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[berkman] Social networking and medicine

Tony Ferraro and David Stone are giving a Berkman lunchtime talk on on “Applications of Social Networking Technology to Medical Treatment.” They’re talking about applying social networking to victims of trauma and torture. David recommends Richard Mollica’s Healing Invisible Wounds. [As always, I’m typing quickly, summarizing, missing points, getting stuff wrong…But the podcast will be available on the Berkman media site.]

There are three technology components to David’s model for using social networks for victims of trauma and torture: Psiphon to build community for people in closed countries , 360Hubs, and using SecondLifeSecondLife for the victims of trauma. He starts up SecondLife and visits a genealogy island, Adam ondi Ahman. It offers lanterns to those who are grieving. “SecondLife could be a valuable tool in the treatment of trauma.”

Q: How about much of the world that doesn’t have access to SecondLife?
A: Psiphon allows some communication between those who have left and those left behind.

Q: [me] What would a SecondLife therapeutic community for victims of torture and trauma be like?
A: I’ve been observing SecondLife communities engage constructively to support one another. I think it’s possible to intentionally create such a community.

Q: Would there be therapists identified as such?
A: There already are. Maybe someone at Berkman knows the law about licensing therapists in SecondLife…

Now Tony talks about 360Hubs. “The world is changing,” he says. He points to OneBillionBulbs.com, an organization encouraging people to switch out ther incandenscent lightbulbs. “How can we use the Internet to impact the society in which we live.”

Affinity Hubs are “specialized, web-based relationship networks where hub mumbers have a common interest or practice, i.e., a professional practice, an alumni association, or sports affiliation.” 360Hubs’ tools are: Web content management, knowledege management, online collaboration and social networking. “If we can connect researchers across the Web and put them in touch with victims of trauma, the inter-agency infrastructure the patient communities, social support, information…bringing them together in these Web communities…”

360Hubs typically has dealt with businesses. Now they’re applying it to trauma victims. It enables a community to aggregate and focus.

Q: How do you screen out quacks?
A: [david] We’re trying to empower a population that’s already doing work — manage it, measure, etc. — so they can be more effective at it.

A: [tony] We can build in identity validation.We can keep people out of the community until they’ve been validated.

Q: Where are you in the process? What are some of your strategies for bringing together experts and users?
A: [david] We’re just getting launched. Over the next six months, we’ll be writing funding proposals.

Q: Are you trying to engage notable people in the field first? How do you build a community?
A: The communities are already there. They just don’t have the technical infrastructure/ There are maybe 60,000 people in Atlanta who have undergone torture and trauma.

A: [tony] David needs to identify exactly the needs of the infrastructure. He’s refining the vision.

Q: You will inevitably be seen as validating people.
A: [tony] the Internet already does that.

A: [david] I use the Internet to supplement real life interaction.

Q: As more and more counseling services are available in SecondLife and other Web services, it enables people who don’t get out never to get out. It becomes one more way to sit and get what they want without ever interacting with real humans.
A: [tony] For some people, it enables people who can’t deal with going out to connnect with others.

Q: Are you familiar with grouploop.com for kids dealing with cancer. There are therapists and various levels of privacy.
A: [tony] Our software lets you manage privacy, so can specify who has access to what you write.

Q: What’s the policy for putting up information?A: [tony] It’s different for every org we deal with.

Q: Isn’t there more room for government involvement, coordinating agencies, ensuring the privacy of shared medical data, etc.
A: [tony] Those are all real concerns.

Q: [me] Beyond the technology, how are you going to get people involved?
A: [david] Everyone I’ve talked with wants to be involved, mainly people at agencies and organizations.

Q: And the policies, affordances, etc.?
A: I’ve created self-sustaining communities before. We’re just beginning to think this through for this particular application. We are beginning together a team, to go out and learn from people, etc. It’s a stone soup situation: Everyone who participates brings something to it.

A: [tony] The community will work this out. It’ll change through the community. [Tags: ]

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