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The Special Populations Networks: Achievements and Lessons Learned 2000–2005 Supplement to Cancer
Redes En Accio´ n Increasing Hispanic Participation in Cancer Research, Training, and Awareness
Amelie G. Ramirez, DrPH1 Gregory A. Talavera, MD, MPH2 Jose Marti, MD3 Frank J. Penedo, PhD4 Martha A. Medrano, MD, MPH5 Aida L. Giachello, PhD6 Eliseo J. Pe´ rez-Stable, MD7 1
Department of Medicine, Baylor College of Medicine, Houston, Texas. 2
Department of Family and Preventative Medicine, San Diego State University, San Diego, California. 3
Surgical Oncology, The Brooklyn Hospital Center, New York, New York. 4
Hispanics are affected by many health care disparities. The National Cancer Institute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and leadership in cancer research. Redes En Accio´n established a national network of cancer research centers, community-based organizations, and federal partners to facilitate opportunities for junior Hispanic scientists to participate in training and research projects on cancer control. Since 2000, Redes En Accio´n has established a network of more than 1800 Hispanic leaders involved in cancer research and education. The project has sustained 131 training positions and submitted 29 pilot projects to NCI for review, with 16 awards for a total of $800,000, plus an additional $8.8 million in competing grant funding based on pilot study results to date. Independent research has leveraged an additional $32 million in nonRedes funding, and together the national and regional network sites have participated in more than 1400 community and professional awareness events. In addi-
Department of Psychology, Sylvester Comprehensive Cancer Center, Miami, Florida.
tion, the program conducted extensive national survey research that provided the basis for the Redes En Accio´n Latino Cancer Report, a national agenda on His-
5
panic cancer issues. Redes En Accio´n has increased participation in cancer control
Hispanic Center of Excellence, The University of Texas Health Science Center at San Antonio, San Antonio, Texas.
research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006;107(8 Suppl):2023–33. 2006 American Cancer Society.
6
Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, Illinois. 7 Department of Medicine, The University of California at San Francisco, San Francisco, California.
Supported by grant U01-CA86117-05 from the NCI. We express our appreciation and gratitude to the staff of the National and Regional Network Centers who worked on Redes En Accio´n from 2000 to 2005. Thanks also to Kipling Gallion, MA; Patricia Chalela, MPH; and Dani Presswood for their contributions in preparation of this article. Address for reprints: Amelie G. Ramirez, DrPH; Department of Medicine; Deputy Director, Chronic Disease Prevention and Control Research Center; Office of Health Disparities Research. The Dan L. Duncan Cancer Center, Baylor College of Medicine, Suite 110, 8207 Callaghan Road, San Antonio, TX 78230; fax 210-348-0554; E-mail:
[email protected] Received January 13, 2006; revision received April 4, 2006; accepted May 24, 2006.
ª 2006 American Cancer Society
KEYWORDS: Community Health Networks, Hispanics, cancer, research, training, awareness, community participation, minority groups.
Hispanic/Latino Populations – Demographic Characteristics ith a population of more than 41 million, Hispanics/Latinos are the largest minority group in the nation.1 The majority of Hispanic Americans are of Mexican heritage (66.9%), with Puerto Rican (8.6%), Cuban (3.7%), and Central and South American Hispanics (14.3%) making up the other groups.2 The population is spread throughout the country, with the largest Hispanic concentrations in California, Texas, New York, Florida, Illinois, Arizona, New Jersey, and New Mexico.2 (In this report, the term Hispanic is used synonymously with Latino.)
W
Prevalence of Cancer Among Hispanics The leading cancer sites for Hispanics are prostate, breast, colon and rectum, and lung.3–5 Incidence and mortality rates for all cancers combined and for the 4 most common cancer sites are lower among Latinos than non-Hispanic whites.3–6 However, according
DOI 10.1002/cncr.22148 Published online 6 September 2006 in Wiley InterScience (www.interscience.wiley.com).
