As a neurologist subspecializing in epilepsy at a respected academic institution, I (DH) assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.
In September of 1994, John Lester, my colleague in the Department of Neurology at Massachusetts General Hospital, showed me an online bulletin board for neurology patients that he had created . In reading through the online messages, I observed hundreds of patients with neurological diseases sharing their experiences and discussing their problems with one another.
I knew that many patients with chronic diseases had been making use of online medical information . Nonetheless, I was shocked, fascinated, and more than a bit confused by what I saw. I’d been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters. Thinking back through my years of training and practice, I realized that there had always been an unspoken prohibition against groups of patients getting together. I had the uncomfortable sense that by promoting interactions between patients and de-emphasizing the central role of the physician, I might be violating some deep taboo.
Hoch D, Ferguson T. What I've learned from E-patients. PLoS Med. 2005 Aug 9;2(8):e206.