Can also do it using the NHS App.Visiting from rrsport.co.uk
2012 RRS SDV6
2008 RRS TDV8
"When you fire that first shot, no matter how right you feel, you have no idea who's going to die! You don't know who's children are going to scream and burn. How many hearts will be broken. How many lives shattered. How much blood will spill, until everybody does what they were always going to have to do from the very beginning: SIT DOWN AND TALK!"
as someone who has had to carry his MR and CT scans between hospitals on a DVD, I think it's about bloody time they shared the data around the NHS.
Of course it didn't help that their last attempts were managed by Fujitsu who screwed it up royally, got kicked off the contract, then successfully sued the NHS for compensation.
And they STILL get awarded Government contracts ????.
Dean
====================================
2011 D4 XS - OBD port protection, RLD spare wheel protector, All LED interiors lights, Timed Climate enabled, iiD tool paired.
2011 D4 Landmark - Stolen from same dealer before I paid for it
2011 D4 GS - Stolen whilst at dealer ... All LED interiors lights, DRLs, Spare Wheel protector.
1996 300Tdi - Eaten by tin worms
23rd Jun 2021 8:02 am
RRSTDV8
Member Since: 07 Apr 2014
Location: Here
Posts: 13553
This isn't about sharing information between doctors / hospitals. It's about sharing information (likely in exchange for some money) for "research". Some of that research will doubtless be to help develop new treatments - a good thing - but some will also be for non-medical uses.
The data is supposed to be anonymised but this is a UK Gov computer system so do you trust them to do that properly? Hmmm.Visiting from rrsport.co.uk
2012 RRS SDV6
2008 RRS TDV8
"When you fire that first shot, no matter how right you feel, you have no idea who's going to die! You don't know who's children are going to scream and burn. How many hearts will be broken. How many lives shattered. How much blood will spill, until everybody does what they were always going to have to do from the very beginning: SIT DOWN AND TALK!"
23rd Jun 2021 9:19 am
Robbie
Member Since: 05 Feb 2006
Location: ¯\_(ツ)_/¯
Posts: 17932
Quote:
The data is supposed to be anonymised but this is a UK Gov computer system so do you trust them to do that properly? Hmmm.
The actual government documents give us the term 'pseudo-anonymised' which when scrutinised means nothing more than removing your name, exact date of birth and house number/name. They acknowledge that with minor cross-referencing the pseudo-anonymity can be overcome - sometimes with trivial ease.
For example:
There are 9 houses on my street / postcode - 21 people - 9 couples, 2 teenage kids and 1 adult dependant.
Finding the only couple in their 40s or their 2 kids is a breeze. Individually identifying their 2 kids is also easy as one is a girl and one is a boy.
Just using the age ranges would identify the only couple in their 70's. This can be repeated for most age ranges.
The list goes on:
My street has just one lady with a debilitating cancer, just one asian lady, just one afro-Caribbean lady. Just 1 adult living with their parents so that individual's sexuality is easy to discover; just 1 house with with an armed forces attributable disability, 2 houses with markers for armed forces veterans, only one house that has two veterans and only 1 house with a serving military marker. Clearly I am only scratching the surface here as there are many more ways to strip the anonymity, but you get the point.
There is no direct legislation for this gross intrusion, where your data can and will be sold through 'NHSX' to make money for the Treasury and the companies that can monetise it for a profit. The government is relying on a few disparate clauses in other unrelated Acts of Parliament, adding them together and giving the Health Secretary direct control by making an order to the NHS that relies on a Statutory Instrument that was not written for such a purpose.
It is a legal mess with no oversight, no parliamentary scrutiny, no legislation, no appeals process and an arbitrary timeline when the entire nation was expected to opt-out in a window of just several weeks (since been delayed a bit), otherwise the government will 'presume consent' on an issue that they worked hard not to advertise to the public.Land Rover - Turning Drivers into Mechanics Since 1948
Member Since: 13 Oct 2014
Location: Nottingham
Posts: 1785
One of the problems from my point of view, is there is no right to be forgotten.
