The UK approach to patient privacy with electronic health records

Britain toughens patient privacy

We're unlikely to get such strong protections; historically US law does very little to protect privacy. It's nice to know someone's doing it however. In practice using the full power of these restrictions would be unwise for almost any patient, but it's easier to loosen such rules than to tighten them later. Emphases mine.

The United Kingdom's Health Department published tough new rules to guarantee that patients in England can control access to their electronic health care records in a system under development by the National Health Service.

The NHS National Programme for Information Technology kicked off a 10-year, $10 billion project in late 2003 to develop a nationwide e-health record (EHR) system for 50 million patients and 30,000 doctors in England. It would not cover Scotland, Wales or Northern Ireland.

The NHS Care Record Guarantee, published May 23, will allow patients to prevent information in their records from being shared, Health Ministry officials said. But the quality of care could deteriorate if patients block information sharing.

The health record guarantee also states that:

* Patients will be able to obtain a list of everyone who looks at their records.

* NHS will not share information outside the agency, particularly with other government agencies.

* Records will only be shared with health care providers or social service or education organizations with patient permission.

* NHS will take disciplinary action against anyone who accesses health records without permission or a good reason.

The new NHS electronic Care Records Service “has enormous potential benefits for patients," said Lord Warner, UK health minister. The system allows medical staff throughout England to have instant access to patient histories, including allergies, current medications and recent treatment.

Warner said the department developed the new privacy rules to address any patients’ concerns about the confidentiality of their records.

The Care Guarantee clearly establishes the rights of patients to control who has access to their information, Warner said. "These rules will be backed up with tough security measures to prevent unauthorized access to records, ensuring everyone can have confidence in the new system," he said.

National Provider (physician, pharmacist, etc) Identifier assignment system - Not quite ready yet!

National Plan & Provider Enumeration System - Home Page

As of May 23rd physicians and other healthcare "providers" are supposed to start obtaining their unique ID numbers that are the basis for many future healthcare transactions. I figured I'd give it a try.

It didn't work. I entered my UPIN number around step 5 or so and the server crashed (I noticed in the state drop down list that MN was in an odd location, not quite alpha-sorted):

Internal Server Error

The server encountered an internal error or misconfiguration and was unable to complete your request.

Please contact the server administrator, you@your.address and inform them of the time the error occurred, and anything you might have done that may have caused the error.

More information about this error may be available in the server error log.

Additionally, a 500 Internal Server Error error was encountered while trying to use an ErrorDocument to handle the request.

Hmm. A few teething problems! Another bad sign was the initial login. They use the "secret question" method for password recovery, the approach favored by 99/100 crackers and identity thieves.

Evangelical america

False Prophets

Surely there is no subject on which more words are currently being said with less real meaning than that of the intersection of religion and politics in America. And that is why you ought to read a recent New Republic piece by the indispensable Alan Wolfe, who cuts through the fog like a search-light.

In the format of a review of Jim Wallis' much-discussed God's Politics, along with a collection of case studies of religio-political cooperative ventures, Wolfe pens a long, eloquent and often angry essay about the growing willingness of evangelical Christian leaders to reject the liberal principles of tolerance, pluralism and church-state separation that made the growth of their own tradition possible in the first place...

.... As you may know, in the Judeo-Christian tradition one who takes a prophetic stance believes the moral and spiritual conditions of a society have become so depraved that the faithful are obliged to step outside the normal bounds of civility and respect for authority and call down the righteous wrath of God. Taking a prophetic stance is by definition exceptional; occasionally essential, but always spiritually as well as politically dangerous. And that is why true prophets are so greatly honored, and false prophets are so feared and despised...

Two interesting and thoughtful discussions -- both Wolfe's article and the above commentary. Wolfe doesn't mention the history of catholicism as a state religion, but from what he does write I gather he'd agree with me.

Google Earth vs MSN Earth - the next battle in mass market earth imaging

So now it's Google vs. Microsoft to own the earth: MSN Virtual Earth To Take On Google Earth.

To be fair to Microsoft, they've had TerraServer around for ages. They just didn't use it very well. Now they know how.

And where is Amazon's business photo project? I couldn't find any St. Paul business with a neighborhood image.

