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What if your clinician gave you a prescription to check out a patient group...

Amy Gleason (@PatientSide) captured this line of mine, delivered on a panel at the Health Datapalooza yesterday. Her tweet generated an interesting cascade of reactions ranging from: “This is...

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Public Q&A: Peer support for parents of teens with cancer

Helen Burstin, MD, reached out to ask if I know of an online peer-to-peer support group for parents of teens with cancer. For anyone who knows Helen: Don’t worry, it’s not for her own family. She is...

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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...

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Public 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,...

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Impact 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)...

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Public 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 &...

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Rebel 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...

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Public 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...

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My 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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