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to the Surveillance, Epidemiology and End Results (SEER) Cancer Statistics Review 1975–2001, cancers with a higher incidence for Hispanic men than for non-Hispanic white men are stomach, liver, and gallbladder. For Latina women, these cancers are uterine, cervix, stomach, liver, and gallbladder.4,5 Cervical cancer incidence rates are especially high among Latinas and are second only to those of Vietnamese women.3,7 For Hispanic males, lung cancer is the leading cause of death, followed by colon and rectum and prostate cancers. Breast cancer is the leading cause of death among Hispanic females, followed by lung and colon and rectum cancers.5
Cancer Health Disparities Affecting Hispanics Despite notable progress in the overall health of Americans in general, continuing disparities exist in the burden of illness and death experienced by Hispanics and other minorities when compared with the U.S. population as a whole.8 Although incidence rates for most cancers are lower among Hispanics, survival rates for certain cancer sites, such as colon and breast, are disproportionately lower.9 Awareness of cancer issues has not reached segments of the Hispanic population who have been slow to adopt preventive practices, such as cancer screening or nutritional modification.10–18 Economic factors further complicate cultural barriers to prevention and treatment. Perhaps the greatest barrier to health care is that 32.7% of the Hispanic population were uninsured in 2004, making Hispanics the largest portion of uninsured persons in the country.19 It is estimated that by 2050 Hispanics will represent about 24.5% of the total population. If the current health disparities trend continues, the projected demographic change will amplify the adverse economic, social, and health impact of such disparities.20 Inadequate Research Participation Studies document that Hispanics have been underrepresented in research for years.21,22 Scientific understanding of cancer control issues affecting Hispanics is lacking because few Latinos enter clinical trials. Participation of Hispanics in cancer clinical trials decreased from 3.7% of trial participants in 1996 to 3.0% of participants in 2002.22 Scientific progress in cancer research involving Latinos is hindered by a lack of trained Hispanic scientists and research personnel. Minority groups are underrepresented in the biomedical sciences labor force.23 Disparities in employment are preceded by low minority enrollment in the biosciences, as well as fewer minority mentors for those minority students and junior professionals.24–26
Redes En Accio´ n In response to the National Cancer Institute’s (NCI’s) request for proposals to address cancer health disparities among underserved populations (the Special Populations Networks [SPN] initiative), a cooperative agreement was awarded to the Baylor College of Medicine for a project titled Redes En Accio´n (Networks in Action). Under the SPN program from 2000 to 2005, Redes En Accio´n brought together the most extensive collection of organizations ever assembled nationwide to collaborate in the fight against cancer among this country’s Hispanic populations. As with each of the NCI’s SPN projects, Redes En Accio´n’s goals were broadly framed within 4 areas: 1) network development, 2) research, 3) training, and 4) awareness. This paper provides an overview of the Redes En Accio´n program, its networking and capacity building activities to increase Hispanic participation and leadership in cancer research, and a summary of its main accomplishments. Additional details on the program and its outcomes can be found on the Web site www.redesenaccion.org. As birth and immigration contribute to high growth rates in the Hispanic/Latino population in this country, addressing Hispanic/Latino cancer incidence and mortality and tackling high priority cancer issues become increasingly acute. Access to cancer screening and care and tobacco use, for example, are key issues for cancer prevention and control among Hispanics, highlighting the importance of an agenda that identifies priorities and provides a framework for action. To address this need, Redes En Accio´n conducted 2 national surveys with key opinion leaders and physicians on important Hispanic cancer issues that were the basis for development of the Redes En Accio´n Latino Cancer Report—Summary Recommendations for a National Hispanic/Latino Cancer Control Agenda, and helped guide Redes En Accio´n in its activities promoting Latino cancer research, training, and public education. This document also presents a summary of the results and implications from the national surveys.
MATERIALS AND METHODS Project Objectives Within the framework of goals, a series of objectives was established for Redes En Accio´n. Under network development, the objectives were to 1) develop program infrastructure; 2) develop a national/regional cancer resource database, with partners in research, training, and public education; and 3) develop national and regional collaboration. For research acti-
Hispanic Participation in Cancer Research/Ramirez et al.
vities, the objectives were to 1) develop pilot projects, 2) develop extramural collaborative research opportunities, and 3) conduct nationwide surveys of key opinion leaders and Hispanic physicians. The training objectives were to 1) develop training programs for junior faculty, pre- and postdoctoral students, and interns; and 2) develop extramural collaborative training opportunities. To raise awareness, the objectives were to 1) develop communication products or channels promoting Redes En Accio´n activities and 2) develop multilevel public education activities raising cancer awareness among Latinos.
