The country's population now includes 33.5 million foreign-born individuals, approximately 11.7% of the total population, and more than 10 million more than were reported in 1990.1 Additionally, approximately one-fourth of all immigrants to the United States are undocumented,2 and therefore may not be captured by the Census. More than one-third of New York City's eight million residents are foreign-born.3 From 2000–2002 alone, more than 250,000 foreign-born individuals immigrated to New York City.4
Documented Cancer Disparities Experienced by U.S. Immigrants
Although expanding over the years, data on cancer incidence, mortality, and disparities among immigrants in the United States remain limited.5–9 Cancer data are frequently not gathered by immigrant variables (e.g., length of stay, language(s) spoken, country of origin). Country-of-birth data are often incomplete in existing cancer registries.10, 11 Ethnic and racial minorities are underrepresented in NCI-sponsored cancer clinical trials.12 Immigrants with limited English proficiency risk being excluded from cancer research due to the lack of translated informed consent documents and trained interpreter resources.13, 14
However, available data indicate that cancer disparities are rife in immigrant minorities. Despite an observed decrease in overall cancer death rates in the United States, immigrant minorities continue to experience disproportionately higher cancer incidence and mortality rates for many cancers.15, 16 Later stage at diagnosis is partially responsible for higher mortality rates.17, 18 For example, diagnosis of invasive cancer due to lack of screening and follow-up is one cause of the elevated age-adjusted mortality rate from cervical cancer among minority immigrant women.19 Disaggregated data are key to fully understanding immigrants' cancer needs. For example, among Asians, cancer incidence and survivorship vary among specific ethnicities.16
Cancer Care and Research Barriers Faced by Immigrant Minority Populations
Minorities face considerable barriers in accessing appropriate cancer care and information,20, 21 including systems barriers, financial barriers, physical/geographic barriers, barriers related to a lack of information/education, and barriers related to cultural differences and biases/discrimination in care.21 Immigrants experience these barriers even more deeply, with additional barriers related to immigration status and limited English proficiency.
Immigration Status-Related Barriers
Immigration status is an important determinant of disparities in health coverage, access, and quality. Nationwide, ethnic minorities have disproportionately high rates of being uninsured. Approximately 38% of Latinos, 24% of African-Americans, and 22% of Asian Americans/Pacific Islanders are uninsured, compared with 14% of non-Latino whites.22 Within these groups, low-income immigrants are disproportionately uninsured.23, 24
Over 21 million U.S. residents are not able to speak English very well.25, 26 In New York City, nearly 25% of the population do not speak English fluently.27 Effective communication between a physician and patient is among the most important elements in establishing a correct diagnosis and proper treatment plan, and in facilitating satisfaction and adherence.28–30 In language-discordant medical interviews, physicians may be unable to assess and evaluate symptoms correctly, which may lead to misdiagnoses.31 Physicians may order unnecessary diagnostic tests or, alternatively, be less likely to order needed tests.32, 33 Patients are less likely to take medication as directed, follow instructions, and keep medical appointments.28, 34 Early detection services, particularly cancer screening services, are less likely to be utilized by individuals with limited English proficiency.35
Cultural considerations, which often coexist with language barriers, play an important role in their own right. Cancer literature is rich with studies describing the cultural considerations in cancer screening, treatment, and participation in clinical trials.36–43 Cultural beliefs have been hypothesized to be a powerful barrier for breast cancer screening in minority immigrant women.44, 45
MATERIALS AND METHODS
Cancer Awareness Network for Immigrant Minority Populations
In 2000, The Center for Immigrant Health (CIH), NYU School of Medicine, received funding from the National Cancer Institute's Center to Reduce Cancer Health Disparities to launch the Cancer Awareness Network for Immigrant Minority Populations (CANIMP) as one of 18 Special Populations Networks (SPNs).
