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Susannah Fox

I help people navigate health and technology.

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peer-to-peer healthcare

Rare Disease in the U.S. 2025

February 25, 2025 By Susannah Fox Leave a Comment

Two zebras

Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]

Filed Under: peer-to-peer health care, trends & principles Tagged With: ARCHANGELS, artificial intelligence, ChatGPT, Gemini, peer-to-peer healthcare, Pew Internet, Pew Research Center, Rare Disease, Rebel Health, SSRS, telehealth

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

Wow! How? Peer Warmline

May 9, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

This essay is part of my LinkedIn newsletter series: Wow! How? Health. About two million people in North Carolina experience a mental health or substance use disorder crisis each year. Historically, about half did not receive treatment because of cost, leading to repercussions for families, communities, and individuals. A new Peer Warmline, staffed by counselors […]

Filed Under: Champions, Networkers, peer-to-peer health care, policy issues, Solvers Tagged With: Kody Kinsley, mental health, North Carolina, peer counseling, peer-to-peer healthcare, Promise Resource Network, Wow! How? Health

Patient-led innovation

November 7, 2022 By Susannah Fox 43 Comments

A man sits alone in a lifeboat saying to himself, "I feel so alone. There's no one out there like me."

Update: Here’s a link to the list I created based on the comments gathered here and on Twitter and LinkedIn. I am curating a list of organizations that are putting patient-led innovation to work. What follows is an incomplete list — please help me by sharing YOUR favorite peer-to-peer communities in the comments below. Extra […]

Filed Under: Champions, Networkers, patient networks, peer-to-peer health care, Seekers, Solvers Tagged With: MIT Press, peer-to-peer healthcare, Rebel Health

Champions fast-track innovations

June 13, 2022 By Susannah Fox 9 Comments

Rocket launches into a blue sky

Champions help take a scrappy patient-led idea to scale. They give Seekers, Networkers, and Solvers access to resources held by mainstream institutions such as funding, media attention, regulatory guidance, or access to labs and manufacturing facilities. Champions fast-track innovations. This is the fourth post in a series that I’m writing to introduce the archetypes of […]

Filed Under: Champions, key people Tagged With: Champions, MIT Press, peer-to-peer healthcare, Rebel Health

Solvers attack problems

May 31, 2022 By Susannah Fox 6 Comments

Axes, pliers, hammers hung on a wooden wall

Solvers identify challenges, then test and develop new concepts, code, and inventions to meet their needs. They work on a problem with a singular focus because their life – or the life of a loved one – often depends on their ability to find or invent a solution. Some Solvers openly share their designs online for […]

Filed Under: key people, peer-to-peer health care, Solvers Tagged With: Invent Health, maker movement, MIT Press, peer-to-peer healthcare, Rebel Health, Solvers

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