FYI Research:
Advocates inspire innovative cancer research

In 1990, Barbara Parker was diagnosed with two kinds of breast cancer within three months. One way she fought it was by reading scientific journal articles. "I decided that whatever happens to change things for women who have cancer, it first goes through a basic-research lab," Parker says. "The best that science has to offer patients is an educated guess. As long as my life depended on an educated guess, I wanted to be one of the ones making it."

But she found all the studies overwhelming. When she met University epidemiologist Bob Millikan, she asked him if he would help her understand what she was reading. He agreed to meet with her once a week, which he did for about a year. "Bob knew the authors, knew which journals were the best," she says. "It was exciting for me to have all this information put into context, rather than getting it in a hit-or-miss fashion."

Parker's reading came in handy when a researcher at Duke University invited her to join other patients who were observing scientific presentations and giving comments. That was her first step toward becoming a patient advocate.

Today, Parker, who lives in Raleigh, serves on the executive committee of a breast cancer research program at Duke and is patient-advocacy chair for a national organization that designs and conducts clinical trials. She is one example of the many patient advocates who are changing research.

In the early 1990s, breast-cancer survivors began fighting to get more money for research. One high-profile example was the Long Island Breast Cancer Study, which Congress funded in 1993 in response to lobbying from women who were convinced that environmental factors were contributing to breast cancer in the two counties where they lived on Long Island.

Marilie Gammon, now professor of epidemiology at Carolina, was principal investigator of that study, in which she led a team that interviewed more than 3,000 women (both those with breast cancer and those without) and that collected blood and urine samples as well as soil and water from near the participants' homes. The main results of the study were published in 2002.

Gammon and her colleagues continue to analyze data from the study and recently published two additional reports.

Advocates have also helped get funding for other programs such as the Department of Defense's Congressionally Directed Medical Program in breast-cancer research. That was funded in 1992 partly because of a lobbying campaign led by the National Breast Cancer Coalition.

As advocates secured more money for research, they also wanted to have a say in how that money was spent. To do that, they needed to understand the science. So the National Breast Cancer Coalition created a training course to teach advocates scientific concepts and critical thinking skills. Millikan is one of several scientists who helped develop the curriculum for the course, called Project LEAD (Leadership, Education and Advocacy Development).

Women use those skills as they serve beside scientists on study sections, which review research proposals for funding at agencies such as the National Institutes of Health and the Department of Defense. Advocates also serve on committees that advise the Food and Drug Administration on approval of cancer drugs.

Advocates have also inspired researchers to think about new directions. Millikan says that though he has studied mostly genetics, his work with research participants and advocates "constantly reminds me of what else is out there to study."

Parker, for example, played a role in the discussions that led to Millikan and colleagues asking women what they thought caused breast cancer, as part of the Carolina Breast Cancer Study (a long-term look at 4,000 North Carolina women with and without the disease).

The women suggested some possible risk factors that the scientists had never considered such as physical injury, stress, and bereavement. So the researchers began analyzing their data for these factors. The team found no association between cancer and physical injury to the breast. But the other two ideas "turned out to be very interesting," Millikan says. "Profound emotional loss and loss of health care due to unemployment were associated with breast cancer being diagnosed at a later stage." A later diagnosis means treatment may not be as successful.

In the resulting paper that appeared in the journal Environmental and Molecular Mutagenesis in 2002, Parker and another patient advocate were listed as coauthors with the scientists.

Millikan says that patient advocates remind researchers of the urgency of their work. "When a patient advocate is at a meeting, the tone of the room changes," he says. "It reminds us that there's a lot more at stake than just our careers."

For more about the Long Island study, visit: epi.grants.cancer.gov/LIBCSP.

Marilie Gammon and Bob Millikan are also affiliated with Carolina's Lineberger Comprehensive Cancer Center. Find out more about the Carolina Breast Cancer Study at cbcs.med.unc.edu.

Provided by Research and Economic Development.
Editor: Neil Caudle. Writer: Angela Spivey.

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