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Susannah Fox

I help people navigate health and technology.

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cystic fibrosis

How did we get here? And where are we going?

July 15, 2014 By Susannah Fox 17 Comments

The Vasa, which sank on its maiden voyage in 1628

Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish): It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future. I opened with an example that was inspired by a visit […]

Filed Under: participatory research, patient networks, peer-to-peer health care, trends & principles Tagged With: C3N Project, cystic fibrosis, patientslikeme, peer-to-peer healthcare, Pew Internet, Pew Research Center, scurvy, Sweden, video

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

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Topics

  • Beauty and Wonder
  • Demographics
  • Key People
  • Participatory Research
  • Peer-to-Peer Health Care
  • Positive Patterns
  • Public Q&A
  • Trends and Principles

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