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”
The fact that cancer researchers had to wait until 2007 to acknowledge the reality of the “chemo brain” is yet another example of their inability to comprehend the power of the e-patients, the networked & informed patients and caregivers.
Chemo brain has been constantly discussed on the Internet cancer communities for at least 13 years!
Thousands of people have been writing about their own experience with this debilitating side effect of their cancer treatments.
It is really infuriating to see that the mindset of the health researchers is basically unchanged. First deny, for years, what so many patients tell you. Then when the reality of their complaints become absolutely inconvertible produce a “scientific study” that confirms what we, the longterm witnesses of those exchanges, all know to be true!
How many more years do we have to wait to see the birth of Health Science 2.0, where researchers understand that state of the art research MUST include the constant analysis of online communities conversations to capture, early on, signals of medical problems experienced by patients.