Now we come to a different problem: not the costs of bad information, but the costs of good information. You ask if the clouds of medical uncertainty should be publicized on Web sites. My answer is an unequivocal yes. It disturbs me far more that the uncertainty is usually not publicized than the fact that it sometimes is.
What we frequently have on the Internet is an exploitation of uncertainty. The snake-oil salesmen do not try to hawk their cures and salves to appendicitis patients or people with glaucoma. You don't see ads or Web sites that say, "Attention heart disease-sufferers. Next time you have chest pain, try natural herbal Heart-Ese. It's made from taro root!" Instead, they zero in on more unsettled medical territory, claiming to find knowledge where there is in fact none.
Dr. Andrew Weil's incredibly popular and incredibly awful Web site does this kind of thing all the time. In his advice column yesterday, for example, he encouraged people to try ashwaganda--which sounds like it might be a relative of mine and is in fact an herbal remedy from India--to "strengthen immunity and stamina" and possibly "boost sexual energy in men." The evidence he cites is completely unconvincing for such effects. He mentions irrelevant frog and rat studies published in obscure journals, unnamed "research from India" that "demonstrates" the herb protects against stress, and "promising reports" he's "heard" for it improving sexual stamina. The closest he gets to admitting ignorance, however, is to say that "we don't know how it works." Is ashwaganda safe? "I don't know of any possible side effects," he says confidently. It's a chilling degree of nonchalance considering recent studies like the one in the New England Journal of Medicine last week that demonstrated a massively high rate of urinary tract cancer from a traditional Chinese herb, aristolochia, that has been widely marketed for coughs and other problems.
Web sites often want to offer the balm (and authority) of certainty. But the best ones, like the best doctors, will map out where the ignorance lies. The knowledge may be frightening for patients, especially those with serious, dangerous conditions like PNH or leukemia. But having such knowledge seems absolutely vital. It is the only way that patients can protect themselves from the charlatans and the hype. And it is a necessary prerequisite for being able to make wise choices about the medical care we receive.
On a slightly different topic, I wanted to offer an answer to a reader who asked me why it was I liked drkoop.com, given all my trash-talking about Web sites. Well, I suppose it might partly be sympathy for the fact that the site seems to be in financial hot water. Certainly, the information it carries does not appear to be any significant degree better than other Web sites. And I do generally agree with your wariness, David, that commercial sites will skew the information they provide to, say, please advertisers.
Nonetheless, I do like the site for the simple reason that Koop has staked his name on it. C. Everett Koop's entire standing in history is his integrity, and he knows it. As a surgeon, he was peerless in both skill and caring and a model to hundreds of doctors, myself included, although I have never met him. As a public statesman, he was honest and fearless. He has carefully cultivated this reputation. It matters more to him than money. And I get the strong sense that he would sooner let the site go under than compromise the information he provides. He has a personal stake in succeeding in helping patients, not in pleasing the moneymen. This is what I look for in my doctors. So, I figure, isn't this what I would want in a medical Web site, too?
My last word is simply to agree with you. No matter how good Dr. Koop makes his site, I suspect the best sites will prove to be from patients. As much as we think we know what patients need, and as much as a doctor can help to sort the information wheat from the information chaff, much more of what is useful to patients is already being learned from their simply being able to talk to one another. The future is not Dr. Koop. The future is somewhere in your friend's leukemia support group.