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Susannah Fox

I help people navigate health and technology.

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Quote

“So many quiet heroes and heroines who live among us…”

November 21, 2012 By Susannah Fox Leave a Comment

– 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.

Filed Under: e-patient stories Tagged With: New York Times, Rare Disease

“Tell the truth and trust the people.”

October 24, 2012 By Susannah Fox 2 Comments

– 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.  

Filed Under: research issues, social media, trends & principles Tagged With: truth

On the internet, the expression of your spirit has nothing to do with the expression on your face.

July 19, 2012 By Susannah Fox Leave a Comment

– 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

Filed Under: patient networks Tagged With: Moebius Syndrome, peer-to-peer healthcare

“There are 3 types of people…”

July 16, 2012 By Susannah Fox Leave a Comment

“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 […]

Filed Under: research issues Tagged With: disability, Moebius Syndrome

“Fall in love with your hypothesis, and then try to kill it.”

July 9, 2012 By Susannah Fox Leave a Comment

– 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 […]

Filed Under: key people

“Privacy leaves the room when cancer enters.”

July 3, 2012 By Susannah Fox 1 Comment

– John Wilbanks talking about unintended consequences of informed consent. Read a summary of his talk and a clarification.

Filed Under: ethics, health data, policy issues, research issues Tagged With: John Wilbanks

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12
  • Anonymousity on Rare Disease in the NYT: “I was captivated by Amanda Hess’s story. I too dove right in in reading all the way through the article…” Apr 25, 09:24
  • Susannah Fox on Rare Disease in the NYT: “Thank you, Dave! Yes, I’ve been a fan of Hess’s writing for a long time and now, well, I’m a…” Apr 23, 22:00

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