There’s a quilt hanging on the wall at PatientsLikeMe, made with different patches of fabric from members of the firm’s online community of multiple sclerosis patients. “We have it hanging in our office because it represents so much of what our site is about—individual experiences that, when pulled together, give you a very powerful collective view of patients living with MS,” says PatientsLikeMe co-founder and president Ben Heywood.
The Cambridge, MA-based firm has stitched together a growing business by facilitating peer-to-peer interactions among patients on its social networking site, and selling anonymous data from its members to customers in the research and pharmaceutical markets. The number of patients on the site grew impressively from about 25,000 in December 2008 to more than 55,000 as of early this month (not like the eye-popping number of people on Facebook or Myspace, but significant for the healthcare field, according to Heywood). The jump in users and the overall size of its business has caused the company to expand its workforce to from 20 employees a year ago to 30 employees today, says Heywood.
Yet patient social networking sites remain in search of a solid footing in healthcare. Heywood says that PatientsLikeMe generates the kind of real-world data on the health of patients that can’t be found anywhere else. He might be right. Traditional clinical databases used to track the health of patients might not offer the type of personalized information that a patient would share among her peers on a site like PatientsLikeMe. The company’s big challenge, though, is to convince more paying customers of the value of the data its members generate. This challenge is compounded by the fact that the healthcare industry is generally loath to break from convention and adopt new technologies.
Nevertheless, PatientsLikeMe has provided services such as customized research on patient health and Web-based surveys for some of the top-20 pharma outfits in the world, Heywood says. The company doesn’t disclose the identities of all its customers, but does name the Swiss drug giant Novartis and the Google-backed personal genomics firm
