From PR Newswire:
In 2001, seeing a need for patients to connect with one another, Hill worked to develop an interactive online forum where patients and survivors could share their knowledge and tell their stories. Christine Brader joined the forum after her first oral cancer diagnosis in 2007. “When I was diagnosed I didn’t know which way to turn, and by finding others who had gone through it, I gained significant peace of mind,”
Online support groups are one of the ways that technology will change how we manage chronic and long term disease in the future. The instantaneous worldwide ability to communicate now gives patients, care givers and medical dental professionals a way to share information that simply did not exist before the advent of the Internet.
As we develop these programs the result will be improved treatment and reduced costs. For now the idea is so new we don’t really yet know how best to do it. Where do you draw the line between sharing and reviewing information for reliability? Is a radical treatment really a good idea? And how do you keep the forum open and protect individual’s privacy?
So far many of the forum users are happy and enthusiastic; from the linked article:
Ed Brown, now a 12-year oral cancer survivor says, “Finding each other is the greatest thing that has ever happened to us. When you feel like you’re some kind of freak and struggling alone with your issues, it’s the best feeling to find out there is someone else out there who has dealt with the same thing, someone who knows what it’s like, someone who understands the “work-arounds” for some of the complications of treatments that we all deal with. Thanks to the forum I now know 10,000 survivors who because of our shared experiences are a resource I can turn to.”