Online patient-helpers and physicians working together: a new partnership for high quality health care

Based on a presentation from the Millennium Festival of Medicine 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.1 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 …