CANIMP's Target Communities
Through a multifaceted needs assessment process (community and provider roundtables, community focus groups, key informant interviews, pilot studies, local and state cancer registry surveillance, a comprehensive review of the literature from the U.S. and abroad, and numerous queries to the NCI's Cancer Information Service), cancer disparities were identified and target populations selected. CANIMP's target populations include large (or growing) immigrant communities with cancer disparities, including cancers affecting large segments of the population, as well as those that are markedly more common in immigrants. For example, recent Latino and Asian immigrants have a high incidence of gastric cancer, partly due to the high prevalence of Helicobacter pylori infection in their countries of origin.46, 47 High rates of liver cancer reflect chronic hepatitis B infection among recent Asian immigrants.48 South Asian immigrants are at much greater risk for oral cancer, primarily because of areca nut consumption and tobacco chewing and smoking.49–52
Between 2000 and 2005, CANIMP convened diverse community leaders, clinical service providers, and researchers to formulate targeted interventions to reduce disparities. As key stakeholders throughout the continuum of cancer control and care, representatives from all of these spheres have been essential in CANIMP's success.
A community-based participatory model has been key. CANIMP's definition of ‘community’ can be as broad as ‘the immigrant population in the United States,’ or as narrow as ‘the Creole-speaking Haitian immigrant population in East Flatbush, Brooklyn,’ depending on the nature of the disparity and the attendant barrier(s). To formalize a partnership with community members, fiscal relationships with seven community-based organizations (CBOs) have been developed. Included in the terms of these contracts (memoranda of understanding, MOU) are: joint decision-making regarding need, planning, outreach modalities, points of community contact, and methods of awareness building; collaborative research formulation; and dissemination and publication of research findings. MOUs have been revised to accommodate organizational changes and priorities. Over the course of CANIMP's 5 years, the following organizations have served as fiscal partners: Asian American Federation of New York, Caribbean Women's Health Association, Chinese-American Planning Council, Diversified Community Health Services, Flatbush Haitian Center, Korean Community Services of Metropolitan New York, New Immigrant Community Empowerment, Charles B. Wang Community Health Center, New York Taxi Workers' Alliance, and Project Reach Youth. In addition, CANIMP's Chinese, Korean, Haitian, Latina, and South Asian Health Educators have mirrored its target communities.
Immigrant-serving organizations such as the Literacy Assistance Center provided technical assistance in developing low-literacy, linguistically and culturally competent educational materials. Likewise, the New York Immigration Coalition provided access to key local and state policymakers and organizations.
CANIMP worked closely with the American Cancer Society to access cancer literature and available screening services. Their Chinese Unit was a key partner in outreach and education targeting Chinese immigrants, and in developing survivor support groups.
Local and National Government
CANIMP's work has been informed by NCI guidelines and direction. The Network has also worked closely with the New York City Department of Health and Mental Hygiene and the New York State Cancer Registry to obtain and inform data about its target communities and city- and statewide cancer patterns. Based on the need to expand data surveillance efforts, CANIMP was asked to participate in the development and implementation of the New York State Comprehensive Cancer Control Plan.
Researchers and Community Practitioners
Established in partnership with the NYU Cancer Institute, CANIMP is part of an academic medical research institution with a large public hospital (Bellevue Hospital Center). With this strategic foundation, CANIMP has been able to access NYU cancer clinicians and researchers to provide the necessary theoretical framework and practical training for CANIMP researchers. In recognition of the profound role of community practitioners, CANIMP formulated relationships with immigrant medical associations, such as the Chinese American Medical Society and the Association of Haitian Physicians Abroad, and community health providers to educate them on their communities' cancer health disparities. This was done through a series of four interactive Roundtables, presentations at physician society meetings, and social marketing activities which presented data from the Cancer Registry, the literature, and the CANIMP formative research.
Clinical Service Providers
CANIMP worked with clinical service providers to identify and catalogue available and accessible (geographically, linguistically, and financially) services for its target communities. Service providers across New York City were surveyed on cancer screening and treatment services, language capabilities, and fee structures. These data were then entered into a searchable on-line database to enable easy access to service information for multilingual communities.
