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Susannah Fox

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PCORI

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 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

Access to results that matter

October 26, 2017 By Susannah Fox 16 Comments

Painting of people climbing cell structures

The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]

Filed Under: health data, participatory research, policy issues, research issues Tagged With: Ben Goldacre, Bishop Simon Gordon, David Lansky, Diane Padden, flip teaching, Freddie White-Johnson, PCORI, Regina Holliday, Sharon Terry, Stephanie Buxhoeveden

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