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Susannah Fox

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Solvers

Wow! How? False Boundaries

November 17, 2023 By Susannah Fox 5 Comments

Wow! How? Health

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below.  Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]

Filed Under: e-patient stories, key people, Networkers, Solvers Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Networkers, Rebel Health, Solvers, Wow! How? Health

Wow! How? Home inventors

October 20, 2023 By Susannah Fox Leave a Comment

Tile floor of a bathhouse

Hot springs have always been therapeutic destinations, but it was a father, desperate to relieve his child’s pain, who invented the home spa. Candido Jacuzzi, a mechanical engineer, and his wife, Inez, tried everything to help their son, who was suffering from juvenile rheumatoid arthritis. Hydrotherapy helped immensely, so Candido set to work, eventually building […]

Filed Under: positive patterns, pts as teachers, Solvers Tagged With: arthritis, disability, home health care hacks, Invent Health, maker movement, Rebel Health, Solvers, Wow! How? Health

Transforming research participation

October 18, 2023 By Susannah Fox Leave a Comment

Close up picture of a dandelion

Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare […]

Filed Under: research issues, Solvers Tagged With: #wearenotwaiting, artificial intelligence, cancer, Chan Zuckerberg Initiative, diabetes, personal science, Rare Disease, rare diseases, Rebel Health, Tania Simoncelli

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

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