Online community

I'm in a hurry, but I'm going to try to dash this off before my next meeting. I wanted to share my own positive experience with online community. In 1996, when the web was just taking off, a family member was diagnosed with a life-threatening form of leukemia. I immediately searched the web for information, and within a short time met a guy online with the same disease in England, who had just started a list-serve for patients.

Keep in mind that list-serves were not widely used by the public @ that time. Soon, others joined, and one brave leukemia survivor named Barb Lackritz became our de facto leader (sadly, she passed away from this stupid disease a few years ago). This kind of leukemia is often slow, but deadly, so patients often have a good deal of time to research treatments. Through this listserve we found the best center in the world for this kind of leukemia (not, as you might think, Fred Hutch here in Seattle, but M.D. Anderson in Houston). We traveled there for a consultation (on Sept. 11, 2001, ironically--but that's another story) and my family member ended up using their experimental protocol. Today, that protocol has become the gold standard and people enjoy longer remissions because of it.

Our listserve was a precursor to ACOR, which today has listserves covering many types of cancers. Things I learned from the listserve that would have been impossible before the internet included: real patient stories from around the world of treatment successes, failures, and side effects; information directly from leading international researchers who monitor the list; and information that contradicted "standard medical practice" of the day, but which in the intervening 10 years has been shown to improve outcomes. Patients and families from our list have testified before the FDA and founded multiple research organizations. List participants range from patients who happen to be biology professors and statisticians (both handy people to have onboard, by the way) to all manner of scared but determined everyday people, to highly respected researchers who have a unique opportunity to connect directly with patients living with this disease. Believe me, courage lives on this list.

The listserve has the usual problems of flame wars and misinformation (people's tempers run a tad high when they have an incurable illness), but a savvy listmember can find information unavailable anywhere else.

And that's why I get really irritated when medical doctors pooh-pooh the internet. Some medical doctors are themselves unlucky enough to get this kind of cancer, and they tend to seek out our little listserve and participate actively.

So--Vaun's drawing of the toilet stall is accurate (and I agree with him in many ways). But there is also a noble--and sometimes lifesaving--side to internet community.