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Susannah Fox

I help people navigate health and technology.

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research issues

“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

“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

Participatory Research

July 11, 2012 By Susannah Fox Leave a Comment

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.

Filed Under: participatory research, research issues, social media, trends & principles Tagged With: e-patients, participatory research, Pew Internet, Twitter

“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

Unpacking self-tracking

June 7, 2012 By Susannah Fox 20 Comments

One of the “top tweets” of this week’s Health Datapalooza was one I dashed off on my way to the event: 1 in 4 U.S. internet users track their own health data online – @pewinternet pewrsr.ch/khtiMB #healthdata — SusannahFox (@SusannahFox) June 5, 2012 It was great to see how this research tidbit was treated like […]

Filed Under: research issues Tagged With: Health Datapalooza, Quantified Self, self-tracking, tracking, Tracking for Health

Why fieldwork in patient communities is essential

May 29, 2012 By Susannah Fox 2 Comments

Thanks to a tweet from Brian Ahier, I’m re-reading Internet Health Resources from 2002. It was the first time we’d done extensive online fieldwork in addition to national phone surveys, yielding stories like this one: One mother told how, when she suspected that her daughter had a serious respiratory infection called RSV, she looked it […]

Filed Under: research issues

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • 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

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