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Susannah Fox

I help people navigate health and technology.

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e-patient stories

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

Celebrating #BCSM as a peer health innovation

August 20, 2021 By Susannah Fox 6 Comments

A man and woman walking on a trail

Cancer patients were among my first peer health innovation teachers and remain, years later, among my favorite communities to follow. I keep an eye out for hashtags like #gyncsm (gynecological cancer social media), #bcsm (breast cancer social media), and #lcsm (lung cancer social media) on Twitter. I listen to podcasts like The Cancer Mavericks (and […]

Filed Under: e-patient stories, Networkers, patient networks, peer-to-peer health care, pts as teachers Tagged With: #bcsm, #gyncsm, #hcsm, #lcsm, Alexandra Drane, Alicia Stales, breast cancer, Dana Lewis, Deanna Attai, Elizabeth O'Riordan, Jodi Sperber, Jody Schoger, Leslie Schover, Matthew Zachary, peer health innovation, Trisha Greenhalgh, Unmentionables

Case study: Breast cancer

December 7, 2020 By Susannah Fox 16 Comments

Sunflower in a field of other sunflowers

When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us.  That is the case with my friend Meagan. She was recently diagnosed with breast cancer. She […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: breast cancer, case study, peer-to-peer healthcare, sunflowers

Lessons learned about hospice care

October 19, 2020 By Susannah Fox 39 Comments

Thick trunk reaches up to the sky, sunlight filters through leaves

A loved one recently went over the cancer waterfall and I dove in after him, keeping his head above water long enough to say goodbye to everyone. It was an intense four weeks of caregiving – two in the hospital and two at home, in hospice.  I am sharing one segment of our story to […]

Filed Under: e-patient stories, end of life Tagged With: caregivers, family, hospice, Medicare, peer-to-peer healthcare, Renee Berry

Chasing cures

September 10, 2019 By Susannah Fox 7 Comments

CHASING MY CURE book cover

Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You […]

Filed Under: e-patient stories, key people, positive patterns Tagged With: Abby Norman, Afternoon Napper, Bon Ku, Dana Lewis, David Fajgenbaum, Doug Lindsay, Rare Disease, rare diseases, Sharon Terry, Terry Jo Bichell

A health & technology pioneer learns that joy, even in illness, doesn’t have an age limit

August 13, 2018 By Susannah Fox 10 Comments

Woman holds her hands in the shape of a heart

The following is a cross-post from the Atlas of Caregiving blog, which is featuring a new series of “caring conversations” with people who connect their professional experience to their caregiving experience. Susannah Fox advises companies and nonprofits on how to navigate the intersection of health and technology. She recently served as the Chief Technology Officer […]

Filed Under: e-patient stories, key people Tagged With: Atlas of Caregiving, Blue Button, caregivers, Family Caregivers, Hope for Henry, Laurie Strongin

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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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