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Susannah Fox

I help people navigate health and technology.

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LongCovid

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

Consumer-strength tools,
industrial-strength innovation

August 10, 2021 By Susannah Fox Leave a Comment

Group of people in front of huge screen of numbers

On August 31, I’ll be part of the 2021 Federal Wearables Summit. This post is my attempt to “flip” the event by sharing what I intend to say. Please let me know what you think in the comments below. In 1986, Eric von Hippel of MIT identified “lead users” as people who identify and solve […]

Filed Under: health data, patient networks, peer-to-peer health care, policy issues Tagged With: Body Politic, Cajun Navy, Eric von Hippel, Fiona Lowenstein, LongCovid, MIT Press, Patient-Led Research Collaborative, Rock Health, self-tracking, wearables

Doing the work

July 9, 2021 By Susannah Fox 19 Comments

Close-up photo of a green leaf

I am thrilled to share that I am writing a book for MIT Press about the alchemy, grit, and soul of the health innovation pipeline that is powered by people connecting with each other to solve problems. Here’s the back story, which illustrates one of my core principles: Do the work that needs to get […]

Filed Under: health data, patient networks, peer-to-peer health care Tagged With: Bob Prior, Body Politic, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Jennifer Brea, Kate Lorig, LongCovid, MIT Press, Tanya Basu

A futurist’s perspective on LongCovid

April 7, 2021 By Susannah Fox 3 Comments

A field of sunflowers bathed in golden light

Maneesh Juneja is a dynamic person, both in person and online, and I’m proud to call him a friend and community colleague. Unfortunately, he has been living with LongCovid, the long-term effects of the COVID-19 virus, for nearly 12 months. If you have not yet watched his recent Health Datapalooza keynote, now is your chance: […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care Tagged With: Body Politic, COVID19, Health Datapalooza, LongCovid, Maneesh Juneja, sunflowers

LongCovid’s citizen scientists

February 1, 2021 By Susannah Fox 9 Comments

Flock of black birds flying together in a blue sky

Amy Dockser Marcus writes with the sensitivity and precision of a scientist, which is why I was thrilled that she recently turned her attention to the patient-led research being conducted by people with LongCovid, which affects an estimated 10-20% of COVID-19 patients. The Wall Street Journal‘s pay wall may prevent you from reading the full […]

Filed Under: participatory research, peer-to-peer health care, research issues, social media Tagged With: Amy Marcus, Emily Sirotich, Eric Topol, Gina Assaf, Helen Burstin, LongCovid, peer-to-peer healthcare, Wall Street Journal

Crazy, crazy, LongCovid, obvious

January 25, 2021 By Susannah Fox 15 Comments

Flock of geese flying in one direction together

LongCovid is an extraordinary challenge to the human body. It’s been met with an extraordinary response from the human spirit. As I wrote in a previous post, we are watching patients, caregivers, clinicians, researchers, and policymakers move through the stages of peer-to-peer health innovation at a fast clip. Faster than I’ve ever seen in my […]

Filed Under: patient networks, peer-to-peer health care, pts as teachers Tagged With: Body Politic, Kevin Kelly, LongCovid, NIH, peer-to-peer healthcare

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