#uk medic

[mostlysignssomeportents]

Palantir’s NHS-stealing Big Lie

I'm on tour with my new, nationally bestselling novel The Bezzle! Catch me in TUCSON (Mar 9-10), then SAN FRANCISCO (Mar 13), Anaheim, and more!

Capitalism's Big Lie in four words: "There is no alternative." Looters use this lie for cover, insisting that they're hard-nosed grownups living in the reality of human nature, incentives, and facts (which don't care about your feelings).

The point of "there is no alternative" is to extinguish the innovative imagination. "There is no alternative" is really "stop trying to think of alternatives, dammit." But there are always alternatives, and the only reason to demand that they be excluded from consideration is that these alternatives are manifestly superior to the looter's supposed inevitability.

Right now, there's an attempt underway to loot the NHS, the UK's single most beloved institution. The NHS has been under sustained assault for decades – budget cuts, overt and stealth privatisation, etc. But one of its crown jewels has been stubbournly resistant to being auctioned off: patient data. Not that HMG hasn't repeatedly tried to flog patient data – it's just that the public won't stand for it:

https://www.theguardian.com/society/2023/nov/21/nhs-data-platform-may-be-undermined-by-lack-of-public-trust-warn-campaigners

Patients – quite reasonably – do not trust the private sector to handle their sensitive medical records.

Now, this presents a real conundrum, because NHS patient data, taken as a whole, holds untold medical insights. The UK is a large and diverse country and those records in aggregate can help researchers understand the efficacy of various medicines and other interventions. Leaving that data inert and unanalysed will cost lives: in the UK, and all over the world.

For years, the stock answer to "how do we do science on NHS records without violating patient privacy?" has been "just anonymise the data." The claim is that if you replace patient names with random numbers, you can release the data to research partners without compromising patient privacy, because no one will be able to turn those numbers back into names.

It would be great if this were true, but it isn't. In theory and in practice, it is surprisingly easy to "re-identify" individuals in anonymous data-sets. To take an obvious example: we know which two dates former PM Tony Blair was given a specific treatment for a cardiac emergency, because this happened while he was in office. We also know Blair's date of birth. Check any trove of NHS data that records a person who matches those three facts and you've found Tony Blair – and all the private data contained alongside those public facts is now in the public domain, forever.

Not everyone has Tony Blair's reidentification hooks, but everyone has data in some kind of database, and those databases are continually being breached, leaked or intentionally released. A breach from a taxi service like Addison-Lee or Uber, or from Transport for London, will reveal the journeys that immediately preceded each prescription at each clinic or hospital in an "anonymous" NHS dataset, which can then be cross-referenced to databases of home addresses and workplaces. In an eyeblink, millions of Britons' records of receiving treatment for STIs or cancer can be connected with named individuals – again, forever.

Re-identification attacks are now considered inevitable; security researchers have made a sport out of seeing how little additional information they need to re-identify individuals in anonymised data-sets. A surprising number of people in any large data-set can be re-identified based on a single characteristic in the data-set.

Given all this, anonymous NHS data releases should have been ruled out years ago. Instead, NHS records are to be handed over to the US military surveillance company Palantir, a notorious human-rights abuser and supplier to the world's most disgusting authoritarian regimes. Palantir – founded by the far-right Trump bagman Peter Thiel – takes its name from the evil wizard Sauron's all-seeing orb in Lord of the Rings ("Sauron, are we the baddies?"):

https://pluralistic.net/2022/10/01/the-palantir-will-see-you-now/#public-private-partnership

The argument for turning over Britons' most sensitive personal data to an offshore war-crimes company is "there is no alternative." The UK needs the medical insights in those NHS records, and this is the only way to get at them.

As with every instance of "there is no alternative," this turns out to be a lie. What's more, the alternative is vastly superior to this chumocratic sell-out, was Made in Britain, and is the envy of medical researchers the world 'round. That alternative is "trusted research environments." In a new article for the Good Law Project, I describe these nigh-miraculous tools for privacy-preserving, best-of-breed medical research:

https://goodlawproject.org/cory-doctorow-health-data-it-isnt-just-palantir-or-bust/

At the outset of the covid pandemic Oxford's Ben Goldacre and his colleagues set out to perform realtime analysis of the data flooding into NHS trusts up and down the country, in order to learn more about this new disease. To do so, they created Opensafely, an open-source database that was tied into each NHS trust's own patient record systems:

https://timharford.com/2022/07/how-to-save-more-lives-and-avoid-a-privacy-apocalypse/

Opensafely has its own database query language, built on SQL, but tailored to medical research. Researchers write programs in this language to extract aggregate data from each NHS trust's servers, posing medical questions of the data without ever directly touching it. These programs are published in advance on a git server, and are preflighted on synthetic NHS data on a test server. Once the program is approved, it is sent to the main Opensafely server, which then farms out parts of the query to each NHS trust, packages up the results, and publishes them to a public repository.

