• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Writing
    • greatest hits
    • beauty and wonder
    • demographics
    • featured commenters
    • health data
    • key people
    • peer-to-peer health care
    • positive patterns
    • public Q&A
    • trends & principles
  • Research
    • How Young People Use Digital Media to Manage Their Health
    • Digital Health Practices Among Teens and Young Adults: Key Findings
    • Fact sheet: teens and young adults, social media, online health resources
    • Fact sheet: differences between young women and young men in their use of social media, online health resources
    • Pew Research: Americans’ Data Worries
  • About me
    • Now
    • Curriculum vitae
  • Upcoming events

ALS

Whose needs are not met?

September 8, 2021 By Susannah Fox 19 Comments

Questions marks painted on pavement

For years I tried to find ways to explain the particular challenges facing people with undiagnosed and rare health conditions. I decided to create a visualization showing the wide spectrum of people’s health needs and I’d like some feedback on it. Imagine a horizontal line. At the far left side are the people whose needs […]

Filed Under: peer-to-peer health care Tagged With: ALS, Alzheimers, chronic pain, cystic fibrosis, eating disorders, LongCovid, Matthew Trowbridge, ME/CFS, menopause, MIT Press, myalgic encephalomyelitis, peer health innovation, Rare Disease

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

A Matter of Trust, Perception, Risk, and Uncertainty

July 1, 2019 By Susannah Fox 18 Comments

Black and white image that resembles a Rorschach ink blot

The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions By Susannah Fox, Jane Sarasohn-Kahn and Lisa Suennen I’ve lived long enough to have learned The closer you get to the fire the more you get burned But that won’t happen to us Cause it’s always been a matter of trust -A […]

Filed Under: health data, news & gossip, patient networks, peer-to-peer health care, policy issues Tagged With: ALS, Jane Sarasohn-Kahn, Lisa Suennen, patientslikeme, Trustworthiness

How did you find your people?

April 17, 2017 By Susannah Fox 33 Comments

The internet gives us access not only to information, but also to each other. That deceptively simple insight, gained from years of research, contains so much of the hope I have for the future of health and health care. When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. […]

Filed Under: peer-to-peer health care Tagged With: ACOR, ALS, cancer, cystic fibrosis, Danny Sands, E-Patient Dave, Emily Kramer-Golinkoff, patientslikeme, peer-to-peer healthcare, Smart Patients

Before Footer

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Recent Comments

  • Susannah Fox on Champions fast-track innovations: “Yes! Thank you for bringing out that point. Helping people to see themselves as Solvers, making space for people to…” Jun 20, 08:38
  • Kimberly Herrington on Champions fast-track innovations: “Psychological safety is everything. Champions can’t discover and unlock solvers potential nor locate a seeker in need if places and…” Jun 19, 20:35
  • Susannah Fox on Champions fast-track innovations: “Since this blog is my outboard memory I’m going to capture a few comments posted on Twitter. In response to…” Jun 15, 14:06

Footer

Follow me on Twitter

My Tweets

Topics

  • Beauty and Wonder
  • Demographics
  • Key People
  • Participatory Research
  • Peer-to-Peer Health Care
  • Positive Patterns
  • Public Q&A
  • Trends and Principles

popular posts

  • Hack needed: Tiny pills, trembling hands
  • Mystery solved. Again.
  • How to judge an innovation
  • Crowd-diagnosing STDs on Reddit

Explore

Copyright Susannah Fox © 2022 · WordPress · Log in