Cancer Navigation Research Is Missing the Voices of the People Who Need It Most
March 30, 2026
By the time many people with cancer begin treatment, the barriers they face, including confusing medical information, fragmented care, transportation challenges, and financial strain, have often been building for weeks or even months.
This is why patient navigation programs were created. Navigators help patients schedule appointments, understand treatment options, coordinate care among multiple providers, and connect with resources that address financial or logistical barriers. For people facing complex healthcare systems, navigation can make the difference between timely treatment and dangerous delays.
But there is a question we rarely ask: Are these programs being designed around the needs of the people most affected by cancer disparities?
A recent scoping review conducted by researchers at GO2 for Lung Cancer and published in an ASCO journal examined cancer navigation studies across the United States and Canada. The goal was simple: to understand what kinds of support patients say they need and whose voices are shaping the research guiding these programs.
The findings revealed several consistent challenges. Across the studies reviewed, patients most often reported difficulties with communication with their healthcare providers, emotional and psychological support following diagnosis, and basic access to care. Many patients described struggling to understand complex medical information, coordinate appointments across multiple specialists, or manage the emotional toll of a cancer diagnosis.
Yet the most striking finding was not the needs themselves. It was who was missing from the research.
Despite experiencing some of the highest cancer mortality rates in North America, African American and American Indian or Alaska Native populations were rarely represented in the studies reviewed. Only a small portion of the research included these groups, even though they face well-documented barriers to screening, diagnosis, and treatment.
At the same time, many studies failed to report key factors that strongly influence cancer care experiences, including whether patients lived in rural or urban areas or whether they faced financial hardship. Without this context, it becomes difficult to fully understand the barriers patients encounter while navigating cancer care.
The timing of these findings is critical. Health systems across North America are increasingly investing in patient navigation programs to reduce disparities and improve outcomes. But if the research guiding these programs does not reflect the communities most affected by cancer disparities, there is a risk that well-intentioned solutions will miss the barriers that matter most.
Some critics may argue that expanding navigation programs should be the priority, regardless of who is represented in the research. Navigation programs have indeed shown tremendous promise in improving care coordination and helping patients move through complex healthcare systems.
But expanding programs without ensuring that the evidence reflects the experiences of the most vulnerable populations at risk, reinforcing the very disparities these programs are meant to solve.
Cancer care does not always require complicated solutions. Sometimes the first step is simpler: making sure the people most affected by the problem are the ones guiding the conversation about the solution.
Until cancer navigation research consistently reflects the voices of the communities most affected by cancer disparities, the healthcare system will continue trying to solve problems without fully understanding them.
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