During a recent University of Michigan health equity presentation, a Maryland professor called for more “anti-racist approaches to patient engagement” in cancer research.
Dr. Christabel Cheung, an assistant professor at the University of Maryland School of Social Work, gave a presentation in February titled “A Call to Action and Response: Antiracist Patient Engagement in Adolescent & Young Adult Oncology Research and Advocacy.”
According to the National Cancer Institute, AYA oncology is cancer care or research for patients between the ages of 15 and 39 years old.
Cheung stated that she considers herself “an embodied researcher,” which she explained means that she identifies as BIPOC and is a two-time survivor of Hodgkin’s lymphoma in her adolescent and young adult years.
According to Cheung, more anti-racist approaches must be incorporated into oncology care and research. Her study examined “existing practices to ensure that ethical and effective research methods are employed when engaging with racially minoritized AYA cancer patients who may be particularly vulnerable and exploited.”
Cheung noted that she based her work on author Ibram X. Kendi’s anti-racism framework. She explained that Kendi argues that everyone is either anti-racist by promoting equality or racist by “working within systems” and “either being complicit or actually supporting racist approaches.”
“There is no such thing as not being racist,” she said. “The heartbeat of racism domestically in the United States has been denial of racism, and the sound of that heartbeat has been the argument, ‘I’m not a racist.’”
Cheung explained that she worked with others in the AYA oncology space to create recommendations on advancing anti-racist principles in cancer research to better serve program patients who identify as black, indigenous, or people of color.
“We want to offer you best practices in how to better engage with BIPOC AYA cancer patients so that we can improve the knowledge, center patient wisdom and prevent unnecessary suffering that is happening right now,” she said. “It’s very important for us to be mindful of the socio-political context that we’re in right now.”
After studying 32 AYA patients who identify as BIPOC, Cheung and her colleagues offered several recommendations, including engaging with those most affected, providing patient advocates with “education and honest disclosure” regarding what the research would entail, compensating patients, and avoiding “persistent tokenism.”
“Being a BIPOC AYA advocate myself … I was the Asian girl with a service dog,” Cheung said. “We knew who the black female cisgender individual was, we knew who the black male, gay AYA representative was. We became tokenized in those roles and it was unfair to us and unfair to the entire population because we cannot possibly represent the range of issues that all marginalized and minoritized AYAs face.”
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