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Susannah Fox

I help people navigate health and technology.

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Archives for June 2018

Case study: One in a million diagnosis

June 29, 2018 By Susannah Fox 19 Comments

Screen shot of peer health advice video

When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That’s one of my core beliefs, based on the fieldwork and research I’ve […]

Filed Under: peer-to-peer health care Tagged With: case study, EURORDIS, Matt Might, National Organization For Rare Disorders, NIH, Rare Disease, rare diseases

Clinical trials jump on the Cluetrain

June 22, 2018 By Susannah Fox 6 Comments

Man rushes toward a modern train

When the organizers of a National Cancer Institute workshop on social media and clinical trials invited me to speak, they said: We have an ethical obligation to understand social media. Social media is not just trendy. It’s a tool, an opportunity to act in an ethical way, not only to increase recruitment but to help […]

Filed Under: research issues, social media, trends & principles Tagged With: Cluetrain Manifesto, national cancer institute, Pew Internet, Pew Research Center, social media

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  • Susannah Fox on Patient-led innovation: “Thank you! I’m very happy to know about your work and will add it to the list.” Feb 1, 09:19
  • Andrea Pauls Backman on Patient-led innovation: “Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by…” Feb 1, 08:58
  • Susannah Fox on Caregiver starter pack: “Thanks, Raj! You capture what I only implied: I wanted to send only what is absolutely necessary for this moment…” Jan 31, 12:38

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