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/