CANIMP developed linkages with programs such as the New York City Viral Hepatitis Network, Community Smoking Project, American Cancer Society Healthy Living/Women Partnerships, the New York City Health and Hospitals Corporation, and New York City's Citywide Colon Cancer Control Coalition. In partnership with numerous cancer treatment facilities, CANIMP examined issues in immigrant cancer treatment and care through its pilot research initiatives, including its community provider knowledge and practices studies. The Network also worked with the ACS Chinese Unit and LatinaSHARE to develop culturally and linguistically appropriate support services for immigrants with cancer.
Organization of the Network: CANIMP's Committees
Upon inception, CANIMP developed a Steering Committee, which included members of the key stakeholder groups identified above. Within the Steering Committee, four intersecting subcommittee workgroups were formed: (1) outreach and education; (2) materials development; (3) research and training; and (4) technology.
CANIMP's extensive network has addressed immigrant barriers throughout the continuum of cancer care and research. The SPN highlighted the interconnected roles of linguistic, cultural, economic, and legal barriers experienced by immigrant minorities. Through a broad-based community-centered approach, CANIMP developed culturally and linguistically appropriate interventions, models, training, and research initiatives providing an important body of knowledge and a paradigm approach to address cancer disparities.
Outreach and Education
CANIMP's breast, cervical, colorectal, and prostate cancer curricula have been used in more than 150 targeted community-based workshops in which more than 2500 community members have been educated. Figure 1 provides representative data from Year 5, indicating effective targeted community reach. While the general framework for the education programs was similar, each program was culturally and linguistically tailored to meet the specific needs of the communities served. The success of these programs was evaluated by documenting the demographic reach of the programs, coupled with assessment of appointment-making and follow-up rates for consenting participants. CANIMP's Cancer Resource Catalogue currently includes more than 200 listed services and has been used extensively by CANIMP staff, the Breast Health Partnerships, CBO partners, and community providers.
After an 18-month development process, the New York State Comprehensive Cancer Control Plan (NYSCCCP), targeting the barriers underlying cancer disparities, was published in 2003. CANIMP was active in the Health Promotion and Disease Prevention and Research Goal Development Teams, and in the Leadership Summit. The NYSCCCP offers a statewide vision through 2010 to advance, accelerate, and focus on cancer control efforts. CANIMP is also actively participating in implementing four public policy goals (Primary Prevention Policy; Health Communication and Literacy; Diagnosis and Treatment; and Disparity Reduction) under the NYSCCCP to ensure that immigrants' specific cancer control needs are addressed.
Through the ‘transcreation’ methodology, CANIMP has developed numerous culturally and linguistically appropriate print, video, and online cancer resources, including a Spanish-language video targeting Latinas at high risk for breast cancer; two 15-min community prostate cancer education videos targeting Caribbean men and Haitians; three low-literacy Haitian Creole brochures on breast, cervical, and prostate cancer screening; cancer clinical trials education materials, including low-literacy versions, for immigrant minority communities in Chinese, English, Haitian Creole, and Spanish; oral cancer and paan/gutka brochures in English, Urdu, Hindi, and Bengali; a video for providers on the need for interpreters in the cancer screening encounter; and an online education module for providers.
Research and Training
The Research and Training Subcommittee has facilitated the mentored development of nine pilot projects (Table 1). Additionally, larger research projects have been developed on barriers to cancer care for immigrants and interventions to overcome those barriers.
Table 1. Nine CANIMP Pilot Projects
Culturally appropriate cancer information sites for immigrants: A proposal for development of a prototype (CARES)
Identify the determinants of effective, culturally sensitive cancer information websites for English-speaking Caribbean immigrant women; explore strategies to improve the penetration and effectiveness of web-based cancer communication.
The Internet can be an effective vehicle for underserved immigrant populations, provided the online resources and their access are culturally and linguistically tailored.53
An evaluation and continuation of a gastric cancer screening effort in Chinese immigrants in New York City (REPEAT: repeat endoscopy in patients from East Asia trial)
Examine the feasibility of a large-scale population-based study on gastric cancer prevention in Chinese immigrant populations, building upon a community center-based gastric cancer screening trial with over 120 Chinese immigrants.
