Brigade bringing together patients, researchers to find cure

Rosemarie Rogers could only laugh.

That’s not the usual response a doctor hears when informing a patient she has been diagnosed with breast cancer. But when Rogers’ doctor told her that her friend – who accompanied her to the appointment – had to drive her home, laughter was all he heard. The doctor, Rogers said, looked at her quizzically.

“My friend can’t drive,” said Rogers, who after 22 years still laughs at the memory.

Always one to find something positive in every situation, Rogers used her diagnosis as an avenue to become better educated about cancer. Having survived a lumpectomy, radiation and chemotherapy treatments, she passes along her knowledge about the disease that could have taken her life to as many people as she can. She has volunteered her time at numerous cancer organizations, including the Dr. Susan Love Research Foundation and the Y-Me organization. Her latest endeavor is the newly formed University of Illinois Cancer Center Patient Brigade.

Guided by principles of community-based participatory research (CBPR) and Patient Centered Outcomes Research (PCOR), the Patient Brigade was the inspiration of Patient Advocate Stephanie Carter-Logan, a three-time cancer survivor who received her care at the UI Cancer Center. Carter-Logan’s vision was to create a group of patient stakeholders who reflect the diverse ethnic, cultural and socioeconomic groups in the Chicago area.

Succumbing to the disease in September 2016, Carter-Logan’s memory lives on in the Patient Brigade, said Jacqueline Kanoon, senior research specialist and ChicagoCHEC center director. Comprised of a representative group of patient advocates who are survivors, family of, or supporters of survivors, the Patient Brigade “moves beyond engagement and ushers in a new era of stakeholder involvement to ensure that the patients and communities that we serve have an active voice at the table regarding the UI Cancer Center’s research and community engagement initiatives,” she said.

Karriem Watson, director of the Office of Community Engaged Research and Implementation Science (OCERIS), said that unlike traditional engagement and advisory boards, the Patient Brigade will play an integral role in establishing the research and engagement agenda of one of the nation’s leading public research university cancer centers.

Since her retirement from the federal government in 2004, Rogers did not want to sit idle and let her life pass her by. She volunteered as a coordinator for a Y-Me support group, and eventually became a counselor on a telephone hotline, and then on to a trainer. But she wanted to do more.

A friend suggested Rogers become involved in cancer advocacy and review grants through the Dr. Susan Love Research Foundation. She traveled to Washington to lobby Congress to discuss breast cancer funding, and underwent training at the National Breast Cancer Coalition, where scientists and researchers taught her the science of breast cancer.

When her mother developed health issues in 2011, Rogers reduced her volunteerism to care for her. Just like her, Rogers’ mother was always active and independent, delivering Meals on Wheels until she was 84 years old. When her mother became bedridden, Rogers knew her life was nearing its end. Having beaten cancer, she understood the dynamic.

“I tell people that whatever I want to do I’m going to do it now,” she said. “I love to travel. I’ve been all over the world. I just went to South Africa and next month I’m going to Cuba. I’ve always wanted to see the Taj Mahal, so I’m going to India in January. My neighbors always tease me about never being home. I tell them, ‘What am I going to sit around for?’ I know one day I may not be able to do things. I want to enjoy my life.”

After her mother passed away, Rogers again became an active participant in volunteering in cancer organizations. During her bout with cancer, she received treatments at Northwestern Memorial Hospital, and one day she attended a meeting sponsored by ChicagoCHEC, the National Cancer Institute-funded cancer health equity collaboration between the University of Illinois at Chicago, Robert H. Lurie Comprehensive Cancer Center of Northwestern University and Northeastern Illinois University, whose goal is to work together with many of the city’s underserved communities to foster meaningful cancer research, education, training and community engagement. During the meeting she heard a presentation from UI Cancer Center Director Dr. Rob Winn.

“I said to myself, ‘I don’t know who that man is but I want to meet him when this is over,’” Rogers said. “I introduced myself and I told him I would like to volunteer for anything you’re doing. That’s when I met Stephanie (Carter-Logan).”

With the death of Carter-Logan, Rogers has become one of the leaders of the Patient Brigade. She envisions the group working closely with researchers to learn what they are studying and why, and what results they expect to achieve.

“Researchers need to start with people like us before they start their projects because we know first-hand about the disease,” she said. “The Patient Brigade is progressing and now we’re deciding what the volunteers want to do. Some may want to work health fairs. Others may want to speak before groups. Over the next couple of months we’ll be moving forward.”

Rogers is in the process of developing a poster for the upcoming American Association for Cancer Research (AACR) meeting next month on the Patient Brigade as part of the Scientist↔Survivor Program, a unique program designed to build bridges and unity among the leaders of the scientific and cancer survivor and patient advocacy communities worldwide. While the majority of posters will be on research, Rogers wants to tell the story of the new Brigade.

“Whatever we do, we have to do together – survivors, researchers, doctors, whoever is affected by cancer,” Rogers said. “This has to be a total team effort.”

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