GBCA creates model for developing scientist-advocate collaborations in cancer research

At Georgetown Lombardi Comprehensive Cancer Center, a group of breast cancer advocates say they've created a model for developing productive, successful, and sustainable collaborations between advocates and scientists in cancer research. They describe their efforts in an article published online August 17 in the journal Cancer Research.

The Georgetown Breast Cancer Advocates (GBCA), a volunteer group supporting and promoting cancer research at Georgetown University, was formed in 2011. The group has been partly supported through Georgetown Lombardi Comprehensive Cancer Center's cancer center support grant from the National Cancer Institute (1P30-CA-51008), as well as generous gifts from the Nina Hyde Breast Cancer Research Fund and Women and Wine at Georgetown Lombardi.

Cancer researcher Ayesha Shajahan-Haq, PhD, serves as the group's scientific advisor.

"The advocates who make up GBCA bring unique and important viewpoints to the cancer research process," explains Shajahan-Haq, senior author of the article. "As researchers, we need their input to help keep us focused not only on the scientific details of our work, but to keep us grounded and ensure we maintain a patient-centered approach."

In their article, GBCA addresses the benefits of engaging advocates in cancer research -- both in preclinical and clinical stages -- and underscore ways in which both the scientific and advocacy communities can facilitate this mutually beneficial collaboration.

"Their input is not limited to the patient clinical experience," Shajahan-Haq adds. "Often, they evaluate preclinical research to suggest ways which help make it more relevant to the problem at hand. They are valuable allies in the fight against cancer and integral to the research process."

The group also outlines ways to cultivate the scientist-advocate relationship long-term, often laying the groundwork with trainee scientists. They also proactively seek out opportunities for advocates to receive training in how to understand and evaluate cancer research, says Jeannine Salamone, part of GBCA and a co-author of the article.

GBCA advocates are often survivors, like Salamone, those living with cancer or those who have had close personal experiences with cancer.

"Due to their familiarity with cancer, advocates want to use their experience to help others facing the disease," explains GBCA member and co-author Sherri Stahl. "We are strong proponents of scientific progress and are committed to increasing our knowledge and expanding our reach within the community."

"Many scientists find that collaboration with advocates strengthens their proposals by clarifying their goals and impact on patients," the article's authors conclude. "Ultimately, both groups learn more about the other and develop an ongoing relationship characterized by a mutual respect and empathy."