
Share On Social!
This content is from the “Advancing the Science of Cancer in Latinos: 2024 Conference Proceedings.”
The NCI Community Oncology Research Program: Opportunities to Increase Latino Participation in Clinical Trials
Dr. Brenda Adjei is Associate Director of the Office of Healthcare Delivery and Equity Research at the National Cancer Institute (NCI) Center for Cancer Research.
The NCI Community Oncology Research Program
Dr. Adjei’s presentation began with a discussion of Latino participation in cancer clinical trials. Diversity in clinical trials is critically important because it generates biomedical knowledge relevant to all, builds trust and trustworthiness, and contributes to reductions in health disparities and equitable research participation. Current underrepresentation in clinical research is due to multilevel barriers and requires tailored, multi-component evidence-based strategies.

The presentation involved a description of the National Cancer Institute’s (NCI) Community Oncology Research Program (NCORP), NCORP’s disparities integration activities, an assessment of NCORP’s disparities resources, and a summary of results and future opportunities. NCORP is made up of 46 sites, 32 of which are community sites and 14 of which are minority/underserved community sites. The minority/underserved community sites have at least 30% of their patient population from racial and ethnic underserved populations, or rural residents. Within the Program, 7 research bases develop and coordinate clinical trials and cancer care research, with participation from over 1,000 clinical practices across the country.
Disparities research is an important emphasis and is integrated into every aspect of NCORP’s activities, specifically accrual, education, and mentoring. The Disparities Integration Emphasis Group (DIEG), comprised of NCORP investigators, leverages NCORP’s strengths, expertise, and experience to enact real change in the equity of cancer trial participation. The goal of the DIEG is to increase the portfolio of disparities research and ensure equitable representation of diverse racial/ethnic, rural, and other underrepresented populations in NCI clinical trials. Strategic objectives include a portfolio analysis to examine and evaluate current NCORP research, a research studio to advise on specific disparities-related research questions, and a resource matrix to provide disparities-focused best practices, guidance, documents, expert contacts, and resources from the NCORP network.
The resource matrix aims not only to create a repository of disparities focused resources, expertise, and other assets, but also to understand what resources NCORP sites and research bases have, need, and could contribute to support DIEG goals. The matrix has approached this mandate by collaboratively designing a Request for Resource Information (RRI) survey that focused on site and research base administrators and assesses outreach populations, barriers, and resource needs/availability. The survey was fielded between April and July 2023 and used a thematic analysis and team-based approach to resolve discrepancies.
Request for Resource Information results
Of the 46 NCORP sites, 34 (74%) submitted RRIs, with 25 reporting significant experience with Latino clinical trial outreach. Most of the responses were from site administrators (60%), with participation from research nurses, coordinators, and other research team members as well. Of the reported clinical trials recruitment barriers reported, the most frequently cited was travel and transportation, with 71% of surveys mentioning this barrier. Further reported barriers included low health literacy, cost or financial considerations, patient-reported barriers of time burden and childcare cost, and limited English proficiency.
Some themes emerged in the RRI site-reported strategies to address these barriers. For improving recruitment, the most frequently reported strategy was pre-screening activities, with 21% of sites mentioning this strategy. Community outreach, multilingual engagement, communication strategies, and fostering trust were also reported. In fact, fostering trust was the most frequently reported strategy in addressing retention (23%), with continuous engagement, multilingual engagement, and study-specific materials also mentioned. Community outreach (26%) and education (26%) were the most frequently reported strategies for improving engagement.
The RRI survey involved some limitations. First, the survey was an assessment of site experiences, and was not administered for research purposes. Data from the survey was also elicited via open ended questions with provided examples which may have resulted in biased responses regarding challenges linking barriers and resource gaps/needs with population groups. Finally, data are based on the perspectives of administrators as the primary respondents due to the high turnover within clinical teams and the time burden for clinical research staff.
