Disease-Centric Communities Thrive, But Ad Opportunity is Elusive

Though doctors are now showing a high degree of interest in online social networking, consumers with illnesses were there well before them and their fast-growing communities may present an opportunity for the medical and pharmaceutical industries.

Membership in TuDiabetes, a network for English-speaking diabetes patients, is now nearing 8,000 and growing at 10 percent to 15 percent a month. EsTuDiabetes, its sister site for Spanish speakers, is growing at an even faster pace and both sites have a global following.

“It definitely came as a very pleasant surprise,” says the sites’ founder, Manny Hernandez, of their growth. “Because I am very open about [my diabetes], I was surprised to hear people say this is the first time I’ve had the chance to chat with people about diabetes.”

And they are chatting in many places besides the TuDiabetes sites, which was started in 2007. DailyStrength has separate communities for type 1 and type 2 diabetes, and, last November, the Juvenile Diabetes Research Foundation launched its community, Juvenation. The sites come on top of dozens of well-trafficked blogs, like DiabetesMine and portals like Diabetes Daily and the doctor-focused DiabetesConnect. There are also community-like sites created by pharmaceutical companies for their products, like the one for Sanofi-Aventis’ slow-release insulin shot Lantus. The site was ranked highest for satisfaction in a new ManhattanResearch survey of ePharma consumers.

The corporate sites are, of regulatory necessity, less freewheeling than their independent counterparts. Pharmaceutical companies are required by law in the U.S. to report to the U.S. Food and Drug Administration any problems caused by their drugs and kvetching is pretty much a staple of user-generated content on any social networking site. But ManhattanResearch notes that corporate sites can add rich features to their sites that make them highly attractive to consumers, such as instructional guides and videos, money-saving coupons and access to customer-service representatives. (The “ePharma” report looked beyond diabetes to assess visitation and satisfaction on more than 40 company sites and more than 50 unbranded sites.)

TuDiabetes is arguably the most tech-savvy of the independent diabetes communities: Hernandez built it on social networking platform Ning, the company at which he worked before starting TuDiabetes. His new venture has just two full-time employees, but relies on a network of member volunteers to keep the discussions free of spammers and welcome new members. The volunteers read every new sign-up and send a personal e-mail to help the newcomer find the discussions most appropriate to their diagnosis.

The Venezuela-born Hernandez, who is fluent in both English and Spanish, started his community in the former but quickly realized that there was as great a demand for information in Spanish-speaking areas of the world. EsTuDiabetes now has a following not only in Venezuela, but in Mexico, Spain, Ecuador, Chile, Costa Rica and among Latin Americans in the U.S.

Despite the seemingly crowded landscape, Hernandez, who was diagnosed with diabetes in 2002, says his greatest competitors are “ignorance and unawareness.”

“Putting together all the online communities that serve diabetes patients, we’re probably not even getting to 100,000 people,” said Hernandez. “Yet there are 25 million diabetics in the U.S and 250 million worldwide.” The World Health Organization expects the number of diabetics to reach 366 million by 2030.

With statistics like those, it’s easy to understand the strong interest in branded and unbranded drug and disease communities evidenced in the ManhattanResearch survey. And many of the unbranded sites already accept pharma and general consumer advertising. But like their counterparts in the broader social networking space, they are wary of intrusions.

“We don’t want people joining just to promote a product,” said Hernandez. “We feel it is important to keep ads established as such and separate from conversations. Those have to stay between patients because that is how the site provides the most authenticity.”

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