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Susannah Fox

I help people navigate health and technology.

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food allergy

Peer health playbooks

August 6, 2021 By Susannah Fox 18 Comments

Sunflowers with a bee

I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]

Filed Under: peer-to-peer health care Tagged With: ALS, Brain Tumor, Caregiver Action Network, Carmen Bombeke, Dana Lewis, food allergy, Genetic Alliance, I AM ALS, IBD, ImproveCareNow, Katherine Onk, Lianne Mandelbaum, Meghan Marsac, Melissa Hogan, mental health

Why I (finally) signed up for health data access

January 17, 2020 By Susannah Fox 8 Comments

Peas and pods on cutting board

Christine Bechtel, Lygeia Ricciardi, Dave deBronkart, Casey Quinlan, and Donna Cryer published an article in Health Affairs this week: “Why Aren’t More Patients Electronically Accessing Their Medical Records (Yet)?” Please click through and read it — it’s open access.  Being a health geek, I read footnotes and every link in this article is worth your time. Bechtel […]

Filed Under: health data, medical records, peer-to-peer health care Tagged With: Casey Quinlan, Christine Bechtel, Courtney Lyles, Donna Cryer, E-Patient Dave, food allergy, Health Affairs, Julia Adler-Milstein, Lygeia Ricciardi, Sunny Lin, Urmimala Sarkar

Public Q&A: conference organizing

December 2, 2019 By Susannah Fox 2 Comments

Huge conference hallway

A friend asked me to share some of my tips about how to organize a useful, comfortable, inclusive health care conference. Meeting planning is not what I do for a living, but since I attend about a dozen events each year, I’ve captured quite a few observations about how to create a great experience for […]

Filed Under: public Q&A Tagged With: california healthcare foundation, conferences, food allergy, Stanford Medicine X

Update: A Seat at the Table

June 1, 2019 By Susannah Fox 7 Comments

Fortifications at Colonial Willamsburg by Kate Mereand-Sinha

Last November I attended FAREcon, an annual event devoted to food allergy research and education. I published my notes in a long, deep-dive post that included one short section on pending litigation (below). I’m thrilled to report a positive update: “A federal appeals court Friday ruled against the tavern that refused to let the child […]

Filed Under: key people, policy issues Tagged With: disability, food allergy, Rare Disease

A deep dive into food allergy research and education

November 8, 2018 By Susannah Fox 21 Comments

Cartoon: One woman says, "Food allergies are all in your head." Other woman replies, "No, in my head I'm punching you in the face."

Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: food allergy, Rare Disease

Back to school with food allergies

September 5, 2017 By Susannah Fox 7 Comments

A child walks down a sidewalk in the early morning sunlight

Food-allergy parents all over the U.S. are engaging in our particular back-to-school rituals: gathering signatures on forms, packaging up emergency medications (one for the nurse, one for the classroom, one for the backpack…), and stocking up on lunchbox essentials. But what about the teachers? How are they preparing? I’d never considered it until my niece […]

Filed Under: positive patterns Tagged With: food allergy

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