UK set to sell sensitive NHS records to commercial companies with no meaningful privacy protections - UPDATED

The UK government's Health and Social Care Information Centre quietly announced plans to share all patient records held by the National Health Service with private companies, from insurers to pharmaceutical companies. The information sharing is on an opt-out basis, so if you don't want your "clinical records, mental health consultations, drug addiction rehabilitation details, dsexual health clinic attendance and abortion procedures" shared, along with your "GP records, HS numbers, post-codes, gender, date of birth," you need to contact your doctor and opt out of the process.

This is a complex issue. Large data-sets are the lifeblood of epidemiology and evidence-based care and policy, and the desire to extract useful health information from this data is a legitimate one.

However, it's clear that no one involved in the process gives a damn about privacy. These data-sets -- which will be sold on the open market to commercial operators -- are "anonymized" and "pseudonymized" through processes that don't work, have never worked, and are well-documented to be without any basis in reality.

And that's the thing that brings the whole enterprise out of the realm of legitimate scientific project and into the realm of corporatist hucksterism. Once the architects of this project announced that its privacy protections would be based on junk science, they lost any claim they had to operating in good faith.

Effectively, the managers of this programme have said, "We can't figure out how to protect the most private, potentially damaging facts of your life, so we're not going to try." It is pure cynicism, and it makes me furious. It brings the whole field of evidence-based medicine into disrepute. It is a scandal. And as it goes ahead, it will spectacularly destroy the lives of random people in the UK through the involuntary, totally foreseeable disclosure of health information, in ways that make the general public leery of any participation in this kind of inquiry.

If you set about to discredit the open data movement, you could do no better than this.


Update: As if that wasn't bad enough, Noemi adds, "The contract for handling and managing the care data has been given to ATOS. This is the same company whose disability benefit assessment has been found to be flawed and unacceptable in 40% of cases by the Audit Commission." Here's more.

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Horrific plague causes starfish to tear themselves to pieces

A mysterious plague has manifested in the world's starfish population, quickly spreading to several regions in which starfish (also called "sea stars") are found. Starfish afflicted with the disease tear themselves to pieces, the arms crawling in opposite directions until the animals are literally torn to pieces. Unlike healthy starfish, the affected animals are not able to regenerate after they are torn apart.

The disease is largely a mystery. Researchers who are studying it are asking beach-walkers to photograph any starfish they see to tweet photos of it with the #sickstarfish tag. Starfish are important marine predators; a serious depletion of their numbers will have far-reaching consequences for marine ecosystems.

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Med school students assigned to improve most-used medical Wikipedia entries

Dr. Amin Azzam who teaches at the UCSF school of medicine, has created an elective for his fourth year students in which they are assigned to improve the most-used medical Wikipedia entries. Students are given Wikipedia orientation and taught how to be good participants in the project. This is especially relevant given the fact that Wikipedia is the most-used reference among doctors and medical students. The students prioritize the most-cited, most-visited entries, and they are working with wikipedians to have these entries translated into many other languages, as well as adapting it for the "simple English" version of Wikipedia.

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North Carolina's Lake Norman Regional Medical Center charges patient $81,000 for $750 worth of snakebite medicine

Eric Ferguson of Mooresville, NC was given a bill for $89,000 by Lake Norman Regional Medical Center, which treated him for a venomous snake-bite last August. Included in the itemized bill from the hospital was a $81,000 charge for four doses of anti-venom -- the same anti-venom that can be had on Ebay for $750. The hospital and Ferguson's insurer settled for $20,227, of which Ferguson paid $5,400.

Ferguson does not fault the standard of care at the hospital ("beyond phenomenal"), but he is understandably curious about the $80,000+ markup on the medicine with which he was treated. The hospital itself is already under investigation for overbilling.

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Lighting scars on eyes of man blinded by electric shock

A case study in the New England Journal of Medicine details the tragic story of an electrician who received a shock of 14,000V and was blinded as part of his injuries. Accompanying the article is this striking photo of the scars on his eyes, which resemble the plasma ball effects, the sort of thing you'd expect from a science fiction movie.

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Korean plastic surgeon removes towering jars of excised jawbones after fine

A Gangnam, Seoul plastic surgeon who did a roaring trade in excising womens' jawbones to give them V-shaped chins was forced to remove the towering jars of thousands of jawbone fragments with which he decorated his office. Photos of the jars spread online, resulting in a visit from a local official, who fined the surgeon about $3000 and ordered the display removed.

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Join Patrick Costello for a jam session at Johns Hopkins when his hearing implants kick in

Copyfighting banjo teacher Patrick Costello writes, "A few years back you posted about the surgery I had to restore my hearing. Well, doctors at Kohns Hopkins had to replace my original BAHA implant and while they were at it they installed a second BAHA on my left side. On February fourth the devices will be activated and - here is the cool part, given that I'm a musician - I will have something like stereo hearing for the first time since I was a child."

