Key aspects of Palantir's Federated Data Platform lack legal basis, lawyers tell NHS England
theregister.com/2024/09/05/...
I am sure many of us are aware of Palantir and its place in the world. This article is interesting and brief !
[ Admin added title of what is linked to help members decide whether to read. ]
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As medConfidetial says at the end of the article the nhs will delay and deny the rights patients have over their own data for as long as possible. This data becomes dangerous when it is wrong. They compare it to the horrific post office scandal. Also the company’s link to spyware should prohibit it from being allowed too. It appears the nhs is no longer interested in having to have a legal basis. With the way it treats whistleblowers and blacklists patients it appears it never was.
Please, tell me more re: "It appears the nhs is no longer interested in having to have a legal basis. With the way it treats whistleblowers and blacklists patients it appears it never was."
I wholly agree, on a personal basis, but is there any information, anywhere on this?
If you look at another recent post called medical negligence you can see the link to the private eye article on whistleblowers. Called shoot the Messenger. How they are silenced and sacked. Also patients legal experiences against the NHS show there is nothing legal about it. They are dishonest, attack the victim which results in more even more distress. Again shoot the messenger. This is their tactics even when the patient just wants improvements, greater safety and change. Panorama last year had a programme on this. One patient was hidden as he said otherwise his treatment could be stopped.
Thank you so much for this. (I was 'blacklisted' 29 years ago.)
First complaint ever re NHS treatment went in a few months back - dissatisfied with response - I've responded to that. Interesting.
change.org/p/stop-power-hun.... This is an old petition, out of date but shows blacklisting is systemic also in US and Canada. Also gaslighting and bullying.
Yes, this goes on and beyond the individual doctors that we see, like school children they pass it about. Arrogance generally stems from ignorance!
The NHS whistleblower is persecuted! Says BBC. No doubt the patient too, for even less. Just complaints to PALS!
Appalling - goes on much of the time. People too afraid to speak out because they know the consequences they may well face. I was self-employed... still got it in the neck! There is scant in the way of law to protect individuals against 'the system'... all P in the same pot!
Appalling - a few decades back people used to see as 'common knowledge' that we have freedom of speech! Never really have had but it satisfies those wishing this to be seen as a 'free country', whilst ruling their 'plebs'. In fact, there is little difference between the old Russian ways - speak out of turn and you'll be put in a mental institution - and that which actual, sick, patients still face today.
Yes here it is covert, believe we have freedom of speech. Now one has to find the real news else where. Neil Oliver, Bret Weinstein, newspaper The Light, togetherorganisation.org. Democracy Now. I am finding Those who have joined forces to work together. Hopefully they will show a way forward. As it can be hard to find!
Thank you for this Marz! Confidentiality of medical data is something that has concerned me for some time. Perhaps I am paranoid but I have concerns about reasons why NHS’s in many countries send stool sampling tests for colon cancer detection when most of these authorities have a huge backlog of illnesses and operations that require attention. Perhaps the main intention is patient data collection? Unless folk are made aware of just where their medical information is going then no one suspects there very well could be a problem of over sharing or even just sharing. This is not made clear to patients. Apparently Covid data has been shared by our governments with the pharmaceutical companies but does the general public know this?
I recently discovered that my county has now got its own record sharing wheeze, where NHS records are shared among different depts across the county and there's a possibility that local councils and voluntary groups coud be involved. This was kept very quiet, the only reason I knew about it was I spotted a leaflet in my surgery.
There was no consultation process and no opt out option. You can opt out apparently but have to give a reason which will then be ' considered'. Nice of them.
I can just about accept that different NHS databases need to be able to access each other. I know a few years ago staff at one hospital about 20 miles away where my mum was sent for rehab couldnt access mum's records from the main hospital, which was ludicrous.
So a more cohesive and joined up system would be better, but why all the secrecy, why announce it as a fait accompli? Why not hold consultations pointing out all the benefits. And why are councils and voluntary groups onboard, they have no right to sensitive medical information. It seems very underhanded.
