Twice recently I have had the privilege of traveling to North Carolina Central University (NCCU) in Durham, North Carolina, to participate with a team working to reduce breast cancer mortality disparities specifically among inflammatory breast cancer (IBC) patients.
NCCU professors Kevin P. Williams, Ph.D., Jodie Fleming, Ph.D., Xioahe Yang, Ph.D., and Seronda Robinson, Ph.D., have established a graduate training and public health initiative focused on breast cancer disparities. As a historically black university, NCCU is dedicated to understanding the reasons why African-Americans have a higher mortality rate from breast cancer. They are training graduate students to address the problem with a cross-disciplinary approach supported with a $405,000 award from Susan G. Komen For the Cure.
Changing the numbers
One factor in the higher breast cancer death rate among African-Americans is that they have a higher proportion of aggressive breast cancers like triple negative and inflammatory breast cancers. So the scientists in this program are focusing their research on triple negative IBC. But the program goes well beyond bench science to include public health components as well.
On March 23, 2017, I was invited to share information with the students and faculty about my personal IBC story and about how the IBC Research Foundation approaches outreach. Following my presentation to the graduate students, research scientists, and public health professionals on the outreach team, we brainstormed about good ways to provide information about IBC to the public particularly in minority communities.
On May 12, 2017, I was back to learn more about what the program has been doing. One important key to this program is trans-disciplinary training in an integrated biosciences PhD program. The graduate students work closely with a mentor doing basic science research while also learning about how diseases affect communities, especially minority communities. I was working with the group focused on IBC, but the program includes research into other diseases like diabetes.
Flipping the frame
While conducting laboratory research, the students are out with the public. They have been to health awareness days and are working on a partnership with the African Methodist Episcopal Zion denomination in North Carolina to develop outreach education to encourage more people to participate in clinical trials. In addition to their basic science courses, the students are also enrolled in courses at Duke University that explore the reasons for health disparities and how to overcome them.
A major emphasis is learning how to do community-based participatory research in which the scientists develop research and outreach with the community instead of coming up with an idea within the academic setting and then preaching it to an audience who had no part in its creation. Too often programs for marginalized communities are considered from a perspective of a community’s deficits. The program at NCCU is designed to “flip the frame” and consider the strengths a community brings to solving health issues.
From lab to community
The most inspiring part of the May meeting was hearing from four PhD students about their research and long-term plans. Helen Oladapo, a native of Nigeria, is working on ways to predict which drugs might work best on triple negative IBC. Later that afternoon, she went to her graduation to receive her doctorate. She plans to continue working on drug development.
Hamzah Kharabsheh, Tia Tate, and Ariel Williams also presented an overview of their basic science research. In addition, they discussed how they have become involved in community outreach. Williams, a first-year student in the program, spoke about the opportunities she has had to talk to patients and advocates. She said “talking to them puts what I’m doing with a face.”
Ginny Mason, executive director of the IBC Research Foundation, was with me at the retreat.
“I think we, as advocates/patients, forget that many researchers have never talked to a patient, and they need to be reminded that people get cancer and die of the disease,” she said. “It’s not enough to study cell lines and mice.”
Empowering researchers, patients, and community members to work together to overcome barriers that cause some groups to have worse health outcomes is the goal of the PhD program in Integrated Biosciences at NCCU. It is making sure scientists see faces when they work in labs and remember that their work needs to go from bench to bedside.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.