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Wednesday, February 4, 2009

In the sea of online hypochondria: Paging Dr. Google to get second opinions – Part 1

Terri Nelson's experience in 2008 is very different from what it might have been in 1998. Terri, who lives in Portland, Oregon, received her diagnosis on August 11. She had two weeks before a follow-up visit with her surgeon. She and her husband Stewart used the time to research fibroids and the most common treatments.

She started with straightforward information gathering, checking the articles on fibroid tumors on sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. "Those had to be evaluated carefully to find the nuggets of valid information in the sea of online hypochondria," she noted.

Having spent many years trolling boisterous online forums, however, she had developed that essential Internet search tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant. She found a blog for the layperson, "Inquisitive Geek with Fibroid Tumors," that featured wide-ranging discussions that she found useful and specific to her condition.

By the time she had the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-sized tumor was a hysterectomy. But since that can impair sexual response, among other side effects, a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Terri’s research.

Advice for finding Internet information on your medical condition: Start with a broad authoritative source by respected clinicians, and then supplement that by finding the blog of a passionately absorbed knowledgeable person who has the condition you do.

See a short video about the need for a second opinion.

Thanks to John Schwartz for the source article in the New York Times of Sept. 30, 2008.

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