Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]
trends & principles
Rebel Health
Longtime readers know I’ve spent the last two years writing a book about peer-to-peer health care and the incredible work being done by patients, survivors, and caregivers. (Even longer-term colleagues and friends know I’ve had this project on simmer since I left Pew Research, but I got happily sidetracked a couple of times.) I am […]
Caregiving is not a “career break”
LinkedIn recently announced a new feature: the “career break.” Users can choose from 13 different types of time away from paid work, such as bereavement, career transition, caregiving, full-time parenting, a gap year, or travel. It is a big step forward. But I want more. I want caregivers to be recognized as essential members of a health […]
What can we do by Tuesday?
If you have spent time learning about health care improvement, you may have heard someone ask, “What can we do by Tuesday?” It’s an urgent question that asks you to immediately apply an abstract principle to your daily practice. I had heard it repeated many times over the years, without attribution, and I was curious […]
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 […]
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