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Susannah Fox

I help people navigate health and technology.

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Susannah Fox

Have you ever wondered what it’s like to have Cystic Fibrosis?

May 22, 2013 By Susannah Fox Leave a Comment

Erin Moore, the mom-warrior who created that video, also wrote this essay: Are patients a distraction? I think not… Watch, read, cry, be inspired. I sure am.

Filed Under: e-patient stories Tagged With: caregivers, cystic fibrosis

“Learning is a lot more fun—and a lot more effective—when it’s social. Tweet & NEVER eat alone.”

May 20, 2013 By Susannah Fox 2 Comments

— Mike Nelson, in one of 17 “nuggets” of wisdom he tweeted today. Click through on all the links. They’re worth your time.

Filed Under: key people

Thank you, Susannah Fox (the other one, that is)

May 17, 2013 By Susannah Fox 2 Comments

Man with an umbrella walks toward a wedding tent in pouring rain

One year ago this week I ported over five years’ worth of posts from e-patients.net and launched this blog. But I have never shared the story behind the susannahfox.com domain name (and there is a story). Here it is:

Filed Under: key people

Public Q&A: How should a clinician measure patients’ use of online health resources?

May 13, 2013 By Susannah Fox Leave a Comment

Here’s a question I received recently from a clinician I met at a conference. He had expressed interest in the Pew Research Center’s health and technology surveys and was now following up: We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might […]

Filed Under: demographics, public Q&A, research issues

Mother’s Day

May 12, 2013 By Susannah Fox 13 Comments

I filled out a form recently which asked: What motivates you to innovate? Without hesitation I typed in “Motherhood.” I had no idea that having kids would rewire my brain so fundamentally, but it did. A few posts to contemplate on Mother’s Day… Mothering Cal: What I learned from parenting a terminally ill child, by […]

Filed Under: end of life, maternity Tagged With: moms

One voice, many inflections: HIV clinical trial communications

May 10, 2013 By Susannah Fox 14 Comments

Demographics of Twitter, Facebook, Pinterest, Instagram, Tumblr

I’m re-sexifying the top of this post since it’s so long and I want people to get these key take-aways (read on for details on each one): Expect clinical trial participants to share news with their networks. Plan accordingly. Make your information attractive and share-able where people already are, on Facebook, Tumblr, Pinterest, etc. Find […]

Filed Under: participatory research, research issues, trends & principles Tagged With: AIDS.gov, Clinical Trials, HIV/AIDS, participatory research

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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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