Search all of the Society for Participatory Medicine website:Search

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, trivialize, make patients feel it was all in their heads,” said Dr. Daniel Silverman, a cancer researcher at UCLA. (My question: What forced the change? E-patients bringing in proof that they had compatriots all over the country? )
– “As researchers look for a cause, cancer survivors are trying to figure out how to get through the day by sharing their experiences [online] … There are ‘ask the experts’ teleconferences… and fact sheets to download and show to a skeptical doctor.” (My question: Did the two sites – breastcancer.org & cancercare.org – experience a traffic surge on Sunday and Monday?)
– “Dr. Fleishman and others were pressed as to why a poor woman, working several jobs to feed her children, navigating the health care system and battling insurance companies, would not also need mental dexterity. ‘Maybe we’re just not asking them,’ Dr. Fleishman said.” (My comment: Kudos to the reporter, Jane Gross, for noticing that all the research focused on high-SES survivors. It reminded me, unfortunately, of a study released in 2002 which classified three types of respondents: “young professionals,” “mature professionals,” and the “unskilled” (that is, Latina working mothers who also care for older relatives, which I think requires quite a bit of skill). (see: “Tomas Rivera Latino Internet Content Study, 2002

 

Please consider supporting the Society by joining us today! Thank you.

Donate