Did you know...?

[onthemove]

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.

https://www.bbc.co.uk/iplayer/episode/m ... s-1-3-data
"The emergence of ingenious and dogged fact-based research, data mapping and analysis has made tremendous improvements in public health. (...) Epidemiologist William Farr identified the importance of medical statistics in the 19th century when he began studying cholera mortality reports in London."


Interesting program, starts off explaining how back in the 19th century, scientists gathered together data about who got ill with cholera, combined that with data about where those patients lived, and then linked this together with data about which water companies supplied water to which areas of London, leading to the discovery of the source of the cholera outbreak.

Fast forward to the 21st century, and instead of embracing the opportunity to accelerate data gathering to help scientific research, here we are with people seemingly determined to prevent scientists from getting their hands on such data today.

The level of anonymity that people seem to be demanding (for example, concern about where people live being disclosed) would mean today's scientists analysing the data potentially wouldn't even be able to make the same links that scientists were able to make in the 19th century.

Is that really where we want to be?

Not even matching the 19th century?

[servodude]

here we are with people seemingly determined to prevent scientists from getting their hands on such data today.

I thought the concern was the with it falling in to the hands of insurers and their ilk, not scientists or medics.
Consider the current situation with CPAP compliance data;
- in some parts of the world patients pay over the odds through their insurance for a device, and locked in consumables,, even before any "rebate"/subsides are withdrawn if they fail to use it successfully
- https://www.propublica.org/article/you-snooze-you-lose-insurers-make-the-old-adage-literally-true

I'm all for data in the right place for the customer - but if the medical data is with actuaries not medics the customer becomes the product

-sd

[XFool]

Fast forward to the 21st century, and instead of embracing the opportunity to accelerate data gathering to help scientific research, here we are with people seemingly determined to prevent scientists from getting their hands on such data today.

I think you are missing the point. My concern with this is not that medical "scientists" in the UK will use the data under UK laws, for medical research to the benefit of the NHS and its patients. Rather it is that such patient data 'escapes' from the UK into the US system, to be used by who knows whom for who knows what reason. Possibly even to the long term detriment of the NHS.

It isn't so much the certainty of all this, rather it is the uncertainty surrounding this affair encouraged by the seeming lack of clarity and publicity with which it is all being rushed through.

[servodude]

Fast forward to the 21st century, and instead of embracing the opportunity to accelerate data gathering to help scientific research, here we are with people seemingly determined to prevent scientists from getting their hands on such data today.

I think you are missing the point. My concern with this is not that medical "scientists" in the UK will use the data under UK laws, for medical research to the benefit of the NHS and its patients. Rather it is that such patient data 'escapes' from the UK into the US system, to be used by who knows whom for who knows what reason. Possibly even to the long term detriment of the NHS.

That's the crux of it
I suspect it's only a matter of time... despite what BJ et Al say.. before the NHS is carved up for sale.
At which point my heel prick data is up for grabs
...and then...

I have no problem with data shared in the right way
- I do it a lot myself professionally (couple of decades in data capture across a few disciplines)
- but I have occasionally found it to have been used in ways that I would have not condoned (CPAP compliance as I mentioned earlier being a potential problem that arose before people were aware of the issues)


-sd

[Sunnypad]

Posters have mostly covered my concerns

But there are others

Large datasets are now used to fuel the precautionary principle ad nauseum while people who are actually in pain are left with a long wait to see a GP.

Doctors have given me and family incorrect treatment because they get too involved in risk factors and likelihoods. In fact I'd quite like to scrub my data so they'd be forced to say "starting from scratch, why is this lady experiencing shoulder pain" for example.

The algorithms deciding you are more likely to have x condition because you live in y postcode are going to go into overdrive.

I haven't seen my medical record lately but the last time I did, quite a lot of stuff was wrong as well.

Being able to track the water supply to an address is not the same as selling the most personal data about someone.

[XFool]

More articles. Both from The Guardian!

Your medical records are about to be given away. As GPs, we’re fighting back

The Guardian

GPs in England have been told to hand over all patient data to NHS Digital – potentially to be exploited for corporate profit


The Tories have worked out how to pull off an NHS data grab: do it during a pandemic

The Guardian

Taking data from patients in England was so unpopular in 2014 it had to be shelved. Now it’s happening without the scrutiny

[XFool]

Tell me how you’ll use my medical data. Only then might I sign up

The Guardian

We need more transparency before offering up our health information

[swill453]

Being delayed until 1st September, I hear.

Scott.

[Sunnypad]

Yes

https://www.bbc.co.uk/news/uk-politics-57400902

Now that's a rare plus. More time to get the word out etc.

[XFool]

The topic continues, elsewhere: viewtopic.php?p=628948#p628948

[XFool]

Revealed: Chinese researchers can access half a million UK GP records

https://www.theguardian.com/technology/2025/apr/15/revealed-chinese-researchers-access-half-a-million-uk-gp-records

Medical information will be available from UK Biobank, despite western intelligence agencies’ security fears

"Preparations are under way to transfer the records to UK Biobank, a research hub that holds detailed medical information donated by 500,000 volunteers. One of the world’s largest troves of health data, the facility makes its information available to universities, scientific institutes and private companies. A Guardian analysis shows one in five successful applications for access come from China."