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Susannah Fox

I help people navigate health and technology.

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Dana Lewis

Too legit to quit

April 18, 2022 By Susannah Fox 17 Comments

Sunflowers with a bee

Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]

Filed Under: health data, key people, peer-to-peer health care, research issues Tagged With: Andrea Downing, Anne Wright, Dana Lewis, Gary Wolf, Long Covid, personal science, Quantified Self, Sara Riggare, Unrest

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, 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

Peer health playbooks

August 6, 2021 By Susannah Fox 18 Comments

Sunflowers with a bee

I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]

Filed Under: peer-to-peer health care Tagged With: ALS, Brain Tumor, Caregiver Action Network, Carmen Bombeke, Dana Lewis, food allergy, Genetic Alliance, I AM ALS, IBD, ImproveCareNow, Katherine Onk, Lianne Mandelbaum, Meghan Marsac, Melissa Hogan, mental health

Why entrepreneurs should listen to patients & caregivers

April 9, 2020 By Susannah Fox 1 Comment

Screenshot of Harvard Business Review article about how chronic disease patients are innovating together online

I am thrilled to share this excerpt from the Harvard Business Review article I wrote, “How Chronic-Disease Patients Are Innovating Together Online”: The internet gives us virtually unlimited access to each other. That deceptively simple insight is an untapped opportunity in health care. When companies are searching for their next idea, they should look to […]

Filed Under: peer-to-peer health care, social media Tagged With: Christopher Snider, Chronic Conditions, chronic disease, Dana Lewis, HopeLab Foundation, innovation, Vicky Rideout, Well Being Trust

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

“Human stories really are what drive us…”

May 22, 2019 By Susannah Fox 2 Comments

Stanford Medicine X stage

The more we open access to the data, information, and tools people need to solve their own problems, the better. That’s the essential message of the research and consulting I’m engaged in these days, helping leaders to see the opportunities that spring, for example, from tapping into the zeitgeist of social platforms and new data […]

Filed Under: key people, peer-to-peer health care, positive patterns Tagged With: #wearenotwaiting, Dana Lewis, diabetes, Health Data, HopeLab Foundation, OpenAPS, teens, Vicky Rideout, Well Being Trust

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