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Susannah Fox

I help people navigate health and technology.

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Smart Patients

Public Q&A: Empowering people in their relationships with clinicians

January 21, 2019 By Susannah Fox 31 Comments

Public Q&A: Empowering people in their relationships with clinicians

In the spirit of public Q&A, I’m sharing an intriguing question I received recently from a community colleague. Check out my answer and then add your ideas and suggestions in the comments below. Do you know of any particularly good or interesting services to empower patients in their relationships with doctors, especially ones which involve […]

Filed Under: patient networks, peer-to-peer health care, public Q&A Tagged With: #InventHealth, Clinicians, Facebook, Inspire, Invent Health, maker movement, patient activation, patientslikeme, peer-to-peer healthcare, Smart Patients, Streetwyze, Voro

How did you find your people?

April 17, 2017 By Susannah Fox 33 Comments

How did you find your people?

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

“His doctors were stumped. Then he took over.”

February 5, 2017 By Susannah Fox Leave a Comment

“His doctors were stumped. Then he took over.”

How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]

Filed Under: hc's problem list, key people, participatory research, patient networks, peer-to-peer health care Tagged With: C3N Project, patientslikeme, peer-to-peer healthcare, Rare Disease, Smart Patients

Parkinson’s For One Day

June 14, 2015 By Susannah Fox 9 Comments

Parkinson’s For One Day

My new job is wonderfully immersive. I leave home early, come back late, and, in between, spend hours talking with people about the future of health, health care, and technology (broadly defined). The HHS IDEA Lab blog will be my outlet for sharing ideas related to the work I do there. This site will serve, as it […]

Filed Under: key people, others' e-patient stories, social media Tagged With: empathy, Parkinson's, Smart Patients

What I’ve been working on

April 9, 2015 By Susannah Fox 1 Comment

It’s been a busy few weeks and I’d love to share a few items in one post: I served as the emcee at the Robert Wood Johnson Foundation‘s Data for Health report release event. I attempted to capture the spirit of the event in this Storify. Here’s a post I wrote about the Data for Health initiative: Imagining […]

Filed Under: e-patient stories, key people Tagged With: cystic fibrosis, Erin Moore, Robert Wood Johnson Foundation, Smart Patients

Cystic Fibrosis For One Day

March 29, 2015 By Susannah Fox Leave a Comment

Cystic Fibrosis For One Day

I shadowed a mom and her 5-year-old with CF from afar for 24 hours. It taught me more than I could have imagined about living with a life-shortening disease — and about myself. This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other.

Filed Under: e-patient stories, key people Tagged With: cystic fibrosis, empathy, Smart Patients

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  • Susannah Fox on A taxonomy of health data: “Thank you, Gary! The conversation is never over and I'm grateful for your comment. (If you…” Feb 16, 06:15
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