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February 10, 2010 / Mark Kerrigan

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.

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2 Comments

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  1. Wrasseler / Feb 12 2010 3:13 am

    Heather Conroy, a doctoral candidate with a profound interest in brain injury (http://heatherconroy.wordpress.com/) makes some good points about Emotional Intelligence.

    This is important because I think there is Spiritual Intelligence, Emotional Intelligence, Empirical Intelligence, Social Intelligence, sigh… it’s easy to feel inadequate around so much intelligence.

    It seems we all have different kinds of intelligence. We are all different. We are all connected. We all share our stories differently. It is our stories that connect us.

    I described a network of brain injury survivors to my caregiver today. Some are feet, some are ears and eyes. Some are the tail (and wag). Some are the mouth. Sometimes we walk on our mouth. Everybody laughs.

    Review Empirical History. Its nature is controversial. Science is a succession of condemnations of emerging genius. Its intelligence operates this way. Informed Consent, by accepted Empirically Intelligent definition, is voluntary participation in exchange for a full disclosure of risks and responsibilities.

  2. Noreen Fraser / Mar 5 2010 7:41 am

    I have had a brain concussion. I have the experience in which Science bases a great deal of emphasis in research to validate their theory. That makes my experience important. I don’t see anything wrong with sharing our experiences to help each other along the way, like you said, as long as we are sharing experiences and opinions, and not presenting ourselves as specialists. Doctors are trained to identify symptoms, prescribe medications and weigh out the risks of surgical procedures. Doctors are men and women. They are not gods. Sometimes they get it wrong.

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