I'm am concerned by this. Specifically with this linked site, Crohns and Colitis are not the same diseases and have different treatments, yet the data is lumped together, this is irresponsible. Secondly the masses are now always right, this can easily fall into a movement of bad advice and skewed product ratings without oversight by the maintainers, actual doctors, and research with peer review. For the record I've d…
I've known Sean for a few years and operate a (smaller) disease-based Q&A community as well with 2,500 members for Ankylosing Spondylitis (AS) - http://answers.ankylosing.org
I created it when my girlfriend was diagnosed, dismayed that Google yielded mostly information from WebMD and pseudo-FAQ sites from big pharma.
Where networks like Crohnology shine is in connecting others who share the same pains, frustrations with doctors, experiences with medications, comforts, and very personal conversations about the impact on sex and relationships with their disease.
And guess what, when someone puts out misinformation, that community hops on the offender like white on rice, even emailing me directly (can you ban them!?).
I've seen few social networks truly as tight-knit as disease communities and that's where Sean focuses his energy (whereas mine is a small side project). They're the only place to interact with a cohort that really "gets me" and they take pride in helping others to an amazing degree.
Finally, in reference to a doctor and the "first 5 minutes" comment - the reality is they only give you 5 minutes, and when you complain about a new pain, symptom, you'll often get "Yup, that's Crohn's/AS/etc." Then they'll write you a script for a drug where the ONLY real place to get good information on the side-effects/positive-effects are through networks like ours.
edit: I still always manage to spell Crohn's wrong