#medical data

[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

[ifitistobeitisuptous]

#virginia usa #medical data #period tracker

[officermaddie23]

Blue Avian Creature

Name: Max 

Species: Skink and Sphynx Macaw hybrid 

Max was rescued by Jax Dawn and brought to the dragon master’s technology facility for healing and recovery from trauma. When Max first arrived he was incredibly thin and there was evidence of unethical experiments performed on him. 

The Medical Scientist assigned to him Known as Dr Norberrt even reported that this was one of the toughest cases he dealt with in his life and he was a war medic. It was reported that Dr Norberrt had to leave the room to compose himself. 

Max had to go through multiple surgery procedures anesthesia was given as scientists and surgeons are required to administer them. He pulled through the surgeries and manages to live a happy life. 

The only problem he faces is Nightmares and mild flashbacks but we can confirm that Max has been improved a lot from his fear struck state.      

#Deviant the renegades #Max #Dragon Masters Technology incorperated #Lab Files #Medical data

[orbitbrain]

Novant Health Says Malformed Tracking Pixel Exposed Health Data to Meta

Novant Health Says Malformed Tracking Pixel Exposed Health Data to Meta

Home › Endpoint Security Novant Health Says Malformed Tracking Pixel Exposed Health Data to Meta By Ionut Arghire on August 22, 2022 Tweet Healthcare services provider Novant Health has sent notifications to more than 1.3 million individuals that their protected health information (PHI) might have been inadvertently exposed to Facebook parent company Meta. Novant Health, which operates a network…

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#breach #data breach #data exposure #Facebook #healthcare #medical data #Novant Health #patient information #PHI #tracking pixel

[stuckinapril]

the neurologist i shadow is so funny bc she has a valley girl accent and yet she's the smartest person in the room. this woman was casually doing case consenus ab a man w frontotemporal dementia in the highest girliest voice imaginable. i want to be her i think

#case consensus is basically where several neurologists/doctors meet to decide what the patient's case actually is #im genuinely not sure why this medical center does it this way but they write down data on paper THEN input it into the digital system #which i have qualms w bc i feel like it wastes so much time #but literally my whole role at this internship is inputting this data into the system so i should probably be grateful they do it this way #but in that one meeting everyone was all over the place so this at the ending of the meeting this woman goes #“that... was frantic.” #in the most valley girl accent known to man #and ever since ive integrated this as my response to everything #youre right. that WAS frantic #she also was like “sorry im unfocused. need lunch rly bad” at one point during the meeting #this neurologist is just like the rest of us fr

[deliciousdietdrpepper]

I love the episodes of Star Trek where all the humans get Space Plague or Spacetime Sickness and it’s up to the android/hologram/alien-crew-mates to save everyone because it demonstrates just how instrumental diversity is on a spaceship where who knows what could happen. If I was in charge of the ship roster there would be such a diverse crew that most incidents wouldn’t cause major havoc. All the humans on the ship are dying? Congrats, 80% of the crew are on the job trying to cure you. Need to send everyone to sleep while traveling through a toxic nebula? No worries! You have several crew members to assist you in ship functions and crew medical assistance. It’s objectively strange that star fleet should be 90% human and the only thing I can think to justify it is how many hours the makeup artists need to do their job well.

#this is a data/emh/t’pol positive post if it wasn’t clear 😌 #star trek #t’pol #lt commander data #data soong #emh #Star Trek emh #emergency medical hologram #Star Trek the doctor

[rebellum]

I feel like... Perhaps... Arguing that transphobia is defined by murder and that anything other than murder doesn't even matter... May NOT be conducive to fighting for trans rights.

Like... people want the right to exist as they are. They want to have access to hrt and surgeries and prosthetics. People want access to clothes that fit them and reflect how they want to be seen. People want access to medical care (eg. Getting screened and treated for sex-based forms of cancer can be impossible if you have the "wrong" sex listed to receive those tests). People want to be respected and treated well. People want to not be sexually assaulted and beaten and abused. People want to have access to housing and jobs, and the protection to not lose those things for being trans. People want access to shelters for homeless people or survivors of domestic abuse. People want name changes.

Acting like all of those things don't matter because at least they weren't murderered by an individual (and instead die of suicide or state violence, or survive and suffer) isn't okay.