Network Development National and regional infrastructure To coordinate activities of Redes En Accio´n, oversight functions were built into a national/regional infrastructure. The National Network Center (NNC) provided overall direction for Redes activities, which were carried out by staff of 6 Regional Network Centers (RNCs) strategically located across the United States. The NNC was headquartered in San Antonio and Houston, Texas, and the RNCs were located in Miami, Brooklyn, San Francisco, San Diego, San Antonio, and Chicago. National/Regional Cancer Resource Database From the inception of the Redes En Accio´n program, an ongoing task was the compilation of data regarding potential ‘partners’—individuals, organizations, and entities involved in cancer research, training, and awareness within communities in each of the 6 Redes regions. The Redes En Accio´n Resource Partnership Directory includes names, titles, addresses, and other demographic information, as well as descriptions of partners’ research activities, training/education opportunities, and public education/outreach programs involving cancer and Hispanics. The purpose of this partnership database is to identify research and training opportunities, as well as track cancer awareness activities in each Redes region. National and Regional Collaboration A central facet of the Redes En Accio´n network development mission was to develop collaborative relationships with federal agencies, national and community organizations and associations, academic institutions, and other entities with the capacity to further the program’s goals. The overall goal of these linkages was to develop mutually beneficial research, training, and/or public education activities and lay the groundwork for collaboration as opportunities arose.
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Research Pilot projects A major research objective of the program was the submission and successful awarding of competitive NIH pilot project applications to junior scientists. All pilot research studies were to be conducted by selfidentified Hispanic investigators and focus on cancer-related issues among Hispanic/Latino populations, or if the investigator was non-Hispanic, the focus of the research was required to be on cancer control among U.S. Hispanic/Latino populations with the study co-led by a Latino. Application opportunities for the $50,000 pilot grants were offered twice annually from years 2 through 4. Extramural collaborative research The existence of an increasingly extensive network of potential partners and collaborators over the course of the Redes En Accio´n program allowed investigators to compete for competitive NIH research funds, increasing the program’s research portfolio beyond pilot funding. The plan from the outset was to create research opportunities that would be both national and regional in scope, design, and implementation. All projects engaged academic institutions, cancer centers, and/or communities. Nationwide surveys Key opinion leader survey. To develop a national Latino cancer research agenda, Redes En Accio´n conducted a process of issue identification and recommendation prioritization that included 4 basic steps: 1) eliciting guidance of a national ‘experts committee’ of authorities in Latino health, and in particular, cancer health; 2) receiving input from regional ‘advisory committees’ serving the RNCs (composed of similar ‘experts’ in the different regions of the country); 3) soliciting input from a broad range of Latino cancer health stakeholders throughout the United States via a key opinion leaders survey; and 4) assessing the data from this key opinion leader survey for synthesis into a final summary document. Redes En Accio´n surveyed 624 key opinion leaders from around the country to help identify cancer issues of greatest relevance to Latinos. Participants represented a variety of stakeholders in Latino health, including researchers, health care professionals, and leaders of government agencies and community-based organizations. Respondents were asked to rank the 3 cancer sites most important to Latinos in their regions and the 5 issues of greatest significance for this population’s cancer prevention and control. According to Redes En Accio´n goals and objectives, recommen-
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dations were prioritized for 3 specific areas: 1) research, 2) training/professional education, and 3) awareness/ public education.27 Hispanic physicians survey. To gain information about 1) the perceived needs and priorities for cancer research, training, and awareness with Latinos; and 2) physicians’ knowledge, attitudes, and practices regarding cancer education, screening, and care, as well as their cultural competence in caring for and communicating with Latinos, Redes En Accio´n conducted a nationwide survey with a randomly selected sample of 2000 physicians. Using the Physician Master File Database of the American Medical Association (AMA), physicians were randomly selected from the following states: Texas, California, Illinois, New York/New Jersey, and Florida. The states of New York and New Jersey were treated as 1 region for the purpose of sampling. Inclusion criteria included physicians younger than 65 years; self-identified as Latino/Hispanic or White/Caucasian; and categorized as general internist, family physician, or gynecologist. The sample was stratified to have equal numbers by ethnicity and in each of the 5 regions, as well as equal numbers of general internists and family physicians by region (75 each) and fewer gynecologists (50 each). All practicing medical oncologists, selfidentified as Latino, were also included in the sample. These were ‘additional’ potential respondents to the sample size of 2000. The survey emphasized practices to evaluate the extent to which physicians were following recommended cancer screening and cancer prevention guidelines. These data will be useful for raising physician and public awareness of the importance of specific cancer education and research issues.
