– Zoe Brain, in a comment on the New York Times magazine story, The Hazards of Growing Up Painlessly, which garnered an extraordinary display of public ignorance and fellowship around rare conditions. My hope is that the reporter and editors read every comment and learned from the community peer review of the article.
– Joseph Newton Pew Jr., 1946 (a key part of the history of the Pew Charitable Trusts) I explain why this has become one of my mottos in an interview with Chris Snider: Just Talking.
– the line I added to my speech on the train up to Philadelphia last Saturday. I wanted to convey to the people attending the 2012 Moebius Syndrome Conference that I admire them and see them as pioneers of peer-to-peer health care. My full post is on e-patients.net: Health Care Hackers
“People who think that people with disabilities can’t do anything, that we’re fragile and in need. People who think we are inspirational and think we can fly to the moon if we wanted to. People who treat us like everyone else, who know that we’ll ask for help if we need it but otherwise we’re […]
– Rosie Redfield on how to pursue good science (vs. the other way). It’s a good mantra for me this week, writing about caregivers (I had a theory that they use the internet differently and I was right, but not as right as I’d hoped to be) and formulating the next Pew Internet health survey […]
– John Wilbanks talking about unintended consequences of informed consent. Read a summary of his talk and a clarification.