Keywords

Overview

To optimize engagement of Latino communities in cancer research, we are working with communities in multiple areas of cancer prevention and control. Our purpose is to increase inclusion in life-saving programs, provide targets for precision medicine that are best suited for Latino populations, and accelerate the translation of scientific cancer discoveries into public health policy. Through research participation of Latinos, we have been able to generate focused and culturally grounded interventions in language for Latinos that resonate with communities and help save lives. As the population of Latinos in the United States continues to grow and is an emergent majority group, we are called to invest in this population’s health, ensure Latinos are represented in research, understand barriers to implementation of public health guidelines, and encourage involvement in clinical trials. This will result in enhancements to precision medicine, providing better treatment options to this heterogeneous group as well as better focused precision public health measures for prevention.

Demographics of the Latino Population

According to the Pew Research Center [1], the Latino population reached 60.6 million in 2019, representing 18% of the US population. Latinos make up a very heterogeneous group and tend to define themselves by nativity or country of origin. Seventy-one percent of Latinos 5 years or older speak English proficiently, even if they speak another language other than English at home. Over 60% of Latinos in the United States are of Mexican origin, followed by those of Puerto Rican origin. Recently, Puerto Rico has been devastated by hurricanes and earthquakes, resulting in large migration to the mainland. Puerto Ricans are US citizens, allowed to vote once in the US mainland. The fastest growth among Latinos is among people from Venezuela, Dominican Republic, Guatemala, and Honduras, who are scattered throughout the United States. Four in five Latinos are US citizens, representing over 32 million Latinos who were eligible to vote in 2020.

Catchment Area

The catchment area for our USC Norris Comprehensive Cancer Center is Los Angeles County, which has a population of 10,105,518. According to the 2020 US Bureau of the Census, that population is 48.7% Latino, 26.1% White alone, 14.0% Asian alone, and 8.1% African American alone. In Los Angeles County, 34.2% are foreign born and 14.2% are people in poverty. Latinos make up 35% of Los Angeles County’s homeless population. Much of our outreach and engagement concentrates in the Eastern side of Los Angeles, which is predominantly Latino. The ethnic breakdown of the East side consists of 91.2% Latino, 5.2% Asian, 2.3% White, 0.7% African American, and 0.6% other. In this region, 5.1% of residents aged 25 and older have a four-year college degree and 14.2% of these residents are high school dropouts. More than two-thirds of the residents in the region, approximately 66.8%, live in shared housing.

Cancer Burden in the Catchment Area

Although cancer rates are declining overall for all populations, cancer disparities still exist among some groups. Cancer is the leading cause of death among Latinos, followed by heart disease. Latino men and women have a lower lifetime probability of developing cancer than non-Hispanic White men and women (This varies however, by cancer type and by foreign born versus the U.S. born. It may in part be due to cultural factors (acculturation, language); social factors (low levels of educational attainment, low socioeconomic status, low literacy and numeracy levels); environmental factors (exposure to pesticide, exposure to chemicals); clinical factors (lack of knowledge in navigating the system of care); psychological factors (fear of diagnosis, fatalism); biological and genetic factors (family history of disease); behavioral factors (sedentary lifestyles, obesity); and a variety of other factors that may impact these disparities [2]. The priority cancers in the catchment area selected by our Comprehensive Cancer Center (not just for Latinos but all population groups) include breast cancer, prostate cancer, lung cancer, colorectal cancer, liver cancer, and acute lymphoblastic leukemia. Our focus is also on associated cancer risk behaviors and factors that include tobacco, energy balance and obesity, diet and physical activity, cervical cancer screening, HPV vaccinations, and environmental pollutants. We work in particular on cervical cancer, as it has one of the highest rates of all cancers among Latinas in Los Angeles and is one of the most treatable and preventable cancers today.

