In partnership with Vicky Rideout and I, Common Sense Media created fact sheets about multiple groups included in our national study (Latinx, Black, female, LGBTQ+ youth, to name a few) and I thought I’d share each slice of data in a series of posts. The complete survey findings, methodology, quotes from participants, fact sheets, and questionnaire […]
research issues
Depression, social media use, and digital health
In partnership with Vicky Rideout and I, Common Sense Media created fact sheets based on our national study and I thought I’d share slices of data in a series of posts. The complete survey findings, methodology, quotes from participants, fact sheets, and questionnaire are available here. Here’s the 10-second summary for this featured group, young people […]
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 […]
Leveraging data-driven patient participation to accelerate medical research
Here’s a lesson I learn over and over again: Never assume knowledge. Don’t waste your time making a point if you are not sure your audience understands the context for it. Or, as the wise Andy Kohut used to say, “If they don’t get the premise, they won’t get the joke.” Last year I spoke […]
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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