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 […]
e-patients
Three Simple Rules–Susannah Fox
When in 2002 we came out with our bold new concept of “information therapy” I was sure that Tom would love the idea of doctors or health plans prescribing information to consumers. He didn’t. He was concerned that the prescribed information from clinicians would undermine the patient’s right or ability to search for information from other self-helpers…
…I think I am there—but then Tom might still not agree—for I still think that the self-help world will work better when the patient is also being prescribed information as a part of the process of care.
Patient-Driven Content at MedShelf.org–Susannah Fox
Online support groups have long been recognized as an important and unique source of medical information and social support for patients. Derek Hansen, Paul Resnick, and Sean Munson at the University of Michigan’s School of Information, are trying to help online support groups create community repositories using wiki software at http://medshelf.org.
Chemotherapy Fog Is No Longer Ignored as Illusion–Susannah Fox
April 29’s New York Times featured a story about breast cancer survivors who meet online to talk about “chemo brain” and how to cope with it: “Chemotherapy Fog Is No Longer Ignored as Illusion” (http://www.nytimes.com/2007/04/29/health/29chemo.html?em&ex=1178164800&en=8ddebc22187bd826&ei=5087%0A). Here are some excerpts which reminded me of our ongoing discussions about e-patients: – “Until recently, oncologists would discount it, […]
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