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Susannah Fox

I help people navigate health and technology.

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key people

Wow! How? False Boundaries

November 17, 2023 By Susannah Fox 5 Comments

Wow! How? Health

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below.  Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]

Filed Under: e-patient stories, key people, Networkers, Solvers Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Networkers, Rebel Health, Solvers, Wow! How? Health

Wow! How? Public Access to Research

November 10, 2023 By Susannah Fox Leave a Comment

Handwritten memo authorizing the name Grateful Med for the U.S. National Library of Medicine's online searchable database of biomedical citations and abstracts

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. The U.S. National Library of Medicine’s PubMed indexes over 36 million biomedical research abstracts – a searchable trove of evidence that has been available to the public since 1996. It is both a national […]

Filed Under: Champions, key people, policy issues Tagged With: Champions, librarians, National Library of Medicine, pubmed, Rebel Health, 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

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

Networkers pool resources

May 23, 2022 By Susannah Fox 11 Comments

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

“You are not alone.” People who are newly diagnosed or facing a health challenge long to hear those words. Connection is an antidote to suffering and confusion. When they are able to tap into peer-to-peer networks of patients and caregivers, Networkers learn in community about their condition, shrug off the burdens of isolation and shame, then urge […]

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

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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