The 2020 United States (US) census data1 identified that 18.6% of the US population was of Hispanic/Latino ethnicity. While 59.7% of the total population was identified as a non-Hispanic White race, this represents a 4.1% decrease from the 2010 census, suggesting a trend toward increased diversity throughout the nation. The composition of the non-Hispanic US population includes 12.6% Black, 5.9% Asian, and 9.2% American Indian/Alaska Native, Native Hawaiian, Other Pacific Islander, and Multiracial individuals.1
With some exceptions, Hispanic/Latino and non-White populations tend to receive worse healthcare compared to non-Hispanic White people. Pertaining to oncology, while advancements in cancer care have led to a decrease in overall cancer mortality rates in the US over the past decades,2 the prevalence rate of cancer continues to increase, affecting approximately 5.5% of the US population.3 Notably, however, there is a wide disparity gap across ethnic/racial populations, with Hispanic and non-Hispanic Black people having the highest incidence rates and, overall, the highest mortality rates for many major cancers and all cancers combined.2, 3, 4 Given these statistics, it is unsurprising that compared to non-Hispanic White people, Hispanic and non-Hispanic Black people affected by cancer tend to experience a greater cancer burden.2,5,6
In the next decade, the number of cancer survivors is expected to increase by more than 30% to 22.1 million individuals.7,8 While Hispanic and non-Hispanic Black populations have worse survival rates compared to non-Hispanic White people, given the projected increase in cancer diagnoses, it is anticipated that there will also be a significant increase in the numbers of Hispanic and non-Hispanic Black survivors of cancer.4,5,7 Although there are tools to assist with navigating the various aspects of cancer survivorship care, further evidence-based strategies for equitable access to available resources are needed to mitigate racial and ethnic disparities.5 The underrepresentation of racial and ethnic underserved populations in research, particularly among Hispanic and non-Hispanic Black people, negatively affects health outcomes due to a lack of quality of care.6,9 Eliminating health disparities across racial and ethnic groups requires culturally relevant, evidence-based knowledge to inform healthcare practice.10, 11, 12
To optimize oncology care, underserved populations need to be included in research studies. However, recruitment into cancer research studies from underserved racial and ethnic communities in the US is complex, often due to the historical mistreatment of participants and their data.13,14 A recent review of lifestyle trials reported that compared to the US population, Black participants with prostate cancer were underrepresented in the trials exploring exercise interventions (9% vs 15%) and trials among patients with advanced disease (9% vs 16%).15 Traditional power dynamics that prevent knowledge generation by members of underserved communities persist due to racism and labeling underserved populations as “hard to reach” rather than focusing on meeting their needs.14 There are different factors affecting an individual's decision to participate in clinical trials and cancer research in general, such as mistrust in the healthcare system or clinicians, weak relationships with the research community, geographic challenges causing a barrier to participate, and/or other personal circumstances such as psychosocial factors and inflexible research protocols.16, 17, 18, 19 For example, findings from one report20 highlighted that most Black women with metastatic breast cancer were unaware of clinical trials. Of note, only 40% of these participants were even offered a trial; however, over 80% of these Black women with metastatic breast cancer reported that they would consider participating in a clinical trial if provided adequate information.20
Community engagement and collaboration are known strategies to overcome mistrust of research by building trust among community members.21 These strategies are based on the principles of community-based participatory research (CBPR), an action research approach that emphasizes partnering with communities that join with the community as full and equal partners in all stages of the research.11,21 Using community engagement strategies to increase diversity and translate findings into practice can aid in mitigating disparities in cancer care.16 Intentional efforts are needed to create culturally and geographically responsive strategies and genuine engagement with racial/ethnic underserved people to foster informed decisions about study participation. In this analysis, we identified strategies and lessons learned from our recruitment of Hispanic, non-Hispanic Black, and other non-White people affected by cancer to enroll in our research study that investigated biologic (ie, stress biomarkers), psychologic (ie, perceived stress) and social (ie, sociodemographics) determinants of health behaviors (ie, physical activity, diet) and associations with quality of life among cancer survivors.
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