UK peas, NHS data share opt out

Be wary of anything involving Palantir. Opt out.

I expect health data is worth a fortune . Will they be selling it ?

I just came across this regarding breaches and information scandals from the NHS and govt.
medconfidential.org/for-patients/major-health-data-breaches-and-scandals/

I don’t know which other countries have nationalised medicine, I think perhaps Norway does .

I can see how such a resource could be valuable in healthcare in some ways if used in the right way but I also think it could used in other detrimental ways that will work against patients rights. 
I think this is a beginning of a slippery slope.

Well, NHS handed over its data to Amazon before for free. People need to ask why. For Alexa to give medical advice? Don’t be too sure that’s all it’s for. Amazon has plans to get into the business of healthcare.

Not everything is suspect, of course. But it’s always about money. Somebody is going to make money and lots of it.  These initiatives may sound harmless or even noble when they’re initially communicated to the public, but it’s a good idea for the public to research first before giving consent. Once data is handed over there is no control anymore of which third parties can be given access.  

Sorry, I didn't see this earlier.

There are many articles about this company, especially their relationship with Cambridge Analytica.  But just to narrow the focus, I'm providing one that's specific to the controversy in the UK:  Campaign launches to try to force Palantir out of Britain’s NHS

lizacreates

I had a look at the link and the company involved sounds extremely dodgy. 

quote from the article -

“It’s built its business supporting drone and missile strikes, immigration raids and arrests, not the delivery and care of medicine,” Lewis told CNBC. “It’s got a questionable agenda, and I think that will have a negative impact on patient trust,


I have a feeling that a number of things will have gone under the radar and slipped in during the pandemic hoping people would not notice.

To be fair they didn't hand over DATA similar to what we are discussing here to Amazon. They gave them access to the health information, symptoms, causes, and definitions that is freely available to everyone in the UK via the NHS website  but not available outside of the UK, to support the questions Alexa is asked here in the UK. No personal medical data was passed on which is what the main point of this thread is. Should they have given it for free - no not in my opinion but I haven't read the contract they had in releasing the information and it's subsequent use by Amazon.

Found this additional page , following the NHS opt out link from Huff Post above.

It lists circumstances where they can override opt out consent , so even if you state you do not want info shared , it looks like they have ways they can work around it.

your-data-matters.service.nhs.uk/privacynotice

Kings fund according to wiki is a public think tank , joining forces with Glaxo Smith Kline in giving awards.
I am not 100% sure regarding their charitable status  but I think some academic institutions including colleges operate their finances this way. 

In 2017 I became aware of the work they have done in the field of pilot projects for CCG’s to provide services for M.E within the persistent physically unexplained symptoms framework . Their recommendations were based on the now recognised medical scandal of the PACE trial.

I am not familiar with the rest of their work , but their work citing trials involving CBT and GET ,
cognitive behavioural therapy and graded exercise has mislead patients by telling them it would improve their health , when in fact it made them worse.  Kings fund supported the now discredited research, which even NICE deem to be of very low quality and now warn against it within the new draft guidelines (NOV 2020 ) for
M.E.  www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline

The Kings Fund initial pilot project has lead to regional services that are now acknowledged to be harmful for people with M.E.
I hope that when final version of NICE guidelines come out in August , that this “service”
will no longer apply.

This thread is not about M.E I know but as Kings Fund was raised as support for data sharing in this thread I think their past activities are relevant.

I can’t really comment on other things they support like data sharing because I don’t know the details but as an organisation I have very little faith in them based on the small amount of information that I know.

edited to add - as pointed out to me  when referring to data sharing I should have said privatisation instead.
 

We have different opinions and thoughts on the matter and will leave it at that.

I have got their analysis of privatisation muddled up with data sharing , you are correct ,but my opinion about them remains.

The details can be found here.

www.kingsfund.org.uk/sites/default/files/media/Elspeth_Desert.pdf


As I said before , such recommendations are no longer condoned due to patient harm as documented in the NICE draft guidelines dated NOV 2020. Heads of this guideline committee are as follows -

Chaired by Dr Peter Barry, Consultant Paediatric Intensivist
( specialising in the care of critically ill children )

And Vice Chair
Baroness Ilora Finlay , Consultant in Palliative Medicine
( to improve the quality of life , mitigate suffering , amongst people with serious complex and life threatening illnesses )

www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline



I think that the NHS can be excellent in many respects, but there are groups of patients who have been badly let down.


Getting back to the main topic -
The proposed data sharing can affect many more people, no matter what patient group they fall into .

I think it is important to be fully aware of the potential implications.

Mean’t to link this above