On March 11th, 2011, a massive 9.0 earthquake and resulting tsunami devastated the lives of people in Northeastern Japan. Over 15,000 died and over 2,600 remain unaccounted for as a result of this natural disaster. Among those affected included thousands of cancer survivors. Thanks to LIVESTRONG Foundation and RadioShack, $250,000 was raised to fund five projects in support of cancer survivors in the Tohoku region.
My Oncology Dream Patient Advocacy Training led by Oncology Education Project Association is one of five 3/11 Disaster fund recipients. With the leadership of Dr. Naoto Ueno and support from others in the medical and advocate community, patient advocacy trainings are being held with the following areas being covered:
1) Public forum on “Natural Disaster and Cancer”
2) Vision and Mission (for patient advocates)
3) Evidence Based Medicine (EBM) and Advocacy
4) Social Networking and Cancer Advocacy
A unique aspect of this program is at the end of the training, participants are separated into groups based on interest and have the possibility of being funded by the My Oncology Dream program to execute its advocacy project dream.
One issue that came to light was not all cancer patients or survivors knew their cancer details (ex. stage, grade) and treatment history. From my understanding, at least one hospital in Tohoku area lost all its patient data. Without such information, another oncologist would be unable to be effective in helping continue a patient’s treatment in a timely manner.
To prevent such a patient problem in the future, my team has proposed a “My Karte” card template and campaign which would encourage and enable patients to record their cancer details and treatment history and keep it handy in their purse or wallet in case of another major natural disaster.
Even I had forgotten the grade and stage of my non-Hodgkin’s lymphoma. Now I have that information in my wallet in case of an emergency. We hope this campaign will help encourage others to take more personal responsibility of their own cancer care which is a win-win for themselves and the medical community.
Japan for LIVESTRONG (JPLS) volunteer group is honored to have the opportunity to be a co-sponsor of these Tohoku patient advocacy trainings made possible by the LIVESTRONG Foundation. Fellow LIVESTRONG Leader Hirose Manami and I as Senior LIVESTRONG Leader and JPLS co-founder, participated in the first patient advocacy training in Sendai in November 2012.
Other LIVESTRONG leaders and I plan to attend and support the second training scheduled in Fukushima April 20-21.
Training is open to the public and free of charge. More details and how to apply (in Japanese) at http://www.oncology-dreamteam.org/blog/cat63/
Knowledge is power. Unity is strength.
LIVESTRONG in Japan! LIVESTRONG worldwide!
LIVESTRONG Leader, Japan