The Web is an ecosystem, and you can bet it’s being studied. The creatures who live on the Web—you and me, virtually—leave behind tons of data. One example: online health communities, which, as they grow, amass a body of information that medical researchers can mine.
Science has long looked at disease patterns in populations to find clues about cause and effect. (John Snow famously traced a cholera epidemic to a London community water pump in 1854, proving the value of epidemiology.)
So imagine the patterns that will come to light when 5.5 million people get together every month to discuss, describe, and ask questions about diseases and health issues. That’s what happens at MedHelp, one of the largest health communities online, where users have posted millions of comments and questions about approximately 300 conditions, some dating back all the way to 1994.
People “talk” and patterns emerge, although sometimes they’re not spotted right away. John de Souza, who runs MedHelp, told me that after stories of Ambien and bizarre sleepwalking episodes surfaced in the press in 2006, he went back into the MedHelp records and found complaints on the site that much predated the media blitz (reports of the side effect were noted without much fuss in medical journals as early as 2002).
As the size of the community has grown, patterns have become easier to spot. “Initially we thought we’d get interesting exchanges,” de Souza says of his message boards, “but what we didn’t see is that we would have the quantity of data that would allow you do data mining and analysis.”
Data mining is wonk-speak for the same work Snow did at the Broad Street pump in London—hunting for correlations and connections. For example, de Souza’s group has shown that discussion of side effects from contact lens use increased abruptly after a certain new lens was marketed. As the data gets more robust (MedHelp asks some users to be very specific about, say, the size of cancer tumors), researchers will increasingly want to use online communities to recruit subjects and eke out interesting correlations.
And I’m betting liability lawyers are trolling the bulletin boards for early warning signs of consumer complaints. Much that happens on the Web is emergent—it comes into focus as it organizes and reorganizes and makes new connections. The potential in the health area is just beginning to take shape.
(Full disclosure: I’ve been talking to de Souza about ways that Health.com might work with his site.)
Comments (2)
Online discussions of side effects, etc, also brings up the question of “social contagion” in the very real sense. Research shows we are affected by others online (if a post is popular, we are more likely to read it.) If we google “contact lenses” and find lots of complaints about, say, dry eyes, are we more likely to develop/imagine we are developing that symptom as well? It seems there is a psychological aspect to be addressed… This matches up with some of the conversations about online communities of anorexics, etc. In other words, can online chatter about side effects increase hypocondriacism? (is that a word?)
Reply from Scott: Yes indeed. An online community grows virally through the exchange of language, and words are deeply suggestive in the area of health. Epidemiology doesn’t prove anything, it only suggests connections. In a new social environment like the Web, research science will be taking baby steps for a long time.