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 […]
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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 […]
Superheroes and rock stars at the Institute of Medicine
Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video. ___________________ The Institute of Medicine’s recent […]
Participation Matters–Susannah Fox
In politics and in health care, participation matters as much as access. The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in […]
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