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 […]
artificial intelligence
Wow! How? Dr. ChatGPT
Every post in my Wow! How? Health. series starts with a story that hopefully makes a reader say, “Wow! How did they accomplish this great health innovation?” The answer is often related to concepts I explore in my book, Rebel Health. Please let me know what you think or if you have questions. Comments are open. When […]
Case study: Recurrent fever
Anyone who has endured a multiple-day fever — or cared for someone with one — knows how exhausting it can be. Imagine experiencing nine weeks of a mysterious elevated temperature. Then nine MONTHS of what feels like a personal broken thermostat. And clinicians have little to no explanation besides plans for future tests. That’s the […]
Transforming research participation
Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare […]
Cyberchondria: Old Wine in New Bottles
Just before Thanksgiving, Microsoft released a study entitled, “Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search.” Ryen White and Eric Horvitz took advantage of a data set that few people have access to (log files from Microsoft’s Live Search engine and MSN Health and Fitness) as well as a survey of 515 […]
Recent Comments