Online health after the dot-com meltdown: What's next?

Whole Earth, Winter, 2001 by Joe Flower

"This happens at the museum library too, of course. I'll find someone a fabulous seventeenth-century book on German woodcuts, and they'll be grateful. But when people say, `If it wasn't for you, I'd be dead,' well, that's gratitude on a whole different level."

JF: What about commercial sites?

TF: As recently as two years ago, I was getting wild calls from dot-coms willing to throw money around. Now that commercial frenzy has all gone away, and we are seeing a shift toward online communities.

Even at their peak, though they were getting a lot of media, the dot-com side of this was very small. What people actually do online is search for their particular illness, and that side is almost all nonprofit. They want "my-disease.org." They want to talk to other patients, and they want annotated links from a lay-run hub site. Those professional interfaces are quite impenetrable to them. The information might be at the National Cancer Institute, but it's buried five layers deep. The annotated link will tell them just where to go.

A lot of people in these online self-help communities will have almost nothing to do with a commercial site.

JF: Is anything being done to guarantee the quality of online health information?

TF: The big players have established a "Good Housekeeping seal" group. The name is in transition, but everyone calls it "URAC," after its original name. It costs $5,000 just to apply to be a member, so it's automatically only going to be for big players. In reality, most people judge the quality of information online the same way they do when buying a book. They use their common sense, they might have some sense of the author's reputation or might ask other people interested in the subject. There is no single standard. The mother of an autistic child might not want to hear the opinions of a physician, for instance. She might want to hear the experiences of the mother of some other autistic kid.

JF: Is online health information changing the relationship of doctors and patients?

TF: These days the patients are teaching the doctors. As more and more of them show up in the office clearly knowing more up-to-date things than the doctors do about their condition, doctors are beginning to see that the rules of the game are changing.

People have two distinctly different types of relationships with physicians online. In Type 1, people find a doctor online, perhaps through a self-help site, or through the doctor's own website. In this relationship you get the same kind of curbside consult you might get if you met a doctor at a cocktail party. It's a lot like talking to an expert medical librarian or even an experienced self-helper. He or she won't step into the take-charge authority role that you might be looking for, and certainly won't diagnose or prescribe online.

In Type 2 your regular doctor says, "Let's use email." This conversation is almost completely identical with communications by telephone--"Do I need to come in, how do I prepare?" or after the visit, "What was it you said about this medicine, is this a side effect?" and so on.