Social Networking For Medical Patients

Medicine Online
Medicine Online

A vivacious grandmother, Sheila Engedahl, has always been the life of the party.

But 10 months ago, she was diagnosed with ALS, also known as Lou Gehrig's Disease, an incurable neurological disorder that destroys the body - but leaves the brain untouched. With the moral support of her friend Sue McGovern, she agreed to talk to CNN's Dr. Sanjay Gupta, a CBS News contributor.

"I was devastated: Devastated that I had it and devastated that there was no treatment for it," Engedahl said.

Now she has a page on a social networking site. But she's not keeping up with friends; she's trying to find a treatment for ALS on a Web site called Patients Like Me.

Conventional wisdom says that doctors and health care professionals know disease best. But patients like Sheila Engedahl know what its like to live with a devastating illness. And they're not only sharing their experiences but also driving research into new treatments.

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"When they come home from the doctor, they might have answered their medical questions well. But the meaning and its impact on their life and what to do and the issues are not answered - and they come seeking those answers," said James Heywood, who with his brother Benjamin founded Patients Like Me.

Their idea was to take the medical records of ALS patients like Engedahl, as well as other diseases, and make the information available to anyone else on the site. The goal of this experiment in real time? Revolutionize the way patients get their information.

"The first thing you get is how you're doing relative to the rest of the world, is my disease progressing fast or slow?" Ben Heywood said. "What treatments am I on relative to other patients? Am I taking it at a dose higher or lower to other patients? And that's information a patient really can't get anywhere else and immediately they find out where they stand in the world."

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Last year a small study found that 16 ALS patients benefited by using the drug Lithium. Once word got out to the 2,800 people in the ALS community on the Web site, patients started trying it.

A conventional clinical trial that might take years to organize was up and running in a matter of days.

The Heywood brothers know from personal experience. Their brother, Stephen, was diagnosed with ALS at age 29. The research those two MIT-trained engineers launched to try and save his life was the subject of a documentary film and led to the creation of the Web site. Stephen died two years ago, but his Web page is still active and patients are still able to learn from him.

"The collective wisdom of hundreds of thousands of patients really is smarter than any one person, no matter how well researched you are," Heywood said.

Even as she feels herself weakening, Engedahl hopes the power of shared experiences will speed the pace of research.

And she thinks something will come about to help her in her lifetime.