you want me to go down the last data grab which was known as care data im fine with it

but to give you an idea im not the only one that dosnt like it

this is the last time they tried a data grab of medical files

UK patients should have greater data slurp opt-out powers – report

Explicit 'don't take my info' box needed for uses beyond direct care

www.theregister.com

Privacy advocates left out of NHS care.data 'oversight' board

...while lobbyists keep their seats at the table

www.theregister.com

One million patients have opted out of Care.data

Health & Social Care Information Centre also gets 'NHS Digital' rebrand

www.theregister.com

instead its just a new name with the same data grab for medical files

so why only give people 6 week notice what are they hidding theres no info at the local doctors thats if you get into them due to the situation where in at moment

In our big brother is watching world is there anything you dont worry about?

 

[James1979]

Hah. Utterly useless shower of record-keepers.
I sent for my medical records and paid a fee of £25 for the service.
In exchange for my money, they sent back two pages of wide-spaced A4, containing some info from 1983 and 89. Absolutely nothing about any life-threatening illnesses, injuries or conditions I've had.
I was told that older records are kept in a salt mine in Cheshire, and best of luck finding anything.

I know the deep store salt mine is true as that’s where the police keep their stuff.

Not so much a case of good luck but money. To retrieve a document box off a specific pallet costs several hundred quid. Then the same to put it back.

The Police have to pay it if you want anything down there. They’ll drag their feet but if you make the right noises you’ll get it. I’m sure the NHS would have to do the same.

 

[brewdexta]

So what are they actually giving access to? Just anonymised basic data? I've not read any of those links.

The GP exemption form is called "Dissent from secondary us of GP patient identifiable data"

which leads me to believe it is not just anonymised data.

This is the bit that galls me, the "NHS Digital mythbuster" trips over its own feet when it says there is no deadline for exemption, but omits to tell you that once the data has been transferred, it won't be deleted. Therefore their is a deadline because its pointless exempting your data after that, only future records will be exempt. How about some plain English and transparency? What is being sent, to whom, what will they be able to do, will all the firms be audited to ensure they are doing what they should etc. And not spread over 30 different obscure docs.

 

[julianf]

They can sell my data, but I want a cut of the profits. Surely thats fair?

Yep. Like when they sold Royal Mail.

Apart from that it was sold at under market value and the people who really made the profits were not the tax payer at all.

(Under market value is historically factual rather than opinion, given the rapid market readjustment immediately following the sell off)


It begs the question - if govt couldn't run somthing as (relatively) simple as a postal service, then what on earth are they doing pretending they can run the rest of the country???

Unless maybe there's more to all these sell offs than what's good for the tax payer?

And then we are back to who makes the gains.

Anyone here think it's going to be them from this latest one?

 

[pedrobedro]

Hope it gets every trace of clinkers out.
Wouldn't fancy sharing the detritus of 74 others.

All the gowns I've had to wear don't have backs in them to get clinkers, very draughty in my experience.

 

[ukracer]

No

I’m saying Tesco sell your data. You allow them to do that by agreeing to the T&Cs. I have been told this affects your insurance premium to a greater or lesser extent

how does that relate to the NHS supposedly selling your data? I say supposedly as there is a link above that links to their site which lays out their stance on it.

It's all about advertising.
I went to look at a bed and a day later all I ended up seeing was adverts for beds. In my social media feeds.

 

[My Old Landy]

It's all about advertising.
I went to look at a bed and a day later all I ended up seeing was adverts for beds. In my social media feeds.

If you search for something through google, you will get adverts for that product. It can be helpful or you can see it as an intrusion. The medical data could have a positive or negative effect. If you suffer from something and you don't tell the insurance company they probably won't pay out. Therefore you buy a policy that covers that pre existing condition. If they know you have it you cannot omit telling them (as you had forgotten or something) . It is all down to perspective.

 

[Cobbler]

It's all about advertising.
I went to look at a bed and a day later all I ended up seeing was adverts for beds. In my social media feeds.

It’s why I keep data & location services on the phone turned off. I got fed up with going to the supermarket & not getting out of the door, phone pings, how was your trip to ........ can you rate your experience. They can do without my experience rated.

 

[ukracer]

You want see some of the stuff we get to see. I’m pretty sure it’s not a virus we’re being affected by, more like a mental illness with delusional paranioa

You mean like seeing a bloke on TV daily coming out with lies (but apparently only little ones) when it's clear to anyone with half a brain he is lying and even believes his own lies and how good he is.?

 

[ukracer]

You wicked wicked person. She would have made you computer much much faster while stealing all your data

I am sure you are aware they don't want access to your computer just the details of your credit cards. A lot of people are not aware.

 

[ukracer]

He’ll be back in 10, just finding the appropriate link

What's interesting is depending what you want to believe you will end up believing that.

I for one would rather believe the outcome of what I can see with my own eyes. If this is internet based that's fine. (Will need a few sources though)

In fact I would rather do my own research than a guy on TV who literally can't say YES or NO.