Let me explain :
If you opt out before the cut off date, all is well. Your data will not be shared. (In theory, but who is monitoring?)
If you opt out after the cut-off date, anything shared up to that point is not recalled, only data added after the date. There is no mechanism to recall or delete the data.There are two rules for success,
1. Never tell everything you know.
D4 gone!
D5
23rd Jun 2021 1:08 pm
Robbie
Member Since: 05 Feb 2006
Location: ¯\_(ツ)_/¯
Posts: 17932
Apparently no right or method at all. An example given elsewhere was a patient waking-up after months on a ventilator could find all their data being harvested with assumed consent whilst in a medically induced coma. Another example was a possible RN boat surfacing post CASD patrol to find they had all missed an NHS deadline.Land Rover - Turning Drivers into Mechanics Since 1948
Member Since: 13 Oct 2014
Location: Nottingham
Posts: 1785
How will people without internet access, or less technically savvy opt out?
I know there is a link to how to opt out on the web page via phone, etc. but they can't access a web page.There are two rules for success,
1. Never tell everything you know.
D4 gone!
D5
23rd Jun 2021 1:59 pm
JordsDisco
Member Since: 22 May 2020
Location: Newcastle
Posts: 1616
I have to be honest, personally they can have mine, however I do want a percentage of the fee charged.
23rd Jun 2021 2:15 pm
pjm-84
Member Since: 04 Oct 2016
Location: Hampshire
Posts: 2592
Can have mine as well. Not a lot on there.
23rd Jun 2021 2:19 pm
Minemapper
Member Since: 28 Apr 2021
Location: Yarm
Posts: 92
An interesting perspective on this that was shared by a friend in the medical community.
Not getting into the politics of that but wanted to consider the purpose of health data sharing and propose that this is the digital equivalent of being an organ donor. Data sharing is to help save other peoples lives (and your own in 20 years time) via insights gained. As a community of health technology and consulting professionals, perhaps we can help make the case before tabloid hysteria encourages the popular vote to veto what is likely vital to improve all of our health outcomes.
23rd Jun 2021 2:38 pm
RRSTDV8
Member Since: 07 Apr 2014
Location: Here
Posts: 13553
If it was only being used to further development of treatment in the NHS, many would be less concerned. But there is no guarantee that the politicians won't see it as a cash cow and sell the data to all and sundry. Once it's sold to, e.g. a US drug company, it's in the wild and there will be no way to control what is used, by whom and for what purposes. HMG could have dealt with that in the legislation but appear to have left the stable door wide open for the horse to bolt out through.Visiting from rrsport.co.uk
2012 RRS SDV6
2008 RRS TDV8
"When you fire that first shot, no matter how right you feel, you have no idea who's going to die! You don't know who's children are going to scream and burn. How many hearts will be broken. How many lives shattered. How much blood will spill, until everybody does what they were always going to have to do from the very beginning: SIT DOWN AND TALK!"
23rd Jun 2021 2:50 pm
Madrilleno
Member Since: 13 Oct 2014
Location: Nottingham
Posts: 1785
Minemapper, if the data was used solely for the inferred purpose, yes. However, take a look at these cases,
How long before the lines are blurred, and your 'anonymised' data is shared with an organisation who can reverse engineer it to give the original recipients details.
Would you send me a copy of your medical records please? After all, I am better known to you through this forum than any of the people who will access your digital record. I promise I'll look after it.
If you won't trust me, why would you trust any number of complete strangers.
The flavour of your acquaintance's argument runs perilously close to, "If you have done nothing wrong, you have nothing to fear."There are two rules for success,
1. Never tell everything you know.
D4 gone!
D5
23rd Jun 2021 2:50 pm
integrale
Member Since: 10 Mar 2008
Location: Aarhus
Posts: 230
Of course, in the EU this use of data would probably constitute a violation of the GDPR
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