By using language- and pattern-analyzing software to search and distill the cascade of words on social networking sites, researchers may be able to identify trends and signals, such as repeated mentions of a certain drug in connection with a particular side effect or treatment success. “Listening” to thousands of patients as they discuss treatments, side effects and experiences with their diseases might even help scientists come up with hypotheses worthy of study. “There’s a tremendous amount that goes on in a patient’s daily life,” says Frank Moss, director of the Massachusetts Institute of Technology Media Lab, an emerging-technologies research group that helped create one disease-related networking site, and a founder of the cancer drug company Infinity Pharmaceuticals. “They’re trying off-label drugs, different diets, different exercise, different lifestyles. That information isn’t easily available to clinicians, but the cure to the disease may lie within it.”
This is an excerpt from the Massachusetts General Hospital quarterly magazine, Protomag, which you can also read online, via the link above.
The article isn't just about data mining, but also about how patients can connect and converse about their disease through forums as well as the dangers of social media sites that are unchecked by authorities (viz the FDA).
The 'deep web' as Gilles Frydman described it in the comments to the recent post on this blog about the FDA, social media and patients, has both advantages and disadvantages. One the one hand, it is a great resource for people needing advice from others with the same condition and on the other, it can be a fertile ground for misinformation and unscientific data with no substance or rigour.
Check out the full article in Protomag, it's well worth reading.