Recommendations: 2022 Advancing the Science of Cancer in Latinos

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This is part of the “Advancing the Science of Cancer in Latinos: 2022 Conference Proceedings,” which summarizes findings and discussions of the 2022 Advancing the Science of Cancer in Latinos Conference on Feb. 23-25, 2022, in San Antonio, Texas.

Conclusion

To eliminate cancer disparities in Latinx populations, Advancing the Science of Cancer in Latinos brought together researchers, scientists, physicians, healthcare professionals, patient advocates, and students from across the US and Latin America.

These presenters shared research advancements, identified gaps, developed actionable goals, updated clinical best practices, described effective community interventions, and detailed professional training programs aimed at addressing inequity. In the process, most of the speakers made recommendations, either specific to their field of study or more broadly.

The following are some key recommendations abstracted from their conference presentations.

Recommendations

Addressing Systemic Inequities Behind Cancer Disparities

Change comes most naturally at the community level. Communities themselves are the best source of insight into their own needs, and community leaders or individuals who have proven trustworthy to the community are the most powerful agents of change. Health behavior changes, increased access to care, and the closing of many inequity gaps can be achieved by simply listening to and relying on generational wisdom. Importantly, providing fair compensation and adequate support for community health workers is paramount to engaging communities in a socially just way. [Nunez-Smith, Molina, Bandera, Sanchez-Johnsen, Rivera, Jones]

Addressing systemic racism starts with self-assessment. Healthcare professionals must practice self-interrogation, acknowledging the structural racism in healthcare systems and ensuring that instead, diversity and anti-racism are the norm. Since unconscious biases are worse in times of high stress, the COVID-19 pandemic only exacerbated the problem, emphasizing the importance of self-awareness. [Nunez-Smith, Duma]

The physician workforce must reflect the population. Patients often show bias, preferring doctors that look and sound like themselves. These microaggressions against racial minorities, as well as the LGBTQ+ community, lead to feelings of isolation and exclusion. In fact, there has been no increase in Latinx and Hispanic medical students over the last 10 years. [Duma, Rivera]

Cancer risk reduction must include strategies for addressing obesity. Among Hispanic adults in the United States, 44.8% are obese, second only to non-Hispanic Black adults at 49.6%. Of the obese population, however, Hispanic adults have the highest percentage of females with a waist circumference over 88 cm. This can be partially attributed to the nature of Latinx neighborhoods, which can be food deserts, have high poverty rates, lack green spaces, and be areas of high stress due to violence. All of these negative aspects can lead to higher BMI. An estimated 5% of all cancers in men and 11% in women are attributed to excess body weight, with endometrial, gallbladder, and liver cancers being the most affected. [Bandera, Rodriguez-Rodriguez, Diaz, Sanchez-Johnsen, Setiawan]

Disaggregating the Latinx cancer population into subgroups can give more accurate data. The US Latino population is a heterogeneous mix of subgroups that may differ in country of origin, acculturation, nativity, socioeconomic status, generation, disability, religion, sexual orientation, imigration status, and US region in which they reside; these factors can influence cancer risk and outcome. Most US cancer studies report data on Latinos as an aggregate group, obscuring the differences that exist among subgroups. [Sanchez-Johnsen, Trevino]

Language and culture must be considered when designing research. Researchers must understand the impact of language on research, clinical care, education, and outreach. Latinx patients have distinct worldviews, cultural values, and gender roles that affect the way these patients perceive and participate in clinical research efforts. Values such as familism (family values), personalism (personal relationships), and machismo (culturally-prescribed ways for a man to behave) can greatly impact health decisions both in the patient and the caregiver. [Sanchez-Johnsen, Rivera]

Communication is key. Speaking Spanish (or using an interpreter/patient advocate), understanding culture, and providing more frequent points of physician access (e.g., through access to clinical notes) can improve patient understanding, confidence, and compliance. [Velasquez, Sanchez-Johnsen, Zegers]

The State of Latino Cancer Policy and Advocacy

Legislation addressing social inequity is needed. Upstream social inequities are responsible for disparities in cancer risk, incidence, and outcome, indicating the need to engage in policy outside of the healthcare system. Key strategies include advocating for and implementing legislative strategies that counteract racism; participating in active state advocacy coalitions and organizations; educating the public, medical professionals, and elected officials on the economic and health benefits of policy changes; empowering constituents of key legislators to contact their representatives; and voting and supporting voter registration. [Nunez-Smith, Estrada, Saenz]

Medicaid expansion is vital. Medicaid plays a vital role in providing healthcare coverage to lower-income cancer patients and survivors, covering more than two million Americans with a history of cancer. Following the enactment of the Affordable Care Act, expansion states provided all low-income adults access to healthcare through Medicaid. However, countless individuals in non-expansion states such as Texas still lack access to a healthcare coverage option. [Estrada, Long Parma]

