We know that patients have been organizing online and Laura Landro (who’s been there herself) confirms it in a fascinating article. Go read it. Of course this is making some people nervous.

Of course, the rush to link communities and researchers and the move by patient groups to conduct their own research raises some thorny new issues. While the nonprofit, patient-run online groups have no financial interest in research or recruiting for trials, some for-profit health Web sites see their online communities as a way to make money. Such sites, supported by drug-company advertising, may seek to recruit patients for drug-company clinical trials, often without going through physicians who may advise patients about the pros and cons of such trials. Also, the research organized by online patient communities makes some scientists nervous because such efforts don’t use the gold standard of randomized controlled clinical trials.

So you might argue that the for-profit status of Yahoo or DailyStrength raise that thorny issue. But of course the non-profit groups are starting to use for-profit start-ups like Clinicahealth and Solos to supply their online services. And the mix between patient groups, disease groups and big Pharma continues to be a matter of controversy. Meanwhile there’s plenty of evidence that clinical trials per se are not that helpful, and all the data generated online will be very important no matter what the nervous scientists think.

We are on the cusp of a big change here, and everyone’s roles are changing in uncertain ways.