From left, Lynne Cargen, Patty Lee and Pam Martin share a laugh during a brainstorming session at the Research Advocacy Conference at the Vanderbilt-Ingram Cancer Center. (photo by Dana Johnson)
Cancer patients become advocates for research
Lynne Cargen of Brentwood, Tenn., is a former school teacher, an English major who spent most of her life trying to avoid science classes.
But when she was diagnosed with breast cancer, Cargen felt compelled to learn as much as she could about the science of cancer, joined the Tennessee Breast Cancer Coalition and went to Washington to lobby for more breast cancer research.
“In 1998 I heard a scientist claim that by the year 2000 breast cancer would be a manageable disease and we could end the pain and suffering,” Cargen explained. “A couple of years later I heard another great speaker say the same thing. But it never happened. So when Carlos Arteaga, M.D., of Vanderbilt-Ingram Cancer Center asked me to become a research advocate, I was ready to bring the patient perspective to the people who are doing the science.”
Today there are 12 research advocates who work directly with the Breast Cancer, Lung Cancer and GI Cancer SPORE research programs at Vanderbilt-Ingram. They sit in on various research meetings, helping to design patient consent forms, discussing clinical trials and sharing their insights with researchers.
Nancy Roach became an advocate for GI cancer research after her mother-in-law was diagnosed with rectal cancer.
“During clinical trial development, I always ask what the patient is being asked to do in the study,” said Roach. “I want to know if the trial will be more onerous than if they're in standard treatment. Will they need five extra scans and three extra biopsies and do we need to do all of that?”
David Carbone, M.D., Ph.D., professor of Medicine and Cancer Biology, was the first Vanderbilt-Ingram researcher to offer patients and family members a formal role in the research process.
“This is a life and death struggle for these patients and their families, and they need to be empowered, they need to be informed,” said Carbone. “The best way to accomplish that is to ask questions and inspect the research process.”
Jane Condon, manager of Patient Advocacy, coordinates the activities of the men and women who represent patients during the research process. Vanderbilt-Ingram is one of the only cancer centers in the country with a leader like Condon dedicated to managing a research advocacy program.
“The advocacy movement is so new that there wasn't a defined job description for research advocates, so now we're developing those definitions,” Condon said. “For the past year they have received additional training through a series of scientific workshops and educational sessions, and they are writing a training manual to help future advocates understand their role in the research process.”
Cargen is pleased with the progress of the research advocacy movement.
“We're there to put a human face on the disease,” said Cargen. “This is what we have worked for — to have a place at the research table.”