I always suspect that audience members have as much to share as I have to say. So when Mary Madden and I received an invitation to speak at the National Institutes of Health we created a participatory talk about participatory medicine: 35 minutes of our findings; 45 minutes of discussion. It was a blisteringly hot […]
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Information Therapy Conference–Susannah Fox
The Information Therapy conference just ended yesterday and my head is buzzing with a few favorite moments: 1) Josh Seidman‘s speech connecting our venue, the Newseum, to his mission by talking about the history of the U.S. press, mail system, and medicine: the Pony Express was viewed as so democratic that it was almost subversive. […]
Poor and Elderly E-patients
The current issue of the Journal of Health Care for the Poor and Underserved features an article based on a August 2006 survey by the Pew Internet & American Life Project. Unfortunately, the full text of the article, “The Telehealth Divide,” by Mary Schmeida and Ramona McNeal is behind a subscription wall and press coverage […]
Wow! How? Psychedelic Outlaws
Imagine the nerves behind one of your eyes suddenly bursting into flames of pain, relentlessly burning for hours. The pain recedes, then roars back, day after day. You try to describe what is happening inside your head to your family, your clinicians, even yourself, but words fall short. It is the worst pain a human […]
Rare Disease in the NYT
My phone started blowing up with texts from friends and family members yesterday morning, alerting me to a New York Times magazine cover story by Amanda Hess, “My Son Has a Rare Syndrome. So I Turned to the Internet” (gift link). Hess writes beautifully about her experience being dropped into the medical maze and her […]
Rebel Health on The Nocturnists
Today is the one-year anniversary of the publication of my book, Rebel Health. To celebrate, I am inviting you to listen to my favorite conversation about why I wrote it and what lessons we can all draw from the patient-led revolution. Emily Silverman, MD, is the host of The Nocturnists. She suggested that I start […]
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