The Economist's Millenium edition is now available online (five years later)

Reporting on a thousand years

It only took them a few years, but the Economist has put their justly famed 'Millenium Issue' online. I came across it by accident; on review it's even better than I remembered. Well worth a quick browse for fans of history and economics. This was one of my all time favorite articles.

Identity theft: almost hopeless

Data at Bank of America, Wachovia, others compromised - May. 23, 2005

Account information on the customers was illegally sold by bank employees to a man identified as Orazio Lembo, whom police said was doing business by illegally posing as a collection agency.

When police in Hackensack, N.J., first announced arrests in the case on April 28, they estimated that more than 500,000 people were affected. That number was raised to 676,000 Friday. Because some people have more than one account, Hackensack Police Chief Charles "Ken" Zisa says the number of accounts breached may top 1 million.

"As this gets going, these numbers are going to go up and up," Hackensack Detective Capt. Frank Lomia told CNN earlier Monday, adding that more arrests may be coming in the case.

One of the most interesting thefts of this kind involved a legal purchase of such information through a legal "front" bank. This is crude by comparison.

It does emphasize, however, how hopeless the situation is. It is not coincidental that fingerprint scanners are being integrated into some supermarket checkouts.

If they were smart, the feds would hire Bruce Schneier to devise a solution.

Revenge of the Sith -- not so bad, really

No really, not so bad. Lucas manages to resolve a few of the gaping holes in the plot of the original series and I found the dialog less painful than expected. It's probably the second best movie of the six, behind The Empire Strikes Back.

No spoilers, but a few side notes. I think I saw the Millenium Falcon in one scene, it's entering a massive docking area towards the lower level. The relationship between Chewbacca and Han Solo is neatly inverted; perhaps Chewie was not on Han's ship by accident. R2D2 knows more than one might suspect. Lastly Lucas compensates a bit for Episode IV's (first movie) dismissive portrayal of adoption; a change possibly related to his own adopted children.

Prior to the movie, I recommend reading this ver well written and amusing blog - The Darth Side: Memoirs of a Monster: 20050403. I'm now convinced the author is not really in the pay of George Lucas, but he seemed to have some advanced knowledge of some of the minor secrets of 'Revenge of the Sith'.

15 answers to creationist nonsense and the outcome of one theocratic sta

Science & Technology at Scientific American.com: 15 Answers to Creationist Nonsense -- Opponents of evolution want to make a place for creationism by tearing down real science, but their arguments don't hold up. (July 2002)

A useful reference if you want to try to fight for the enlightenment. Personally I'd be happy to settle for protecting the teaching of science and introducing an hour a day of mandatory Republican theology. That solution, at least, would have the virtue of honesty. Grrr.

But ...

Much as I may fume about America's latest 'awakening', and our transition towards a theocratic society, it's worth noting that I was born into a true theocratic state. The result should be a warning to American fundamentalists opposing the separation of church and state.

I was born in Quebec, a state-within-a-nation ruled by the Catholic church. Quebec was a true, classic, theocratic state until the 1960s, when church rule collapsed and the province underwent the fastest 'demographic transition' in the history of the west. I think it was called it the 'quiet revolution', but it's largely unknown outside of the province. Except for a convulsive episode of terrorism that killed at least one man the transition was relatively benign.

In my childhood all education was religious, and although they were retiring several of my high school teachers were still priests and nuns. My high school world history text proclaimed the just wonders and miracles of the Children's Crusade -- I was too honest to steal a copy, but I wish I had one now. I did have real science teachers (and good ones too), but my favorite nun knew me (fondly actually) as the 'ape man'.

What was the outcome of this theocratic rule? Empty churches, no priests, and a profound cyncism about religion. Quebec is slowly recovering but the church is still a spent force 40 years after the revolution.

American fundamentalists should take note. Victory may turn sour.