This is better than "the best of both worlds." This public scientific process, with peer review and disclosure built in, allows for frequent, complex analysis of NHS data without giving a single third party access to a a single patient record, ever. Opensafely was wildly successful: in just months, Opensafely collaborators published sixty blockbuster papers in Nature – science that shaped the world's response to the pandemic.

Opensafely was so successful that the Secretary of State for Health and Social Care commissioned a review of the programme with an eye to expanding it to serve as the nation's default way of conducting research on medical data:

https://www.gov.uk/government/publications/better-broader-safer-using-health-data-for-research-and-analysis/better-broader-safer-using-health-data-for-research-and-analysis

This approach is cheaper, safer, and more effective than handing hundreds of millions of pounds to Palantir and hoping they will manage the impossible: anonymising data well enough that it is never re-identified. Trusted Research Environments have been endorsed by national associations of doctors and researchers as the superior alternative to giving the NHS's data to Peter Thiel or any other sharp operator seeking a public contract.

As a lifelong privacy campaigner, I find this approach nothing short of inspiring. I would love for there to be a way for publishers and researchers to glean privacy-preserving insights from public library checkouts (such a system would prove an important counter to Amazon's proprietary god's-eye view of reading habits); or BBC podcasts or streaming video viewership.

You see, there is an alternative. We don't have to choose between science and privacy, or the public interest and private gain. There's always an alternative – if there wasn't, the other side wouldn't have to continuously repeat the lie that no alternative is possible.

Name your price for 18 of my DRM-free ebooks and support the Electronic Frontier Foundation with the Humble Cory Doctorow Bundle.

If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2024/03/08/the-fire-of-orodruin/#are-we-the-baddies

Image: Gage Skidmore (modified) https://commons.m.wikimedia.org/wiki/File:Peter_Thiel_(51876933345).jpg

CC BY-SA 2.0 https://creativecommons.org/licenses/by-sa/2.0/deed.en

#pluralistic #peter thiel #trusted research environment #opensafely #medical data #floss #privacy #reidentification #anonymization #anonymisation #nhs #ukpoli #uk #ben goldacre #goldacre report #science #evidence-based medicine #goldacre review #interoperability #transparency

[banrionceallach]

So Charles Windsor has been diagnosed with cancer.

Condolences to the UK public who will be seeing their taxes paying for another ridiculously lavish funeral followed by a ridiculously lavish fancy-dress party, uh coronation, for William sooner rather than later.

#uk politics #the man can afford the best medical care in the world #so if they caught it early enough he'll prob go in to remission #and be as okay as you can be after surviving cancer in your 70s #but even cancer care is rough on the body #so I'm not sure he'll last the decade anyway

[sadisticnstoned]

Just something about smoke in the sunlight…

#mine #london #weedlife #weed community #weedporn #weedstagram #weedsociety #weed queen #weed prince #weed strains #uk medical cannabis #cptsd recovery #just cptsd things

[rhube]

I think this one is pretty important, folks. UK ppl please sign. Others, please boost!

It's frankly nightmarish how manufacturers of medical implants operate!

We believe it should be made illegal for manufacturers of medical devices implanted into patients to regularly charge the patient for upgrades or maintenance.

We also believe it should be a legal requirement that if the manufacturer goes out of business, all the Intellectual Property (IP) - both hardware and software - for the device must be made public.

We believe no one, and no company, should be allowed to essentially charge rent for any implant that is placed inside a person's body, and people should not be left with a device that cannot be maintained if its manufacturer goes bankrupt.

#disability #medical implants #petition #uk politics

[reasonsforhope]

"Caring for a pet helps stave off cognitive decline for people over 50 who live on their own, according to a new study of almost 8,000 participants.

Researchers found that pet ownership was associated with slower rates of decline in verbal memory and verbal fluency among the older adults who were living alone.

