I’m going to teach a 90-minute class on participatory research at Stanford Medicine X in September, so I’m going to start blogging resources I plan to incorporate (or that simply inspire me). As always, I’d welcome suggestions, comments, and questions. First up, Kate Crawford’s Strata 2013 talk about “big data”:
Who provides the fuel for the health data fire? Hint: Look in the mirror.
“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.” I think personal data is fueling health […]
Tracking for Health: Detailed Demographics
In response to popular demand, my Pew Research colleagues and I posted detailed demographic tables for the “Tracking for Health” study. I should warn you: These are not pretty tables. You may need a ruler to keep track of the rows and columns since we crammed as much data into each table as possible. But […]
“Every Mom and Dad of a child with a rare disease has earned an honorary PhD”
That’s a line from an essay entitled “cri de cure” by Ethan Perlstein. I tweeted it and got some great replies: Hahaha. I’m often asked by medical teams if I am a MD or nurse. I tell them ‘no,but I have a PhD when it comes to my daughter’ – @SolidFooting Yes! I know more […]
Was it a keynote? Or a seismic warning?
Eric Topol’s keynote at HIMSS13, a massive health IT event, was a tsunami of ideas and visions for the future of health care. I wasn’t there, so I salvaged what washed up on my shore as a Storify. Why? Because I’m an internet geologist. I look for early warning signs of possible futures and Topol […]
Rare Disease Day 2013
People living with rare conditions inspire my work every day. A few resources to check out: Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer […]
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