We will have national health insurance in america

Decoding Health Insurance - New York Times

A physician long opposed to both personal health insurance and national health insurance changes his mind thanks to the pending arrival of very inexpensive individual risk measures through genetic testing. He feels that so many people, rich and poor alike, will be unable to obtain health insurance that there will be no alternative to national risk pooling:

... As a doctor I have always been against health insurance except for catastrophic care and for the very poor. It has been my experience that the doctor-patient relationship is the most personal and rewarding for both the patient and the doctor when a clear, direct fiduciary relationship exists. In such a circumstance, both individuals value the encounter more, which invariably leads to more time, more attention to potentially important details, and a higher level of patient compliance and satisfaction - all of which invariably result in a better outcome.

But with the end of pooling risk within defined groups, there is only one solution to the problem of paying for health care in the United States: to pool risk for the entire nation. (Under the rubric of health care I mean a comprehensive package that includes preventive care, acute care and catastrophic care.) Although I never thought I'd advocate a government-sponsored, obviously non-profit, tax-supported, universal access, single-payer plan, I've changed my mind: the sooner we move to such a system, the better off we will be. Only with universal health care will we be able to pool risk for the entire country and share what nature has dealt us; only then will there be no motivation for anyone or any organization to ferret out an individual's confidential, genetic makeup.

On the one hand, it's hard at first to see why bad genes should be much different from all the other bad luck that denies health coverage to many people. The difference is that this 'bad luck' strikes Republicans as well as Democrats. So I agree, there will be some sort of obligatory risk pooling, and it may turn out to be hard to use any criteria but citizenship to define the covered pool.

BTW, I agree with him on the pernicious effects of health insurance on the doctor-patient relationship.

Derivatives for the small investor

Update 5/22/05: One of the most important things a small investor may need to hedge against is a fall in t0day's overinflated housing markets.

In addition to HedgeStreet (below), which is up and running, a usenet thread suggested two articles:

• Ken Harney – New securities product to hedge your house’s value
• and this WaPo article: How to Hedge The Value Of Your Home

The products referred to in the articles are not available yet (Macro Markets LLC is a dismal holding page), so for now HedgeStreet seems to be the only current option for hedging home prices. I don't know how retail investor friendly these products will be. In practice retail investors may need a few months of protection (transient ownership of two homes) or a couple of years of protection (short term ownership or plan to sell prior to fund retirement).

Marginal Revolution: Derivatives on housing prices

Macro Securities Research, a company affiliated with Robert J. Shiller, the Yale economist, has reached an agreement with the Chicago Mercantile Exchange to list pairs of derivative instruments that are essentially index funds linked to home prices in certain markets. One instrument in each pair will rise as its market index rises; the other will rise as the same index falls. That will let investors bet on the direction of housing prices. Similar, but less sensitive, vehicles are being offered by HedgeStreet, a firm in San Mateo, Calif., that offers small-scale derivatives speculation online.

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I wonder how the accounting will work. I'd rather use my 401K investments to hold these small-investor derivatives.

Blog news: Bloglines and Blogger on the mend

I use Bloglines (Yahoo Ask Jeeves owned) (thanks Jessica for the correction) as my blog (rss, syndication, atom, etc) reader and blogger/blogspot (Google owned) as my cross-platform (Firefox >> Safari) authoring tool.

Both have had their problems. Blogger has been by far the worse, and I've looked seriously at moving somewhere/anywhere else. So, after 3 weeks of good service, I'm happy to say Blogger is doing far better than they were. Maybe they've turned the corner.

Bloglines has been pretty good, but about 5 months ago they moved to a very annoying version of the public view of one's bloglines collection. It was such a step backwards I took the link to that view off my news page. Now I can happily report that they've silently reversed course and reinstated the old view. I've restored the link to my bloglines collection.

Not all progress is backwards! Now if Blogger would only fix their Safari support, add blockquote to the BlogThis! widget, actually index the blogs more frequently than every other month, and put a shortcut to the full editor from the screen that appears when one submits a draft ...

Climate Change: The Elizabeth Colbert New Yorker review

The New Yorker: Fact

The review is now freely available. I believe Minnesota has been significantly affected. The Twin Cities used to be at the southern end of a very cold band of weather along with the Canadian prairies, in the past five years this band has moved north of us. Our winters are substantially warmer; the difference isn't a few degrees of global warming, it's a shift to Iowa's weather. For my part this is not an improvement; the temperature range of 30-40F is boring and fat inducing (neither reliable ice/snow nor comfortable bicycling).