Although EGD with biopsy is a recommended early intervention in dyspeptic patients at higher risk for gastric cancer, few patients accept repeat EGD, especially if asymptomatic. Patients are more likely to adhere to treatment recommendations following an initial screening test if they have a regular physician or regular source of health care.54–56
Determinants which influence the participation of immigrant Chinese in cancer screening clinical trials
Determine patient and physician barriers to cancer screening and clinical trials, and develop/evaluate the effectiveness of a community-based intervention; improve Chinese immigrant recruitment into clinical trials through a Clinical Trails Enrollment Facilitation Program (CTEFP).
Doctors are key determinants of patient acceptance of screening and clinical trials enrollment, yet doctors often do not recommend the same.57
Smokeless tobacco, oral pathology prevention and awareness network (STOP PAAN)
Explore gutka and paan (smokeless tobacco and areca nut) consumption in South Asian immigrants in New York; social, economic, and cultural context of gutka and paan use; knowledge about its health consequences; and attitudes towards, and barriers to, use of dental services.
There is variation between different South Asian communities, with certain groups' exposure risk continuing several years after migration. More than 45% of study participants report current regular use of gutka, and nearly 14% report past regular gutka use. Nearly 45% of the sample report past paan use.58–62
Determinants of physician referrals of immigrants in cancer screening and clinical trials
Examine physician barriers to referring Chinese and Haitian immigrants for cancer screening and treatment, and clinical trials.
Providers' willingness and readiness to modify practice behaviors and the capacity for change to occur are being evaluated.
Influence of male partners in cervical and breast cancer screening in Mexican females
Examine how Mexican immigrant men's knowledge and attitudes towards breast and cervical cancer screening impact their female partners' cancer screening behaviors.
Breast cancer knowledge was far greater among participants than was cervical cancer knowledge. A couple-centered intervention may help improve knowledge, understanding, and behaviors for cervical cancer and breast cancer prevention in Mexican immigrant communities.63
Screening for colorectal cancer and prevention in ethnic minorities: the Haitian immigrant community (SCCOPEM)
Explore Haitian knowledge about colorectal cancer, including its risk factors and prevention; awareness of colorectal screening recommendations; and attitudes towards, and willingness to use, various colorectal cancer screening modalities.
Haitian focus group participants had little knowledge about colorectal cancer and its risk factors, compared with other cancers. Many did not know where their colon is located and have never been screened for colorectal cancer. Haitians cited dietary modifications and bowel hygiene as the best ways to prevent colorectal cancer.
Colorectal cancer pilot study in Chinese Americans
Elucidate the factors that affect utilization of the continuum of colorectal cancer screening and treatment services in the Chinese American community.
Among Chinese focus group participants, awareness of screening guidelines and modalities was low. Many did not have prior knowledge of, or experience with, colorectal cancer screening methods, specifically the fecal occult blood test. Feelings of overall good health and absence of symptoms lead to lower adherence to physician recommendations for colorectal cancer screening.
Language barriers to colonoscopy screening (CLEAN)
Examine the impact of trained interpreters on the detection of colorectal adenomas and malignant neoplasms in LEP patients, and on patients' understanding of diagnosis.
Overcoming the language barrier through trained interpreters will improve cancer services, physician-patient communication, adherence, and follow-up among patients with limited English proficiency, ultimately resulting in improved early cancer detection. A large gap exists between need and practice.
Junior Minority Scientist Mentorship Program
To date, 25 junior minority researchers have been mentored through the junior minority scientist mentorship program (JMSMP). Many of these researchers have led or participated in one of CANIMP's nine NCI-funded pilot projects. The scope of the pilots reflects diverse immigrant communities (Caribbean, Chinese, Haitian, Latino, and South Asian) and various cancer sites (breast, cervical, colorectal, gastric, lung, and oral).
Minority Internship Program
CANIMP has mentored over 60 minority college and graduate students, mostly from CANIMP's target immigrant communities. Minority Internship Program (MIP) interns have contributed meaningfully to the Cancer Resource Catalogue service mapping; cancer education materials review and development; community health education; and primary and secondary data collection and analyses. MIP interns receive both didactic education, through weekly immigrant cancer disparities seminars, and mentored learning experiences facilitated by CANIMP researchers and staff.