The study included 7,945 mostly-white British participants from the English Longitudinal Study of Ageing with an average age of 66.

Followed over an eight year period, more than a third of the group (35.1 percent) owned pets; about 30% of the group lived alone.

Previous studies suggested that solitary living is a risk factor for developing dementia and cognitive decline, but among those folks, raising dogs or cats was related to reduced loneliness.

Some research has found that pet ownership is associated with better verbal memory and executive function, but others failed to find any evidence.

The new research published in JAMA Network aimed to further explore the association between aging by oneself—a trend which has been on the rise over the past few decades—and pet ownership. And the results were clear.

“Pet ownership offset the associations between living alone and declining rates in verbal memory and verbal fluency,” said study corresponding author Professor Ciyong Lu, of Sun Yat-sen University in Guangzhou, China.

It was “a significant modifier” in all 3 associations—composite verbal cognition, verbal memory, and verbal fluency.

“Pet ownership was associated with slower rates of decline among older adults living alone.”

But owning a cat or dog did not make any difference for older people who lived with other people.

“These findings suggest that pet ownership may be associated with slower cognitive decline among older adults living alone.”

Prof. Lu is now calling for clinical trials that could help inform public health measures to address dementia among the elderly."

-via Good News Network, November 30, 2023

#dementia #alzheimers #neurology #neuroscience #medical news #aging #cognitive functions #psychology #healthcare #memory #united kingdom #uk #good news #hope

[bloodheartz]

I'm gonna be real tf2 fans will post their "take of the century" abt Medic and it'll just be another rant showcasing their fundamental misunderstanding of him as a character. No he doesn't actively torment/torture his team. No he's neither your grimdark edgy sexyman or misunderstood bean who doesn't really want to hurt people 🥺. He's just like. A fucked up guy who is filled with whimsy and would like idk, click his heels in joy after seeing an enemy team members guts splattered across the ground and go scoop it up in delight.

#sorry im just really tired of overly edgy medic interpretations AND yaoi uke 'soft boi' medic interpretations #when his character is much more interesting and enjoyable as is #he's fucked up and he's silly! just like every other tf2 merc #tf2 #medic tf2 #tf2 medic #team fortress 2 #team fortress 2 medic #medic team fortress 2

[uncanny-tranny]

You can be opposed to taking DIY hormones yourself, but don't treat trans people who DIY like they're stupid or they're uneducated. Oftentimes, people DIY because there are no other options for them. What you do about people who DIY is basic harm reduction - that means educating as many people as possible about the safest ways to monitor hormone levels, how to inject safely if they're taking injectable hormones, teaching people about common signs of hormone imbalance, among other things.

DIY hormones already have risks, and people who DIY know that. The least you can do is not shame them or treat them like they're stupid because they DIY. Again, people will often DIY as a last resort because trans healthcare is rapidly being targeted.

#trans #transgender #lgbt #lgbtq #ftm #mtf #nonbinary #also like... DIY testosterone is already a felony for those in the US/UK/many other countries so there's huge risk #it just blows my mind how heartless people get about DIY hormone users. do you not get WHY people DIY? #i don't DIY but i understand that *need* to have medication and how hopeless that feels to not have it available #i hate when these discussions open back up because people go for the throat it feels like

[beaft]

saw a new gp last week who was visibly very uncomfortable about me being trans. today i find he has cancelled the testosterone prescription i ordered and will not approve any further orders until i set up an appointment with him to "discuss why i need it". ok! 👌

#being trans in the uk means being constantly terrified that someone will take your medication away just because they don't like you

[tieflingkisser]

Thousands of disabled people died after ‘covid treatment withheld’, inquiry to probe

Thousands of disabled people who died from Covid in the early weeks of the pandemic may have been denied intensive care treatment in NHS hospitals that could have saved them, campaigners and bereaved families believe. The Covid inquiry has been handed evidence from charities and bereaved family groups showing that Do Not Resuscitate notices (DNARs) were placed on the medical files of many people with Down’s Syndrome, autism and other learning disabilities who were otherwise healthy before contracting the virus. These notices, often placed without the patients’ understanding or consent, say charities, were due to those with learning disabilities being wrongly classed as “clinically frail” in the NHS in the initial weeks of the pandemic in March 2020. Lady Hallett’s inquiry is expected to investigate whether so-called “ward-based ceilings of care” – meaning a patient was kept on a general ward rather than admitted to ICU, even if their condition deteriorated – were applied arbitrarily to the disabled, as well as older patients, in a bid to ease pressure on the NHS. The evidence is likely to form a key part of Module 3 of the inquiry, which focuses on the healthcare response to the pandemic and is being held in public this autumn. The Department of Health and NHS England have long denied there were blanket protocols in place for DNARs for groups of people, and have said these policies should not be used by trusts.

