If all of this sounds scary, remember your oncology training: denial, anger, bargaining, acceptance.
Scary? My data? This is normal, every day internet use, especially compared to what they were about to hear from Gilles Frydman of ACOR.org, Simone Sommer and Josh Sommer of the Chordoma Foundation, and Jamie Heywood of PatientsLikeMe.com. Patients telling each other where to go for treatment, tracking drug side effects for post-marketing surveillance, owning their own data, refuting their doctors’ advice, raising money to direct their own experiments. They are the radicals, the superheroes, the wild-eyed optimists who believe they can transform medicine from the bottom up.
Great stuff… as I mentioned in a post yesterday… you (as physicians) may not want to engage patients online— but imagine how medicine would change if we were online and engaged in dialogue for the same purpose…after all—
WE ARE ALL PATIENTS.