A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]
research issues
Too legit to quit
Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]
LGBTQ+ youth are reaching out for help
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 […]
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 […]
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