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 […]
participatory research
A futurist’s perspective on LongCovid
Maneesh Juneja is a dynamic person, both in person and online, and I’m proud to call him a friend and community colleague. Unfortunately, he has been living with LongCovid, the long-term effects of the COVID-19 virus, for nearly 12 months. If you have not yet watched his recent Health Datapalooza keynote, now is your chance: […]
From stunt to solution
I’m so nostalgic for breathing in other people’s ideas and aerosols that I’m re-reading notes from past meetings. Today’s inspiration: a March 2018 meeting convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. My notes: Community biolabs, incubators, and accelerators are like ramps and bridges for citizens to gain access […]
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 […]
Tracking the trackers
UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]
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