Last week I was lucky enough to go to the Health 2.0 Conference (http://www.Health20con.com) and hear an engaging and sometimes shocking panel featuring patient bloggers. Time has proven the concept that patients need to tell their stories, and others with the same diagnosis need to hear them. The panel started with three video stories: a concert pianist, a woman with Reflex Sympathetic Dystrophy, and a group of people using Second Life http://www.secondlife.com as a place for disabled people to “live.” All of these sites, and the ones developed by people on the panel, were developed by people who were frustrated by the information given by physicians.
The moderator is the founder of Diabetes Mine(http://www.diabetesmine.com), which she started when she was diagnosed as a young adult with Type 1 diabetes.
After the videos, the panel came on. The first panelist lost 80 pounds through Daily Strength (http://www.dailystrength.com).Ranae Whitmore, who is Heartgirl from Daily Strength, says she found Daily Strength because she needed to share her problems with weight somewhere without judgment, and not among people she already knew. She uses the site for support when she feels like she’s in trouble.
Clearly the online environment liberates patients who can’t talk to their busy doctors, are embarrassed about their conditions, are anxious that their diagnosis will be career-limiting, and also those who simply need more information.
The next step after reading a patient blog is to join an online community. There are many out there with slightly different foci.
The biggest of those is HealthCentral.com, which has forty different sites devoted to common conditions. Under each community is a sub-community–eg. husbands of people with breast cancer, caregivers of relatives with Alzheimer’s disease. One really interesting feature is patient stories that are turned into comics, so they can be more easily understood.
Another panelist started the “I’m Too Young for This” foundation for young adults diagnosed with cancer when he was diagnosed twelve years ago.