ESUN

The Unconnected Patients, Caregivers, and Survivors

By Bruce Shriver, PhD
Editor-in-Chief, ESUN

There is a growing body of literature devoted to attempting to understand the range of impacts that the use of the Internet is having on our behavior as individuals and as small and large groups or people. An interesting review, "The Computer Made Me Do It," by William Saletan, concerns two books dealing with these issues. It appears in the Feb. 13th New York Times Book Review. Saletan reviews Virtually You: The Dangerous Powers of the E-Personality by Elias Aboujaoude and Reality is Broken: Why Games Make us Better and How They can Change the World by Jane McGonigal. As is obvious by the two titles, these authors value the impact at opposite ends of the spectrum. Additional recent books that help balance and/or reinforce these views are listed at the end of this editorial.

There is undoubtedly some degree of truth in both the positive and negative societal influences articulated by the authors of these books because of the diversity of people using the Internet. But one thing is clear to me in the breadth of social media settings that I have encountered to support sarcoma patients, caregivers, survivors, and those who have lost a loved one to sarcoma over the past seven years. Online support networks are not only places of incredible information exchange, they are places of compassion and understanding, of shared insights and selfless giving, and of people – initially total strangers -- reaching out to help, comfort, and support one another. It does not matter where you live, what the color of your skin is, what your religion is or whether or not you are religious at all, people reach out to help. The keyboard and screen we sit behind are the great equalizers. Everyone is treated as a fellow traveler on the journey with this rare and dangerous disease called sarcoma.

While there are several thousands of people dealing with various subtypes of sarcoma who are actively participating in online support groups (such as ACOR), there are also tens of thousands or people who are not participating for any number of reasons. Knowing the value of these online communities, we immediately ask, "How can we locate and help these unconnected patients, caregivers, and survivors get connected?" Your suggestions would be greatly appreciated.

Additional Resources

• You are not a Gadget: A Manifesto by Jaron Lanier
• Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives by Nicholas Christakis and James Fowler
• Cognitive Surplus: Creativity and Generosity in a Connected Age by Clay Shirky