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ADVOCACY SUB-CORE

 Overview:  The UAB/CSHL SPORE has an active pancreatic cancer advocacy group led by Mr. Bruce and Mrs. Sue Clements (a 7 year pancreatic cancer survivor) at UAB. To this advocacy group will be added representatives from “Let’sWin” www.letswinpc.org , a patient advocacy group supported by the Lustgarten Foundation and dedicated to enabling patients, doctors, and researchers to share fast-breaking information on potentially life-saving pancreatic cancer treatment and trials that go beyond the standard of care. Letters of support from these most qualified advocates are included and expound on their roles and participation in this SPORE program. Dr. Tuveson (CSHL) serves on the Let’sWin Scientific Advisory Board. These two groups represent strong linkages to pancreatic cancer patients and their families. Ms. McCullen-Donaldson and a representative from Let’sWin will be members of the Core Executive Committee and the SPORE CTRC. They will attend the annual SPORE meeting as members of the Internal Advisory Committee and participate in local and national advocacy efforts through PanCAN and its local affiliates.

Roles:  The activities of the Advocacy Sub-Core will be coordinated with the needs of the SPORE investigators and directed by Drs. Buchsbaum and Vickers. The advocates regularly interact with the SPORE investigators regarding ongoing translational research and to promote education throughout the pancreatic cancer community.

Goals: Overall objectives of the Advocacy Sub-Core are: (a) to ensure that audience-appropriate terminology is utilized in communicating with pancreatic cancer patients, their families, and advocates, which promotes improved comprehension; and (b) to promote communication to the community of patients with pancreatic cancer about ongoing translational research and clinical trials addressing this disease. Toward the end of the proposed funding period, the patient advocates will participate in the development of the next SPORE competitive renewal application.

Future Plans: The SPORE advocates will meet with leaders of the competitive renewal application to better understand the individual Core aims, project goals, and objectives and to assist in their implementation. They will create a list of “best practices” regarding IRB and HIPAA regulations and are building a larger pool of patient advocates from which to draw for review of documents related to SPORE clinical studies, including consent forms, and to disseminate information regarding the SPORE. In addition to continuing these activities, members of the Advocacy Sub-Core will:
- Educate the public about pancreatic cancer by working with community groups;
- Utilize media outlets (internet, television and public radio) to increase pancreatic cancer awareness;
- Raise public awareness regarding SPORE programs through national activities, namely other SPORE and NCI programs and other cancer organizations such as PanCAN, the Lustgarten Foundation, and the ACS;
- Increase interactions with pancreatic cancer support groups such as PanCAN’s Patient and Liaison Services (PALS);
- Develop innovative strategies for improving communication between basic investigators, clinical investigators, and pancreatic cancer patients and their families to take maximum advantage of the translational research opportunities provided by the national SPORE program.

A vital component of the Advocacy Sub-Core of the Clinical Core will be continued support of pancreatic cancer support groups for patients and their families at each clinical site. The pancreatic cancer advocates will continue to work closely with the Clinical Core Research Nurses/Coordinators to plan support group meetings to be held at each site. All patients with a clinical diagnosis of pancreatic cancer will be introduced to the Advocacy Sub-Core and support groups.

Although participation of the patient advocates has been minimal, our future plans will aim to bridge this gap. SPORE Investigators will continue to engage in local fund raisers which most certainly include presenting short talks at local PanCAN chapter meetings and to be available for question and answer sessions during these fund raising events. Physician involvement at the community level promotes awareness and encourages a sense of pride for survivors and their families. Knowing there are cutting-edge treatment options and new research endeavors conducted at the local level provides hope where there is often despair.

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