Patients as Partners

While scientists may drive cancer research efforts, at Vanderbilt-Ingram cancer survivors are invited to help steer the research vehicles. The Research Advocacy program is designed to close the translational research circle by bringing the patient perspective into research
discussions.

“Around the time we received our first Lung Cancer SPORE grant one of my patients and the wife of a patient became very interested in the research here,” recalled David Carbone, M.D., Ph.D., professor of Medicine and Cancer Biology. “Back in 2001 the concept of patient advocates was not well-formulated, but I started inviting them to our research meetings. This is a life-and-death struggle for these patients and their families and they need to be empowered, they need to be informed, and the best way to accomplish that is to ask questions and go to the meetings and inspect the research process.”

Today, there are 12 research advocates who work directly with Vanderbilt-Ingram’s three SPOREs – Specialized Programs of Research Excellence – in gastrointestinal (GI), lung and breast cancers.
Nancy Roach became an advocate for GI cancer research after her mother-in-law was diagnosed with rectal cancer. “I saw the groundswell of support for breast cancer funding and the research breakthroughs and I got frustrated that the same kind of focus wasn’t there for colon and rectal cancer,” explained Roach.

When she was diagnosed with cervical cancer a few years later, the fight became even more personal. “I thought I knew what it was like to hear the words ‘you have cancer’ and grapple with my own mortality, but I didn’t until I went through it.”

Today, Roach is one of many patient advocates who sits in on numerous research meetings at Vanderbilt-Ingram and asks questions on behalf of patients. She has formed her own national
advocacy group – C3: Colorectal Cancer Coalition – and she continues to highlight Vanderbilt-Ingram as a leader in the patient advocacy movement.

“One of the things I really like about the Vanderbilt researchers is that when I ask why they’re doing a certain type of clinical trial, they always have very clear answers and it’s always something that makes a difference for patients.”

Advocates at Vanderbilt-Ingram have contributed in a variety of ways including reviewing and providing input on research development and design, clinical trials, informed consents and tissue collection, providing a strong voice for the priorities and needs of patients.

Lynne Cargen is an 11-year cancer survivor who serves as a research advocate for the Breast Cancer SPORE program. She was just 39 when she was diagnosed with invasive breast cancer.
“We are there to put a face on the disease and to show the reality to the researchers,” Cargen explained. “As an advocate I want to dispel the myths about breast cancer.

It’s important to take the fear out of clinical trials and to tell the public about the importance of research.”

Jane Condon, manager of Patient Advocacy, coordinates the activities of the men and women who provide this critical patient perspective for researchers. Vanderbilt-Ingram is one of the only cancer centers in the country with a leader like Condon dedicated to managing a research advocacy program.

“Previously there wasn’t a defined role or a job description for research advocates, so now we’re developing those definitions,” Condon said. “The advocates decided as a group they wanted additional training, so for the past year they have been attending a series of scientific workshops and educational sessions to develop and enhance their skills. They are also writing a training manual to help future advocates understand their role in the research process.”

These activities have broadened the scope of the advocates’ activities within the Cancer Center and they are now being assigned to other research committees outside of the SPORE setting.

One of the goals of the advocacy program is to develop community education programs and materials to spread the word about cancer research and clinical trials to a wider audience. “Cancer research advocates have a unique opportunity to educate and engage the community in meaningful discussions about research,” Condon said.

– by Dagny Stuart