Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building. Health 2.0 Europe began, for me, in February, […]
ACOR
Privacy can kill, openness can heal–Susannah Fox
If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox: I prefer to turn the question […]
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 […]
Stress: the New Normal for Cancer Patients?–Susannah Fox
Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay: I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the […]
E-patients With Chronic Conditions–Susannah Fox
Sometimes my research becomes a little too much for me to bear alone. Like when I find that people living with chronic disease and disability are among the least likely to have access to the internet, but who, once online, are among the most avid e-patients. Or when I am emailing with an ACOR member […]
Online Patient Groups
Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others. Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.
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