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

One thing leads to another, especially for reporters. After we published our Boston Health 2.0 Cluster story in June, I started getting a lot of invitations to attend and/or moderate local events relating the Web’s influence on the healthcare market. One such event was a weekend brunch hosted by IC Sciences executive vice president Steve Wardell, where the guest of honor was Amir Lewkowicz, co-founder and vice president of partnerships at Inspire (known until this February as Clinica Health).

Often held up as one of the standard-bearers of the Health 2.0 movement, Inspire hosts Web-based communities for disease sufferers and their caregivers, and earns money by arranging for pharmaceutical and device companies to recruit community members as volunteers for clinical trials. Lewkowicz runs the Newton, MA, offices of Inspire, which is headquartered in Princeton, NJ. A couple of weeks after the brunch, I met him for coffee in Coolidge Corner and got a chance to interview him at length about Inspire’s business model, which is a synthesis of social-networking ideas Lewkowicz picked up while earning an MBA at Wellesley’s Babson College several years ago and knowledge of the clinical-trials process brought by his co-founder, Brian Loew.

The 10-person startup’s focus, Lewkowicz explained, is on the kind of crowdsourcing now classic in the Web 2.0 world. Specifically, the company helps existing health- and disease-oriented organizations, such as the ALS Foundation or the National Infertility Association, create online communities where members can share their own experiences and knowledge. It’s an itch that apparently needed scratching: more than 80,000 people have joined Inspire’s 40-plus communities since its first social network was launched in 2006. But along the way, Inspire has also been able to fill a second need—for qualified participants in trials of new drugs, a scarce resource that pharmaceutical companies spend millions of dollars each year seeking out. An edited version of our conversation follows.

Xconomy: How did the idea for Inspire come together?

Amir Lewkowicz: Brian Loew and I have known each other for many years. We went to undergraduate school together. The idea came about in 2004-2005, along two different paths. Brian was looking at the clinical trials area and found that the biggest issue people were talking about was finding the right people for clinical trials. The number-one reason for delays with trials and bringing drugs to market was that researchers couldn’t find enough people.

At the same time, I was doing my MBA at Babson, and had just taken one of those classes that changes your whole view of things. It was called “Extended Enterprise Management” and was taught by Marty Anderson. I thought it would be about operations and supply chains, but he introduced the whole concept of social networks. This was in 2003, when social networking was not really mainstream. He blew me away. The way he positioned it was that if you build your company around direct input from the consumer, it changes your whole way of looking at things.

Well, at Babson it’s kind of like a religion to start your own company. They really push you—but in a structured, good way. I was in touch with Brian, and we started talking. At the same time, I had a personal thing—my sister and I suspected that one of our parents had a specific condition. We went online looking for authoritative content and had a very frustrating time. The online groups weren’t structured very well. But I was using LinkedIn and was getting a lot of benefit out of it. I wondered why this couldn’t be done for healthcare also.

Brian had started a company in the 1990s called WorldWeb, a content-management company kind of like Vignette, and had sold the company and then joined the Washington Post, where he was helping with technology strategy and social media. So the idea germinated—why not create a place for people with health conditions to support each other, but at the same time use it to recruit for clinical trials. It was a perfect-storm scenario.

X: But isn’t it pretty difficult to create a social network from scratch and get to critical mass where you have people generating useful content?

AL: We always believed we would partner with health organizations. We went to hundreds of websites to see what kinds of tools they had, and at the time about 25 percent of patient advocacy groups, hospitals, medical groups, and disease-oriented organizations had some sort of social media, mostly discussion boards. We saw an opportunity to partner with these groups.

The first few months was doing the market research, seeing what the potential partners needed, and working on a prototype. We didn’t raise any money; our wives were our first investors, essentially.

After a few months, we raised some angel money, in early 2006. That gave us enough money to hire four developers and finish the prototype. While those guys were doing that, Brian and I went out and talked to potential partners. We had to educate the market. A lot of people in healthcare had no idea what social networks were. There was a lot of fear around them. “You’re going to let patients talk to each other? What about the liability?” All they really knew about were the horror stories about … Next Page »

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Wade Roush is a freelance science and technology journalist and the producer and host of the podcast Soonish. Follow @soonishpodcast

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