A Call to Action: Antiracist Patient Engagement in Adolescent and Young Adult Oncology Research and Advocacy

Abstract

Amidst the concurrent global crises of coronavirus disease 2019 (COVID-19), uprisings against Anti-Black racism and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as essential workers in the public health devastation of COVID-19, and as representatives of healthcare institutions wrought with the impacts of systemic racism. Clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology, must come together in authentic activism to begin the work of creating structural change to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed when engaging with racial and ethnic minority AYA patients with cancer, who may be particularly vulnerable and exploited in the current context.

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature

“…Additional disparities remain for certain subgroups and by coverage, with a critical need to adopt inclusive and authentic approaches to include under-represented AYA research populations, such as LGBTQIA+ and BIPOC AYAs in future evaluations. 90,91 Although SES and insurance status represent critical domains, these are likely not the only components affecting access to care and health outcomes for AYAs. There has been minimal investigation of individual and structural SDOH among AYAs with cancer, including patient economic stability, access to paid medical leave, and community environment including location of health care.…”

Cardiovascular disease in adolescent and young adult cancer survivors: Impact of sociodemographic and modifiable risk factors

“…Structural racism and its effect on access to care and economic opportunity remains a driving cause of racial disparities in health outcomes, including CVD 27 . Specifically in the AYA cancer population, there are persistent gaps in research and knowledge about minority patients' health outcomes and the factors contributing to the poorer long‐term outcomes we observed in this study and others 28,29 . Black and Hispanic cancer survivors are less likely to see health care specialists or follow preventive health services guidelines and are more likely to report prescription medication nonadherence than White cancer survivors 30–34 .…”

“…27 Specifically in the AYA cancer population, there are persistent gaps in research and knowledge about minority patients' health outcomes and the factors contributing to the poorer long-term outcomes we observed in this study and others. 28,29 Black and Hispanic cancer survivors are less likely to see health care specialists or follow preventive health services guidelines and are more likely to report prescription medication nonadherence than White cancer survivors. [30][31][32][33][34] Although it did not reach statistical significance, we observed a trend toward an AYA history of cancer further increasing racial and ethnic disparities in contribute to an increased risk of CVD.…”

The long-term financial experiences of adolescent and young adult cancer survivors

“…Despite a recent emergence of commentaries and reviews addressing financial hardship among AYA survivors, the issue—and, more importantly, interventions to address it—remain understudied, particularly among historically and systematically excluded populations [ 6 , 11 , 28 – 30 ]. Promising efforts have been made toward disease- and treatment-focused research and among specific populations, including YA survivors in the military and YA women in the workforce; these studies demonstrate a need for tailored interventions to address the unique concerns experienced within disparate populations [ 31 , 32 ].…”