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Susannah Fox

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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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Recent Comments

  • Susannah Fox on Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
  • Dave deBronkart on Patient Input on Clinical Trials: “I don’t have anything to add but I have a suggestion for the problem that trialists don’t *know* about the…” Oct 16, 14:01
  • Rufus on Hack needed: Tiny pills, trembling hands: “How about using a small piece of store bought bread? Slices of bread can be “smooshed,” and a small piece…” Oct 5, 23:48

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