Multilevel inclusive research approaches are needed to address disparities in Latino cancer clinical trials. In fact, changes are needed in organization-level practices, community-level practices, workforce-level practices, and patient-level practices. A strong institutional commitment is fundamental to enacting change at each of these levels, and at all levels using a holistic approach.
The SWOG Latin America Initiative: Addressing Cancer Disparities Throughout Latin America and the United States
Dr. Paula A. Cabrera-Galeana is Professor in the Breast Cancer Unit at the Instituto Nacional de Cancerología in Mexico City.
Cancer clinical trial disparities in Latin America
Dr. Cabrera-Galeana’s presentation began by discussing the incidence of cancer worldwide, with the highest rates occurring in the US and Europe, although gaps in cancer registration exist in many low- or middle-income countries. Cancer mortality, however, is higher in many low- and middle-income countries, although not in Mexico, where current policy prevents accurate reporting of cancer mortality. In high-income countries, oncology medicines account for a small share of total cancer expenditures, while in lower-income countries, these pharmaceutical expenses account for a larger share, up to 40-60%. Total health spending per capita is over $12,000 in the US, while that number is less than $2,000 in Mexico.

Any government policy that seeks to address these disparities has to be patient-centered. Furthermore, the pharmaceutical industry and providers and payers must be considered and engaged in wide-ranging policy initiatives. Latin American countries are also in need of strong policy advocates to enact change.
Breast cancer mortality is influenced by many factors. Government funding for care is one of the biggest factors, as is incidence. Stage at diagnosis also influences overall survival, with earlier stage diagnosis leading to higher survival. Individuals with breast cancer diagnosed at an early stage in Mexico had a 5-year survival of 89.0%, while those diagnosed at a locally advanced stage had a 5-year survival of 69.6%, and those diagnosed at a metastatic stage had a 5-year survival of 36.9%. Early diagnosis, therefore, through breast cancer screenings, must be a priority. Access to quality treatment and biological features are also factors in overall survival.
Breast cancer occurs 10 years earlier in Latin American populations when compared with non-Hispanic White populations. In fact, although the US National Cancer Center defines the adolescent and young adult (AYA) population as ages 15 to 39, some Latin American countries define the AYA population as under 24, or even younger.
Addressing disparities in cancer outcomes begins with clinical trials. However, although many clinical trials take place in the US, Europe, and China, comparatively few clinical trials are based in Latin America. Clinical trials in Latin America are needed to convince governments to spend money on proven cancer treatments. Latin American trials can also shed light on Latino cancer in the US, where Latino individuals represent the largest minority and are projected to make up almost one quarter of the population by 2050.
SWOG Cancer Research Center
The Southwest Oncology Group (SWOG) is a collaborative group of cancer centers that develops clinical trials asking academic questions. Founded in 1956 by Texas pediatrician Grant Taylor, collaborations with INCan Mexico began in 2010, followed by other Latin American countries. SWOG’s Latin American Initiative (SLAI) strongly believes in education and training, and encourages Latin American members to conduct their own trials while also participating in SWOG studies. In fact, SWOG carefully chooses and promotes trials that have minimal barriers in Latin America.
Dr. Cabrera-Galeana’s employer, the National Cancer Institute (NCI) in Mexico, is a SWOG partner and performs approximately 200,000 medical consultations with approximately 5,500 newly diagnosed patients per year. NCI’s personnel, including 26 staff physicians and 32 fellows, are being trained to participate in SWOG research.
Future goals of the NCI-SWOG collaboration include increasing protocols, increasing awareness of the available potential protocols, increasing awareness of other SWOG opportunities, and increasing participation in SWOG committees. Once NCI participation in SWOG trials is more comprehensive, NCI seeks to increase recruitment and reduce institutional approval times, as well as increase the access to high-cost drugs. In Latin America, thanks to the work that SWOG is involved in, better cancer care has been achieved, better data has been generated, and better trained doctors are serving cancer patients.
Building Capacity for Transformative Cancer Care in Latin America: Integrating Smoking Prevention and Cessation into Oncology Care
Dr. Irene Tamí-Maury is an Assistant Professor in the Department of Epidemiology at The University of Texas Health Science Center at Houston (UTHealth).
