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Susannah Fox

I help people navigate health and technology.

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“Every Mom and Dad of a child with a rare disease has earned an honorary PhD”

March 8, 2013 By Susannah Fox 5 Comments

People in academic regalia, photo by 1yen on Flickr

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 […]

Filed Under: pts as teachers Tagged With: National Organization For Rare Disorders, Rare Disease

Was it a keynote? Or a seismic warning?

March 6, 2013 By Susannah Fox 9 Comments

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 […]

Filed Under: net-friendly docs, positive patterns Tagged With: Eric Topol, HIMSS, internet geologist, mobile, tracking

Rare Disease Day 2013

February 28, 2013 By Susannah Fox 5 Comments

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 […]

Filed Under: key people, peer-to-peer health care Tagged With: National Organization For Rare Disorders, Rare Disease, Wendy White

Tell all the truth but tell it slant

February 26, 2013 By Susannah Fox 5 Comments

Scanning tweets from the current Institute of Medicine event (#iomPwP) brought a poem to mind: Tell all the Truth but tell it slant — Success in Circuit lies Too bright for our infirm Delight The Truth’s superb surprise   As Lightning to the Children eased With explanation kind The Truth must dazzle gradually Or every […]

Filed Under: beauty and wonder, key people Tagged With: Dave Clifford, Emily Dickinson, Institute Of Medicine, truth

How many people use “ask a doctor” sites?

February 25, 2013 By Susannah Fox 7 Comments

Here’s a question I received that I thought was worth a public answer: How many people go online to seek a doctor’s opinion about something, such as on an “ask a doctor” site? Pew Research has not asked a survey question that specifically measures that activity, but we have something pretty close, based on our […]

Filed Under: peer-to-peer health care, public Q&A, trends & principles

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I’m sorry for your loss and the experience you went through. Thank you…” Jul 4, 12:05
  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07

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