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Susannah Fox

I help people navigate health and technology.

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patient networks

Wow! How? Patient-Led Research Scorecards

March 27, 2025 By Susannah Fox Leave a Comment

In Dark Times Shine Your Light Brighter

Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]

Filed Under: Champions, Networkers, patient networks, research issues, Solvers Tagged With: Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Long Covid, Patient-Led Research Collaborative, PCORI, Quantified Self, Rebel Health, Wow! How? Health

Rebel Health

February 13, 2024 By Susannah Fox 4 Comments

Book cover: Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care by Susannah Fox. Blue type on a yellow field

My book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, is out in the world! You can pick up a copy at your favorite local bookstore (mine is Politics & Prose) or order it from Barnes & Noble, Amazon, or another online retailer. Thank you for being part of this journey! I use this blog […]

Filed Under: patient networks, peer-to-peer health care Tagged With: MIT Press, Rebel Health

Wow! How? Community Consults

February 1, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

“Lana,” a woman I interviewed who asked that her real name not be used, lives with mitochondrial disease and is an active member of a private Facebook group of people who share her diagnosis. Some of the members have become experts in drug interactions particular to “mito” and offer guidance to others based on their […]

Filed Under: Networkers, patient networks, peer-to-peer health care, pt/doc co-care, Seekers Tagged With: Facebook, Jack Saul, mitochondrial disease, Rebel Health, Wow! How? 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? Drug Interactions

November 3, 2023 By Susannah Fox Leave a Comment

Two sets of hands sort pills into a pillbox

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. People who connect with health peers are able to pool knowledge, track data, and disseminate what they learn. For some, it’s the difference between life and death. For example, Peggy, a woman […]

Filed Under: Networkers, patient networks, peer-to-peer health care, Seekers Tagged With: drugs, kidney disease, Marfan syndrome, medical errors, Networkers, Rebel Health, Seekers, Wow! How? Health

Wow! How? Diagnosis

October 26, 2023 By Susannah Fox 5 Comments

Questions marks painted on pavement

“Anne” is a mother I met in my fieldwork who was happy to share her story, but not her name.  Her son had become sick very suddenly, complaining of a combination of symptoms that were difficult to pinpoint. Anne took him from one specialist to another, who performed test after test, but they could find […]

Filed Under: patient networks, peer-to-peer health care, Seekers Tagged With: Diagnosis, Ehlers Danlos, Marfan syndrome, POTS, Rebel Health, Seekers, Wow! How? Health

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