Breast Cancer Advocacy Group Bridges Gap Between Science and Patients

Posted in GUMC Stories

MARCH 6, 2013–For a few hours each month, a group of busy women set aside the demands of their professional and personal lives to gather in a conference room on the campus of Georgetown University Medical Center that is typically used by cancer researchers.

They are not scientists, but their connection to cancer is no less strong. They are the Georgetown Lombardi Breast Cancer Patient Advocacy Committee (GLBCPAC), a group made up of breast cancer survivors and other supporters who seek to foster dialogue between researchers and advocates so they can work together to integrate the patient’s perspective and accelerate the search for a cure.

Initiated in 2010, GLBCPAC was created in large part by Ayesha N. Shajahan-Haq, PhD, an assistant professor at Georgetown Lombardi Comprehensive Cancer Center and the group’s scientific advisor, who was inspired by patient advocates that she met during a grant review process.

“I could sense the enthusiasm in the room from the survivors, and the same constant enthusiasm continues to inspire me today,” she says.

With advice from other faculty, including Minetta Liu, MD, now at the Mayo Clinic, and Claudine Isaacs, MD, and Robert Clarke, PhD, DSc, co-directors of the breast cancer program at Georgetown Lombardi, Shajahan-Haq put the wheels in motion to form GLBCPAC.

“Encouraging researchers, basic or clinical, to work with advocates is the right step to help in bridging the gap between cancer research and the community it is intended to directly impact,” Shajahan-Haq says.

Just over two years later, the group has become a leading example of a center-based patient advocacy group, a model that Georgetown Lombardi leadership hopes can be duplicated in other disease areas throughout the cancer center.

“Working closely with this group of committed, passionate women, we have seen the power of patient advocates who are so well-versed in the science,” says Clarke, who in addition to leading the breast cancer program is dean for research at Georgetown University Medical Center. “We would be thrilled if we could replicate such a dynamic collaboration in other areas in Georgetown Lombardi or throughout the Medical Center.”

Coming Together for a Common Cause

GLBCPAC is made up of about 14 breast cancer patient advocates, ranging in age from 28 to 71, all from different professional and ethnic backgrounds. Among them are five formally trained National Breast Cancer Coalition Project LEAD graduates; and two are Susan G. Komen for the Cure Advocates in Science. Among the members is Wanda Lucas, a breast cancer survivor and impassioned advocate who is also executive director of Georgetown Lombardi’s Capital Breast Care Center.

At the group’s monthly meetings, the women typically have a packed agenda. On a given day, they might provide feedback for new Georgetown Lombardi research grant applications, explore advocacy training opportunities, outline patient support initiatives, review the latest scholarly publications, and make plans to attend upcoming scientific conferences and community awareness events. At times, a breast cancer researcher from Georgetown Lombardi’s faculty will present on science from a major cancer meeting.

So far, GLBCPAC have reviewed grant applications from Georgetown Lombardi researchers to funding agencies such as Susan G. Komen for the Cure, the U.S. Department of Defense, Patient-Centered Outcomes Research Institute and the National Institutes of Health.

The regular meetings and ongoing projects engage the women as few other types of interactions could, giving them a unique insiders’ view of the research world.

“My association with the fine Georgetown Lombardi faculty and staff … has changed my perspective from ‘us-and-them’ camps, to a collaborative ‘how-can-we-help-each-other’ perspective,” says Vicky Carr, a three-year survivor of the disease. “As patients and researchers working together in partnership, we can all become more potent forces to make a bigger difference in accelerating the end of breast cancer.”

Drawing Strength From Each Other

But the women who are GLBCPAC agree that the group is more than just work in advocacy. The group has made them realize that they can make a difference; it makes them feel less alone as women who have coped with and will always cope with cancer. Many of the women emphasize that being a part of GLBCPAC has empowered, enlightened and enabled them.

“We gain strength from each other,” says member Margery London, a 20-year breast cancer survivor.

Member Susan Winarsky says that the group has provided her with a source of comfort and support as she deals with her experience with cancer.

“[Being a part of GLBCPAC] provides a sense that my experience with breast cancer can have a positive result for me, that I share a very special bond with other breast cancer survivors, and that by working together we can make a difference and help others,” Winarsky says.

The group’s two-year track record has also made an impression on the researchers. Shajahan-Haq says she draws as much, if not more, inspiration from their meetings as the survivors do.

“As a scientist, I feel privileged to be the scientific advisor for GLBCPAC. To be able to discuss research applications and recent clinical trials with advocates and oncologists at monthly meetings has been very constructive and informative for my own work,” says Shajahan-Haq. “Moreover, working with advocates has given me the chance to see research outcomes from a patient’s perspective.”

She believes that patient advocates can influence cancer research by bringing together their collective experiences, education, knowledge and skills in evaluating cancer research. Advocates, she suggests, can assist with translating science in more practical ways for breast cancer patients, as well as emphasize research’s potential to improve lives and reduce cancer mortality rates.

“I believe that my interactions with advocates have improved how I translate my research findings to students, trainees and non-scientists. With the constant pressure of writing successful manuscripts and grants, it is often easy to forget the community that we are meant to serve though our work, especially if you are a basic scientist, who is often far removed from any clinical setting,” Shajahan-Haq says. “Having the right perspective is helpful in assembling the right idea for the specific aim of a grant or the discussion section of a manuscript, which can have the highest impact on the patient community.”

To learn more, visit the GLBCPAC blog (new window)

By Sarah Kana, Georgetown Lombardi Communications