Pharma’s Facebook

Nonprofits and government agencies remain hesitant about recruiting on social networks because they see them as a relatively untested medium. TrialCheck, a database of both private and public cancer studies, is interested in using social networks, but is holding off until they have more information. "Cancer patients should know all of their treatment options, not just a select few trials that are promoted," says Dianne Colaizzi, spokesperson for the Coalition of Cancer Cooperative Groups. "Another issue is how do patients discern the quality of the information they find on social-networking sites? Many of the sites lack high quality medical information from trusted sources."

Another problem: the reliability of data that comes from trials where the participants may be communicating with each other. That doesn't usually happen in medical studies. But if your study subjects are on the same social-networking group, what's to stop people from swapping enough information to figure out which of them is on the real medication vs. the placebo, essentially "unblinding" the study?

"If you know what to expect because you're going online and seeing what's happening [with other patients], the result is that the data could come out biased," says Paul Bleicher, the CEO of a health-tech startup in Cambridge, Mass., who has written on the role of social networks in medicine. He doesn't think that pharmaceutical companies have yet thought through these issues. Novartis's Mundel admits they haven't figured it all out yet. "It's something which hasn't been worked through, how [social networks] might worsen the accuracy of adverse-event reporting," he says. "That's one concern we have to think about and still don't totally understand."

Despite these drawbacks, clinical-trial recruitment on social networks is expected to increase. Inspire says that it is signing up 100 new members a week. As Bleicher writes in a recent article in Applied Clinical Research, "Technology is here to stay, and it will bring changes in communication and interactivity that we can't even anticipate, along with many opportunities and some risk."

But as with all things Web, when things go right, the power of connecting people is formidable. Take Susan Love's Army of Women, a site that launched in November 2008 to solicit volunteers for preventative breast-cancer research. The site capitalized on the grassroots-organizing powers of the Internet and, largely through members inviting friends, has amassed more than a quarter million members that researchers can recruit for research exploring potential risk factors for breast cancer.

The site is not a social network (although that may come soon), but does take advantage of many innovative Web 2.0 tools, like blogs written by researchers describing their study and how Army of Women members are having an impact. But even if Army of Women does become a social network, they're operating to collect information for prevention, not testing the effectiveness of drugs on various conditions, so they're less likely to run into problems where data is compromised by the interaction of patients.

Perhaps most important, this site has been able to reach hard-to-find but willing research participants including Theresa Passerelli. The 60-year-old hospital accountant lives in Warm Springs, a tiny town in central Georgia with no stoplights or grocery stores. She's 70 miles from a major medical center, but is participating in important breast-cancer research on sisters of women with breast cancer. "You have the walkathons, but those don't advance science," says Passerelli. "When I saw the Army of Women, I was more than willing to give them my body and let them do whatever, if there's a possibility there will be some kind of breakthrough."

© 2009