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Susannah Fox

I help people navigate health and technology.

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Networkers

Wow! How? Patient Data Rights

February 8, 2024 By Susannah Fox 2 Comments

Wow! How? Health

Until relatively recently, people living with diabetes were shut out of conversations about improving the devices that keep them alive. Device manufacturers saw clinicians as their customers, not patients, and nobody was asking them to change that stance, including the FDA.  Patients and their loved ones were grateful to have insulin pumps and continuous glucose […]

Filed Under: health data, key people, Networkers, policy issues, Solvers Tagged With: American Diabetes Association, Anna McCollister, Dexcom, diabetes, Fda, Howard Look, MIT Press, Networkers, Rebel Health, Solvers, Tidepool, Wow! How? Health

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? 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? 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

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 Jean Nidetch, Rebel Health leader: “Yes! I have enjoyed learning more about her personal story, which is a parable of midcentury feminism. WW was a…” May 9, 10:10
  • barbara figge fox on Jean Nidetch, Rebel Health leader: “Jean Neditch helped so many of us! She changed the landscape for weight reduction by leveraging peer support.” May 9, 08:11
  • 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

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