– 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
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“There are 3 types of people…”
“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 […]
Participatory Research
I can’t imagine conducting research, especially about the internet, without welcoming people into the process, so I wrote up some examples of how I use social tools in my work.
“Fall in love with your hypothesis, and then try to kill it.”
– 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 […]
“Privacy leaves the room when cancer enters.”
– John Wilbanks talking about unintended consequences of informed consent. Read a summary of his talk and a clarification.
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