Faculty Member's Work Empowers Patients for Better Care
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In the United States, African-American and Latina women are diagnosed with breast cancer less frequently than white women. But once diagnosed, studies have shown that these women are far more likely to die of their disease. To Vanessa Sheppard, PhD, that is unacceptable.
“The umbrella issue here is health disparities. There is some factor impeding access to care for these women,” she explains. Sheppard is an assistant professor at GUMC’s Lombardi Comprehensive Cancer Center.
When she moved to Washington in 2001, she was struck by the apparent contradiction between the large number of cancer and other health care centers in the city and the high rates of breast cancer. According to the District of Columbia’s Cancer Control Plan for 2005-2010, Washington has the highest breast cancer mortality rate in the nation and the fifth-highest incidence rate among all 50 states.
As a member of Lombardi’s Cancer Control Program, Sheppard’s mission is clear: “Let’s figure out why this disparity exists and do an intervention to improve the situation. Part of this issue is patient-physician communication and patient empowerment.”
With grant support from Susan G. Komen Foundation and the National Cancer Institute, Sheppard is developing two programs to help African American and Latina breast cancer patients make informed decisions about their treatment. Both programs match patients with patient navigators who are often breast cancer survivors themselves. Unlike many patient navigator programs that walk patients through screening or surgery visits, Sheppard’s programs navigate women through the treatment decision process.
Sheppard’s first program, which began in 2004, was called Latina a LatinaSM (Woman to Woman). Working with local Latina cancer support groups and research organizations, such as Nueva Vida Inc and the Latin American Cancer Research Coalition, she identified Latina breast cancer survivors who were interested in volunteering as navigators for other Latina women. The goal of the program is twofold: To perform an intervention with women and to see if that intervention helped women receive care.
“It is very challenging for immigrant populations who may not have health insurance and may not share a language with their doctor,” says Sheppard. “They are grateful for care and know that they may be denied care altogether. In this context it is then difficult to feel empowered.”
The results of the study were overwhelmingly positive. The measured outcome was patients’ satisfaction with communication with their physician. It was much higher for women in the program.
“The navigators became very committed to the patients, staying in contact for much longer than just one visit and one phone call,” she says. “And we found that the patients were very appreciative of having someone knowledgeable about the process to advise them.”
One key component of the navigator’s role was to help make patients a participant in their care by asking questions, taking notes, and feeling that they were able to make decisions about treatment.
“Not every provider will be receptive to questions and taking notes, as I know,” she says.
Part of Sheppard’s passion comes from her own experience as a cancer survivor. While in college, she was diagnosed with Hodgkin’s Disease, a type of lymphoma. As a patient, she felt there was a gap between what her providers tried to explain and what she understood. But she says she overcame this by asking questions and advocating for herself.
“Not everyone knows that you can ask for your chemo appointment to be on a certain day, so that you can feel well for special occasions. Those are the kinds of things that I asked for during my treatment.”
Using the success of the Latina a LatinaSM program, Sheppard is also developing a patient navigator program for African-American women, called Sisters Informing SistersSM. After this study is completed, Sheppard wants to make sure that the two programs are available to communities around the country to help women with diagnosed breast cancer.
“I understand how difficult a time getting a diagnosis is in someone’s life. I want to make sure that women receive the support they need, and reduce – if not eliminate – disparities in healthcare.”
By Allison Whitney, excerpted from the Lombardi website
