Another great thing about patient social networks is that you can go back and ask the patients questions. Currently, whenever you want to study the correlation between genes and a phenotype, you put together a microarray study, gathering microarray data on a thousand patients, and hiring a doctor to ask each patient "Do you, or have you ever, X, Y, or Z" at a couple hundred bucks per patient. Then you get a DNA sample from each patient, and run it on a microarray, at about $700 per patient.
If you decide you want to look at phenotype W, you do it all over again.
With a social network, patients can post their microarray data, and you can ask them "Do you ever W?" even after the initial study.
Also importantly, you can study things that you would have a hard time getting a grant to study because they're controversial. For instance, correlations between genes and SAT scores.
Last June, I wrote up a brief description for the NSF of a proposed project to use the Affymetrix Genome-Wide Human SNP Array 6.0, which looks for 900,000 SNPs and 900,000 copy number variations. The idea was to provide a website on which patients could upload their own data onto a website, and researchers - or anyone at all - could distribute questionnaires to specific sets of patients. This would let people conduct studies for almost nothing that would currently cost millions of dollars. (A lot of people would argue that you can't ask patients to self-report their symptoms/attributes. I would say, among other things, that I'd rather have self-reporting by 5,000 patients than doctor observations on 20 patients.)
The fact that patients would provide their own data should have been able to get around the strict privacy requirements. Unfortunately, some states, including California, are ahead of me: A patient may not get their own microarray data in CA without going through a doctor.
Also unfortunately, the NSF was so uninterested that they never even responded to my email, which has never happened before.
23andme.com is doing something a little similar. But they don't let you ask phenotype questions of the members, so it's not enough.
When you're suffering from a life-changing illness, where do you find information about its likely progression? How do you decide among treatment options?
You don't want to rely on studies in medical journals because their conclusion-drawing methodologies are haphazard. You'll be better off getting your prognosis and treatment decisions from a social networking site: PatientsLikeMe.com.
PatientsLikeMe.com lets patients with similar illnesses compare symptoms, treatments and outcomes. As Jamie Heywood at TEDMED 2009 explains, this represents an enormous leap forward in the scope and methodology of clinical trials. I highly recommend his excellent talk, and I will paraphrase part of it below.