Research advocates have a unique and important contribution to make to cancer research, and are increasingly playing an important role in the cancer care setting. By participating in the development and oversight of research, advocates can truly influence the nature of cancer research and the future of patient care.
At Vanderbilt-Ingram Cancer Center (VICC), research advocates participate in the NCI’s Specialized Program of Research Excellence (SPORE), bringing the patient perspective to the table, and helping scientists make the translation of cancer research to cancer patients efficient and effective. Research advocates may be cancer survivors, family members/caregivers, health professionals or community advocates who have an interest in cancer research and are willing to work directly with researchers in a specific SPORE program.
Since 2004, research advocates have been an integral part of the Breast SPORE team, offering patient experiences and perspectives into all aspects of breast cancer research at VICC. Five passionate, determined and dedicated women are actively involved helping to bring the best science to those who are affected by breast cancer by contributing in the following ways:
- Attend monthly Breast Cancer Programs and SPORE seminars
- Serve on SPORE executive committee
- Attend project meetings as part of the interdisciplinary team and participate in research discussions
- Review and provide input on research development, design, clinical trials and informed consents
- Develop patient-oriented resources and tools for SPORE clinical trials
- Raise awareness through presentations to patient and community groups
- Facilitate collaborations with local, regional, and national organizations dedicated to breast cancer
- Participate in on-going advocate educational sessions
For more information about research advocacy opportunities contact:
Jane Kennedy, MSSW
Manager, Patient Advocacy
691 Preston Research Building
Nashville, TN, 37232
- Lynne Cargen
A breast cancer survivor and an active member of the breast cancer community, Lynne brings many years advocacy experience to the SPORE advocacy program. Shortly after her diagnosis in 1996, she became involved with the Tennessee chapter of the Breast Cancer Coalition, serving in many capacities as board member, board president and executive director. In 2004, Lynne became the first Breast SPORE research advocate while she continued to stay involved with other national organizations such as the Lance Armstrong Foundation, and the National Breast Cancer Coalition. Lynne is a graduate of Project LEAD and Project LEAD Clinical Trials, serves as a Komen Advocate Reviewer, attends monthly research and advocate meetings, and the annual NCI SPORE Investigators workshop. She also serves on the VICC External Scientific Advisory Board, the VICC Survivorship Committee, and is a writer and editor for a newsletter publication called BREASTLINK.
- Kara Cargen
Inspired by her mothers’ cancer diagnosis 11 years ago, Kara recognized the importance of patient advocacy and became active in several advocacy arenas, including the Tennessee Breast Cancer Coalition, the National Breast Cancer Coalition, and Susan G. Komen for the Cure. Kara joined the VICC Breast SPORE advocacy program in 2005 and currently serves on the External Scientific Advisory Board and the VICC Survivorship Committee. In her role as a research advocate, Kara has become a Project LEAD and Project LEAD Clinical Trials graduate and completed the ACCR Scientist-Survivor training. Kara also serves as a member of the Tennessee Cancer Control Coalition and the Nashville Latino Health Coalition.
- Pam Martin
After a breast cancer diagnosis 15 years ago, Pam became committed to patient advocacy from a personal, political, social, community and scientific perspective. Through her participation in local, community, and national advocacy efforts, Pam has demonstrated her dedication to being a voice for all cancer survivors. She has served as a Tennessee Breast Cancer Coalition member for eight years and is an active volunteer with Gilda’s Club-Nashville as well as Susan G Komen, Race for the Cure and the American Cancer Society Relay for Life. Her advocacy work with the VICC Breast SPORE began in 2005 and includes attending monthly SPORE research and advocate meetings and the annual SPORE Investigators Workshop. Pam is a graduate of Project LEAD and is a planning committee member for the VICC annual Cancer Survivors Day
- Patty Lee
As a breast cancer survivor since 1999, Patty has shared her experiences and knowledge in a variety of venues, both professionally and personally. She received a M.L.S. degree from the University of Texas, and has been a medical librarian for over 25 years working closely with the cancer research community. Patty joined the VICC Breast SPORE in 2005 as a research advocate, participates in the SPORE research and advocate meetings, and facilitated advocate training on accessing scientific online resources. She also serves on the Breast Cancer Tumor Board, is a patient advocate on the VICC Cancer committee, and has been accepted as a consumer reviewer for the Department of Defense Breast Cancer Research program.
- Janet Piper
Prior to her breast cancer diagnosis 2 years ago, Janet was active in several health and cancer related volunteer activities for over 15 years, including serving as a committee member for the TJ Martell Foundation, an entertainment industry foundation for cancer research. Her breast cancer advocacy experience began in 2006 when she joined the Breast SPORE advocacy program and participated in the filming of a video by cancer survivors on clinical trials. Janet attends SPORE research and advocate meetings, serves as a Komen Advocate Reviewer, and in 2007 was a featured speaker at the VICC Breast Cancer Research Retreat. Janet also attended the 2007 ASCO meeting, the 2007 Breast Cancer Symposium, and is a graduate of the Research Advocacy Network, “Focus on Research” training.