Human Papillomavirus (HPV) Infections and Cervical Cancer

Cervical cancer is highly preventable and treatable, and although deaths from cervical cancer have declined over the past 40 years, Latinas in general have not benefitted equally. HPV is the most common sexually transmitted infection in the United States. It is one of the major causes of infection-related cancers worldwide. Current guidelines for HPV vaccination in the United States call for three vaccine doses for children who receive their first dose after their 15th birthday. If children are vaccinated earlier, before initiating sexual activity, they are protected with only two doses. Unfortunately, Latinos have the lowest rates of initiation and completion of the HPV vaccine series and thus have higher rates of HPV-associated cervical cancer than non-Hispanic Whites.

Latinas have higher incidence and mortality from HPV-related cervical cancer than any other major racial/ethnic group in the United States, at a time when a vaccine against human papillomavirus (HPV) is available and strong screening guidelines are in place around the nation. Incidence rates for cervical cancer among low-income women in Los Angeles County are as high as 14.3 per 100,000 for Latina women compared to 9.3 per 100,000 for Asian/Pacific Islander women, 7.6 per 100,000 among black women, and 7.5 per 100,000 among non-Hispanic white women [3]. Women at the lowest levels of socioeconomic status (SES) have the highest age-adjusted rate of cervical cancer (20 per 100,000) compared with those at the highest levels of SES (7 per 100,000). Identifiable social determinants of health affect women’s participation in research. Yet, there is an obvious need to reduce morbidity and mortality from HPV-related cancers in this population.

Intersectionality

Intersectionality contributes to lack of participation in cancer research among Latinos and is a focal point for understanding the high rates of cervical cancer. A series of factors come together to create a complex situation that combines low socioeconomic status, lack of health insurance, cultural and personal fears, and cancer-specific beliefs, which may deter women from going in for screening in a timely fashion. The excess morbidity and mortality from cervical cancer among Latinas may be also due in part to a significant education gap in this population when compared to other groups. Information often is lacking in language and requires it be delivered in culturally appropriate ways. Research has also shown that Latinas often do not know where to go for low to no-cost screenings or how to obtain the HPV vaccine for them or their children [4]. Some older women who have never had a Pap test may not know how one is done. Multiple situations may come together in the same individual making it more difficult for them to participate in clinical trials, as well as comply with treatment and properly adhere to medical guidelines. To address these issues, we developed specific strategies and programs that facilitate inclusion in order to increase: (1) research participation, (2) compliance with cancer screening guidelines, (3) clinical follow-up to abnormal test results, and (4) the number of Latino girls and boys vaccinated against HPV. This has allowed us to recruit Latinas into our studies and foster sustained participation in longitudinal research efforts.

Service Programs that Enhance Participation in Cancer Research

Our team from the USC Norris Comprehensive Cancer Center’s (USC NCCC) Office of Community Outreach and Engagement (COE) has developed interventions and service programs that are culturally specific, account for literacy and numeracy, engage community residents, and use patient advocates and promotores de salud. These support programs reduce barriers to treatment compliance, as well as to participation in clinical trials. These programs also help to promote research in the community while tending to individual patient needs. Since 2015, our Lippin Navigation project, funded by the Tower Cancer Foundation, has navigated over 600 patients mostly Spanish speaking, and reduced the number of cultural barriers. Our Lazarex Cancer Foundation financial assistance program has allowed us to alleviate the financial toxicity, which may prevent individuals from participating in clinical trials. Our California-Florida Cancer Research, Education and Engagement Health Equity Center (CaRE2), funded by the National Cancer Institute (NCI) has facilitated the development of educational materials to reduce cancer disparities. Our National Outreach Network Community Health Educator (NON CHE), funded by the Center to Reduce Cancer Health Disparities (NCI) program facilitates the offering of workshops at the community level with follow-up on clinical trial participation in general and on HPV trials in particular. Hundreds of patients have been served through these support programs, reducing barriers to participation in cancer research.

