1 (edited by marions Tue, 17 Jan 2012 13:12:07)

Topic: The Cholangiocarcinoma Foundation and patient advocacy

We are an advocacy group trying to raise public awareness about important cancer issues.  These issues are needed in the area of services, education, and research.  Groups like ours help bring about changes that will help cancer patients and their families. 

I would like to share with you my role as task force patient advocate:

Patient advocates serving on the NCI's Scientific Steering Committee or NCI Scientific Task Force are to support the development of important clinical trials by presenting the patient perspective during concept evaluation and related activities.

Advocates are selected to serve on either committee through votes of the membership of Steering Committees or Task Forces.

Patient advocates on disease specific task forces discuss concepts and when appropriate, provide input into the design and implementation of clinical trials.  On behalf of the patient we are to assure that the committee focuses on the relevance of research questions.  It is our goal to insure that a patient-friendly protocol is established and that other practical issues such as accrual, barriers, and communication are achieved. 

We are to determine how each concept fits into the overall strategy for the disease.  (In may case:  Cholangiocarcinoma and Liver cancer.)

Additionally we are to assure that each clinical trial discussions include a special focus on access for minority and the underserved population.

Task Force Advocates are in communication with Steering Committee advocates, the NCI Office of Advocacy Relations http://advocacy.cancer.gov/, and the NCI Coordinating Center for Clinical Trials: http://ccct.cancer.gov/

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Cholangiocarcinoma Foundation and patient advocacy

Marion, good post and if I may, I would like to add that as a Patient Advocate a lot of what you do is to steer a Patient/Caregiver in the right direction. For instance, I read where you politely correct wrong information that is sometimes posted on our site from well intentioned Posters. This is not an easy thing to do and you have very keen eyes as well as very diplomatic answers. This is why I cannot stress enough that our Members can garner ideas and experiences but in the end please contact your own Physicians as we are NOT Doctors. Oh, and Marion, I want to be just like you when I grow up!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Cholangiocarcinoma Foundation and patient advocacy

Marion, I am popping this up again as I feel it is very important!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Cholangiocarcinoma Foundation and patient advocacy

Marion - I am just reading your post on Patient Advocacy.  Very interesting as this is something that I am very interested in getting involved in as well, whether in a political manner or privately.  But ever since my husband was diagnosed with cc, I have certainly had the opportunity to be even more of an active patient advocate.  If there is any insight or direction you can provide to further me in this direction, that would be great.  I would be very interested in serving on a committee as I feel this is a very important cause.

Re: The Cholangiocarcinoma Foundation and patient advocacy

jelizpar....thanks so much for your posting.  I would love to speak with you.  You may e-mail me: marion.schwartz@cholangiocarcinoma.org
I am looking forward to hearing from you.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER