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Susannah Fox

I help people navigate health and technology.

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Solvers

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

Patient-led innovation

November 7, 2022 By Susannah Fox 43 Comments

A man sits alone in a lifeboat saying to himself, "I feel so alone. There's no one out there like me."

Update: Here’s a link to the list I created based on the comments gathered here and on Twitter and LinkedIn. I am curating a list of organizations that are putting patient-led innovation to work. What follows is an incomplete list — please help me by sharing YOUR favorite peer-to-peer communities in the comments below. Extra […]

Filed Under: Champions, Networkers, patient networks, peer-to-peer health care, Seekers, Solvers Tagged With: MIT Press, peer-to-peer healthcare, Rebel Health

Solvers attack problems

May 31, 2022 By Susannah Fox 6 Comments

Axes, pliers, hammers hung on a wooden wall

Solvers identify challenges, then test and develop new concepts, code, and inventions to meet their needs. They work on a problem with a singular focus because their life – or the life of a loved one – often depends on their ability to find or invent a solution. Some Solvers openly share their designs online for […]

Filed Under: key people, peer-to-peer health care, Solvers Tagged With: Invent Health, maker movement, MIT Press, peer-to-peer healthcare, Rebel Health, Solvers

Consumer-strength tools,
industrial-strength innovation

August 10, 2021 By Susannah Fox Leave a Comment

Group of people in front of huge screen of numbers

On August 31, I’ll be part of the 2021 Federal Wearables Summit. This post is my attempt to “flip” the event by sharing what I intend to say. Please let me know what you think in the comments below. In 1986, Eric von Hippel of MIT identified “lead users” as people who identify and solve […]

Filed Under: Champions, health data, Networkers, patient networks, peer-to-peer health care, policy issues, Solvers Tagged With: Body Politic, Cajun Navy, Eric von Hippel, Fiona Lowenstein, LongCovid, MIT Press, Patient-Led Research Collaborative, Rock Health, self-tracking, wearables

Inventing the future

June 2, 2021 By Susannah Fox 8 Comments

Close up picture of a dandelion

If you want to meet the future faster, go out to the edges of your field of vision. Find out what pioneers and rebels are doing and learn from them. Sometimes that means taking a virtual helicopter ride up to the zenith of tech development, as I did recently, watching Dario Gil, SVP and Director […]

Filed Under: Champions, health data, patient networks, peer-to-peer health care, policy issues, Solvers Tagged With: #wearenotwaiting, Amy Tenderich, Ben Eloff, Dario Gil, diabetes, diabetesmine, Hhs, IBM, Invent Health, kidney disease, KidneyX, Maja Vukovich

Re-imagining care for hospitalized kids

November 8, 2017 By Susannah Fox 9 Comments

On Nov. 1-2, 2017, Hope for Henry convened a diverse group of parents, kids, clinicians, designers, educators, and entrepreneurs to reimagine care for hospitalized kids. I’ll disclose that I am an advisor to Hope for Henry and helped organize the event, but I hope you’ll believe me when I say that it was, objectively, a […]

Filed Under: hc's problem list, key people, positive patterns, Solvers Tagged With: Allen Goldberg, Hope for Henry, Laurie Strongin, Rare Disease

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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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