The requirements in terms of currency and accuracy of in-depth information are going to be vastly different if a chronic disease is being appropriately treated with today’s knowledge, in comparison with almost any type of cancer where we still are unable to treat the diseases as chronic. There is just too much that is unknown and it is even clearer when you deal with a rare type of cancer.

In short there is no model ala “one size fits all” in the Health 2.0 realm. I believe that many commercial sites will realize that fact sooner than later.

There’s also a word in your post that’s starting to irritate the crap out of me: “licensed,” as in “only the sites who have licensed the Merimedex drug database have information about this rare side effect.” Who the hell are they to have information about something like this and not make it available?

I have no objection to someone making a buck, but something is fundamentally wrong when important medical information is kept out of the public eye.

And, to get back to Gilles’s point, as long as the situation is like that, it’s actually harmful to tell patients only to look in places that play that game – and have no legal responsibility to keep themselves up to date.

If they respond by saying “It’s too hard to keep up to date,” then they’ve become signatories to the e-patient tagline “because health professionals can’t do it alone.”

Advice to “health 2.0″ providers and their investors: make your money providing a better something of some sort, not by latching onto important information and keeping it private. Be assured, those walls will eventually crack open, and if you haven’t actually created something of value, your business will collapse.

And the best way to build something of actual value for patients is, as Doc Tom Ferguson taught, to ask patients what they want.

The underlying goal of the peer review process is to filter out crud and somehow ensure that published information is as useful as it can possibly be. As Gilles pointed out so well here, the medical peer review process is no longer guaranteed to be the best source.

To the contrary, what I want is information reviewed by MY peers – others whose butts are on the line and who are working, full-time, to hunt down and vet every single piece of information they can find that could change their outcome.

Remember, in my case every bit of misleading (and ultimately useless) information I found came from the best-respected medical sites. That’s an existence proof that the advice earnestly offered by cnn.com et al is simply invalid and needs to be updated.

But I also think that, in the health information realm, social network have a much deeper function than in most other cases.

The focused and active networks have a fundamental role in helping their participants gain a high level of health literacy. And functional health literacy is clearly associated with better health outcomes. (More about this in a forthcoming blog post).

e-Patients have the same expectation when searching for health information. Social networks provide a context that’s closer to reality than a clinical reference. There’s a value to this and it should be recognized.

The ability to enable action, in the age of consumerism, is being accomplished by the patient networks, the technology companies that enable them, and online health companies that are 100% focused on meeting the needs of the health consumer in real time.

So, I agree. HON or NIH need to recognize that social network sites, peer sites and health content sites compliment the traditional information sources.

But I’m not too worked up about it. How many patients are going about checking sources? Of course, the more serious the condition, the deeper the engagement of the individual to pursue resources beyond a Google search. If a person is going to do research, I think they’ll uncover the static content plus the social content. The peer content will provide a realistic context to the static, clinical content, and obviously it’s proving out to be a wonderful thing.