One of my core beliefs is that we need to open up access to the data, information, and tools people need to solve their own problems in health care — or at least give people the chance to direct their data to experts who can help them. I recently had the chance to be part […]
Helping people find the needle in a data haystack
One of the most important customer-service lessons I ever learned was from E-patient Dave: when it comes to disseminating research, give people what they need, not what you want to create. About a decade ago, Dave was on deadline to turn in slides for a presentation. He needed one key survey finding to illustrate a […]
Well/Connected
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 […]
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