Alexandra Drane and her team have a new post on The Health Care Blog about how to put this holiday to work in a new way. Here’s a snippet: Some conversations are easier than others Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. […]
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The Pew Internet/Health FAQ
A big part of my job, and one I love, is answering questions, mostly from reporters. Sometimes I have just the data or insight someone needs, often I recommend someone else. Here is a sample of frequently-asked questions and my current answers. Please add your questions and answers in the comments: What are you curious […]
Participatory medicine and health data rights on NPR
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on […]
Tell the FDA the whole story, please
I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…) So when I saw Jonathan Richman‘s tweet the other night, I couldn’t resist it: Anyone ever seen data on the overall accuracy of […]
Clinical Trial Data Rights?
“If you expose human beings to an experimental treatment, the public has a fundamental right to see the results of those experiments.” – Steven Nissen, chairman of the cardiology department at the Cleveland Clinic, quoted in The Sunlight Foundation’s account of Bray Patrick-Lake, an e-patient who was left with only questions after a clinical trial […]
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