#'hey people are forcibly detransitioning you and raping and beating you and you lost your job and are going to be homeless and #probably die of infection from being stabbed for trying to go to the bathroom. but at least you arent part of a demographic that has a #higher murder victim rate! shhh just ignore that we dont actually have data on the murder rate of your group.' #do ppl like. forget state based violence exists. and that thats most violence minorities face. #idk man im just. mad about people on here acting like youre only oppressed if youre a perisex trans woman who was AMAB. #cause i exist at the intersection of multiple minorities and being told hey u experience violence but at least you wont be murdered by an #individual feels like a slap in the face. #like it doesnt matter if i have to mask my neurodivergent behaviour bc if people see they could assume im on drugs and call the police and #i could potentially be really hurt but not die but hey at least i wont die just be horrifically traumatized by police brutality! #there are millions of people with mental illnesses similar to my own around the world who are institutionalized and forcibly medicated or #living on the streets or dependant on horrifically abusive caregivers #but hey at least they arent being murdered! #like. the way the transphobia discussion on tumblr rn discusses (and doesnt discuss) race and ability and class and health makes me #feel very invisible. #like if people had to choose who to believe about my experiences between listening to me a black/mixed mentally ill maybe disabled (used to #be disabled) hella nd trans nonbinary person #or listen to a white middle class trans woman's take on my experiences that theyd choose her. its such a weird weird microcosm. #its like a monkeys paw like people are finally listening to trans fems and finally recognising the violence they experience and finally #actually caring about them but for some reason decide that in order to do that its necessary to throw every other minority under the bus #like fuck man have you seen how 'anti transandrophobia truthers' discuss race? its NOT okay #we all matter we all are so similar and are part of the same groups and same communities we need to stick together #stop using trans fems as a battering ram to hurt other minorities challenge #cause like. yes its some trans fems. but its mostly NOT? #like its non trans fems telling other non trans fems that they arent oppressed #and even when many trans fems are like what the fuck dude of course other trans ppl matter whats wrong with you #the group of like 80% non trans fems 20% trans fems are like 'hmm if you are defending other trans people you must not really be trans fem' #like. denying trans fems their identity bc they disagree with them?? dude someone doesnt stop being a trans fem cause they recognise #people other than trans fems matter and exist #its just all so WEIRD its a weird little tumblr microcosm #i wanna stress. for those of you who dont have access to other lgbtq+ communities. how much it seems to be primarily a tumblr thing. to

[dorimi-3]

スタートレックTNG・ピカード完結＆データ復活記念☆

(06/22/2023　ツイッター用に入れ替えたものを追加しました。ピカード関連でまとめていたのでトゥボックははずせなかった…！）

#Star Trek TNG #startrek picard #star trek voyager #star trek lower decks #Data Star Trek #borg queen #kathryn janeway #emergency medical hologram #Seven of Nine #annika.hansen #Geordi La Forge #raffaela musiker #Worf #William T. Riker #guinan #beverly crusher #Deanna Troi

[agni-ignition]

#tf2 #team fortress 2 #i think we already know the answer but still #tf2 scout #pyro tf2 #tf2 soldier #tf2 heavy #tf2 demoman #tf2 engineer #tf2 medic #tf2 sniper #tf2 spy #im autistic pls give me data to analyze #mine

[pastaindividual]

Just watched s5 ep2 of Voyager.....

#star trek #voyager #data soong #odo #emergency medical hologram #seven of nine #autism

[irenespring]

Me: I'm going to get back into writing fanfiction for a fun creative writing outlet, while I work on other humanities and social sciences in classwork :) Also me: Has now read at least one official medical study, multiple interest/support group and government reports, and several online testimonials re: House's possible amputation vs. non-narcotic pain treatments sans amputation, and now has a pretty good mental chart going of decidedly STEM things.

I have been tricked into researching STEM. Creative writing has betrayed me.

#house md #gregory house #fanfiction #hatecrimes md #if anyone is interested my research so far: it seems like while phantom limb pain is likely #it is manageable using the same things he would otherwise use + other things not otherwise available #and is more likely to go away and/or be less severe #the study conducted using data from people who suffered multiple kinds of chronic pain shows 81% were glad they amputated #not to mention that the House TV show “we create medical fact” ethos suggests House has a random cure for phantom limb pain #based on that one s6 episode #I now know many weird medical things that I only sort of understand but could possibly be used in writing #Is this what being a House screenwriter feels like? #This explains why some episodes are medically dubious: a bunch of humanities majors with loose grasps of medicine just rolling with it #Anyway I'm still unlikely to write a longer fic about this specific issue unless I do more research over time

[kuebikome]

Trans meds should be released into the Alaskan Wilderness and hunted for sport. Literally the trans gender version of Andrew Tate and pick me girls.

