Public Q&A: Patient registries
A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m...
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Public Q&A: Peer advice during a pandemic
A community colleague wrote: Our neighborhood list serve has all sorts of ‘advice’. I’ll spare you:)Are you able to assess how peer-to-peer exchange is playing out with all of this? In the spirit of...
View ArticlePublic Q&A: COVID19 precautions and care
As a trusted node on my friends’ “nerd network” (i.e., the people who are known to dig in and research everything so others may not have to) I have been asked a few questions that I’d like to share,...
View ArticleImpact review
I conduct an impact review at the end of each year, looking back at how I spent my time. In 2018, I published a shareholder letter listing the questions I ask: Was the work (whether paid or pro bono)...
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 ArticleRebel Health: Rare Disease
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my...
View ArticlePublic Q&A: “I received scary test results. What questions should I ask my...
Sometimes the hardest part of a new situation, in any aspect of life but particularly our health, is saying out loud the scary thing. Someone dear to me received concerning test results and asked me...
View ArticleMy 5 favorite books on how to defend yourself against the U.S. health care...
Shepherd.com invites authors to write heartfelt reviews of other people’s books on a topic related to their own work. The site is a rabbit hole that you will LOVE exploring, so go ahead and click on,...
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