Talk of the Nation – March 3, 2011
A joint study between the Pew Internet and American Life Project and the California HealthCare Foundation finds that one in five Internet users go online seeking others with similar health concerns. And after receiving a diagnosis, especially for rare diseases, an increasing number of people are turning to the web, in the growing trend that the Pew project calls “peer-to-peer health care.”
This AS group was mentioned in the NPR program:
Ankylosing Spondylitis Awareness Project
We are a community of patients, family members, and friends dedicated to raising awareness of ankylosing spondylitis and related diseases in both the general public and the medical community. We support the mission of the Spondylitis Association of America.
More Info: http://www.hurtingbuthopeful.org/home.html
This brings to mind a similar study from May 2010, in which Rheumatoid Arthritis Guy was cited:
Web 2.0 Platforms and Health Care: How Online Support Groups, Blogs and Social Networking Sites are Facilitating Online ‘Communities of Care’
Blogs can often attract quite a “large and dedicated readership” because they “engage people in knowledge sharing, reflection, and debate” (Boulos et al, 2006). One such blog with a large readership is “Rheumatoid Arthritis Guy – Adventures of a superhero on his journey through chronic pain and debilitating inflammation”. Rheumatoid Arthritis Guy (or RA Guy for short) shares not only his journey through a chronic disease, but comprehensive information about auto immune diseases and their treatment. RA guy also has a Facebook profile with links to the blog, and also a Twitter presence, again which links back to the blog. The blog has multiple comments to each post, and additional comments are also posted on RA Guy’s Facebook profile whenever he puts a link to the blog.