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Susannah Fox

I help people navigate health and technology.

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Rebel Health

Wow! How? Patient-Led Research

January 18, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]

Filed Under: Champions, Networkers, patient networks, positive patterns, Seekers, Solvers Tagged With: Council of Medical Specialty Societies, Eric Topol, Fiona Lowenstein, Hannah Davis, Julia Moore Vogel, Lisa McCorkell, Long Covid, Patient-Led Research Collaborative, Rebel Health, Wow! How? Health

Wow! How? Peer Support

January 11, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

Hank Azaria’s tribute to Matthew Perry was as much a love letter to peer support as it was a remembrance of his friend: “…as bad as we feel, as low as we go, we tend to feel we’re alone in it, whether our problem is alcoholism, a bad marriage, illness, depression, strife. We feel that […]

Filed Under: Networkers, peer-to-peer health care, policy issues Tagged With: AA, Esther Perel, Gabrielle Glaser, Rebel Health, SAHMSA

Books I read while writing Rebel Health

January 2, 2024 By Susannah Fox 2 Comments

Books stacked on a shelf

While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]

Filed Under: key people, research issues Tagged With: Abby Norman, Alondra Nelson, Amy Marcus, Chris Schroeder, Dana Lewis, Danny Sands, David Fajgenbaum, Diana Forsythe, E-Patient Dave, Elaine Schattner, Eric Topol, Eric von Hippel, Fiona Lowenstein, Howard Rheingold, James Fowler, Laurie Strongin, Meghan O'Rourke, MIT Press, Nicholas Christakis, Paul Batalden, Rebel Health, Ross Douthat, Ryan Prior, Sara Riggare, Siren Interactive, Sorrel King, Tom Ferguson, Victor Montori

Wow! How? Gleevec

December 21, 2023 By Susannah Fox Leave a Comment

Wow! How? Health

When Norman Scherzer’s wife, Anita, was diagnosed with a rare form of cancer in 1994, he found that the most up-to-date information was being traded among patients who were connecting via email. When a new test, a new drug, and a new clinical trial were all developed at the same time, Scherzer helped organize the […]

Filed Under: Champions, Networkers, Solvers Tagged With: Anita Scherzer, Gleevec, Life Raft Group, Norman Scherzer, Rebel Health, Wow! How? Health

Wow! How? False Boundaries

November 17, 2023 By Susannah Fox 5 Comments

Wow! How? Health

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below.  Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]

Filed Under: e-patient stories, key people, Networkers, Solvers Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Networkers, Rebel Health, Solvers, Wow! How? Health

Wow! How? Public Access to Research

November 10, 2023 By Susannah Fox Leave a Comment

Handwritten memo authorizing the name Grateful Med for the U.S. National Library of Medicine's online searchable database of biomedical citations and abstracts

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. The U.S. National Library of Medicine’s PubMed indexes over 36 million biomedical research abstracts – a searchable trove of evidence that has been available to the public since 1996. It is both a national […]

Filed Under: Champions, key people, policy issues Tagged With: Champions, librarians, National Library of Medicine, pubmed, Rebel Health, Wow! How? Health

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Recent Comments

  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
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