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Susannah Fox

I help people navigate health and technology.

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Seekers

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

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

Seekers go out on the hunt

May 19, 2022 By Susannah Fox 2 Comments

As I’ve shared in previous posts, I’m writing a book for MIT Press about the key role that peer health advice plays at every level of our health care system. The people I’m describing in my book do not wait to be invited to create opportunities for positive change. They seize opportunities to take action. They reject […]

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

Chasing cures

February 3, 2020 By Susannah Fox 10 Comments

Decorative: blue gossamer

Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]

Filed Under: health data, Networkers, patient networks, peer-to-peer health care, policy issues, Seekers Tagged With: flip teaching, Health Datapalooza, Rare Disease, rare diseases

Mystery solved. Again.

January 7, 2020 By Susannah Fox 13 Comments

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

Friends, I have yet another so-extraordinary-it’s-ordinary story of peer-to-peer health care to share. Andrew Wilkinson wrote on Twitter: A few months ago, as a last ditch effort, I posted on Twitter about the horrible acid reflux which I’d been suffering from for almost 10 years. I had tried just about everything. Proton pump inhibitors, dietary […]

Filed Under: Networkers, peer-to-peer health care, Seekers, social media Tagged With: peer-to-peer healthcare, Twitter

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Recent Comments

  • Jill H. on Case study: Trevor’s disease: “Hello Carrie, I am curious how your son is doing after the surgery? Were you able to fix the locked…” May 28, 19:07
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