What Are the Dangers of “Social” Networking about Health?
The other day, I found an article in Time Magazine which explains how lay people—like myself—are learning as much, if not more, about their condition as they learn from the specialists.
“Thousands of patients like deBronkart are learning as much online — and from one another — as they are from their doctors. These laypeople are banding together and starting websites to help figure out which practitioners to see and which hospitals to avoid, which clinical trials show promise and which experimental treatments are bunk. But as people take more control of their health care — joining an empowerment movement many are calling Patient 2.0 — plenty of doctors are worried about the quality of the information that is being assessed as well as patients’ ability to understand it.” Read more: http://www.time.com/time/magazine/article/0,9171,1957460,00.html#ixzz0f8oTOkj8
I have been writing about my head injury for some time now, and after reading the article, I wondered, what dangers could be associated with sharing one’s story?
“Just because you have the tools to work on your sports car doesn’t mean you’re ready to do it,” said Duke neurology professor Dr. Richard Bedlack.
Dr. Bedlack makes an excellent point. Because each person’s brain is so different, what works for me may not work for you.
I find that writing is quite therapeutic, but for someone else who has sustained brain trauma or hypoxia, it may prove catastrophic! While an drama student in Australia finds it helpful to share her story on Youtube, I can’t really picture myself doing a documentary on my accident and struggles—even though I’m inspired her stories.
Alicia, formerly known as Jane before her head injury, responded to her disability by starting a theater group and become an active member of the community. She also works to raise public awareness about people with brain damage.
Now that Web2.0 has taken hold of today’s society, there are more and more networks popping up where people can share stories about their lives, conditions, medications and their side-effects, in addition to being able to ask questions which may be specific to them.
I concede, however, that the advice one can get in online networks may not be approved by the people who have dedicated much of their lives to learning about such conditions, but with knowledge comes power. Who in his right mind would ever consider performing neurosurgery on either himself or a loved one without the proper training and years of experience in the operating room.
But as far as sharing what works for you—as long as you present the information you share that way and not like you are a specialist—promotes good health and helps others in learning that they are not alone in their struggle to regain new life.
I’d love to hear your thoughts on this and any other related subject…so leave a comment.