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Susannah Fox

I help people navigate health and technology.

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NIH

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

Public Q&A: Patient registries

March 9, 2020 By Susannah Fox 17 Comments

A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]

Filed Under: health data, patient networks, public Q&A, research issues Tagged With: All of Us, cystic fibrosis, Erin Moore, ImproveCareNow, John Wilbanks, NIH, patient registries, Quality Improvement

A helping hand, just in time

August 26, 2019 By Susannah Fox 5 Comments

D-ABNT by Benedikt Lang on Flickr - cropped

Some years ago a few colleagues and I got stuck at Logan Airport and we started telling stories to pass the time. One tale has come back to me over and over again, particularly as I cared for my dad during his last year of life, because it reminded me to be open to the possibility […]

Filed Under: peer-to-peer health care Tagged With: Francis Collins, NIH, Rare Disease, rare diseases, Sharon Terry

Case study: One in a million diagnosis

June 29, 2018 By Susannah Fox 19 Comments

Screen shot of peer health advice video

When we get sick or face a new challenge in our lives, 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’s one of my core beliefs, based on the fieldwork and research I’ve […]

Filed Under: peer-to-peer health care Tagged With: case study, EURORDIS, Matt Might, National Organization For Rare Disorders, NIH, Rare Disease, rare diseases

Flashback: Announcing the Invent Health Initiative

March 8, 2018 By Susannah Fox 2 Comments

Make Things, above a drawing of a woman holding tools

I recently signed on as an advisor to a group of George Washington University students who are organizing a medical and assistive device hackathon on March 24-25, 2018, in downtown DC. Check it out if you live nearby! In pulling together resources for them, I found the memo I sent to senior leaders across the Department […]

Filed Under: key people, policy issues Tagged With: assistive devices, Hhs, home health care hacks, Invent Health, NIH

Rare Disease Day

February 28, 2015 By Susannah Fox Leave a Comment

NIH atrium by Jason Levine

Today is Rare Disease Day, when we honor the millions of people who teach us what it’s like to live at the edges of the known world of medicine.

Filed Under: positive patterns, pt/doc co-care Tagged With: Alpha Geek, Amy Marcus, Francis Collins, NIH, Rare Disease, rare diseases

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Recent Comments

  • Susannah Fox on Jean Nidetch, Rebel Health leader: “Yes! I have enjoyed learning more about her personal story, which is a parable of midcentury feminism. WW was a…” May 9, 10:10
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