By Deborah Borfitz
April 7, 2008 | A prolific builder of online health communities hopes to make introductions between members of those social networking venues and companies who need participants for their clinical trials. The service would alert prospective volunteers to trial opportunities to which they’d be suited by virtue of gender, age, geography, and medical condition.
The matchmaker is McLean, VA-based Inspire (originally ClinicaHealth), which has spent the last three years developing 35 online communities in partnership with non-profit organizations. The anonymous, one-to-one sharing that goes on in these communities provides important “grounding” for suggesting appropriate clinical trials to members, says CEO Brian Loew.
E-mail alerts will go out to the more than 90 percent of community members who choose to receive periodic, health-related communications, says Loew. The messages will indicate the type and general location of trials, as well as any compensation being offered, and ask individuals to consent to being contacted by the research group. “Decision making is in the hands of members. We just set up the environment. If 99.9 percent of a community doesn’t want to do [a particular trial], that’s fine with us.”
Inspire will earn revenues from the new service based on its efforts and not a “per-head bounty,” says Loew. For all business generated via the online communities, Inspire gives back a portion of revenues to its non-profit partners.
“We feel our first responsibility is to members of the community and their privacy, so we give them a lot of control over the process and don’t use their data in any way they have not agreed to,” says Loew. Ultimately, members may be able to specify preferences for receiving alerts about recruiting clinical trials. “We are very emphatic that we are not a substitute for the physician-patient relationship…and [will tell members] to talk to their doctor about clinical trial opportunities.”
Inspire remains in discussions with four top-ten pharmaceutical and two top-ten biotechnology companies about the clinical trial introduction service, says Loew. “We expect to have several customers by the end of the year.” The company has also just begun collaborating with the Center for Information & Study on Clinical Research Participation (CISCRP) to create an online community to educate people who want to learn more about clinical trials.
According to CISCRP President and CEO Diane Simmons, “the social networking opportunity that will be added to www.ciscrp.org is an extension of our public service.” Inspire is “making it possible for people who have been in trials to share their experience and wisdom with those who are considering participation. CISCRP is not involved in recruiting patients for trials, but we believe in education before participation.”
A fair number of companies have tried and failed to make a go of the clinical trial matchmaking business. “The lesson learned [from the failures] is that no one joins a social network if it’s just about clinical trials, and if they join, they’re not going to come back five times a week,” says Loew.
Members of each Inspire community get routine emails about activity on the site. They can also locate “friends” according to an assortment of criteria that might matter to them, like geographic proximity or similarity of condition or caregiver role, and share pictures of themselves if they so choose.
Inspire has demonstrated that it can create “heat maps” showing where members with different diseases are clustered geographically, which Loew says would be “a good tool for [investigative] site location.”
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This story first appeared in eCliniqua,one of Bio-IT World’s free e-newsletters. Subscribe here.