Along with these service and intervention programs in place, we have identified strategies that help increase community-based and participatory engagement of Latinos in all aspects of cancer research. These strategies provide a foundation for culturally grounded, patient-centered implementation efforts. From our research and services, we have found that these strategies are critical in making the behavioral, attitudinal, knowledge-based changes necessary to engage the population in health seeking behaviors, such as regular screening and vaccination, as well as participation in cancer clinical trials. Our evidence-based interventions and educational materials to inform communities on cancer in the Latino population have been successful in mobilizing communities to take action for their health, and descriptions can be found in our website (https://uscnorriscancer.usc.edu/community-outreach-engagement/).

Examples of Innovative Cancer Research Engagement

We have successfully utilized strategies for inclusion described below successfully in our Es Tiempo—Jacaranda Initiative—and in our Tamale Lesson award-winning films and related interventions. Several projects and programs have resulted from these cervical cancer and HPV vaccination campaigns, helping to increase screening rates among Latinas, as well as examining barriers and hesitancy to HPV vaccination.

We present here two recent studies that illustrate the situation in the Latino community regarding HPV vaccination and cervical cancer screening. These studies were conducted with inclusion of promotores de salud and lay community workers who assisted us in conceptualization, recruitment, translations, cultural adaptation, and other important aspects of the research, making it more relevant and of greater interest to the community.

Promotores de Salud

An essential element to our work is the engagement of promotores de salud (lay community health workers (CHWs). Our promotores tend to be part of Vision y Compromiso, a network of over 5,000 individuals who support health education efforts and community-based research. The promotores de salud are trusted individuals who come from the communities they work in. They are trained in the research enterprise and help implement research programs and objectives at the community level. In particular, we have worked with promotores de salud in our clinical interventions at Clinicas Monsenor Oscar A. Romero. Other programs also have contributed promotores de salud supporting these efforts at the community level.

Sample Intervention I—Reducing Barriers to Completing HPV Vaccinations and Cervical Cancer Screening Among Latinos

Our Es Tiempo campaign—the Jacaranda Initiative described elsewhere [5]—has been instrumental in engaging Latinas in cervical cancer research via recruitment by community health workers and community intercept surveys conducted by promotores de salud. A 2019 study from the Jacaranda Initiative [6] helped us better understand barriers to completion of the HPV vaccine doses and Pap tests screening among Latinas and their children. Seven hundred and forty five (n=745) women participated in a community sample for Es Tiempo between July and September 2019, another 1,428 women participated in a controlled experiment with Clinicas Monsenor Oscar A. Romero regarding compliance with cervical cancer screening guidelines. Two clinics (one in Boyle Heights and another in Pico Union) participated as intervention vs control in the testing of the Es Tiempo campaign. All participants in the community sample were foreign born, and 89% reported having some form of health insurance; 11% had at least one child between the ages of 9 and 26 years, and the women had a mean age of 49. 

Findings revealed the following regarding HPV vaccinations in the community sample: (1) 83% of women did not understand the purpose of the HPV vaccine; (2) the most common response when asked about barriers to HPV vaccination was “I do not think it’s necessary”; (3) 53% reported they had not heard about the HPV vaccine; and (4) over 50% of the women in the sample reported having received the HPV vaccine. Identified barriers to receiving the HPV vaccine included “not thinking it was necessary” to “not knowing why it was important.” When asked about cervical cancer screening via Pap smears, responses were as follows: (1) 92% percent of the women reported knowing what a Pap smear exam detected. An overwhelming majority (94%) reported getting tested was “very important”; (2) 81% of the children of women in the sample had been vaccinated; (3) 62% of the children had received the full vaccination schedule according to guidelines; and (4) almost all (96%) women in the sample reported having received a Pap smear exam in the last 3 years. In the clinic sample, post intervention, when assessed about Pap tests, more women in the intervention clinic (Boyle Heights) (65%) were in compliance with screening guidelines, vs 34% in the control clinic (Pico Union). This was a significant difference (Chi Square <.001) of 13 percentage points. This study concluded that while Pap smear knowledge and screening were relatively high, HPV vaccine knowledge was low and attitudes differed about receiving information regarding the HPV vaccine. This study pointed to a need to continue our education for HPV vaccinations, particularly among foreign-born Latinas. Culturally and language specific materials displayed in billboards and other outdoor media along with educational materials sent to the home, made a difference in screening for Latinas in the Boyle Heights area of Los Angeles. 

