Real-Life Bruce Banners, Uncounted (Transparency Matters, #2)

The worst part about folks being crippled and dying from medical radiation accidents is that no one is keeping track of how many there are.  This isn't just gradual radiation poisoning; in one case, a linear accelerator accidentally burned a hole in a woman's chest.

“I just had a big hole in my chest,” she would say. “You could just see my ribs in there.”

Details of these cases, says the Times, "have until now been shielded from public view by government, doctors and [hospitals]."  It gets better:

The Times found that while this new technology allows doctors to more accurately attack tumors and reduce certain mistakes, its complexity has created new avenues for error — through software flaws, faulty programming, poor safety procedures or inadequate staffing and training. When those errors occur, they can be crippling...

Regulators and researchers can only guess how often radiotherapy accidents occur. With no single agency overseeing medical radiation, there is no central clearinghouse of cases. Accidents are chronically underreported, records show, and some states do not require that they be reported at all.

These are folks that are literally being killed by software glitches and operator error.  This kind of behavior is one of the reasons I rail against privacy, especially the corporate privacy that shields the medical industry from public scrutiny.  Without transparency, we can't find out who's being hurt, where the mistakes are made, who's making them, or why.

But you might think these errors are exceptions to the rule, and are quickly and transparently corrected.  Nope.

In June, The Times reported that a Philadelphia hospital gave the wrong radiation dose to more than 90 patients with prostate cancer — and then kept quiet about it. In 2005, a Florida hospital disclosed that 77 brain cancer patients had received 50 percent more radiation than prescribed because one of the most powerful — and supposedly precise — linear accelerators had been programmed incorrectly for nearly a year.

So, the courts should take care of this, because the victims will be suing like crazy ... right?

“My suspicion is that maybe half of the accidents we don’t know about,” said Dr. Fred A. Mettler Jr., who has investigated radiation accidents around the world and has written books on medical radiation.

Identifying radiation injuries can be difficult. Organ damage and radiation-induced cancer might not surface for years or decades, while underdosing is difficult to detect because there is no injury. For these reasons, radiation mishaps seldom result in lawsuits, a barometer of potential problems within an industry.

The Times article lays out the details of several botched cases, with the eerie precision of a horror movie.

The lesson, then, is that patients have to be careful to choose responsible providers.  Only, nobody knows the good guys from the bad guys:

Patients who wish to vet New York radiotherapy centers before selecting one cannot do so, because the state will not disclose where or how often medical mistakes occur.

To encourage hospitals to report medical mistakes, the State Legislature — with the support of the hospital industry — agreed in the 1980s to shield the identity of institutions making those mistakes. The law is so strict that even federal officials who regulate certain forms of radiotherapy cannot, under normal circumstances, have access to those names.

Even with this special protection, the strongest in the country, many radiation accidents go unreported in New York City and around the state. After The Times began asking about radiation accidents, the city’s Department of Health and Mental Hygiene reminded hospitals in July of their reporting obligation under the law. Studies of radiotherapy accidents, the city pointed out, “appear to be several orders of magnitude higher than what is being reported in New York City, indicating serious underreporting of these events.”

The Times collected summaries of radiation accidents that were reported to government regulators, along with some that were not. Those records show that inadequate staffing and training, failing to follow a good quality-assurance plan and software glitches have contributed to mistakes that affected patients of varying ages and ailments.

It keeps getting better.  Apparently, the privacy of incompetent therapists is more important than preventing malpractice:

In 2008, at Stony Brook University Medical Center on Long Island, Barbara Valenza-Gorman, 63, received 10 times as much radiation as prescribed in one spot, and one-tenth of her prescribed dose in another. Ms. Valenza-Gorman was too sick to continue her chemotherapy and died of cancer several months later, a family member said. The therapist who made those mistakes was later reprimanded in another case for failing to document treatment properly.

The therapist not only continues to work at the hospital, but has also trained other workers, according to records and hospital employees. A spokeswoman for Stony Brook said privacy laws precluded her from discussing specifics about patient care or employees.

And, yeah, the regulators gathering this information are toothless:

Fines or license revocations are rarely used to enforce safety rules. Over the previous eight years, despite hundreds of mistakes, the state issued just three fines against radiotherapy centers, the largest of which was $8,000.

How do we tackle this?  On the state level, or the federal level?  What are the reporting laws in other states, like my home of California?  Are there any good examples of agencies responsibly collecting this malpractice data?

[Thanks to otisarchives3 and Sandi for the pics.]

What's Wrong with Privacy? (Transparency Matters #1)

Over the past few years, I've become something of a transparency nut. One of the problems with transparency as movement is that very few people even recognize the term, much less know what it is. Once they see an example of transparency, they're often quite supportive.

I'm taking a different tack. I'm going to outline why privacy is bad for you. Bad for you, bad for your health, bad for your family, bad for your economy, bad for your politics, bad for your security, bad for your planet.

Or, at least I'm going to try.

