The Consumer Product Safety Commission is demanding that hospitals share extensive private medical data with a private contractor.
Lisa Needham at Daily Kos:
One of the worst things about the Trump administration is the warping of government agency missions, stripping them of their ability to help people and converting them into ways to harm them instead.
The latest—and extremely worrisome—move comes from the Consumer Product Safety Commission, which is supposed to track and recall dangerous products. Instead, agency officials are using their authority to demand that hospitals share extensive private medical data with a private contractor.
The CPSC has been sending letters to major hospital systems, demanding that they give a private company the personally identifiable medical records of everyone who visits their emergency rooms. There isn’t really even a pretense that the supposed watchdog agency is doing this to track whether certain consumer products are disproportionately resulting in injuries, which is what it was created to track. Instead, this requires reporting on pretty much everything—broken bones, overdoses, suicide attempts, adverse reactions to medications, and so on.
Hospitals have been participating in CPSC voluntary surveillance reporting for years, but that’s not what this is. The way that surveillance is supposed to work is that trained hospital workers provide data on injuries caused by specific categories of household products, typically stripped of any identifying data. The CPSC’s own manual instructs hospitals not to provide any identifying information at first, and stipulates that the agency only gets that data when following up on a product investigation, which the manual says happens in under 1% of the cases.
The manual also specifies that only certain types of emergency room visit data are to be shared, and excludes injuries from food, medical devices, illegal drugs, or anything that doesn’t involve a consumer product. The current demand from the CPSC is for pretty much everything.
This is getting pushed as “modernization” of surveillance for product safety issues. The agency brags about how cool and great it will be just to have the government automatically scan everyone’s medical records, and then it will magically save lives.
By demanding medical records from ER visits that have nothing to do with injuries from consumer products, the Trump administration is making it pretty clear it is just using the CPSC as another tool in its quest to put Americans under constant surveillance.
More creepiness from the Trump Regime: the Consumer Product Safety Commission is demanding that hospitals share extensive private medical data with a private contractor.
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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:
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?"):
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:
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:
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:
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.
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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:
Image request: A stylized graphic depicting a doctor’s handwritten notes transforming into neatly organized digital ICD codes. Use vibrant colors to represent data flow and efficiency. Subtle visual cues indicating the complexity of medical language being translated into structured data.
Healthcare data is exploding, and at its core lies patient diagnosis information, crucial for everything from…
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Instead of creating more goddamn patient portals that we have to log into before we can fill out paperwork or review test results or fetch physician’s notes, why don’t y’all work on standardizing medical data so it’s not like pulling teeth from a duck to get you to share records with each other? 
Another huge US medical data breach confirmed after Fortra mass-hack
Hackers stole another half a million people’s personal and health information during a ransomware attack on a technology vendor earlier this year.
Intellihartx, a Tennessee-based company that handles patient payment balances and collections, said in a notice filed with the Maine attorney general’s office that 489,830 patients had information stolen in the cyberattack targeting its vendor,…