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$1.6M for man who repeatedly anal-probed by NM cops who thought he had drugs

Remember David Eckert, the New Mexico man who got multiple anal probes after a cop decided he must be hiding drugs because a dog "alerted" on him? Well, he's gotten $1.3 million out of the city and county. He's still suing the hospital for its role in his nonconsensual, warrantless enemas, colonoscopy, X-ray, and forced public defecation. If they won't settle, he's prepared to go to a jury trial. You get the impression that Eckert is out to make a point here: if your town cops and/or doctors participate in illegal, sadistic war-on-drugs torture, the victims will take all your money and destroy you, so cut it the fuck out. Techdirt's Tim Cushing has more:

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Health Canada scientists setting up unofficial libraries as national libraries fail

More from the Canadian Harper government's War on Libraries (see also: literally burning the environmental archives). Dave writes, "Health Canada scientists are also facing difficulties with government controlled libraries. It takes an insanely long time for them to receive any materials due to third-party delivery companies; they've started opening up their own unsanctioned libraries and have started taking advantage of external sources (industry and universities). This is turning into an insane story. There's obviously demand for the material within government circles, but policy and cuts are making it impossible to access, resulting in statistics of diminished use, which results in more cuts."

Health Canada used to have 40 librarians. Now it has six.

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Skinless CT scanners are wonderfully science-fictional

It turns out that if you remove the cowling from a CT scanner, you get something that looks like a cross between a Stargate and a whirling Katamari Damacy. It's pretty mesmerizing to watch.

Nostril-wedged maggots of Portsmouth: Otorhinolaryngologist's expert opinion explained

More on yesterday's story about a nasal-wedged maggot scare in Portsmouth, RI's middle school (refresher: the Portsmouth Middle School sent parents a terrifying letter warning of a student Smartie-snorting epidemic and predicting that children would end up with maggots in their noses that feasted upon the sugar residue).

John McDaid, the investigative blogger who broke the story, tracked down Dr. Oren Friedman, Associate Professor, Otorhinolaryngology at the University of Pennsylvania, who was quoted in the letter the school sent home as warning that "frequent snorting could even rarely lead to maggots feeding on the sugary dust wedged inside the nose."

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Medical makers: 3D printed prostheses, junkbot operating theaters, and networked mutual aid


In Paging Dr. MacGyver, Julian Smith profiles a wide range of medical makers, from patients to carers to doctors, each of whom has homebrewed some important piece of medical or therapeutic equipment. From DIY prosthetic limbs to the wonderful Dr Oluyombo Awojobi, whose rural Nigerian clinic is graced with a collection of his brilliant improvised devices built from scrap, Smith makes the case for a networked world where medical needs, ingenuity, and a spirit of mutual aid and collaboration are offering new opportunities for making each other healthy.

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Maker doctor builds his own rural hospital equipment out of scrap

Dr Oluyombo Awojobi founded the hospital at Eruwa, Nigeria, a rural location without consistent access to electricity. Dr Awojobi is an accomplished maker, and over 27 years, he's built a variety of vital medical apparatus out of scrounged materials.

His guiding principles are that devices should be simple and easy to repair, and should not require access to off-site power to run.

He's built an operating table with a foot-pumped jack to raise and lower it, a bike-powered centrifuge, a pedal-powered suction pump made from an inner tube, a corn-cob-powered boiler made from an old propane tank, and more.

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Tremor-correcting steadicam cutlery

Liftlabs makes a $300 cutlery handle that uses stabilization technology to cancel out tremors (such as those arising from Parkinson's disease). It's based on steadicam technology, and in a clinical trial was about 70 percent effective.

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As kids' accidental ODs rise, FDA still won't mandate flow restrictors in medicine bottles


In America, more under-6 kids go to the emergency room from accidental overdose than from car-accidents -- they get hold of medicine and drink the whole bottle. Since 2007, epidemiologist Dr Daniel Budnitz has campaigned for the use of flow-restrictors in children's medicine bottles, which dramatically reduce the likelihood of an OD; manufacturers started adding restrictors to acetaminophen in 2011, but stopped there.

Flow restrictors have not been added to bottles of antihistamines, ibuprofen, and cough and cold preparations -- even where they contain the same concentration of acetaminophen as plain acetaminophen tinctures. These other medicines account for about half of all overdoses by small children.

In a long, investigative piece, Pro Publica and Consumer Reports exhaustively document the effectiveness of restrictors, the intransigence of bottom-line-focused pharmaceutical manufacturers, and the real risks of children's medicine overdoses.

An FDA mandate would solve the problem of liquid overdose at the stroke of a pen, but the FDA refuses, preferring a voluntary approach that is demonstrably not working -- and putting kids at risk. The incidence of overdose in small children is not only widespread -- it's rising. Flow-restrictors are cheap, effective low-hanging fruit. Restrictors were invented to improve dosing and reduce spills in adult medicine, and are thus of benefit to everyone, not just parents.

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