Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]
Pew Research Center
Rebel Health on The Nocturnists
Today is the one-year anniversary of the publication of my book, Rebel Health. To celebrate, I am inviting you to listen to my favorite conversation about why I wrote it and what lessons we can all draw from the patient-led revolution. Emily Silverman, MD, is the host of The Nocturnists. She suggested that I start […]
Acceptable uses of health data
My former colleagues at the Pew Research Center continue to publish the best research on the impact of the internet on American society, bar none. My fandom extends to creating a fact sheet summarizing their recent surveys about Americans’ data worries. The results are indications about what people think and feel about the shifting technology […]
Credible, useful, helpful, trustworthy
Inspired by a conversation with my FasterCures colleagues, I began looking into survey data related to trust and credibility, particularly: What entities and resources do people turn to when they need advice about important topics? Edelman, a global communications firm, has been measuring trust and credibility for 20 years. Their most recent Trust Barometer asked […]
Zooming into each other’s homes
My friend and community colleague Margie Morris wrote a wonderful article for a clinical neuroscience journal that, with her permission, I am excerpting for a series of posts (if you missed it, here’s the first one). She writes: To meaningfully connect, we will need to do more than show up online. Now, more than ever, […]
How might we push power out to the edges of the network?
Cambia Health Solutions’ podcast, HealthChangers, invited me to share a few lessons learned, both personally and professionally. Listen in or read the transcript (below): Leslie Constans: One of the things I wanted to kick off our conversation with was finding out a little bit about this idea of working at the intersection of health and technology […]
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