BTW, I came to this page via Philip Greenspun's blog, which I've just added to my collection. I'm still discovering excellent writing and new blogs, even as some of my old favorites (Boing-Boing) are going through a boring patch.

The war on Newsweek: Frank Rich strikes back

It's All Newsweek's Fault - New York Times

Frank Rich demolishes the Bush administration. Again. It's so easy to do it's boring, but for the sake of history someone has to do it.

The preponderance of evidence is that interrogators, torturers and bored guards mistreated the Koran to annoy and infuriate their prisoners. That is hardly surprising, they are average young men, often incredibly stressed, and often not well supervised. I also recall reading over the years (more than one source) that this sort of 'psy-op' is reasonably successful with some subjects. It is likely some version of (ex. the dog policy) was included in official or semi-official policy about 'acceptable torture'.

The Bushies decided to use this chance to jump on Newsweek, currently owned by an old enemy -- The Washington Post. Frank Rick trashed them.

George Bush is going to make Bill Clinton's legacy look golden.

The media matters: keeping the army slighly less dishonest

Army Faltered in Investigating Detainee Abuse - New York Times

The armies investigations of torture and misconduct have been very lethargic, except when the mainstream media intervenes:

...While the proposal to close the case was ultimately rejected by senior officials, documents show that the inquiry was at a virtual standstill when an article in The New York Times on March 4, 2003, reported that at least one of the prisoner's deaths had been ruled a homicide, contradicting the military's earlier assertions that both had died of natural causes. Activity in the case quickly resumed.

The news media, battered and in disrepute, still matters.

The spouses view of a terminal disease

BBC NEWS | UK | Magazine | After Ivan

Ivan Noble died undefeated. His BBC diaries became a book, and now his wife Almut, a cancer researcher, has spoken to the BBC about her experiences:

After Ivan

In Ivan Noble's tumour diaries, published on this site until his death earlier this year, one woman was often mentioned but never identified. As a book of his columns comes out, and a bursary remembering him is launched, his wife Almut has decided it's time to talk...

... One of the things Ivan and I used to talk a lot about was time. In 2002, about two months after Ivan's diagnosis and just after he'd started writing his diary, we heard a psychologist say something very striking. He said people see their lives like an arch - going up and then stretching on some time into the future.

He said that when you face a potentially terminal illness, this whole view into the future breaks off, and people don't know how to deal with that - they're terrified.

That's exactly how we felt, there was no certainty any more. You lose the concept of yourself as a person because you have no idea what's going to happen in a few months or years.

Then you try to live with this uncertainty and really focus on living in the present, on what's happening now. This is tough work, though, because you have to watch what you say and even watch what you think.

Every day, you find you can't just think "We'll do this some time" - if you plan for anything ahead, you have to catch yourself. I would find myself saying things - "maybe in a couple of years we'll do such and such" - and then wishing I hadn't said it. Having to watch your every thought is one of the things that makes it really physically exhausting to live in this way.

You also lose all sense of restraint - you don't see the point. It was very tough but it enabled us to do things we wouldn't have done otherwise.

It was a time of extreme emotions in both directions - it was extremely sad and terrifying, but at times we were extremely happy. I know the past two-and-a-half years were quite exceptional; I also know it wasn't all bad...

... for me the real irony was that it happened at this particular point in our lives; that was the really tough part. We were just at the top of what we'd been hoping for ever. We had found the jobs we always wanted to do. We had just started our family. It was all going wonderfully well and then this happened.

It's dangerous to think about "why?" There are really no causes known for these types of cancer, so there's no point agonising about whether he could have prevented it by doing something differently. At the end of the day it's just bad luck.

Humans probably just have to accept that people get cancer - but I don't think we have to accept that people will die from cancer. We can do something about that - there have been incredible advances in treatment, and a lot of cancers can be cured.

Our bodies are so incredibly complex that you just have to accept that there is a possibility of something going wrong. That's just what it is. Something goes wrong. It's your own body, it's nothing from outside...

Like A Hole In The Head: Living With A Brain Tumour is published by Hodder on 23 May. The BBC's proceeds will go to Medecins Sans Frontieres UK, the charity chosen by Ivan.