A report prepared by Jane Sarasohn-Kahn for the California HealthCare Foundation entitled The Wisdom of Patients:  Health Care Meets Online Social Media, details how social media on the Internet is educating health care consumers and providers.   Social media includes social networks (MySpace, FaceBook), blogs, wikis, picture-sharing (Flickr) and video-sharing (YouTube) sites, as well as web-based ”communities” where patients with the same disease/condition can meet.  Social media appeared as the Internet evolved from strict information retrieval with read-only capability (Web 1.0) to the interactive Web 2.0, which allows people to post, share, and comment-on information.   Ms. Sarasohn-Kahn refers to this sharing of health-related information as Health 2.0 and describes how this new medium facilitates the grouping together of people with similar health concerns.  This results in the posting of  health information that is more important and relevant to the individual consumer.  These online collaborations are changing the way that patients, health care providers, and researchers learn about therapeutic regimens and disease management.   In her comprehensive report, she  details the positives and negatives of Health 2.0 and predicts how it will evolve in the future.    

One example in the report really demonstrated to me how this dynamic  medium can be useful to an individual patient.  On a social network called PatientsLikeMe, “Joe” posted  that he had been trying for 10 years to manage his leg spasticity, a common symptom of multiple sclerosis.  His doctor had prescribed a low dose of Baclofen, a muscle relaxant, telling him that a higher dose would cause him problems.  After “Joe” joined the network, he learned that people in the MS online “community” were taking up to 10 times the dosage that his doctor had prescribed for him.  “Joe” then asked his doctor to increase his dosage and his condition improved.   If it hadn’t been for the social network that “Joe” joined, he would still be suffering from leg spasticity.  Thinking about this example, I also thought how the network had encouraged “Joe”’s doctor to try a new treatment regimen that he ordinarily never would have tried, and how this new regimen turned out to be quite successful for ”Joe”.     

Ms. Sarasohn-Kahn includes a glossary of social media terms and a list of useful Health 2.0 websites in her very interesting report.  Definitely good  reading!

(The full report can be accessed at the California HealthCare Foundation’s summary of the report.)

Submitted by: Alice McCreary, Reference Librarian
on May 08, 2008 - 2:16 pm

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