Wall Street Journal: Hello, My Name Is USER01

The Wall Street Journal spoke to IAVA Member Veteran Reynaldo Leal, Jr. for this article about IAVA's use of new social media, including the Ning-based social network CommunityofVeterans.org, to help Iraq and Afghanistan veterans reach out to one another during the transition home.

Hello, My Name Is USER01: Next Wave of Web Support Groups Values Privacy

by Julia Angwin, The Wall Street Journal

July 7, 2009

When Iraq war veteran Rey Leal was discharged from the Marines last spring, he couldn’t sleep. He would lie in bed at night, replaying the firefights in Fallujah that killed nearly half of his squad, searching for ways it could have turned out differently.

Last fall, as he watched late-night TV to distract himself, he saw a news item about the Iraq and Afghanistan Veterans of America group. (Watch video of the item here.) He got online to find out more and discovered the group’s private social network, CommunityofVeterans.org. Moved by the image of a veteran greeting a soldier returning from Iraq, Mr. Leal signed up for the site. He wasn’t allowed to join until he sent in a copy of his discharge papers to prove he had served in Iraq. Once he logged in, he posted a question asking if others were having trouble sleeping. Within minutes, veterans from around the country wrote in with empathic responses.

“I felt like not only did they understand me, but they embraced me,” Mr. Leal recalled. With the help of the online veterans community, Mr. Leal eventually signed up for psychiatric counseling, enrolled in college and starting sleeping better.

A new generation of peer support groups is springing up that is modeled more on Facebook and MySpace than Alcoholics Anonymous. “It’s all generational,” says Mr. Leal, who is 26 years old. “My friends go on Facebook a lot more than they would go to the VFW hall down the road.”

These online peer-support groups have all the hallmarks of social networks: profile pages, photo albums, blogs and groups. But they lack the Facebook problem of the undifferentiated audience. Everyone from your mom to childhood friends can read your Facebook updates. (Facebook recently announced plans to allow members to send customized updates to different groups of friends.)

To be sure, online peer-support groups have been around almost as long as the Internet. But as users get more sophisticated about the digital trail they are leaving, many are opting to share their deepest feelings in private spaces instead of public online forums.

Consider the evolution of CaringBridge, a network of free social-network sites aimed at supporting patients and families during a critical illness. When Sona Mehring launched the nonprofit network in 1997, each community was given just a unique URL www.caringbridge.org/patientname.

At the time, “that felt like enough privacy,” Ms. Mehring says. “It was like an unlisted phone number.”

But now, she said, CaringBridge offers three tiers of privacy. About two-thirds of families opt for the medium tier—which requires people to register before joining or viewing a community. A small portion choose to create customized privacy settings, for instance by creating a list of people who will be allowed to join.

Ning Inc., a fast-growing network of niche social networks that includes CommunityofVeterans, says that about 40% of its more than 1.2 million social networks are private. Of course, not all are support groups, some are alumni groups or other closed groups.

The purpose of a private social network is twofold: to provide a safe space for discussion that can’t be viewed by outsiders and to provide some kind of verified identity.

Many people don’t feel safe discussing their problems with the digital public. “Online, the social boundaries are so thin that the possibility of someone attacking you is much higher” than offline, says Judith Donath, director of the Sociable Media Group at MIT.

Verified identities are also important in support networks where people want to make sure they will be sharing similar experiences. “People with emotional trauma often feel isolated and like no one understands them,” says Keith Humphreys, professor of psychiatry at Stanford University.

Mr. Humphreys says face-to-face peer-support groups have proved to be quite successful in those situations, and that the evidence about online peer support is also encouraging. He cautions, however, that online interactions can be deceiving: “If I’m crying while I’m typing, you won’t necessarily know it,” he says. “So you risk a miscommunication.”

Still, he says that his research shows that some people will be more likely to seek help in an online forum than a face-to-face group. When he surveyed a group of problem drinkers about why they joined an online support group, he expected to hear about child-care problems or difficulties making time for a face-to-face group. Instead, the top reasons were that the group was available 24 hours a day, seven days a week, and that they didn’t feel comfortable speaking in public.

Online support groups are also complements to offline groups. The Muscular Dystrophy Association, which has 240 face-to-face support groups around the country, also recently paid KickApps to build and host its online social network.

“We have a Facebook page, we have a MySpace page, we have a YouTube channel, but it just didn’t seem to do the job,” said Bob Mackle, vice president of the MDA. “It was more superficial.”

Since it was launched in April, MyMDA.org has attracted 2,200 members. The site prohibits members under age 18, so parents can talk freely about their concerns about their child’s disease without worry of upsetting a child.

Mr. Mackle said parents trade news about treatments, research developments and tips on logistics such as finding the best elevating wheelchairs. Although the association moderates the groups, he said, the discussions have been civil. “Everyone is in the same situation. You don’t see people attacking each other.”

Write to Julia Angwin at julia.angwin@wsj.com