#LIKE there is no place in the expression of a make believe concept for you to become self righteous extremists #you sound like those phrenologists who are like ‘the doctors will know your bone structure when you die’ like using miniscule medical data #like that #LET PEOPLE express their gender however they want it isn’t real #trans med #transmed #trans medicine

[grinchwrapsupreme]

sitting here scanning through research papers about thymomas trying to figure out if Wilson could have had cancer the entire series because i’ve got problems

the answer is yes by the way

#cancer // #medical // #house md #james wilson #so thymomas are slow growing and have been recorded as taking up to TEN YEARS for a tumour to double in size #the problem is #there isnt' a lot of research done on this particular topic #and the studies i can find have relatively low data pools #which makes sense because it's a pretty specific cancer #but that means that pretty well all studies into the doubling time (VDT) of thymomas ALSO include patients #with thymic carcinomas #and thymic cysts #both of which are fast growing #and most papers distinguish between them but some just straight up loop them all together #which is just stupid #so these things combined means what studies i have looked at all have a wide range of VDTs assigned to thymoma specifically #but based on the size of wilson's tumour #it's entirely possible he's had it the entire time we've known him #in fact #i'd call it likely #i am #not a doctor #don't quote me on this

[yel-ashaya]

In VOY 1x06, Kes complains that the EMH isn’t being treated with respect.

Janeway’s response is that “he’s only a hologram” and he’s not “alive”.

I can’t get over how different this is compared to the season 7 episode “Author, Author”, where Janeway stands up for the Doctor’s rights as a sentient being, a la Measure of a Man.

#Star Trek #Star Trek voyager #captain janeway #kathryn janeway #kes #ocampa #eye of the needle #author author #holographic doctor #emergency medical hologram #emh #measure of a man #Star Trek tng #star trek the next generation #the next generation #tng #data #commander data

[aro-culture-is]

quick note - this blog is gonna be sparse again for at least this week. trying new medications and tbh initial side effects are not super pleasant + actual effects build up. as a result: currently as if unmedicated for mental health, with anxiety+ side effect, extra fatigue, dizziness, and fatigue. it's uh, sure something.

totally recognize that most of y'all know we're absent at times due to health things, just wanted to give a heads up that this one is at least anticipated.

#fun fact sometimes condensing meds just means poorer treatment of some conditions #this is a re-expansion + new thing #so that instead of poorly treating my mental health and using an unusually high dose SNRI for another (physical) condition #i will hopefully both be in less pain AND not depressed af AND also have an appetite again #i doubt i will be lucky and not have a fucked stomach due to meds but one can hope that an appetite will allow me to eat foods that upset #my stomach a lot less #my health is forever a massive balancing act #every time a medical thing is like 'so what meds do u take' i'm like here i wrote it down for u #and they're like 'oh. ooookay. let me just...' *five minutes of typing and clicking later* #'so! what did you come in for again? uhuh. you said you experience pain daily? with your chronic pain thing? hm. have you tried yoga?' #/gen #like. straight up every time i say 'i am in pain all the time due to fibromyalgia' they are like 'ooh studies say regular exercise helps' #and like. theoretically yes! but also. i would be lying if i said the fibromyalgia studies i've skimmed don't set off general 'bad science' #alarm bells in my brain #like... cool you performed a fibromyalgia study with... all male lab rats? mhmm? so are you aware fibromyalgia appears to occur #overwhelmingly in women? like. data seems to suggest between 70-85%? #(not that the data can't still indicate things but it certainly makes male rats a poor choice of model for tests on it) #also just... idk i've looked at some metaanalysis and been like 'okay cool theory and for all i know about human bio or bio in general that #sounds more or less correct BUT. you never discussed that one study on this subject that did NOT support your conclusion. #and that's 1) interesting when it was the most diverse group of subjects and the exceptions often teach just as much as the 'rule' #2) just shitty science. tell me how your theory is still credible when some evidence doesn't fit the model. #like... 'given that all other studies were primarily conducted on white american women in their 30s to 40s it is possible that this model #only explains (the early effects of fibro since that's a typical onset period) / (a possible genetic link primarily found in white women) / #(a possible sign of bias in diagnosis that demonstrates the possibility that there are different causes) / combinations of all of those #like... idk a paper that just throws out things that don't support it is a pretty big red flag #it doesn't mean the conclusion is entirely incorrect but it is often important to understand the context in which it applies #like... it's very easy to jump to an incorrect conclusion if you used something in the wrong context #ie: thumbs up is a good job / positive thing in a lot of western civilizations. teenage kee once went to china and discovered it to be #neutral to offensive in many areas outside of major tourist locations that were used to it #anyways i gotta sleep

[heardatmedschool]

“And, of course, the atypical patient is anyone who’s not an anglo white man between the ages 35 to 60”

*Lecturer proceeds to roll eyes*

#medicine #med school #medblr #pharmacology #healtcare #research #data #medical studies #discrimination #pinned