Cancer survivorship goes beyond treatment – it includes long-term physical, emotional, and social challenges. Although the patient’s cancer may be in remission, they’re still expected to attend multiple appointments to manage the long-term effects of treatment. And unfortunately, many patients don’t have the best experiences in the healthcare system, which can affect treatment adherence and overall outcomes.
A growing body of evidence has linked discrimination to poorer health outcomes and lower quality of life. Findings show that patients – typically those of color – often feel dismissed or entirely disrespected by healthcare providers.
New findings from the All of Us Research Program examined experiences of discrimination among racial and ethnic minority cancer survivors in the United States. The data highlights why clinicians – and the healthcare system as a whole – need to work toward improving equitable survivorship care.
The researchers sought to characterize the experiences of both everyday discrimination and healthcare discrimination among racial and ethnic minority cancer survivors. They performed a cross-sectional analysis using survey and electronic health record (EHR) data from the All of Us Research Program. The All of Us Research Program is a large-scale research effort led by the National Institutes of Health (NIH) to advance precision medicine. The program collects data from voluntary participants across the U.S. to obtain different types of health information, ranging from health surveys to biological samples.
In the study, researchers pulled data from adults ages 18 and older who:
The researchers used validated measures to assess everyday discrimination and discrimination experienced within healthcare settings.
The results showed that discrimination was highly prevalent among racial and ethnic minority cancer survivors. Among the 2,546 cancer survivors included in the analysis, approximately 60 to 70 percent reported experiencing discrimination in everyday life. More than half also reported discrimination in healthcare settings.
Many participants (30 percent) also reported facing high levels of discrimination exposure, with about 1 in 6 experiencing discrimination both in daily life and within healthcare environments.
The researchers also identified differences among racial and ethnic groups. Black American cancer survivors reported significantly higher levels of both everyday and healthcare discrimination compared with other groups. They also had the highest rates of high-level discrimination exposure.
Asian American cancer survivors reported the highest levels of overt everyday discrimination in comparison to other groups. Overt discrimination is direct, intentional unfair treatment of an individual or group based on identity or protected characteristics.
The findings suggest that discrimination experiences are not linear and may require more tailored interventions for equitable care across patient populations.
Discrimination in a healthcare setting can influence a patient’s trust, engagement with healthcare, communication, treatment adherence, and long-term follow-up. Cancer survivors require ongoing surveillance, symptom management, and supportive care. Negative healthcare experiences may create barriers to accessing these necessary services.
The study’s findings are particularly relevant given the persistent racial disparities in cancer outcomes and survivorship experiences. Black Americans experience the highest overall cancer death rates and lower 5-year survival rates than white Americans across most cancer types in the United States. Research also shows that Black cancer patients frequently encounter overt and implicit racial bias from clinicians, medical assistants, front desk staff, and administrative personnel.
Clinicians and their supporting healthcare and administrative staff should recognize that these experiences outside the clinical setting may also affect patients’ well-being, perceptions of care, and healthcare utilization. Implementing culturally responsive communication and routinely assessing patients’ concerns about treatment experiences may help strengthen therapeutic relationships and improve treatment adherence.
Researchers concluded that discrimination – both every day and in healthcare settings – remains a common experience among racial and ethnic minority cancer survivors. They recommend strengthening anti-discrimination efforts within healthcare systems and improving support services. Additionally, patient navigators or advocates may be a helpful resource to share with cancer survivors reporting high levels of discrimination or discrimination occurring across multiple settings.
Future research should examine how discrimination affects survivorship outcomes over time and identify interventions that can reduce its impact on patient care.
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