Continuing my series of stories that hopefully make you say, “Wow! How did they come up with that?” Sara Riggare has been living with early-onset Parkinson’s disease since she was a teenager. In my book, Rebel Health, I wrote about her as an example of a Seeker, Networker, and Solver. She is constantly on the hunt […]
Regina Holliday
Discovery Diaries with Damon Davis
Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]
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 […]
Health Datapalooza X
This week is the 10th anniversary Health Datapalooza. It’s a milestone worth celebrating. In 2010, I attended what was then called the Community Health Data Forum at the Institute of Medicine. I posted a preview: Making Health Data Sing (Even If It’s a Familiar Song) and below are my notes from what we knew even […]
Artists of health care
I have found that we can anticipate the future by paying attention to artists. Like hackers, artists bend tools until they break and ask, “Why CAN’T I do that?” They push the edges of any field they find themselves in. Autodesk, which makes software for people who make things, created the Pier 9 Residency Program to […]
This Thanksgiving, engage with grace
The following is a repost from 2012, one of the first examples of what would become my “featured commenters” series: I want to continue the Engage with Grace blog rally by highlighting my favorite comment thread about it, from a 2010 post on e-patients.net. For me, this is what blogging is about — providing a […]
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