Creating a Social Network for Adolescents with Cancer



Ellis Rochelson* Ellis Rochelson*, Mount Sinai School of Medicine, New York, United States

Track: Practice
Presentation Topic: Building virtual communities and social networking applications for patients and consumers
Presentation Type: Rapid-Fire Presentation
Submission Type: Single Presentation

Building: Joseph B. Martin Conference Center at Harvard Medical School
Room: A-Pechet Room
Date: 2012-09-15 09:00 AM – 09:45 AM
Last modified: 2012-09-12
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Abstract


Adolescents with cancer often feel isolated from family and friends. Their struggle with cancer is exacerbated by the marginalization that may occur. Online social networking might reduce the sense of isolation common to these children.

We began Bingu.org in 2011 as a social network for adolescent patients ages 13-21 at Mount Sinai Medical Center’s Hematology/Oncology outpatient clinic. MSMC, located in East Harlem, provides comprehensive services to patients throughout the New York metropolitan area. Bingu.org allows teens to blog, post photos, and discover other teenagers who understand what they’re going through.

Research has shown that adolescent patients may slip through the cracks of our healthcare system. This is evident in most pediatrics clinics, where cartoonish wallpaper, arts & crafts activities, and simple toys are meant to entertain younger patients. Today’s teenagers require interaction with peers, and for many of them this means online social networking.

Although many Bingu members have a Facebook account, such a diffuse and public community may not meet their needs. Bingu – an acronym for “But I’m Not Giving Up” – allows young patients with cancer or blood disorders to connect in a secure and candid environment. The content of the site is unavailable to search engines, and new members must be approved by the site administrator. This level of security is important to allow teens to share openly and to reassure parents.

From 9/2011-4/2012, Bingu has registered 28 members. Those recently diagnosed reach out to patients in remission and ask them what to expect. Teenagers receiving chemotherapy send each other messages of support and strength. Before joining the site, almost no teen knew of other patients with a similar condition. Now they each know over two dozen.

Although there are other, larger social networks for sick children, Bingu offers a more personal environment for those who share similar conditions in the same geographical area. The personal involvement of the moderator allows attention to the cultural and economic challenges of the community in which the site is based.

Our goal is that other hospitals across the country will create their own social networks for their communities, resulting in a regional strategy for patients with similar challenges. Such sites may be created with no professional training in computer science or web design. We used the social network service SocialGo, creating Bingu using their graphical user interface and without writing a single line of code.

The greatest challenge in creating Bingu and other similar sites may be in overcoming peoples’ fears of allowing teenagers to use the internet. Such projects may meet a skeptical and nervous response from hospital administrators. There may be concerns that giving teens the ability to connect online will inevitably lead to cyber-bullying, HIPAA violations, and inappropriate relationships. These concerns are real and must be addressed, but they should not deter us from the great benefit these online communities may provide to sick children.

Future plans include expanding support for adolescents with different medical conditions, branching out to other local hospitals, and obtaining resources to provide computers for adolescent cancer patients unable to purchase their own.




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