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Susannah Fox

I help people navigate health and technology.

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Archives for January 2023

Caregiver starter pack

January 31, 2023 By Susannah Fox 13 Comments

A field of sunflowers bathed in golden light

We usually don’t get to choose when to become caregivers. A crisis hits and we are dropped into a maze populated by scary monsters, like family conflict or financial ruin, and no guides. This happened to a friend of mine recently and, when her loved one’s situation stabilized, I sent her 3 things: 1. A […]

Filed Under: peer-to-peer health care Tagged With: ARCHANGELS, Atlas of Care, BJ Miller, caregivers, Engage with Grace, Rajiv Mehta, Shoshana Berger

The Promise of Patient-Led Research Integration

January 18, 2023 By Susannah Fox 8 Comments

In Dark Times Shine Your Light Brighter

The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI). The model is represented by a set […]

Filed Under: Networkers, participatory research, patient networks, policy issues, research issues, Solvers Tagged With: Council of Medical Specialty Societies, Gina Assaf, Hannah Wei, Patient-Led Research Collaborative, PCORI

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

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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