A Call to Reimagine Community Engagement and Equity in Cancer

Association of Cancer Care Centers (ACCC) president Nadine J. Barrett, PhD, MA, MS, senior associate dean for Community Engagement and Equity in Research at the Wake Forest University School of Medicine and Atrium Health, learned the power of listening early in life. As a young child, Dr. Barrett would accompany her mother, a nurse, to the nursing homes in which she worked. There, her mother encouraged her to spend time with the centers’ residents. “Go and listen; don’t do a lot of talking, but listen to people’s stories,” Dr. Barrett recalls her mother saying, sharing the memory and its lasting impact in Reimagining Community Engagement and Equity in Cancer: A Virtual Conversation with Two Presidents. She was joined by Robert A. Winn, MD, director, and lipman chair in Oncology, VCU Massey Comprehensive Cancer Center and president of the Association of American Cancer Institutes (AACI), as they engaged in a compelling discussion moderated by Christie Mangir, MS, breast cancer survivor, patient advocate, and public health consultant.

“I learned that the world does not circulate around my perception and my experience only.” ~Dr. Barrett

Power in Humility

In their conversation, Dr. Winn echoed the ethos of Dr. Barrett’s takeaway from her time spent listening to the residents at the nursing homes in his dismissal of the reductive phrase, “dumbing down,” which is often used to describe conversations between patients and their providers. “I will not let any of my faculty members talk about ‘dumbing down,’—you’re not dumbing down anything, we’re just making what we do more accessible,” Dr. Winn explained. “The least wise of us are the ones who consistently say, ‘Oh, you need to actually learn my lingo,’ No. We need to be able to communicate in the language of the people more effectively.”

That sentiment epitomizes Dr. Winn’s presidential initiative for AACI, Inclusive Excellence. He elaborated on the need to tailor language to communicate more effectively and emphasized that doing so does not detract from the data. “Making the language more accessible to the community doesn’t dilute the science,” he said. “Making the language and understanding clearer to the community doesn’t mean that you have fewer people on clinical trials; it probably means you have more. So, I think we also, culturally, as academic and cancer centers around the country, even in the community, we have to start thinking that the reality is, there is power in humility.”

Equity in Who We Call Experts

Dr. Barrett connected Inclusive Excellence to her president’s theme for ACCC, Reimagining Community Engagement and Equity in Cancer, as she questioned the practice of the broader oncology community neglecting the experiences and approaches of community cancer centers simply because their findings are not published in academic journals. “A publication is wonderful,” she said. “But it doesn’t necessarily mean that’s the best evidence, especially when we’re talking about interventions, because some of these interventions are happening, boots on the ground, in communities, and we’re not engaging them. [But] together, could you imagine what we could do?”

Hardly Reached, not Hard to Reach

Dr. Barrett eschewed the terms “underserved” and “hard to reach” as they pertain to community engagement. “They’re hardly reached because we’re not reaching out,” she said. To establish the trust needed for engagement to flourish between communities and institutions, she recommended some underrated qualities and practices, returning to humility as a touchstone and folding in openness and transparency. She likened it to a marriage or any other relationship. “Those are things that you want, right? You don’t expect the community to build trust, you actually show up in these ways that are really authentic and meaningful and collaborative and amplify the strengths of our community.”

The Heart of Patient Navigation

In 1990, following an observation on the number of Black women who were being diagnosed with terminal breast cancer at Harlem Hospital Center and in combination with American Cancer Society findings on the effects poverty has on the treatment of cancer and other chronic diseases, Harold P. Freeman, MD, launched the first patient navigation program.

According to Dr. Barrett, Dr. Freeman trained and chaired her as a patient navigator. Thus, she has firsthand insight on how he paved the way for patient navigation to reshape cancer care. However, she noted that the discipline is now sometimes considered a “concierge service,” offered to everyone, an approach that she argues departs from its founding principle. “Recognizing that patient navigation came from Harlem, there’s a clear disparities piece that exists in its DNA that we start missing sometimes,” Dr. Barrett said. “And yet, the reality is, there are so many of us who are scientists and advocates in our communities, and we are not letting go. We will not give up."

View the entirety of Reimagining Community Engagement and Equity in Cancer: A Virtual Conversation with Two Presidents and explore ACCC and AACI resources connected to the webinar here. 

Jessica Ridge is a content coordinator at the Association of Cancer Care Centers (ACCC).