[MOL] Online patient-helpers and physicians working together [00118] Medicine On Line

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[MOL] Online patient-helpers and physicians working together

Education and Debate: Online patient-helpers and physicians working
    together: a new partnership for high quality health care
    [11/03/2000; British Medical Journal]

In January 1998 Karen Parles, a 38-year-old librarian at a major
New York art museum, learned that she had lung cancer. "My doctors
told me it was incurable, that I had only a few months to live,"
she recalls. "I'm a lifelong non-smoker, so the whole thing came
as quite a shock. I was pretty overwhelmed at first. But as soon
as I could, I went on to the internet, looking for information.
And I asked all my friends to help.

"I found a great support group for lung cancer, the Lung-Onc mailing
list. The other patients on the list answered my questions,
suggested useful sites, and gave me a lot of invaluable support.
But even so, I had a hard time finding the information I needed.
There was great stuff out there, but it was scattered across
dozens of different sites. There was no comprehensive site that
provided links to all the best online information for this disease."

Through a friend of a friend, Karen heard that a surgical team
at Boston's Massachusetts General Hospital was developing a new
treatment for her type of cancer. "I went to Boston to see them
and I was pretty impressed," she says. "But having a lung removed
by an unproved procedure still seemed pretty frightening, so
I shared my fears with my Lung-Onc friends. I heard right back
from eight or ten others who'd had a pneumonectomy. They assured
me that I could do it and encouraged me to give it a shot. I
was the twelfth patient to undergo the new treatment. That was
nearly a year and a half ago, and so far, knock on wood, I'm
doing fine." 

Like many other patients who have used online support groups,
Karen found the information she found there invaluable. "The
group was a great source of advice for dealing with day to day
problems during my recovery. Patients who've had chest surgery
often have trouble sleeping because every possible position makes
your ribs hurt. The folks on the list can tell you exactly what
to do. 

The full article can be found at:


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