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Susannah Fox

I help people navigate health and technology.

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patient networks

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

Wow! How? Health

October 13, 2023 By Susannah Fox 6 Comments

Wow! How? Health

Wow! How? Health is a LinkedIn newsletter that will feature the Wow! stories of patients, survivors, and caregivers who are doing extraordinary things, along with the How? lessons that we all can learn. Subscribe to the newsletter or to my blog (I’ll cross-post here). Today’s story is about how connecting with a peer, a “just-in-time someone-like-you,” can make all the […]

Filed Under: key people, Networkers, patient networks, peer-to-peer health care Tagged With: cancer, caregivers, Networkers, Wow! How? Health

Cover reveal

October 2, 2023 By Susannah Fox 9 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

I am thrilled to share the cover design for my upcoming book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, set to come out in February 2024 from MIT Press. The design is inspired by what Clara Ganz created for me — a bright, joyful color scheme with a type treatment […]

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

Pre-order Rebel Health

September 6, 2023 By Susannah Fox 2 Comments

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

If you are likely to buy a paper copy of my upcoming book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, Barnes & Noble is offering a 25% discount if you order by September 8, 2023. Here’s a direct link. Note: you need to create a free account and use the […]

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

The Promise of Patient-Led Research Integration

January 18, 2023 By Susannah Fox 8 Comments

In Dark Times Shine Your Light Brighter

The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI). The model is represented by a set […]

Filed Under: Networkers, participatory research, patient networks, policy issues, research issues, Solvers Tagged With: Council of Medical Specialty Societies, Gina Assaf, Hannah Wei, Patient-Led Research Collaborative, PCORI

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

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