Community-Oriented Research Education
The 10-week community-oriented research education (CORE) curriculum includes the following sessions: reading research, ethics and research, study design, databases, conducting research, funding research, research pitfalls, and disseminating research results. A total of 30 individuals representing eight CBOs and ACS have participated in these sessions. Following CORE curriculum completion, CANIMP organized an interactive community-based participatory research training session. CBOs were then paired with NYU's Masters in Public Health Community Needs Assessment course students, who together conducted primary and secondary data analyses of the CBOs' target communities and cancer disparities. Based on these analyses, each CBO partner is developing a mentored cancer-specific disparities reduction research project.
The Caribbean Cancer Awareness Resources Education and Services (CARES) pilot developed a prototypical breast health website for Caribbean American women. CANIMP developed the paradigm Virtual Community for Immigrants with Cancer (VCIC), which has served over 72 breast cancer survivors to date, in various locations across the country. While the quantitative analysis is in progress (psychosocial impact of support groups using various psychometric scales), qualitative data reveal that VCIC fills a tremendous need in the Spanish-speaking community.64 Plans are under way to expand VCIC to Haitian women with breast cancer and Latinos with cancers at other sites.
The United States' population is becoming increasingly more diverse with respect to ethnicity, country-of-origin, language, culture, and lifestyle. CANIMP was founded upon a comprehensive understanding of the significant barriers immigrants face when accessing the health care system, and upon the knowledge that for such programs to effectively address the communities' needs, a community-based participatory ap proach must be employed. The community, the health care and research systems, and the provider network must all be engaged to facilitate a comprehensive approach to reduce cancer disparities among immigrants.
CANIMP's research has revealed the noteworthy role of language, cultural, and immigration-related barriers in cancer care, and its programs have been tailored to accommodate such factors. Culture-specific beliefs, conceptions, and utilization patterns of prevention and health have been incorporated into the multilingual approach. Education and research (e.g., consents and study instruments) materials have been ‘transcreated.’ During this process, CANIMP staff often encountered cancer services materials (brochures, posters, etc.) that had been translated literally and were not culturally appropriate. With increased access to computerized translation programs, the danger that materials will be translated word-for-word is increased. CANIMP's transcreation approach provides an important model for materials development.
Strategies exist to address language barriers in the community, research environment, and service arena.65 Many health care facilities and academic medical institutions lack adequately trained translation and interpreter services. Bilingual outreach workers and staff must be employed. When bilingual staff are unavailable, trained interpreters need to be utilized. Because immigration status-related concerns are often at the forefront of immigrants' reluctance to access the health care system, this issue has been addressed explicitly at all CANIMP workshops, research activities and in educational materials. Confidentiality of all information, including immigrant status, is paramount. Low rates of health insurance coverage and high fees for services are considerable deterrents to accessing screening and care. Therefore, referrals have been made to providers who offer services at little or no cost; do not have citizenship/residency requirements; and maintain strict confidentially requirements. These services were also cataloged by their language capacity to minimize the language barrier.
Much progress needs to be made in the area of cancer research for immigrants. There is a dearth of disaggregated cancer data on immigrants. Immigrants are often grouped with larger ‘mainstream’ populations and therefore rendered invisible. For example, data on Haitians and other Afro-Caribbean populations is often included in the African American subgroup. The need for more data on medically underserved and underrepresented populations must be highlighted. Community members need to be partners, and mentored in the process of, research formulation, data collection, and analysis. Local, state, and national data surveillance must include data on those segments of our population that are often ignored. In response to this, CANIMP developed partnerships with cancer registries to promote the use and development of more sensitive data collection instruments/methodologies.