Latinx voices must be heard. Many factors lead to the silencing of Latinx voices: lack of awareness of how politics are linked to fighting cancer; practical barriers to advocacy such as time, family responsibilities, and immigration status; cultural and contextual barriers to advocacy such as distrust in the government and a lack of Latino politicians; and an overall need for tailored approaches regarding Latino engagement in advocacy. Education, community engagement, better access to support services, and policy changes can be effective in reversing these trends at the grassroots level. [Saenz]

Latino Cancer Research Methodology

Holistic approaches to cancer research are needed. A holistic approach is important because cancer itself does not occur in a vacuum, but is multifactorial. Social determinants of health cannot be mere variables in detached research, but should rather “scream a story of human condition.” Understanding the history of inequity in cancer research is also important, as this brings about an awareness of historical blind spots in the treatment of minorities in clinical and research science. [Santos, Winn]

More data on Latinx populations is needed, and current data should be more utilized. Differences in Latinx cancer patient presentations, including genomic findings, are proving instrumental in better understanding uniquely Latinx considerations. Existing data sources, such as the Census Bureau for example, already have publicly available data that can be used to inform Latinx research initiatives. [Santos, Ziv, Long Parma]

International collaborations can be effective in advancing cancer research. Maintaining active cross-border conversations can lead to a more global view of public health goals and increase data visibility and data sharing flexibility. Interregional collaboration, the wide availability of trainees, easy-to-use technologies like ZOOM and WhatsApp, social media tools, and shared language and values among Spanish-speaking clinicians make international collaborations across Latin America more accessible than ever. Existing collaborations, such as the Latin American Cancer Research Network (LACRN), have helped to establish biobanks, dynamic databases, and infrastructure for future studies. [Lajous, Costas-Muñiz, Llera]

The Impact of COVID-19 and Cancer Care

Clear messaging is vital to effectively engaging the public. The COVID-19 pandemic revealed weaknesses in the healthcare system and infrastructure, especially when it comes to clear and understandable messaging. As a result, vaccine hesitancy among communities of color is a major problem. A priority in public health must be to regain trust in vaccines, not only for the current pandemic, but for all future public health crises. [Del Rio]

Health initiatives must establish trust at the community level. During the pandemic, excess deaths were much higher in the Latino population compared to White patients. Life expectancy was severely affected as well, with Latina women showing a life expectancy loss of 2 years, and Latino men showing a loss of 3.7 years. Health initiatives that proved successful during this time involved culturally appropriate approaches for increasing trust, the use of community advisory boards, the importance of community engagement, flexibility and the ability to adapt, and partnerships with community health clinics. [Webb Hooper]

Understanding uniquely Latinx presentations is critical to providing optimal clinical care. Latinx patients during the COVID-19 pandemic presented uniquely, especially within niche groups such as pediatric cancer patients. In such populations, having a clear understanding of clinical findings and outcomes proved critical in providing optimal clinical care and in achieving best outcomes. [Flatt]

Avenues of Change Throughout the Cancer Continuum

More diversity is needed in genomic databases. Publicly available genomic databases such as The Cancer Genome Atlas (TCGA) program lack diversity, with only 3% of TCGA being Latinx. Recruitment of Latinx participants in the building of these databases can provide a more complete understanding of Latinx genomics, while helping researchers understand differences within Latinx subgroups. [Ziv, Dutil, Cress, Dovat]

Increased genetic testing for Latinx cancer patients can lead to more individualized care. In cases such as poly-ADP ribose polymerase (PARP) inhibitors for breast cancer treatment, fewer Latinas are eligible due to the paucity of genetic testing in the Latinx population. Furthermore, targeted therapies based on genetic testing can increase treatment efficiency, leading to improved patient quality of life. One such therapy, AXL/STAT3 inhibition, shows great promise against aggressive tumors, not only in inhibiting tumor growth, but in affecting the entire tumor microenvironment. [Lynce, Dovat, Taverna]

Virtual group medical visits (GMVs) can be an effective tool for healthcare in Spanish-speaking Latinx breast cancer patients. Initial results show that the GMV concept, a low-cost healthcare delivery option, increases patient confidence and access to survivorship care for participants. [Velazquez]

Better quality of life can be achieved through support for specific comorbidities such as cardiometabolic comorbidities. When compared to survivors without cardiometabolic comorbidities, those with cardiometabolic comorbidities reported lower overall health-related quality of life, functional wellbeing, emotional wellbeing, social wellbeing, and confidence in patient-provider communication. Intervention techniques are needed to increase cardioprotective behaviors and improve outcomes for Latinx cancer survivors with cardiometabolic comorbidities. [Maras]

