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 […]
Gina Assaf
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 […]
Doing the work
I am thrilled to share that I am writing a book for MIT Press about the alchemy, grit, and soul of the health innovation pipeline that is powered by people connecting with each other to solve problems. Here’s the back story, which illustrates one of my core principles: Do the work that needs to get […]
LongCovid’s citizen scientists
Amy Dockser Marcus writes with the sensitivity and precision of a scientist, which is why I was thrilled that she recently turned her attention to the patient-led research being conducted by people with LongCovid, which affects an estimated 10-20% of COVID-19 patients. The Wall Street Journal‘s pay wall may prevent you from reading the full […]
Patient-led research is a key element of pandemic response
On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]
Advancing clinical registries to support pandemic treatment and response
The biomedical research model has a blind spot. People living with a condition or disease are traditionally seen as passive sources of data, not active participants in the research. We as a society miss out on promising avenues of inquiry. It’s time to widen our lens. On August 12, I’ll moderate a discussion about how […]
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