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Susannah Fox

I help people navigate health and technology.

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Dana Lewis

Discovery Diaries with Damon Davis

May 16, 2024 By Susannah Fox Leave a Comment

Rebel Health: A field guide to the patient-led revolution in medical care

Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: AA, Ben West, Black Panther Party, Bryan Mazlish, caregivers, Damon Davis, Dana Lewis, diabetes, E-Patient Dave, Fda, food allergy, Hhs, Hugo Campos, Jane Sarasohn-Kahn, peer-to-peer healthcare, Regina Holliday

The Other 80

April 22, 2024 By Susannah Fox 2 Comments

Screenshot from Derek Sivers' TED talk How to start a movement

Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: #wearenotwaiting, Claudia Williams, Dana Lewis, Derek Sivers, Hugo Campos, John Costik, Open Notes, Patient-Led Research Collaborative, Rebel Health, Sara Riggare, Stanford Medicine X

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

Too legit to quit

April 18, 2022 By Susannah Fox 17 Comments

Sunflowers with a bee

Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]

Filed Under: health data, key people, peer-to-peer health care, research issues Tagged With: Andrea Downing, Anne Wright, Dana Lewis, Gary Wolf, Long Covid, personal science, Quantified Self, Sara Riggare, Unrest

Celebrating #BCSM as a peer health innovation

August 20, 2021 By Susannah Fox 6 Comments

A man and woman walking on a trail

Cancer patients were among my first peer health innovation teachers and remain, years later, among my favorite communities to follow. I keep an eye out for hashtags like #gyncsm (gynecological cancer social media), #bcsm (breast cancer social media), and #lcsm (lung cancer social media) on Twitter. I listen to podcasts like The Cancer Mavericks (and […]

Filed Under: e-patient stories, Networkers, patient networks, peer-to-peer health care, pts as teachers Tagged With: #bcsm, #gyncsm, #hcsm, #lcsm, Alexandra Drane, Alicia Stales, breast cancer, Dana Lewis, Deanna Attai, Elizabeth O'Riordan, Jodi Sperber, Jody Schoger, Leslie Schover, Matthew Zachary, peer health innovation, Trisha Greenhalgh, Unmentionables

Peer health playbooks

August 6, 2021 By Susannah Fox 18 Comments

Sunflowers with a bee

I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]

Filed Under: peer-to-peer health care Tagged With: ALS, Brain Tumor, Caregiver Action Network, Carmen Bombeke, Dana Lewis, food allergy, Genetic Alliance, I AM ALS, IBD, ImproveCareNow, Katherine Onk, Lianne Mandelbaum, Meghan Marsac, Melissa Hogan, mental health

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