Dr. Joe Kvedar interviewed me for his podcast, Well/Connected, and I thought I’d share footnotes for all the resources I mentioned. Key findings from the national survey of 14- to 22-year-olds focused on digital health and social media use, sponsored by Hopelab and Well Being Trust, which took a special look at people living with […]
Peer support for when the system fails
What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]
Social media as a platform for hope
I’ve been thinking about how people react to a crisis. How, if we are lucky, we find ways to lend and borrow expertise to get through it. And how we lend and borrow courage. In the American South, there is something called the Cajun Navy, an ad hoc, informal group of people who use their […]
A deep dive into food allergy research and education
Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]
The Great Now What
Today is World Stroke Day. With this post I’m amplifying the work that Maggie Whittum and her team are doing to raise awareness of the following: 15 million people suffer a stroke each year worldwide. Stroke is the #4 killer and the #1 cause of long-term disability in the U.S. There are over 7 million […]
Data as an engine of disruption in health care
Continuing my practice of “flipping” an event — posting what I hope to get across in advance in order to jump start the conversation — here is a preview for a panel set to take place on Oct. 23. My co-panelists (Iya Khalil, Deborah Kilpatrick, and Don Rucker) and I will talk about data as an engine […]
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