CANIMP researchers have laid the groundwork for cancer disparities research with the country's immigrant minorities. CANIMP has significantly addressed the role of language concordance not just in materials development and understanding but also in research participation. CANIMP also advanced the field of special populations' research through its nine NCI-funded pilot projects. Consistent with CANIMP's focus on the barriers underlying cancer health disparities, each pilot has produced key findings useful for future education and research efforts. For example, the Smokeless Tobacco Oral Pathology Prevention and Awareness Network study was the first examination of paan and gutka (popular smokeless tobacco products in the South Asian community) use in the United States. Several important themes and disconcerting preliminary results have emerged from the pilot. The communities have migrated with paan and gutka, putting themselves at significant risk for oral cancer.58 These data provide previously unavailable paan and gutka use and belief data, and will be essential to plan larger, definitive, oral cancer risk studies on paan and gutka use in the U.S. In another pilot, the Caribbean Cancer Awareness Resources Education and Services, results revealed that immigrant women in their mid thirties are actively online, including those who are in a low socioeconomic bracket. However, despite bridging the digital divide in physical access to the Internet, cultural access barriers to the Internet exist.66 The need for community-specific culturally-appropriate cancer content is enormous.
CANIMP targeted a number of diverse immigrant communities, including the Caribbean, Haitian, Chinese, Korean, Spanish-speaking, Bangladeshi, Indian, and Pakistani communities, and successfully developed and maintained trust within each community. This was facilitated by forming fiscal relationships with community-specific CBOs, sharing resources, and fully incorporating the community into all activities. Bilingual staff and interns were hired from the community to conduct all health education, research and outreach activities. The role of community providers has been vital. Often, they are the only source of cancer information and screening services reaching immigrant minorities and, as such, are key partners in the mission to eliminate cancer disparities.
The U.S. population is becoming increasingly diverse. The dearth of disaggregated cancer data is hampering efforts to address cancer disparities in immigrant minorities. Surveillance data must include segments of the population that are often ignored. Community members need to be true partners and need to be mentored in the process of research formulation, data collection, and analysis. Researchers and institutional review boards need to develop strategies to include community members with limited English proficiency in studies, while ensuring their full understanding of the risks and benefits of participation. Cancer clinical trials must fund the provision of translation and interpretation services, so that the subject population is truly reflective of the potential patient population.
CANIMP was founded upon the understanding that a community-based participatory approach must be employed to overcome the barriers that prevent the diffusion of cancer screening and treatment technologies into immigrant communities. The community, health care and research systems, and provider networks must all be engaged in a close partnership to facilitate a comprehensive approach to cancer disparities reduction. This approach includes setting priorities; developing educational materials, clinical services linkages, and research projects; and interpreting and disseminating results and services. Each sector of the partnership must be ever vigilant for gaps.
We acknowledge the following contributors: Heike Thiel de Bocanegra, PhD; Angelica Herrera, MPH; Lauren Vose, Ana Grigera; Greta Elysee; Sapna Pandya, MPH; Rachel Andre; Jiwon Lee; Eunah Chung, MPH; Fritz Francois, MD; Chau Trinh-Shevrin, DrPH; Monica Cebrian, MS; Amina Chaudhry, MD; Alex Cho, MD; Lisa Minsky-Primus, MD; Jennifer Lin, MD; Alyssa Finlay, MD; Angela Tu, MD; Claudia Ayash, MPH; Zeling Chau; Kah Wan; Therza Torchon; Nirav Shah, MD, Thomas Tsang, MD, MPH; New York University Cancer Institute; Bellevue Hospital Center; Charles B. Wang Community Health Center; Flatbush Haitian Center; Diversified Community Health Services; Chinese-American Planning Council; Korean Community Services of Metropolitan New York; Caribbean Women's Health Association; Project Reach Youth; Alianza Dominicana; Haitian Women's Program; New Immigrant Community Empowerment; Literacy Assistance Center; and the Cancer Information Service of the National Cancer Institute. In addition to the contributors, CANIMP wishes to thank the following, whose tireless efforts made CANIMP successful: Wai Ting Chung, Jolene Innis, Muhammad Dhanani, Jude Divers, Amarilis Cespedes, Pruthvi Patel, Rachana Jani, Shital Shah, and Karen Rochford