case study: healing in community™ online

8/8/2019 Case Study: Healing in Community™ Online

http://slidepdf.com/reader/full/case-study-healing-in-community-online 1/3

H E A L I N G I N C O M M U N I T Y

Foundation

Sophia's Garden

Healing in Community™OnlineSophia’s Garden Foundation/Qwaq Case Study

Sophia’s World

Sophia Herzog Sachs was born in 2001 with Niemann-Pick Disease, ype A,a rare and incurable genetic disorder. At the age o 10 months, she wasdiagnosed with the disease and her parents were told that she would only live to the age o 2 or 3.

As Richard Sachs and Karen Herzog began their journey o coping with Sophia and their amily’s needs, they discovered that our present healthcare system did not meet many o the physical, emotional, spiritual and nan-

cial needs that arose. What happened over the next our years was nothing short o extraordinary. Drawing upontheir backgrounds in sales and high-tech marketing, they began to reach out or help. Te response amazedthem. Individuals and groups rom all walks o lie and elds o endeavor were drawn into what became apalpable circle o healing. Moved by Sophia’s radiant presence and the amily’soptimism and openness, as well as inspired through the experience o com-munity, people began to respond in unprecedented ways. Te walls betweenpeople, disciplines, and geographic boundaries dissolved—ostering collabo-ration, compassion and creativity. Te level o integrated care that Sophiareceived rose exponentially. In this supportive, amily-centered environment,people’s hearts were ree to break open, and a healing community was born.

Karen and Richard believe that those who participated in this community over the our years o Sophia’s lie did,

indeed, experience their time with her as an opportunity or growth and healing. Tey wish to oer the open-ness and collective wisdom o Sophia’s healing community to others so that we all might learn how to better careor children with lie-threatening conditions. Tey see this as Sophia’s legacy to the world.

Healing in Community™ Online

Imagine a world where such amilies are not alone—a world wherethe collective healing wisdom o humanity is accessible to all, especially children thought to be incurable, and where amilies nd strength, hopeand healing through their communities. Karen and Richard ormedSophia’s Garden Foundation (SGF) and it’s rst initiative is to createan integrated, Web-based survival kit or amilies o children diagnosed

with lie-threatening conditions, Healing in Community™ Online(HICO), that inorms, supports and enables amilies to harness thepower o community to address all o their needs—physical, emotional,nancial, social, cultural and spiritual.

In the Spring o 2006 Karen and Richard began to look at ways to create these healing communities using new Internet technologies (Web 2.0). With a team o expert advisors they conducted an exhaustive study o a widevariety o open source and hosted technologies that might help them implement their vision o HICO. In thespring o 2007 they saw a demonstration o Qwaq Forums, a new 3D collaborative environment created by Qwaq, Inc. Based on the open source Croquet Project, Qwaq Forums was more oriented towards the security requirements o business use than other virtual environments like Second Lie and it oered some criticalcollaborative capabilities not ound in other virtual worlds.




Foundation

Sophia's Garden

Qwaq Forums was designed to signicantly enhance the productivity o distributed teams by bringing criti-

cal resources together in a virtual place, as i they were in the same physical location, and would provide teammembers with all the tools and collaboration capabilities they needed to work more eectively together. For ex-ample, with Qwaq Forums, HICO users would be able to collectively establish workfow steps, create or review inormation in sotware applications, and evaluate inormation in 2-D and 3-D, all while discussing topics usingbuilt-in text and voice chat. Te other important benet o using Qwaq Forums or the HICO project was thatthe HICO spaces would always be available; users could return to the environment any time to view changesor to continue working or collaborating.

A Virtual Mirror World

Te HICO project team envisioned HICO as a virtual world that would mirror everyday lie, where amiliescould work, share documents, and meet with amily, riends, health care practitioners and others using chat andvoice communication. Just like in their real world, amilies could collaborate in private meetings, or talk inor-

mally in a secure environment. Unlike the real world, in HICO, the community could be built and maintained,unlimited by time and geography.

Greg Nuyens, the CEO o Qwaq pledged resources and support to helpthe HICO project, and over the summer o 2007, Karen, Richard andthe HICO project team decided to create a HICO prototype in Qwaq.

With a set o “user stories” and roles or those that would be usingHICO, they began to build a town online using Qwaq as the rame-

work or building a series o rooms designed to help with some o theHICO unctions. Tey ocused on “aylor,” a 12-year-old child withcancer, his parents, Bill and Sylvia, and his health care providers to givepotential users o HICO an idea o what they could expect in this

community. By the all o 2007, Karen and Richard were demonstrating “aylor’s world” to health care andtechnology audiences in the San Francisco Bay Area.

Each member o the community has a simple avatar that lets you andothers know where you are at all times. A variety o animated coaches helpto train and orient the community. aylor’s parents navigate his care and theamily’s needs using the same desktop and web applications that they’re usedto, yet in context in a secure environment. Coupled with a amiliar spaciallayout, presence indicators provide social cues that enhance collaboration. InHICO, Bill and Sylvia can browse a web site like Daily Strength, an onlinehealth network, to nd other parents in similar situations, with whom they can connect and invite to be part o their HICO community.

aylor’s room is an online space that he can make his own (see the pictureson the wall that aylor used to decorate his room). A coach (another screenin the room) reminds him on entry not only to keep his room clean, butalso to make sure he does his homework and takes his medications. Usingone o the screens in his room aylor, who is bed-bound in the hospital, can

work on his current homework assignment with some o his riends romclass. All o this is easily done in Qwaq, which allows you to drag-and-dropdocuments rom your desktop to be shared in aylor’s room.

2



Qwaq also allows aylor’s parents to consult with their doctors and other health care providers on a regularbasis without having to endure long and expensive drives to the hospital. Te Children’s Health Center has thetrusted look and eel o a real medical room, with the added benet o being open or visits 24/7. Similar to aace-to-ace appointment, in this medical exam room the doctor can show aylor’s parents his latest X-rays, andadditional inormation about aylor’s disease. Because it is an interactive environment (using text chat and VoIP)aylor’s parents and the doctor can talk about aylor’s condition and progress without any telephone chargesand present much more complex inormation than they could over the phone and through email.

Next Steps

Although SGF is still prototyping HICO and looking or seed unding, the next step is to start to populatethe environment with members o the Sophia’s Garden community to get their reactions to the environment.Once that is done, and with some additional unding and resources, SGF will open up this environment toa ew amilies that currently have terminally ill children or a test drive o HICO.

About Sophia’s Garden

Sophia’s Garden Foundation is creating and proliferating a community-based approach to healing, Healing in

Community™, as a compassionate and highly effective way of caring for children with life-threatening conditions,

and as a way for families to take charge of their child’s health care and to improve the quality of life, lengthen

life span and ultimately nd cures.

www.sophiasgarden.org

About QwaqQwaq Inc. is creating virtual spaces for the enterprise that enable collaboration in ways that weren’t possible

before. Qwaq Forums, the company’s rst product, is a secure virtual workspace application that signicantly

increases the productivity of distributed teams by bringing critical resources together in virtual places, as if they

were in the same physical location. A highly interactive and persistent environment, Qwaq Forums enables users

to work, collaborate with others, and identify and solve problems. Qwaq’s founders, executives and advisory board

members are all seasoned technology industry veterans and thought leaders with extensive experience working

together to build successful companies.

www.qwaq.com


520 El Capitan Place, Palo Alto, CA 94306 P:650.813.0895 F:650.813.0896 www.sophiasgarden.org

Foundation

Sophia's Garden

© 2007 Sophia’s Garden Foundation 3

case study: healing in community™ online

Documents