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Susannah Fox

I help people navigate health and technology.

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ImproveCareNow

Public Q&A: Human-centered design

January 9, 2023 By Susannah Fox 5 Comments

Questions marks painted on pavement

A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]

Filed Under: positive patterns, public Q&A, research issues Tagged With: ARCHANGELS, Diana Forsythe, I AM ALS, IDEO, ImproveCareNow, Marina Nitze, Nick Sinai, Solve ME

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

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

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  • Susannah Fox on A survey about clinical trial support groups: “Hi Diane, here is one article I found about Tirzepatide — a drug that’s in the headlines these days since…” Mar 9, 10:37
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  • Dave deBronkart on Lessons learned about hospice care: “I want to add some things I’ve learned in the years since you posted this. First, it should be noted…” Feb 20, 16:44

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