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Sunday, June 07, 2009

Turning to patients for help in the 'war on cancer'

As I have traveled the web since my diagnosis just about 3 years ago, I have learned and heard others say that patients really need to be listened to, and patients with rare conditions should be listened to harder, since they have valuable information to share. I and a professional colleague/dear friend researched expert patient bloggers back in 2007, and found that they have a lot to offer new patients as well as health professionals/researchers, and thus should be considered as information sources by medical librarians. This week, I found a research journal blog post while searching for news on Adenoid Cystic Carcinoma that seems to agree with the idea that patients have much to offer those conducting cancer research, particularly rare cancer research. In HemOnc Today, Bill Wood, MD talks about a recent editorial in the Journal of Clinical Oncology by 2005 Pulitzer Prize winner Amy Dockser Marcus: From Dr. Wood's post: "Ms. Marcus argues effectively that the direct involvement of patient advocates in medical research represents a novel and promising mechanism for researching rare diseases." Ms. Marcus included the Adenoid Cystic Carcinoma Research Foundation in her article, a wonderful foundation begun by a family when the mom was diagnosed with ACC:
Dr. Wood sees a larger role for patient advocates in ALL cancer research, not just rare cancer. The only question I have is: are we that have the cancer, rare or otherwise, considered patient advocates, or are the two authors talking about inserting another level of humans in the research process between the patients and researchers? (For the purpose of this post, I am assuming that we that wear the scars are the advocates they are discussing.) So the good news for all of you out there that are wondering if the researchers are listening to us, the rare cancer patients - they just might start doing more of it. It appears that my idea of hosting a cruise and inviting researchers to join the hundreds or thousand(s?) of us that are currently on the surface of this blue planet might just be a bit closer to becoming reality... let me know if you are up to helping me plan it!
Here is a link to the original editorial in the Journal of Clinical Oncology: To make progress in rare cancers, patients must lead the way . You should be able to request a copy through your nearest library, or you can purchase it online for $22 from the journal itself.
Amy Dockser Marcus is a Wall Street Journal reporter that has written before on rare cancer issues. Here is a list of articles she wrote in 2004: . She received an Investigator Award in Health Policy Research from the Robert Wood Johnson Foundation in 2006,, for "Improving the Cancer Care Experience for Rare Cancer Survivors"

1 comment:

Jeanne said...

Hey, Teri, you know where I stand on this one! I'll help you plan the ACC cruise, if you'll let a lowly breast cancer/melanoma patient on board.

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