In
May, I spoke at the Chronic Care and Prevention Congress about my most
recent report, “Chronic Disease and the Internet.”
I talked
about the social life of health information and the internet’s power to
connect people with information and with each other. Living with
chronic disease is associated with being offline – no surprise. What’s
amazing and new is our finding that if someone can get access to the
internet, chronic disease is associated with a higher likelihood to not
only gather health information but to share it, to socialize around it.
I built
my talk around two examples of how health care can either take advantage
of patients’ shared wisdom (and innovate) or ignore it (and fail).
My
innovation example was CureTogether’s crowd-sourced migraine findings: 147 treatments were evaluated
and ranked according to their effectiveness and popularity, with some
surprising results. My fail example was taken from Diana Forsythe’s
classic essay, “New Wine, Old Bottles.” Designers of a migraine
information resource asked a single doctor what he thought patients
should know, rather than going directly to the patients. Not
surprisingly, the number one question asked by newly diagnosed migraine
sufferers was not addressed: Am I
going to die from this? Ridiculous to a doctor, but
essential to a patient.

