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 […]
Patient-Led Research Collaborative
Wow! How? Psychedelic Outlaws
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 […]
Wow! How? Patient-Led Research Scorecards
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 […]
The Other 80
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 […]
Wow! How? Patient-Led Research
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 […]
The Promise of Patient-Led Research Integration
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 […]
Recent Comments