Smoking in Latin America
Dr. Tamí-Maury began by discussing the World Health Organization (WHO) Framework Convention on Tobacco Control (FCTC), a major public health agreement fighting against the tobacco epidemic. Unfortunately, the US was one of only a handful of countries that did not participate in the WHO FCTC. The WHO FCTC implemented the MPOWER package, a set of six key tobacco control measures: Monitor tobacco use and prevention policies, Protect people from tobacco smoke, Offer help to quit tobacco use, Warn about the dangers of tobacco, Enforce bans on tobacco advertising and promotion and sponsorship, and Raise taxes on tobacco.

Many countries, however, have insufficient resources to accomplish these goals, especially in the area of helping tobacco users quit. Standardized, evidence-based tobacco cessation programs are limited or lacking. In many Latin American countries, smoking prevalence is higher than in the US as the tobacco industry turns its attention to countries with fewer regulations.
The STOP training program
Dr. Tamí-Maury and colleagues have performed extensive research on tobacco and nicotine addiction in Latin America and have discovered that although many clinicians at cancer centers feel strongly about the importance of implementing smoking cessation interventions, they feel ill equipped when it comes to programs and resources to support patients with their quitting efforts. The efficacy of Dr. Tamí-Maury’s Smoking Cessation Training Program for Oncology Practice (STOP) was evaluated in Colombia and Peru from 2018 to 2023. The STOP Program trained cancer care providers to deliver adequate counseling and pharmacotherapy. The training was a combination of online and in-person sessions, and included 5 modules on smoking prevention and cessation followed by 3 assessments over the following 6 months to determine participants’ retention and other training outcomes such as their knowledge, attitude, self-efficacy, and practices toward smoking, smoking prevention, and cessation services.
At the 1-month assessment, knowledge, attitude, self-efficacy, and practice scores increased from baseline. However, over the next few months, clinicians reported returning frequently to their notes from the training, and needing a tool to quickly access knowledge and support that may have been forgotten since the training ended. In response to this need, a web-based algorithm was provided at the 3-month mark to support the participating clinicians. This intervention yielded increased self-efficacy and practice scores from month 1 to month 3, and from month 3 to month 6. Knowledge scores remained approximately the same throughout.
In order to streamline access to the web-based algorithm and to facilitate access to this tool even when internet access is limited, the Decision-T app was developed, containing all resources of the web-based algorithm in a more accessible format. Conversation prompts were also added to help clinicians initiate discussion about important topics involved in smoking cessation. Upon assessment by HIV care providers, the Decision-T assessment was able to be administered in around 5 minutes, with a System Usability Scale (SUS) score of 87.5, indicating high usability. Similar outcomes were achieved by cancer care providers, primary care providers, and dental care providers who subsequently tested the Decision-T app.
Lessons learned from the STOP Program for smoking prevention and cessation
Integrating smoking prevention and cessation into clinical care in Latin America is possible. However, it is essential to consider unique opportunities and challenges existing in each Latin American country before implementing these programs.. Collaborative efforts with local stakeholders make sustainable solutions for preventing and controlling smoking in Latin America possible. Successful adaptation of interventions to this area of the world is not merely about translating existing programs that have been successful in the US, but includes cultural adaptation as well. Digital health solutions like the Decision-T app can improve access to care, increase efficiency, and reduce costs for smoking prevention and control.
The Latino population is the fastest-growing minority in the US, with projections indicating that 1 in 4 individuals living in the US will be Latino by 2060. More than 20 countries of origin are represented among US-based Latinos, including 62% from Mexico, 10% from Central American countries, 9% from Puerto Rico, and 6% from South America. Approximately 12% of the population of California and Texas speak Spanish at home and report speaking English “less than very well.” Clearly, smoking cessation interventions targeting Spanish speakers, as well as programs that are sensitive to a wide array of Latin American cultures, are vital.
By The Numbers
142
Percent
Expected rise in Latino cancer cases in coming years