[keep reading]

#covid #ableism #medical ableism #uk #news

[18thcenturythirsttrap]

In the UK? Email your MP - save Gaza's hospitals (and if not in the UK, please share)

Everyone in the UK - Medical Aid for Palestinians want us to keep the pressure up on our MPs (who should, whatever they might think, represent their constituents) to press the UK Government on the protection of Gaza's hospitals and a permanent and immediate ceasefire.

Emailing might do no good but it can't do any harm, and it lets our MPs know that we're not indifferent to the stance they take on Palestine.

Find your MP and email them here - it takes about half a minute:

And then please share, share, share!

(Also, please share this even if you're not in the UK but have mutuals or followers who might be).

#palestine #stand with palestine #uk politics #medical aid for palestinians

[haridraws]

sorry to bother you, i saw your 2022 hourly comic post today and i first want to say thank you because it’s really my exact situation in so many ways, right down to being apart from my partner (haven’t gotten to see her since the start of the pandemic since we’re both disabled and public transport is a covid nightmare but we’re on the council housing waitlist so hopefully eventually!) and it means a lot to not feel alone in that. i wanted to ask about the mobility chair that helps you sit up if that’s okay? i have a simple bed setup but being able to sit in the living room with the sun and a view is nice, but i can’t sit up unsupported for long and i can’t really like Do Anything and also sit upright bc the sitting up is all my energy, so a chair like that might be something to save for if you could maybe tell me about it! also does it have support for the neck/head? i think my spine is getting compressed from not being able to sit up for so long lol but i might be able to find cushions for that so that’s less essential!

anyway, sorry to ramble on! no pressure if you can’t manage a reply, the fact that i know about such chairs now is helpful so thank you either way!! and probably very belated but i was scrolling your blog and happy to see you have a place with your partner, so congrats! take care and all the best to you both!

thank you for this message, v sorry you're in the same boat as I was. Answering properly and publicly in case this is useful for anyone else:

Stuff I personally use to make being bedbound more comfortable

obligatory disclaimer I am not a doctor, stretching or moving your body a little (see 18) if or when you can is probably good, etc.

1. SPECIAL FURNITURE The chair I have NOW is a "riser recliner" and I usually add a small pillow for lower back (and sometimes head) support. Like adjustable beds, they're whole furniture with powerful (HEAVY) motors built in, so they're expensive. They're usually cheaper:

if you don't need to be tipped out (just power recliners, though they might recline less or provide less support)

from regular shops, not mobility ones.

If you're able, you can go into a store and try one out first (personally being taken in a wheelchair was worth the strain, because it was weirdly hard to predict what back shape would be comfy).

if you're in the UK and you're 'chronically sick or disabled' you can get them VAT-free to make them 20% cheaper - mobility stores will have a form, others you might have to ask / check the shop does it

(I got one I could lie flat in, that came with a free setup service in the 'room of my choice'.)

It still took me 8 years of illness mostly stuck in bed to get both chair and bed because of (a) the price (b) not being sure I was sick enough to "deserve" it, same with my wheelchair. THIS WAS A FOOLISH WAY OF THINKING. There's no threshold required to get devices that will make your life easier / less agonising. Mobility aids are for anyone who'll be helped by them.

2. ADJUST EXISTING FURNITURE WITH WEIRD PILLOWS Special furniture will obviously not be possible for everyone, and before I got the chair, I just used a combo of regular pillows and a triangle wedge pillow in bed (though it took trying 2 different wedges to find one that was a good shape for me.)

Last year someone ( @dont-break-hearts I think? THANK YOU) recommended me this shape cushion - some start at £15 on that site. That's now what I use to sit on a regular sofa, though I also always need my legs up at the same height (tall footstool now, but a sideways dining chair works ok) so it's closer to lying down.

These aren't 100% ideal - ymmv, I still need extra cushions and any position gets stiff after a while - but for me are WAY BETTER than just layering pillows or forcing myself to sit up.

