Spotlight: Breast Cancer Research Advisory Network
When Nancy Thorne Cahill received her second breast cancer diagnosis at the University of Wisconsin Carbone Cancer Center, she didn't take it lightly.
"This is crazy. Why is this happening again?" Cahill said to herself. "I have got to do something."
Initially, that "something" was starting a breast cancer fundraiser with her husband called Be the Cure, which has evolved from a modest backyard gathering to a night of live music, dancing, and food and drink, always with one common theme: UW breast cancer researchers discuss their important work with attendees, and 100 percent of the money raised is used to advance breast cancer research at UW Carbone Cancer Center.
Now, that "something" also includes being a founding member of the Breast Cancer Research Advisory Network (BCRAN), a new collaboration of Wisconsin breast cancer researchers and community members, including survivors and patient advocate. Just over a year old, BCRAN is beginning to connect these two groups, with the goal of improving researchers' focuses to include the patient perspective. Members attend bi-monthly educational meetings as a group, and advocates and researchers work together as individual teams based on common topic interests.
It is the first research advisory network at UW Carbone Cancer Center and is expected to serve as a model for the formation of other disease-oriented research advocacy groups.
"Funding agencies such as the Department of Defense Breast Cancer Research Program now require grants to include at least one research advocate," said BCRAN co-director Jim Shull, PhD, professor of oncology with the McArdle Laboratory for Cancer Research and director of basic research at UW Carbone Cancer Center. "We have a few advocates we've all worked with, but we really need to build this advocacy network to include different perspectives."
Shull and BCRAN co-director Amy Fowler, MD, PhD, assistant professor of radiology at UW Carbone Cancer Center, envision the interactions between advocates and researchers will differ between teams, but in all cases they will focus on engaging the advocate in research and helping the researchers develop their topics with the breast cancer patient in mind. For example, Fowler worked with advocates to develop a protocol that might encourage more patients to enroll in a breast imaging clinical trial.
"The advocates' perspective is very helpful in terms of determining if what I'm proposing could be asking too much of a newly diagnosed breast cancer patient," Fowler said. "We think we know what people might be interested in for research, but that assumption could be a barrier to patient enrollment in a study."
"Before we were just saying, 'I'm an investigator, this is what I think you need to know,'" agreed Shull. "I'd like to have an advocate sit down and talk with my research group a few times a year where they can say to us, 'Your 10-year experiment on cancer genetics isn't going to help someone with metastatic breast cancer, but here's how I think you can better communicate to me why your research is needed, too.'"
Cahill said her research interest is in cancer cell biology and "why some cells go bad," and she expects to soon be paired with a group that studies that topic. For the long-term, she may choose to receive more formal training at research advocacy conferences, something Shull said will likely be funded through the grants on which the advocates are named.
Cahill's friend, fellow survivor and BCRAN member Lynn Malayter, said she expects her more than a decade of experience in breast cancer community outreach as well as experience in patient advocacy will help in her expected role as liaison between the researchers and the general public, by helping the researchers develop their presentations for community events such as Be the Cure.
"Communication is key, and I think that a lot of people see survivors talking about what they have gone through," Malayter said. "But what the community doesn't know as well is all the important research that goes on at the University of Wisconsin."
The idea for BCRAN originated with Shull as well as Amy Trentham-Dietz, PhD, professor of population health sciences, whose work has provided her with strong ties to breast cancer advocacy communities. Shull and Trentham-Dietz then approached Mark Burkard, MD, PhD, associate professor of medicine and Lee Wilke, MD, Director of the UW Health Breast Center and professor of surgery with the idea for a UW Carbone Cancer Center advocacy group. As co-leaders of the UW Breast clinical trials group, Burkard and Wilke were struck by the difficulty in bridging the gap between the patients for whom they cared and the engaging research programs at UW and were excited about starting a network. Together, the four faculty members organized the first BCRAN meeting in the fall of 2014.