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Susannah Fox

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Patient-Led Research Collaborative

Patient Input on Clinical Trials

October 16, 2025 By Susannah Fox 2 Comments

A pipette hovers above a dozen test tubes

According to the World Health Organization, over one million clinical trials are conducted annually across the world. In 2024, the U.S. hosted approximately 20% of all trials, followed by China and India. Imagine all those thousands of patients traveling to clinics, submitting their samples, taking their treatments, and hoping that they – or those who follow […]

Filed Under: Champions, participatory research, policy issues, research issues Tagged With: caregivers, Clinical Trials, Council of Medical Specialty Societies, Innovation Network, Marion Campbell, Patient-Led Research Collaborative, Rebel Health, Stuart Nicholls, Tony Fantana, World Health Organization, Wow! How? Health

Wow! How? Psychedelic Outlaws

June 27, 2025 By Susannah Fox Leave a Comment

Part of the Psychedelic Outlaws book cover. Glass dishes containing tablets, mushrooms, and capsules.

Imagine the nerves behind one of your eyes suddenly bursting into flames of pain, relentlessly burning for hours. The pain recedes, then roars back, day after day. You try to describe what is happening inside your head to your family, your clinicians, even yourself, but words fall short. It is the worst pain a human […]

Filed Under: Champions, Networkers, patient networks, peer-to-peer health care, Seekers, Solvers Tagged With: books I love, Clusterbusters, David Fajgenbaum, Global Genes, Joanna Kempner, Patient-Led Research Collaborative, psychedelics, Rebel Health, Wow! How? Health

Wow! How? Patient-Led Research Scorecards

March 27, 2025 By Susannah Fox Leave a Comment

In Dark Times Shine Your Light Brighter

Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]

Filed Under: Champions, Networkers, patient networks, research issues, Solvers Tagged With: Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Long Covid, Patient-Led Research Collaborative, PCORI, Quantified Self, Rebel Health, Wow! How? Health

The Other 80

April 22, 2024 By Susannah Fox 2 Comments

Screenshot from Derek Sivers' TED talk How to start a movement

Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: #wearenotwaiting, Claudia Williams, Dana Lewis, Derek Sivers, Hugo Campos, John Costik, Open Notes, Patient-Led Research Collaborative, Rebel Health, Sara Riggare, Stanford Medicine X

Wow! How? Patient-Led Research

January 18, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]

Filed Under: Champions, Networkers, patient networks, positive patterns, Seekers, Solvers Tagged With: Council of Medical Specialty Societies, Eric Topol, Fiona Lowenstein, Hannah Davis, Julia Moore Vogel, Lisa McCorkell, Long Covid, Patient-Led Research Collaborative, Rebel Health, Wow! How? Health

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

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Recent Comments

  • Susannah Fox on Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
  • Dave deBronkart on Patient Input on Clinical Trials: “I don’t have anything to add but I have a suggestion for the problem that trialists don’t *know* about the…” Oct 16, 14:01
  • Rufus on Hack needed: Tiny pills, trembling hands: “How about using a small piece of store bought bread? Slices of bread can be “smooshed,” and a small piece…” Oct 5, 23:48

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