Archive for July, 2009

Making The “Army of Women” Idea Even Better

Last fall, I learned of Dr. Susan Love’s “Army of Women.”   This cause is moving in the direction of proactive civic participation with the breast cancer community.  From their site:

Women who are interested register on the Love/Avon Army of Women website, providing very basic information such as name, age, city, and state of residence.  Army of Women members will receive email updates from the Love/Avon Army of Women announcing new research studies looking for volunteers just like you.  The email will detail the research project and who and what the researchers need.  If you fit the criteria and you’d like to participate, all you need to do is reply to the email and let us know you’ve accepted our “Call to Action.”

This is a great first step, but it still keeps all the research proprietary.  In other words, there won’t be a centralized database kept on all participants across all studies they’ve participated in.  Why?  It’s likely, at least in part, due to the politics of funding medical research.

The result?  The September 15, 2008 Newsweek article entitled “We Fought Cancer…and Cancer Won” said that it is “indeed possible (and common) for cancer researchers to achieve extraordinary acclaim and success, measured by grants, awards, professorships, and papers in leading journals, without ever helping a single patient gain a single extra day of life.  There is no pressure within science to make that happen.”

While I think the AOW is a great idea, it can be made better.  Doctors need to share their data.  After all,  I own my medical history.  If I want to make my answers “public” to other medical investigators, why can’t I?  It would be a shame if egos trumped finding much needed cures.

Please click on the StandUp2Cancer badge on the main blog page.  For every completed click, this charity receives money from my sponsor.


July 13, 2009 at 1:15 am Leave a comment

NYT: Grant System Leads Cancer Researchers to Play It Safe

An outstanding NYT article to be found by clicking here.

A couple of excellent points made by readers in response to this piece:

HJBoitel talks about using super-computers to “mine” our health data for patterns.

“The United States will start getting serious about medical research and will start getting meaningful results when it is acknowledged that prevention and cure is not about doctors or institutions or competition or money — it is about data. We spend large amounts of money to track a small number of patients in a limited and often inconsistent way, and the results often are what you would expect in a pin the tall on the donkey approach.”

With HJBoitel’s approach, would everything that needs to be captured get captured?  I’m not sure.  But it’s one more thought along the same lines as what I proposed before.  Click here to find his entire, thoughtful comment.

My favorite comment came from Norma Greenfield, a cancer researcher and survivor.  She had a similar experience to mine with regard being interviewed for a study and being disappointed in its scope.

“While I was undergoing the chemotherapy treatment I was asked to participate in a survey about potential environmental causes of cancer. Since I had been exposed to many carcinogens in my life I was eager to participate in the survey…I expected that the study would ask about my exposure to carcinogens, birth control bills and the effects of estrogen replacement therapy. Instead I was asked whether I had been sexually molested when I was a child before puberty (I had not been) and I was asked detailed questions about my weekly consumption of green peppers and sweet potatoes. I was disgusted that grant money funded the study that I participated in…Too much funding depends on knowing the right people (mainly an old boys network), and not whether one is doing innovated, relevant research.”


July 1, 2009 at 9:46 pm Leave a comment

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