Cancer Screening Disparities

Disparities in Latinx cancer screenings must be addressed. Many barriers to cancer screening exist in the Latinx community, including religious beliefs, embarrassment, pain with procedure, worry about work, being a caregiver for another, couples issues, fear of diagnosis, physical or mental impairment, economic issues, transportation, and concern about COVID-19. Lung cancer screening, for example, is one of the most important interventions for decreasing lung cancer mortality. However, the National Lung Screening Trial (NLST), the largest randomized trial in the history of lung cancer screening, was composed of more than 90% White participants. Value-Based Care (VBC) Programs and Delivery System Reform Incentive Payment (DSRIP) programs can be used to improve Latinx screening access and participation. [Rivera, Tortolero-Luna, Setiawan, del Aguila]

Cancer Clinical Trials

Clinical trials must allow for more flexible inclusion criteria. In Phase I clinical trials from 2013 to 2017, only 2.8% of participants were Hispanic/Latino, compared to 84.2% White participants. In order for clinical research to be equitable, trials must allow for more flexible inclusion criteria. [Duma, Dovat, Rodriguez, Trevino, Penedo, Perez, Kuri]

Enrollment goals should reflect the epidemiology of the disease being studied. A diversity plan should begin with an understanding of the epidemiology of the disease, including clinical characteristics, populations with increased case burden, and populations with increased death burden. Enrollment goals should then reflect that epidemiology to represent a diversity of minority groups, reflecting differences in race, ethnicity, age, sex, and more. [Duma, Rodriguez, Fashoyin-Aje, Penedo, Perez, Kuri]

Health provider and researcher biases must be identified and resolved. Provider assumptions prevent many patients from being informed about clinical trials they would otherwise be eligible for. Programs to identify and resolve providers’ biases towards minorities are currently being established to address this problem. Diversity promotion among providers and researchers and patient education programs about clinical research and importance are also underway. [Rodriguez]

Removing economic and social barriers to clinical trial participation is imperative. This begins with advocating for coverage of clinical trial participation for all patients, who must be provided with adequate economic compensation for time, travel, and lost wages. Study design modifications can also play a part, making participation easier through decreased frequency of visits, decreased length of visits, virtual visits, and more. Furthermore, identifying and partnering with community resources can drastically improve participation. [Duma, Rodriguez]

Latino Cancer Survivorship

End-of-life (EoL) care for Latinx patients can be improved through the therapeutic alliance. Providing quality EoL care can be challenging in the Latinx community due to the diversity of the population, immigration status, language proficiency, and culture. One strategy for addressing this challenge is the therapeutic alliance, a construct that encompasses the interrelated and essential dimensions of the patient-physician relationship: trust, respect, understanding, and concern. [Tergas]

It is important to encourage advanced care planning (ACP) to improve EoL care among Latinx patients. Latinx patients are less likely to complete do-not-resuscitate orders, have living wills, or have designated healthcare proxies, partially due to the four cultural values of fatalismo, familismo, machismo, and respeto. However, patient consultation with family is associated with higher involvement in ACP. [Maciejewski]

The Industry Role in Cancer Research Innovation

Government and industry initiatives must have high standards for funding proposals. The Health Equity Committee at Stand Up To Cancer (SU2C), for example, requires an indication of whether the research will address the populations expected to benefit from widespread use of newly developed treatments; patient recruitment and retention plans for including historically underrepresented racial and ethnic populations; and a letter of support from the lead institution’s Chief Diversity Officer, or an equivalent position. [Perez]

Equal access to comprehensive molecular profiling and cancer screening must be ensured for all patients. Medicine is transitioning from a “one-size-fits-all” approach to precision medicine enabled by comprehensive molecular profiling. Cancer screening is also evolving from screening for individual cancers to simultaneous screening for multiple cancers. In order to make these processes possible, equal access to comprehensive molecular profiling and screening must be ensured, as well as diversity of patient cohorts in both biomedical research and clinical trials. [Abril, del Aguila, Sandoval]

Industry must be the driver for more equitable clinical trials. Clinical trial design must do the following: ensure that processes are aligned with external commitments when selecting US sites and investigators; reduce practical obstacles to clinical trial participation; adhere to FDA guidelines; track performance and ensure commitments are maintained; incorporate community groups, partnerships, and external thought partners; and commit to internal and external diversity training. [Kuri, del Aguila, Sandoval]

Further Resources

The National Institute on Minority Health and Health Disparities (NIMHD) at the NIH. Through initiatives such as the Health Disparities Research Institute and the Community Engagement Alliance (CEAL) Against COVID-19 Disparities, the NIMHD is seeking to lead scientific research to improve minority health and reduce health disparities. [Perez-Stable]

The Division of Cancer Control and Population Sciences (DCCPS) at the NCI. The DCCPS seeks to (1) improve data collection and analysis to support subgroup-specific cancer rates and trends through the Survey, Epidemiology, and End Results (SEER) program; (2) support the development and adaptation of culturally appropriate interventions for increasing the uptake of preventive services and adoption of healthy lifestyles; (3) increase Hispanic/Latino enrollment in clinical trials and cohort studies with high-quality, annotated biospecimens; and (4) leverage all DCCPS-supported research infrastructure. [Goddard, Lam]