‘BE Community’ Designed for young cancer patients

Oct. 28, 2010, 2:04 a.m.

Imagine a virtual world in which young cancer patients can interact and support one another–a social network that is at once fun, trendy and therapeutic. That’s the vision of Mette Hoybye and Henrik Bennetsen, researchers at Stanford who are collaborating on the BE Community, a project they presented Tuesday at the Future of Health Innovation Conference in Tresidder Oak Lounge.

Hoybye is a visiting researcher at the Stanford Medical Center. She teamed up with Bennetsen, CEO and co-founder of KataLabs, who, in collaboration with the Stanford Computer Science department and Humanites Lab, created Sirikata, the platform on which the BE Community will run.

Hoybye and Bennetsen are especially interested in helping adolescent cancer patients because they face certain challenges that other age groups do not. In recent years, while the cure rate for young children with cancer has increased substantially, young adult patients have not seen similar progress due both to non-compliance issues with self-administered treatments and to differing physiological responses to those treatments.

One of the biggest challenges adolescent patients face is social isolation; it comes at a formative age when socializing is both desired and critical to development. “In medical literature, social isolation is a threat to health on the same level as other factors like smoking, drinking or obesity,” Hoybye said in a presentation on the community on Tuesday.

Unique challenges for adolescent patients require unique solutions.

“Our goal is to make an engaging, interesting environment that meets them wherever they are,” Bennetsen said, “and the social dimension is really important.”

The name of the project is telling. The BE Community is a place for young patients to simply be, to converse with friends on their own terms, and to seek refuge and consolation outside traditional clinical settings.

“We want to introduce the BE Community as a place to be,” Hoybye said, “to be together, to meet others with similar conditions and facing similar challenges…and to try to alleviate the social isolation following a diagnosis of cancer.”

It’s not an escape, however, both Hoybye and Bennetsen insisted.

“It’s like giving you another place to go,” Bennetsen said. “It’s no more an escape than playing golf is an escape. Going on the golf course allows you to engage in certain behaviors and dress a certain way; it means something to you. With the BE Community, because of certain physical constraints–some patients are hooked up to hospital beds–giving the kids a digital place to go is the most feasible option.”

A key aspect of the project is its insistence on using the kinds of social networks that young people already use.

“Do you want to communicate with people where they are comfortable and in the manner that they are already communicating,” Bennetsen asked in the Tuesday presentation, “or do you want to force them to speak your language? We want to talk to the kids where they are, on their terms.”

In the future, Bennetsen would like to see the BE Community integrated with social media like Facebook and Myspace.

What will make all of this possible is the revolutionary platform, Sirikata.

“Sirikata is an attempt to build a very scalable virtual world platform that’s use-case agnostic,” Bennetsen said. “Most of the big platforms out there are built to deliver a game experience mainly, which is a technologically uncomfortable fit. We want it to be more open-ended and more user-friendly.”

What makes Sirikata so compelling is its ability to run a multi-user, three-dimensional environment in a web browser, without the need to install or download any additional software. This convenient access is made possible by a recent re-engineering of the Web’s user interface, Html5, which gives Web browsers new capabilities.

Armed with this technology and backed up by earlier research conducted at Stanford on the efficacy of games and social media as adjuncts to clinical cancer treatment, Mette and Hoybye plan on conducting a case study with 500 young cancer patients in early 2011.

“With the results, we will evaluate psychological measures and more objective measures–do they show up to their appointments, do they take their medicines, etc.,” Hoybye said. “We’ll then compare the two groups and see if it suggests that their engagement with each other in the BE Community has some effect on their treatment and their quality of life.”

One question is whether access to the community will be limited to cancer patients only.

“With time, when the program becomes more broadly available, we can implement privacy and security measures to prevent potential harassment from outsiders,” Bennetsen said. Both he and Hoybye agreed that there is potential for the BE Community and potential offshoots to be used for adolescents with other illnesses, but for the pilot program and the clinical study, only those with cancer will be involved.

Hoybye and Bennetsen have funding from the Danish Child Cancer Foundation through the end of this year, and they are optimistic about future contributions.

“We feel like we’re onto something,” Bennetsen said, “and we’re hoping others will help us breathe more life into it.”

Contact Dana Edwards at [email protected].

Login or create an account