Sample Intervention II—Effectiveness of Storytelling in Educating and Changing Attitudes About the HPV Vaccine

Our award-winning Tamale Lesson cervical cancer intervention yielded tremendous results among English-speaking Latinas. However, we did not test its impact among mostly monolingual Spanish-speaking women. To do so, the films Tamale Lesson and It’s Time [7] were translated into Spanish and culturally adapted by a team of promotores de salud from Vision y Compromiso (VyC) with funding from the Clinical Translation Science Institute (CTSI). We thus tested the effectiveness of two films in educating and changing attitudes about the uptake of the HPV vaccine among Spanish-speaking, Mexican American women [8]. We utilized narrative (storytelling) to convey crucial health information on cervical cancer and HPV vaccination. The sample consisted of 300 women who were randomly assigned to either the storytelling narrative (Tamale Lesson) or a non-narrative (It’s Time) created by our team of investigators and described elsewhere [7]. All information was delivered in Spanish and accounted for literacy and numeracy levels. Data were collected by telephone. We conducted pre- and posttests using random digit dialing. Following the same methodology as our studies with English-speaking Latinas, posttests were conducted within 2 weeks of having viewed either film.

Findings for Spanish-speaking women showed that at baseline, women assigned to the narrative film (Tamale Lesson) were less likely to have heard of the HPV than women assigned to the non-narrative film (It’s Time) (54% vs. 78%, P = 0.008). They were, however, more likely to know that the HPV vaccine was for both males and females (66.1% vs. 48.9%, P = 0.008). A total of 109 Spanish-speaking women completed all waves of the surveys. They were between the ages of 25 and 45 years and had incomes less than $20,000 per household. Over half of the women had less than a high school education (59%). Most were married or living with a partner (91%); 77% had a daughter and 24% had a son. The majority (84%) had some form of health-care coverage. Although the average number of years in the United States was 25, only 25% reported speaking English very well or well. Results indicated that the average increase in knowledge was 41% for storytelling versus 52% for non-narrative with more facts. From pretest to posttest, there was also an increase in supportive attitudes, such as reporting less embarrassment, increased perception of HPV importance, and vaccine safety. While these findings revealed that both films produced an increase in knowledge and an increase in supportive attitudes, they also suggested a lack of awareness and knowledge of HPV and the HPV vaccine among Spanish-speaking, Mexican-born women. This signaled to us the importance of evaluating the effectiveness of health education delivery methods among lower income and less acculturated Hispanic women, in order to achieve needed changes in health behaviors.

Sample Intervention III—Engaging Latinos in Virtual Reality (VR) Experiences to Increase HPV Vaccination Rates and Enhance End-of-Life Experiences for Immigrant Cancer Patients

A newer area of research we are beginning to explore in cancer care is the use of virtual reality to examine HPV vaccine hesitancy among Latino parents and their children, and the potential role VR technologies can play in end-of-life enhancements for patients dying from cancer. The LAC+USC Medical Center, the USC Institute of Creative Technology, and the USC SensoriMotor Assessment and Rehabilitation Training in the Virtual Reality Center develop virtual technologies with the goal of improving health care. We are currently working on the development of studies that pattern themselves after the Family Reunions Project, which helps individuals return home or to familiar places through the use of virtual reality. The goal is to better understand potential use of these new and emerging technologies to improve HPV uptake among youth, and of enhancing the quality of life of hospice patients and their families. The use of technologies, including virtual reality experiences, allows the cancer patient the ability to return back home.

