The SPORE in GI Cancer

Advocacy

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 2003, research advocates have been an integral part of the GI SPORE team, offering patient experiences and perspectives into GI SPORE research at VICC. Four committed cancer survivors and caregivers are actively involved helping to bring the best science to those who are affected by colorectal cancer by contributing in the following ways:

  • Serve on GI SPORE Institutional Advisory Board;
  • Attend SPORE research conferences and seminars;
  • Attend monthly Project meetings;
  • Review and provide input on research development and design, clinical trials and informed consents;
  • Develop patient-oriented resources and tools for SPORE clinical trials;
  • Raise awareness about cancer research and clinical trials through presentations to patient and community groups;
  • Serve as advisory members on other Vanderbilt committees and initiatives;
  • Facilitate collaborations with local, regional, and national organizations dedicated to colorectal cancer;
  • Participate in on-going advocate continuing education sessions.

For more information about research advocacy opportunities contact:

  • Jane Kennedy, MSSW
    Manager, Patient Advocacy
    691 Preston Research Building
    Nashville. TN. 37232
    Telephone: 615-936-1072
    Fax: 615-936-5879

Ardeth Obenauf, Ron Obenauf and Robert. J. Coffey, MD

Advocate Profiles:

Diane Lancaster

Soon after her husband’s diagnosis of colon cancer in 2002, Diane became interested in cancer research and clinical trials. Inspired by her husbands hope that his involvement in clinical research might help others in the future, Diane became involved in the research advocacy program at VICC. Since his death in 2003, Diane has continued to be active in SPORE advocacy activities, including attending Project 3 meetings, monthly key personnel luncheons and advocate meetings, SPORE seminars, and the annual NCI SPORE Investigators workshop. Diane has attended numerous research advocacy trainings through the Colorectal Cancer Coalition and participates in political advocacy at the state and national level to support colon cancer research. In 2004, Diane received an award of appreciation at the GI/Pancreas InterSPORE conference and continues to serve on the GI SPORE Institutional Advisory Board, and is a member of the Colorectal Working Group of the Tennessee Comprehensive Cancer Control Coalition.

Ron Obenauf

As a 5 year metastatic colon cancer survivor, Ron is passionate about colon cancer research and educating the public on the importance of prevention and early detection. His research advocacy experience began in 2006 when he became an active member of the GI SPORE advocacy program and includes attending Project 4 meetings, SPORE research seminars, monthly advocate meetings and key personnel luncheons. Ron has been a speaker at the GI SPORE External Advisory Board Meeting, the Research Advocacy Network presentation at VICC and was featured in an Ayers Institute story by the Ivanhoe Medical News Service. He serves as a member of the Internal Advisory Committee of the Vanderbilt University Tumor Microenvironment Network (VUTMEN), and the Middle Tennessee Survivorship Community Network. Through the Tennessee Comprehensive Cancer Control Coalition, Ron participates in on-going community and provider education projects.

Ardeth Obenauf

During Ron’s treatments for colon cancer, Ardeth became aware of the laboratory and clinical research work being done at Vanderbilt, and was inspired to contribute in some way. When they were approached by Dr Jordan Berlin to participate in the research advocacy program, she felt it was the right opportunity to give back. “The advocate program has given us the opportunity to participate in the research process which we hope will in turn benefit others.” Ardeth has become a committed member of the GI SPORE advocacy program and attends Project 4 meetings, SPORE research seminars, key personnel luncheons, and monthly advocate meetings. Ardeth participates in the Middle Tennessee Survivorship Network, is a member of the Colorectal Working Group of the Tennessee Comprehensive Cancer Control Coalition, and attended the PRIM&R Human Research Protection conference. She is pursuing the role of “community member” on the IRB and is developing a GI SPORE clinical trials brochure for advocates.


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