Online Communities Meet Clinical Trials: Inspire’s Co-Founder on Social Networking, “Health 2.0,” and Trust
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MySpace. It’s really amazing how much things have changed in the past three years.
It took a while to get the first partner, which was the Children’s Inn at the NIH, a highly subsidized hotel where kids who are coming in for treatment and their families can stay. Their executive director, Kathy Russell, is great. She said “I know you guys are new, you barely have a product, but I feel good about it, and I think it’s a great tool.” She took a risk on us. She wanted parents to be able to communicate and plan their trips. So that was our first small community. But they were great first partners.
X: So you started out building one small community at a time?
AL: The Children’s Inn experience quickly expanded to talking about specific conditions. Someone might ask “Does anyone else have a child with this familial or rare condition?” and other parents would respond. It grew from there. But we thought right away, we are not the experts in these therapeutic areas—so let’s partner with non-profits, and not charge them anything, and brand it with the look-and-feel of their own sites as much as possible, but do all the back-end design and development work and technical support and moderation.
That model caught on. But at the beginning all of our communities were siloed, with separate signup processes and logins. And we realized that if we were going to grow, it would become very difficult to manage all of these communities. Also, we heard feedback from members that there were a lot of co-morbidity issues, and they didn’t want to have to join multiple communities. It’s very obvious now in retrospect, but people play different roles in health; you may join one community because you actually have that condition and another because you are taking care of someone who has that condition. So we made a decision to bring all of the communities under one umbrella. In each group a member joins they can identify themselves as a patient or a caregiver.
There was a lot of handholding when we migrated all of our users. We have two constituencies—our partners and our members. The new communities had to still look like part of [the partners’] sites, but now they’re just part of the larger group. Most members pretty much stick to one, two, or three communities.
X: You actually have more than two constituencies, don’t you, considering how the pharmaceutical companies fit into the picture?
AL: We definitely have more than two constituencies. One the revenue side of things, one is the pharmaceutical companies, but there are also medical-device companies and biotech companies that are conducting clinical trials. Our first year was focused on signing up health-organization partners and fine tuning the communities. When we first started talking to some pharmaceutical companies, they said it was a great idea, but “Come back to us when you actually have some communities.” So now we have two and hopefully three projects with pharmaceutical companies starting to be implemented.
X: How does the recruitment work? I imagine you have to be careful about not having it feel too invasive or exploitative for the community members.
AL: The pharmaceutical companies will usually just say “we have a clinical trial on X condition, in this geographical region, and we’re looking for these kinds of people.” We don’t sell our members’ identifiable information, or anything like that. It’s completely opt-in. If members want more information, they can get it. We don’t want them to feel like they’re being tricked into … Next Page »