Online Communities Meet Clinical Trials: Inspire’s Co-Founder on Social Networking, “Health 2.0,” and Trust

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it. Trust is critical for success in any health-related social network. It’s really hard to get it and really easy to lose it. We’re always thinking about that. We took a lot of time crafting our privacy policy, and even though most people never read it, it’s very critical.

So the idea is that we will do very targeted messaging. We have demographic information on our members, so we will not bother someone in Ohio if there is no trial going on there. In fact we’ve filed a provisional patent application on using social networks for medical-trial recruitment.

X: Aren’t there a lot of companies specializing in recruiting people for clinical trials? How do you compete in that market?

AL: There are a lot of companies that help with recruiting, but the way they usually do it is through mass media advertising. It’s not as targeted. On the T in Boston, you’ll see a lot of ads for clinical trials—it’s not very efficient. There are some online registries where you can go and fill in your data and supposedly they’ll get back to you, but you have no reason to keep going back to those sites. But we’re a social network where we have a lot of people coming back. We’re not a clinical trials recruitment company, in the end. We are a social support network and one way we pay the bills is through clinical trial recruiting.

X: Do you have any other revenue sources?

AL: Another [one is] market research, like online surveys. Say a medical device company wants to find 100 women who have a certain pacemaker and want feedback. You can’t go around buying names from insurance companies. But we can approach our community members. We will make an official announcement in January, but we have entered a partnership with a leading health market research firm, and we’re going to launch a joint venture where we will become their online market research wing. It’s a natural match because most of the people who join our communities are very proactive and eager to take charge of their health. They are more likely to respond, for many reasons. They want to help advance science. And they just love to be heard.

X: You said you had demographic information—so who are your members, for the most part?

AL: About 90 percent of them are from the U.S. It’s 75 percent women, 25 percent men. I forget the exact average age, but the bell curve tops out around the 40-to-55 age group. A lot of our communities have more caregivers than patients, and most caregivers are women. In fact, the people in families who typically make health decisions are women. But we are going to start to have some male-specific communities, like prostate cancer, and it will be interesting to see how that goes.

X: Once people get accepted into a clinical trial, it seems natural that they’d also want to use social networks to communicate with other trial participants around that. Is that part of what you do?

AL: When the pharmaceutical companies sign people up, a lot of the time they say the patients can’t really talk about it with other people because it might affect the trial. Ideally, we’d like to have a community for people in trials, but I know that’s not possible right now. Although I’m sure some of them create their own communities—it’s hard to contain these things today.

X: The main revenue stream for most social networks is advertising. Do you place ads on your community sites?

AL: At the time we started, everybody said “You’ve got to have ads.” But these days CPMs [the prices advertisers pay per thousand impressions] are very small, and you don’t have much control over what types of ads appear. Because we’re dealing with non-profits, it’s a delicate situation. They don’t want to be seen, for example, as … Next Page »

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Wade Roush is the producer and host of the podcast Soonish and a contributing editor at Xconomy. Follow @soonishpodcast

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