Here’s a lesson I learn over and over again: Never assume knowledge. Don’t waste your time making a point if you are not sure your audience understands the context for it. Or, as the wise Andy Kohut used to say, “If they don’t get the premise, they won’t get the joke.” Last year I spoke […]
research issues
Tracking the trackers
Every day I see a new example of a survey or other tool to collect individual-level experiences with COVID-19. Some are organized at the grassroots, others are sponsored by companies or academic medical centers. Some are for support, others for epidemiology, and still others for clinical discovery. Some would be recognized as patient registries, others […]
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 sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]
How to make 10 million discoveries
When people’s questions go unanswered, they don’t stop asking them. They turn to Dr. Google and other sources. They try to solve their own mysteries, using whatever they can find. This is an opportunity that some people misread as dangerous or wrong. How might we help more people contribute to discovery of new treatments or […]
Rare Disease Day 2019
Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]
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 […]
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