"Since the Internet's earliest days, patients have used the Web to share experiences and learn about diseases and treatments. But now [advocates say] online communities have the potential to transform medical research," the New York Times reports. The latest development was spurred in part by patient groups like the LAM Treatment Alliance, which hopes to speed research on the fatal respiratory disease that afflicts young women. The group created "LAMsight, a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease."
Private companies are also collecting patient information through online portals - sometimes called "crowd-sourcing" - for recruiting participants for clinical trials, selling to drug makers, and conducting their own research. Advocates say patient's experiences with disease are an "untapped" source of research data. But, critics say the methods may not protect patient privacy, and that user-generated data may not live up to quality standards. Neither group expects the so-called "observational research" to replace clinical trials, but it may open new avenues of research and help scientists develop new hypotheses (Arnquist, 8/24).
http://www.kaiserhealthnews.org/