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Susannah Fox

I help people navigate health and technology.

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cystic fibrosis

Tracking the trackers

May 13, 2020 By Susannah Fox 25 Comments

In Dark Times Shine Your Light Brighter

UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: 23andme, Ancestry, Body Politic, COVID19, cystic fibrosis, Health Data, Open Humans Foundation, patient registries, patientslikeme, Webmd

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

Waiting with open arms

December 4, 2017 By Susannah Fox Leave a Comment

Wave Group Photo by Michael Cannon on Flickr

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Emily Kramer-Golinkoff, in response to “A field guide to The Diagnosis Difference” (2013): My advice to a person or parent of a child newly diagnosed with Cystic Fibrosis would be: “I can only imagine […]

Filed Under: featured commenters, peer-to-peer health care Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Stanford Medicine X

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

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

Boy wearing nebulizer mask and his mom

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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  • Nichole Persing on “A jumbo jet a day” – who said it?: “Just did the math. with COVID19, it is roughly 4 “jumbo jets” a day (assuming 366 passenger seats).” Mar 8, 13:25
  • Nichole Persing on “A jumbo jet a day” – who said it?: “I have been thinking about this quote & this number in light of the >500,000 deaths from COVID. It is…” Mar 8, 13:17
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