Thursday, January 26, 2006

group hug

Last week's Grand Rounds included OverMyMedBody's excellent post on Google diagnosing. Grahamazon gives a great rundown on the pros and cons of looking for medical advice on the web, but since his focus was mainly on the utility of search engine results, he barely touched on one of the most important sources of online medical information and disinformation: the forum.

Forums, also known as discussion groups, bulletin boards, or message boards, allow registered users to post messages, asking questions or looking for support. Messages are generally arranged so replies can be easily read, and so that new replies can be added. The idea is to allow each member to share his knowledge and experience with the other members of the community, so all can benefit. The realization of that idea, you can imagine, varies from forum to forum.

For every medical condition out there, you'll find at least one USENET discussion group.* You'll also find a Yahoo! group or two or three, and perhaps an site with support forums as well. And those are just the health-related topics at general sites; major medical sites run message boards, blogs, and forums, too. WebMD has them; so does The American Cancer Society. Its a good bet that other national health advocacy related websites also offer support forums.

So, what's the problem with online health forums? Isn't it a good thing that there's all this expertise out there? Isn't it great that you can ask a specific question about your own problems, and get a specific answer?

Briefly: yes, it's good, but it's not all good.

Specifically, yes, it is possible to get good advice in an online forum. However, there are some things you should keep in mind if you're active in such a forum, and considering following medical advice you read in one.

If you're just jumping in, moderated forums are greatly preferable to unmoderated forums, if only because spammers and flamers will be kept at bay. But just because a forum is moderated doesn't mean everything you read there will be medically accurate, or pertinent to you. A moderator could be medically knowledgeable, but it's just as likely that a moderator is someone who has a personal interest in the health issue that the forum covers, and who also has the time to spend keeping the forum civil. Moderating is not for the faint of heart, and I have a lot of admiration for mods, but being good at keeping the inmates calm doesn't automatically translate into being an expert on your condition.

Another problem with forums is that very often, the forum regulars won't have the answers you're looking for. Forums can be great for general information, but if you need more in-depth information or advice about an unusual symptom, chances are you'll be out of luck.

In the same category, there's no telling when you'll get a reply to that urgent question you just posted, so don't rely on a forum to give you an answer to a question that is pressing. Some forums have constant traffic, others sporadic, but even in the busiest forums there is no guarantee that someone will be willing or able to answer your question.

When you do get an answer, take into account what you know about the respondent. In some forums, actual doctors take the time to participate; you can easily identify their posts by the lengthy disclaimers they attach to each and every one of their replies. Still, you can usually trust what a doctor's telling you. With the patients, though, they're reporting based on their own experiences and the knowledge they've gained as patients -- and while that is useful, it might not be something you want to rely on.

One of the best things that online forums can do for patients is reduce their sense of isolation. It can be so helpful to be able to express frustrations to people who have been through all the same tests and procedures, who've had to endure the same tedious recoveries. It's certainly helpful to hear about other's experiences with particular medications or therapies -- it's great just knowing that someone else really understands. An additional benefit is that forums allow a patient to vent without having to dump everything on immediate friends and family. (The best thing about online friends is you deal with them strictly on your own time, and your own terms.)

Even with all the above caveats, it would seem that the benefits of emotional support would outweigh all those negatives. That brings me to my final point: be aware that the members of these forums are self-selected. In any forum, the most active participants dictate the tone, and in medical forums, the most active participants are often the ones who have the most difficult or advanced cases.

In general, there are three types of medical forum participants. The newly diagnosed member ("newbie") comes in looking for basic information and support, and participates until he has reached his own level of psychological comfort with his condition, or at least his knowledge of his condition. This type of member drifts in and out, but typically doesn't actively participate much after all of his questions are answered.

Long-term message board posters fall into two categories: the helpful expert, and the hard case. Helpful experts are godsends, and they shepherd the newbies to the appropriate links and articles to get them through their initiation (to the condition, but also often to forums.) The hard cases are sometimes difficult to distinguish from the helpful experts, because their input can often be helpful, too. They are experts because they've been through it all. But they also remind everyone just how bad the condition can be -- and that can leave a newbie with a skewed perception of what he's in for.

Reading some support forums, you can easily get the impression that everyone who has the condition is struggling with their meds, suffering a host of associated symptoms, and dealing with an intractable medical system. If you're newly diagnosed and looking for support, a forum that's filled with hard cases might give you the impression that you're doomed.

Online forums have been helpful to me personally, but I'm a hard case. After participating over an extended period, I could see that my attitudes were being affected by all the hard cases I was reading about every day. Even though I'm not a typical thyca patient, my prospects aren't bad at all -- but reading messages from patients who had had multiple surgeries and treatments became unsettling to me. Once I stepped away from the forum, I was able to leave most of my fears behind, too.

I'd like to think most people are aware of the usual caveats that attend getting advice online: On the internet, nobody knows you're a dog goes all the way back to 1993. So most people will be cautious about specific advice -- I know I was. But the effect of the disproportionate number of hard cases that are represented in forums was a lot more subtle, and something it took me a long time to recognize.

This self-selection effect is something I think doctors need to add to their warning list when they are counseling patients about seeking advice and support online.

(*) A USENET group is actually a mailing list, but web interfaces are available to make it essentially indistinguishable from an online forum. USENET is, in online terms, practically prehistoric.

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