Data from the Pew Research Center [9] reveal that this area of research among Latinos is promising. Already, about three in ten US adults say they are almost constantly online. Over 80% of adults go online several times a day. Younger adults in particular are almost constantly connected (46%). Individuals 65 years of age or older are online less; only 7% go online almost constantly and 35% go online multiple times a day. For Latinos in particular, over 72% say they own a desktop or a laptop computer. Prior to the COVID-19 pandemic, 78% of Latinos stated they went online at least occasionally compared to 87% among whites. Given new shut down restrictions in schools with the Coronavirus Pandemic, these numbers are likely to have risen tremendously and may be at an all-time high among Latinos. Although previously in 2015, wide gaps in Internet use existed among Latinos when compared to other Americans. The pandemic has created a real shift in usage, bringing in more who are Spanish dominant into the use of new and emerging technologies. Issues of Internet connectivity, lack of equipment, proper WiFi access, and other factors are still recognized barriers for use of these technologies. However, in spite of these barriers, we still anticipate much higher usage of these technologies, especially among younger populations; so this technology would be useful in the development of interventions for the HPV vaccine hesitancy experienced by youth and young adults.

The COVID-19 pandemic has brought the need to stay connected, resulting in an increased use of technology, so people of all ages can still communicate with friends and family members, work, and school. There is thus promise for expanding the use of new and emerging technologies among older populations of Latinos, if the experiences are tailored to their unique cultural needs, provided in their preferred language, personalized, and utilized at critical stages in their lives. Examples of successful virtual reality experiences in other areas beyond cancer include the Family Reunions Project aimed at virtual reunification of immigrant families, LAC+USC County Hospital, USC Institute for Creative Technology, Quality of Life of Cancer Patients, and Rendever—a program where seniors are able to check off their bucket list. Engaging Latinos via virtual reality may enhance their interest in participating in clinical and prevention trials that may save lives, especially as related to HPV reductions via vaccinations and increased cervical cancer screening.

Common Strategies for Inclusion of Latinos in Cancer Research

Principles for Optimizing Participation

In order to engage Latinos in cancer research, specifically in cervical cancer and HPV trials and research, we have utilized and adopted a variety of principles of engagement generated by Israel and colleagues [10] for inclusion in community-based participatory research. This includes participation from the beginning stages of the research enterprise all the way to the dissemination of research findings. We engage participants in a bidirectional manner, so we not only provide scientific information to the community, but we also appreciate community knowledge when training academic researchers in community issues and how to reduce barriers to participation. Hence, the community is able to participate in reciprocal learning throughout the research process. This also facilitates engagement of communities in research decision-making. When we are able to obtain community consent for conducting research, communities are more open to engaging in the research. Furthermore, we share power and purpose empowering Latino communities at the grass roots level to take action for their own health. Community members are able to influence the research process, as well as foster new research by directly expressing their ideas to investigators via town hall meetings, online communities, community advisory boards, and as patient advocates in the research. We work on common visions, goals, values, and priorities. We regularly remunerate community partners, promotores de salud, and cultural experts with whom we engage in the research, and we strategize jointly with our community members via focus groups, meetings, and engagement activities in multifaceted ways.

In addition to the established principles described, our strategies for increasing participation in cancer research among Latinos focuses on the key areas of information delivery (knowledge transfer), consultation with stakeholders and partners, and collaboration with community key opinion leaders. The overarching goal is to optimize engagement of Latinos in research to find more tailored therapeutics and accelerate information transfer to the community. Our efforts aim to optimize engagement and communication in a bidirectional manner in order to impact attitudes, beliefs, and behaviors that may place Latinos at risk for cancer and to engage in research topics that make sense in the community.

Information Delivery (Knowledge Transfer)

In participatory engagement, we inform our community partners of the various aspects of a study and discuss culturally grounded and specific areas of the content needed to increase Latino engagement in particular communities. This goes beyond presenting the nature of the problem (e.g., high rates of cervical cancer) to fostering a discussion about needs and priorities in these areas within the community. These discussions are very intentional with the goal of accelerating knowledge transfer to communities more quickly while focusing on their expressed needs. When informing Latinos of specific areas of cancer research or providing cancer-specific message regarding the latest scientific findings, we have found a strategy to be most effective.