Privacy as a social phenomenon is not terribly old. Indeed, the first taste that most Americans experienced was the privacy of isolation, and then of anonymity, which they got by moving to the American wilderness, and then to cities and suburbs.

Privacy as an activity is not terribly natural. Privacy isn't holy, or even well-defined as a philosophical or legal concept. The US Constitution doesn't explicitly lay out a right to privacy; the First, Fourth, Ninth, and Fourteeth Amendments are often stretched to serve as such. The courts don't recognize privacy except in those cases where citizens have a reasonable expectation of privacy.

Privacy is inconvenient. As we see in the social networking phenomenon and online advertising, folks are trading more information about themselves and their habits in exchange for better-tailored goods and services. Though most social networks, e.g., Facebook, have detailed privacy settings, most users leave these settings off for convenience.

"You have zero privacy anyway. Get over it." - Scott McNealy, Sun Microsystems, 1999

Privacy is illusory. Private detectives agree that the most effective way to get information about someone is not through cameras, microphones, wiretaps, or keystroke monitoring. Rather, it's much easier to find all you need to know by using Google, sifting through publicly accessible civil and divorce court records, criminal and driving records, credit histories, physical mail, digging into garbage, and chatting up that gossipy neighbor or brother-in-law.

Privacy is distracting. Privacy is used as a solution to more fundamental social concerns. You shouldn't have to keep your information private to prevent harassment, identity theft, or stalking. Those are already crimes, in and of themselves, and privacy is a flimsy barrier to them, at best.

Privacy is corrosive. Many social movements have their roots in liberating folks who do not fit the stereotype of normal, and bringing the falsity of those stereotypes out into daylight. A short list of relevant issues would include: domestic physical and sexual abuse (privacy of the family); homosexuality (privacy of sexual behavior); as well as alcoholism, drug abuse, dyslexia, AIDS (privacy of medical conditions). In each of these cases, the first step toward dealing with the issue was and is confronting the damage that privacy has done.

Privacy is contagious. Modern corporations and other firms have taken the idea of privacy into the business sphere and we continue to see the repercussions. Untraceable banking transactions are only one example of a practice that facilitates more than just the recent financial crisis. Consider drug-running, gun- and ammunition-smuggling, human trafficking, and terrorist criminal enterprises. If you could trace every dollar that changes hands, you would be a long way toward preventing and prosecuting crimes as well as protecting and providing restitution for victims. If you could open the books of every firm, financial crises like this could be avoided.

Privacy is expensive. Privacy is now a huge industry. Privacy is not insurance, which has the value of increasing your resilience in a measurable way. Rather, privacy purports to increase your protection, with few guarantees. You trade your information, often along with your money, to Company A for goods and services. Then you pay Company B to make sure that Company A doesn't release that same information. And only rarely do you get the opportunity to see the information that has been collected about you – to see how it is being used, for example – even to simply correct the information itself.

Privacy is wrong. You know that your government works for you, but you still see excessive secrecy in all the functions of government. Scandals involving abuse of power, corruption, waste and fraud abound as a direct result of privacy. This privacy has crept into government decision-making, awarding of contracts, evaluation of contractors and the operations of those contractors. You should be able to access any information involving the government or its functions without encumbrance or delay. The only legitimate delay is when the privacy involved is crucial to the security of the nation.

Privacy is insidious. You want to be paid well, and to be paid fairly, for what you do, but you're often told to keep your wages private. This privacy allows you to be paid unfairly, by allowing arbitrary decisions, such as those based on gender, race, age, or hairstyle, to affect your wage. Also, since everyone is quiet about wages, you never know the true value of your work, and are never able to bargain based on that value. This has the net effect of suppressing the wages of truly valuable workers. This stems from the idea that evaluations, especially of individuals, are more accurate if they are private. Private evaluations are a sign of ineffective management. And making them public can even be fun.

Privacy is inefficient. You have to waste time, and you even receive lower-quality of care, because of waste in the medical industry. This waste is due to privacy considerations around the sharing of your medical records, at least in part. This privacy is supported by an absurd system that requires you to keep secrets from your current and future insurance companies, at the risk of your own health. Worse yet, medicine itself suffers from this privacy because researchers cannot access your information, even to find out which medical procedures are most effective for people like you.

Privacy is not necessary. There is an alternative. You can choose differently.

You can choose to create a more transparent society. Imagine a society in which you can voluntarily release information, with the understanding that you can always see what is done with that information, how it's used, how it's changed, and what the benefits and detriments are. Imagine a society where your neighbors don't snoop on you, not because they can't, but just because it's rude and they have better things to do. Imagine a society where you can do good by working hard, paying your taxes, and serving your community with the assurance that you can see just how other people are doing those things, too. Imagine a society where your governments, businesses, and other organizations don't waste precious resources just because they can get away with it. It could be a society where we all dispense with financial privacy to strike a resounding blow against organized crime, world-wide.

At the very least, such a society could be quite interesting.

Is this a society worth striving for? If so, how do we get there from here?