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...
View ArticleLongCovid’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...
View ArticleDepression, 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,...
View ArticleLGBTQ+ 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...
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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:...
View ArticlePublic Q&A: Human-centered design
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 &...
View ArticleThe 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,...
View ArticleA survey about clinical trial support groups
I love talking about peer-to-peer health care, noodling over survey research questions, and meeting new people. Thanks to an introduction from Craig Lipset, I recently got to do all three. Denell...
View ArticleTransforming research participation
Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research...
View ArticleBooks I read while writing Rebel Health
While writing my upcoming book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients...
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