Key strategies include designing messages according to different levels of acculturation, language, and channels. In order to engage the Latino community, various channels must be utilized depending on specific audiences: channels include social media, Twitter, Facebook, Instagram, and Spanish language TV and radio. Limiting to three messages and using those messages to appeal to Latino cultural values has been most effective. Other channels that can be used to engage Latinos include online communities created specifically for program purposes. These include websites, webinars, and list serves. Written methods that have been traditionally utilized for outreach may include, newsletters, flyers, pamphlets, press releases, reports, brochures, direct mailers, and magazines. Interpersonal communication is another effective channel that works in the Latino community. In addition to the traditional formats of knowledge transfer, such as workshops, conferences, topic meetings, association and coalition meetings, and neighborhood council meetings, these strategies have worked well in our research.

Engage Stakeholders in Responsive Communication and Consultation Efforts

While trying to pursue engagement in cancer research and clinical trials, attentive listening is essential to empower Latino community stakeholders in the research. To facilitate stakeholder engagement, we produce and provide translated material and interpretation services in Spanish and Mandarin (for a large Asian population in Los Angeles) and use lay language. Other channels of stakeholder engagement in responsive communication include the development of community advisory boards, patient advocates, and citizen scientists.

Collaborate with Partner Organizations

We can enhance Latino engagement in research by casting a wide net of partners. To capitalize on this aspect, we formed an HPV local Los Angeles Coalition in 2016 that previously did not exist. We were able to develop this coalition with a grant from the National Cancer Institute as a Supplement to our Cancer Center on HPV. This coalition now includes over 30 community providers among cancer centers, hospitals, immunization coalitions, and health corporations, and it is housed at the Los Angeles Department of Public Health. We work on projects together, including expanding research capacity of its various members, helping each other in recruitment, sharing ideas for retention, and engaging in research as appropriate. We meet on a quarterly basis and are able to participate and have a voice in discussions about the current situation in Los Angeles related to HPV and other immunization efforts. Coalition development and participation can also be expanded to include multiple stakeholders, including faith-based organizations, cancer support groups, local clinics, schools, pharmacies, retailers, local neighborhood councils, parent groups, and senior centers. Critical audiences for inclusion, especially recognizing the need for physicians to make recommendations about the vaccine, are collaborations with community physicians, health professionals, associations, alliances, other coalitions, and other groups that would be interested in the research.

Conclusions

We have presented here sample support services programs that enhance participation by reducing barriers toward inclusion; presented research examples that utilize common strategies that have been proven to be effective in engaging Latinos in cancer research, particularly cervical cancer and other HPV-related research. One project on virtual reality seems promising. Our overarching goal for engagement has been to optimize Latino participation, so more tailored therapeutics can be found and more effective public health educational interventions can be developed. These strategies for engagement also maximize the potential for accelerating the transfer of research findings into the community. It takes an average of 8 years for research to make it into the community. Given the importance of life-threatening diseases such as cancer, that is too long for discoveries to reach society. Furthermore, lack of engagement of Latinos and other population groups in clinical trials hinders the ability to develop therapeutics with targeted precision that can benefit this population. Yet, barriers still exist and mistrust is frequently found in our communities, especially from efforts that may entail providing vital information or biological samples, for which there is fear of how these might be utilized to identify individuals or that may have a potential to do harm. Through the engagement of promotores de salud, we have bridged some of these trust factors, securing and retaining participants. However, to retain them, principles of participatory research need to be implemented where participant communities feel they are an essential and important part of the research. Mechanisms identified have been utilized successfully in the implementation of our research signature initiatives (Tamale Lesson and Es Tiempo campaigns) and serve as the backdrop to enhance participation in cancer research and provide opportunities for saving lives.