#asks #disability #sorry for this long answer lol. but this is the info i needed several years ago so hoping it might help someone #this is all about the UK but I assume these things exist other places #disclaimer this is not medical advice....... I also never received ANY medical advice about this so... it's just what worked for me

[crystem]

Help out a struggling intersex girl?

The NHS will prescribe utrogestan to perisex women for reasons caused by low progesterone such as fatique, night sweats, suicidal ideation increase, and more. Yet, when this comes to intersex women, they refuse to offer the same prescription on the NHS forcing the intersex woman to go private, even when it is medically necessary for the intersex woman. - it's a discriminatory practise.

So... help an intersex girl out so she CAN get necessary medication privately?

#money things #intersex #UK NHS #UK NHS Sucks #intersexism #medical #medical vent #medical malpractice #donations #donate

[satans-knitwear]

Grabby hands 🍑

Treat me ~ Tip me

#Today sucks 😭😭😭 medication withdrawl day 3. But tomorrow i start my shifts at the animal shelter and i cant let them down!!! #So. Lets focus on the good things. Like my 🍑 #What a delightful 🍑 it is. #satans knitwear #Alt pinup #Pinup girl #🍑 is served. #🍑 take a bite. #White lace lingerie #Lace top stockings #White stockings #Holdups #White lingerie set #bi girl #uk girl #cheeky #wlw

[jack-kellys]

star trek au vision board

reckless captain jack. emotionally repressed half human first officer david. do no harm take no shit chief medic crutchie. do we understand

#me when i pin a post after months of not changing it. #i wanna try n do three strange new worlds esque ‘episodes’ for minibang so. #these r all actual screen caps from the 60s show. btw. it was this gay #newsies #newsies aus #jack kelly #davey jacobs #crutchie morris #newsies fanart #fizz draws #fizz freaks #newsies uk #i guess. sure #newsies art #star trek au #davey come get ur juice #crutchie and davey rivalry is fun and unexplored in this fandom so i'm takin it #i Would make it racer but a) racer whiz kid chekhov is soooo. good. b) race is not a medic character in the least in my brain #also crutchie is crutchie so i'm centering him duh

[k-i-l-l-e-r-b-e-e-6-9]

Carcass

#Carcass #metal #death metal #death/ grind #uk #Themes:Death #Gore #Pathology #Medical #Humour #Politics #Society #Genre:Goregrind/Grindcore (early); Melodic Death Metal/Death 'n' Roll #jeff walker #bill steer

[reasonsforhope]

A surgeon who carried out the UK’s first womb transplant on a cisgender woman has said similar transplants for transgender women are probably about 10 to 20 years away.

In February, Imperial College London professor, James Smith, and his colleague, Isabel Quiroga, from the Oxford Transplant Centre, carried out the womb transplant on a married woman whose 40-year-old sister was willing to donate her own, having already given birth to two children.

The 34-year-old recipient, who lives in England and wishes not to be named, received the transplant during an operation lasting more than nine hours at the Churchill Hospital, in Oxford.

It is hoped that, in the future, womb transplants can be performed on trans women, giving them the chance to have a baby, but Smith said the reality of this is still decades away.

There is currently no “technical feasibility” to perform the operation on trans women due to a difference in the pelvic and vascular anatomy, the shape of the pelvis and issues with the microbiome – the network of micro-organisms that live in the human body, he explained...

Dr Narendra Kaushik, a surgeon in the Indian capital New Dehli, said in May 2022 that transplanting uteruses into trans women is “the future."

Uterine transplants are currently rare, costly and experimental surgeries that typically rely on donor organs. They are often done on people born without a uterus so they can become pregnant and give birth.

The first successful womb transplant took place at the University of Gothenburg in Sweden in 2014. Two years later, the operation was carried successfully once more in the US.

About 50 babies have now been born worldwide as a result of womb transplants.

Kaushik, who has 15 years of experience in gender-affirming surgeries, said: “We cannot predict exactly when this will happen but it will happen soon. We have our plans and we are very optimistic.”

-via PinkNews, August 23, 2023

#lgbtq #transgender #trans issues #trans women #trans healthcare #gender affirming care #trans rights are human rights #medical transition #organ transplant #organ donation #trans femme #united kingdom #uk #sweden #terfs are gonna have a fucking aneurysm and personally I can't wait #medical news #good news #hope