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 […]
LongCovid
Crazy, crazy, LongCovid, obvious
LongCovid is an extraordinary challenge to the human body. It’s been met with an extraordinary response from the human spirit. As I wrote in a previous post, we are watching patients, caregivers, clinicians, researchers, and policymakers move through the stages of peer-to-peer health innovation at a fast clip. Faster than I’ve ever seen in my […]
How connection can lead to change
In April, Harvard Business Review published my article, “How Chronic-Disease Patients Are Innovating Together Online.” Since then I’ve been collecting other stories about people gathering online to solve their own problems — an innovation pipeline powered by what I call peer-to-peer health care. Fortunately and unfortunately, there are many examples. People living with long-term effects […]
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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