Education on cancer risk assessment and genetic counseling to address cancer health disparities among racial/ethnic groups and rural populations: Implementing culturally tailored outreach through community health educators

Abstract

While significant progress is being made in cancer prevention and treatment, opportunity exists to make a difference for populations bearing an uneven burden of the disease. Research indicates that increased inherited risk and more‐aggressive forms of cancer among underserved racial/ethnic (R/E) groups (e.g., African American/Black, American Indian/Alaska Native, Asian, Hispanic/Latino, and Native Hawaiian/Other Pacific Islander) and rural populations may explain the cancer incidence and mortality disparities these populations experience. These racial and ethnic (R/E) categories reflect the standard naming convention for the classification of federal data on race and ethnicity. One method by which progress can be made for these underserved populations is to expand knowledge of, access to, and uptake of two existing and impactful preventive oncology tools—cancer screening and genetic counseling and risk assessment (GCRA). Individuals from these populations who have cancer may benefit by learning about treatment options, risk projections for secondary cancers, and clinical trial participation. Effecting change in community beliefs and behaviors regarding these preventive tools and yielding the aforementioned benefits will see greater success if shepherded by individuals accepted and trusted in the respective communities. This was the charge taken on and embraced by Community Health Educators in the National Cancer Institute (NCI) Center to Reduce Cancer Health Disparities’ (CRCHD) National Outreach Network (NON) and U54 Comprehensive Partnerships to Advance Cancer Health Equity (CPACHE) programs. The NCI CRCHD integrated into the work of these CHEs an emphasis on cancer genetic education. As part of their undertaking, NON and CPACHE CHEs detail education and outreach strategies that may be helpful to increase GCRA awareness and uptake in R/E groups and rural populations and, in turn, bring positive change for those with or at risk for heritable cancers.

Perceptions, Beliefs, and Experiences of Asians and Micronesian Islanders on Family Health History Genetic Cancer Screening Community Outreach

“…The cost of GCS was also raised by participants, an economic stability component of social determinants of health [ 24 ]. Financial barriers are a deterrent to GCS [ 25 ], and insurance status is associated with referral for genetic screening [ 1 ] and is a relevant issue of access raised in our study. Advances in genetic and genomic screening pose the risk of perpetuating cancer susceptibility screening disparities unless systemic education and access inequities are addressed.…”

“…We recommend next steps need to further involve community partners as stakeholders in research and programming. Researchers reported successful engagement efforts, including across sectors such as academia, community-based organizations, and community clinics [5,6,8,13,16,25,26,[28][29][30]. Researchers and HCPs doing community outreach with Asian and MI subgroups need to address community beliefs and behaviors as priorities under the umbrella efforts to help people understand the difference between general and inherited cancer screening.…”

Addressing racial/ethnic disparities in cancer clinical trials: Everyone has a role to play

“…Study sponsors should consider clinical trial coordinators and community health educators from the same racial/ethnic groups, because they may play an impactful role in optimizing awareness and education of cancer treatment and clinical trials. This should be coupled by provision of appropriate tools in plain language that clearly explain potential benefits to patients and their families, while also highlighting race/ethnicity‐driven measures of cancer risk and outcomes 36 . Educational interventions were, in fact, shown to increase willingness to participate in clinical trials, although different tools may be needed for specific racial/ethnic minority groups 37 .…”

“…Participation in clinical trials itself may ameliorate observed disparities in cancer outcomes, because clinical trials can provide access to evidence‐based medicines 58,59 . Achieving cancer health equity through optimizing diversity in clinical trials is a national and global imperative, and everyone has a role to play 24,36,60 …”

“…This should be coupled by provision of appropriate tools in plain language that clearly explain potential benefits to patients and their families, while also highlighting race/ethnicity-driven measures of cancer risk and outcomes. 36 Educational interventions were, in fact, shown to increase willingness to participate in clinical trials, although different tools may be needed for specific racial/ ethnic minority groups. 37 Considerations of community perspectives and cultural appropriateness would surely increase the success of such educational tools and initiatives.…”