It greatly concerns me that the NHS seems to regard our records as their personal property, to be sold to the highest bidder. They have a very poor track record when it comes to protecting and keeping our data safe.
YES! Reading them can be frightful!
Hi Marz,
Thanks for posting this article.
Did you know Palantir has links to Donald Trump?
TTxx.
I think it's more complicated than that !
Yep it is.
Absolutely! If I can't opt out, I'm seriously considering not using the NHS at all. I don't want my data shared at all and definitely don't want Palantir's grubby little paws anywhere near it. (I work in IT.)
There was a push to centralise personal data a few years ago, linked to an ID card. It was all kept very quiet until someone blew the whistle and a lot of people said they would withhold all data. What shocked me was who would have access to it - the police and local councils would, and having been on the local council, I know the gossip that goes on!
The number of breast ops I have had is not police business!
It all quetly went away, but the data gathering never stops and will happen one day. I wont be around but it is worrying.
I have qualifications in data security. As I was told at the time, NO computer is safe, even if it is wrapped in concrete at the bottom of a quarry!
Data is a priceless commodity it seems...
Especially NHS data, our cradle to grave publicly funded healthcare system ( in theory anyway) makes our medical records pretty much unique in the world and they are priceless to various companies who want to get their sticky fingers on them.
Its always sold as an advantage to us patients, for research purposes etc, to further the cause of medical breakthroughs, but like many I have grave concerns.
About who its being sold to, what they'll do with it, how anonymised it truly is. And is this a slippery slope, who else will be granted access to it?
No, no, no…on principle our own health data should be private, but also because from what I’ve seen of my records they are a mixture of inaccurate and deliberately altered! I’d probably very happily give permission for legitimate medical researchers to use the correct data, but not bodies who sell data off!
Apart from my privacy concerns with the NHS giving access to my data to others, another factor is that I know so much of my data is inaccurate. So when my treatment at the hands of the NHS is ever based on my records I know I'm in trouble.
I know, for example, that my records have warning flags on that suggest that I'm a hypochondriac and drug seeker, and those flags have been there since I was a teenager. I'm now in my 60s.
When I have a face-to-face appointment with a doctor I know there is a good chance I'll get the brick wall treatment, the rolling eyes, the scowls, the silent treatment.
Nowadays I only attempt to see a doctor if I have a health problem that is visible. It's pointless if my problem is invisible because I'm disbelieved and fobbed off. So why would I want my records to be spread around multiple companies?
If the NHS is privatised and I have to buy health insurance the price will be based on my records. And I doubt I'll be able to afford the insurance.
All very concerning. I suffered with lower back pain in my early teens - late 50's. I was at boarding school and travelled 11 miles by bus to the hospital to see someone. My Mum travelled to meet me from the opposite direction. It was entered into my notes that it was 'emotional' as I was able to see my Mum ! This of course hindered progress in the future and at a young age I realised no-one was listening...
hachette.co.uk/titles/rages...
A new book by a doctor called unheard. Her experience when in hospital and in great pain. She is calling for change. But So have many before. Unfortunately like in the post office and infected blood scandal nothing changes.
The book sounds very interesting, but it's a bit pricey for me. Even the Kindle version is expensive at £12.99.
Unfortunately, books like this, however good they are, make no difference in the big scheme of things. They tend in the main, to be read by people (like us) who already 'get it' because they've 'been there'. They're rarely read, and even more rarely taken on board by the perpetrators of the problem.
These days, forums like this, where people share their experiences, horror stories and willingly help each other for free, are more useful (in my opinion).
Yes Marz it is alarming that a spyware company is given our data. One might deduct that a spyware company is more likely to use this data in their best interest not ours. When this data is so easily changed and falsified it can quickly be used against us. As NHS tactics appear to be shoot the messenger as stated in the private eye article this becomes dangerous and it gives them even more control, which is what this appears to be about.
The rate and way things are headed, seems to be increasingly hidden. Like medical data now with Palantir. One might question why they do not want us to know, until it’s a finished deal. Think Neil Oliver might have something to say about that and the PCR
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How concerned should I be?
goitre - should I be concerned?
should I be concerned 
