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Susannah Fox

I help people navigate health and technology.

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cystic fibrosis

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

What health care can learn from Mike Mulligan and his steam shovel

February 13, 2015 By Susannah Fox 8 Comments

Google is upgrading health search…again. In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.

Filed Under: positive patterns, reforming hc, trends & principles Tagged With: #bcsm, #whatifhc, Apple, cystic fibrosis, Erin Moore, Google, HealthKit, Hugo Campos, IBM Watson, Iodine, multiple sclerosis, patientslikeme, Quantified Self, Rare Disease, Smart Patients, Stanford Medicine X

Weekend update

January 17, 2015 By Susannah Fox 10 Comments

Susannah Fox's Weekend Update - credit: Andre Blackman

Last Saturday I posted a round-up of what caught my eye during the week and my friend Andre Blackman (@mindofandre) created this awesome graphic: Thus encouraged, here’s another round of what I favorited on Twitter this week: Nancy Stein (@SeniorityMatter) shared an opinion piece by Rob Lowe about long-term care planning. He’s promoting his partnership […]

Filed Under: key people, social media Tagged With: chronic pain, cystic fibrosis, Duchenne, long-term care, may I suggest, Open Access, Quantified Self, wearables

What I’m reading, listening to, admiring…

January 10, 2015 By Susannah Fox 8 Comments

Susannah at the library

I hunkered down at the library this week, working on a couple of long-term projects. I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week: Radiolab: Worth — what would you pay for another month of life? How about a year? […]

Filed Under: beauty and wonder, maternity, positive patterns, social media Tagged With: Amy Romano, Cluetrain Manifesto, cystic fibrosis, diabetes, diabetesmine, Facebook, Kerri Sparling, may I suggest, Pew Internet, Pew Research Center, Robert Wood Johnson Foundation, Wendy Sue Swanson

Save us, Facebook

November 20, 2014 By Susannah Fox 24 Comments

Erin and Drew

The Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way. […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: cystic fibrosis, Erin Moore, Facebook, Inspire, mitochondrial disease, patientslikeme, Smart Patients

How did we get here? And where are we going?

July 15, 2014 By Susannah Fox 17 Comments

The Vasa, which sank on its maiden voyage in 1628

Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish): It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future. I opened with an example that was inspired by a visit […]

Filed Under: participatory research, patient networks, peer-to-peer health care, trends & principles Tagged With: C3N Project, cystic fibrosis, patientslikeme, peer-to-peer healthcare, Pew Internet, Pew Research Center, scurvy, Sweden, video

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Recent Comments

  • Susannah Fox on Patient-led innovation: “Thank you! I’m very happy to know about your work and will add it to the list.” Feb 1, 09:19
  • Andrea Pauls Backman on Patient-led innovation: “Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by…” Feb 1, 08:58
  • Susannah Fox on Caregiver starter pack: “Thanks, Raj! You capture what I only implied: I wanted to send only what is absolutely necessary for this moment…” Jan 31, 12:38

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