Training Junior faculty, pre- and postdoctorates, and interns The education component of Redes En Accio´n promoted cancer-related training activities for 1) junior faculty, 2) pre- and postdoctoral individuals, and 3) student interns. Goals were set for the number of funded junior faculty and student intern positions. For junior faculty, the purpose of the training was to provide Hispanics with opportunities for supported fellowships in cancer research in Hispanic populations. To be eligible, the faculty member was required to have completed doctoral training within the previous 6 years. Each RNC was expected to recruit at least 1 junior faculty member annually from Years 2 to 5, and the Redes En Accio´n network goal was to recruit at least 20 during the course of the program. Training guidelines required that the
junior faculty appointee work toward developing a pilot project application, grant proposal, or manuscript for publication to an academic peer-reviewed journal. For pre- and postdoctoral trainees, Redes En Accio´n’s goal was to serve as a facilitator in pairing individuals of Hispanic heritage with ongoing research projects targeting cancer in Hispanic populations. Trainees were expected to secure their own funding through an individual grant or ongoing research project. The goal for the student intern position was to provide undergraduate and recent Hispanic college graduates with experience in cancer research. Each RNC was expected to recruit at least 4 interns for 10week periods during Years 2-5, and the Redes En Accio´n network goal was to train 20 interns overall. The RNCs provided financial support, mentoring, and guidance in preparation for application of postgraduate education in medicine and/or public health.
Extramural collaborative training As with Redes En Accio´n’s ‘extramural research’ program, the project also sought ‘extramural training’ opportunities; that is, activities that would provide Latino cancer training experiences outside the established goals of training junior faculty, pre- and postdoctoral individuals, and student interns. The goal was to establish strong collaborative relationships with both national and regional training programs. Awareness Redes En Accio´ n communication channels Ongoing communication with partners and the public has been necessary to ensure that interested audiences are kept abreast of Redes En Accio´n activities. Primarily through the Redes Web site (www.redesenaccion.org) and newsletter (the Redes Report), information has been disseminated on research activities, training opportunities, cancer public education efforts, and related activities of the network. Public Education Activities To aid cancer prevention and control efforts, particularly within communities, Redes En Accio´n has developed an array of education tools and channels designed to raise awareness of cancer risks and screening and clinical research resources available to Hispanics. One component of this effort is the program’s variety of publications, particularly the Buena Vida series of bilingual magazine-style print pieces and a book titled Nuestras Historias: Mujeres Hispanas Sobreviviendo el Ca´ncer del Seno (Our Stories: Hispanic Women Surviving Breast Cancer). The Buena
Hispanic Participation in Cancer Research/Ramirez et al.
Vida magazine series is a theory-based, colorful, bilingual publication designed for a 10th grade reading level. Each magazine received extensive formative development involving focus groups and expert review. Another major component of the cancer awareness program has been a nationwide mass media public service announcement (PSA) campaign promoting Hispanic participation in cancer clinical trials. The PSAs were developed in collaboration with the Cancer Information Service (CIS) and a private video production company. In addition, RNC staff have raised cancer awareness through various approaches, including professional presentations and conferences, community events, and CIS communication activities.
RESULTS Network Development National and regional infrastructure The Redes En Accio´n coordinating center, the NNC, manages network communication and reporting systems, oversees the standards and submission procedures of pilot projects, acts as lead investigator for many of the nonpilot research projects, provides standards and quality control monitoring of faculty training, and manages national awareness events. The NNC also coordinates the National Steering Committee (NSC) and is responsible for convening an annual NSC meeting, which serves to identify and adjust priorities and guide public education, scientific training, and research project development. The diverse composition of the NSC is reflected by membership representation of academic institutions, federal and private entities, and various community-based organizations representing over 2100 community groups with a combined membership of almost 100,000. The NNC coordinates the actions of the 6 RNCs, which conduct public and professional education and advocacy activities, recruit and work with individuals in the training program, and provide linkages for development of research projects. To ensure community participation and collaboration with local academicians and researchers, a Regional Community Advisory Committee has been formed at each RNC with representation from various fields. These include scientific training and research centers, research programs, government agencies, service organizations, and community-based organizations. National/regional cancer resource database Through the RNCs, Redes En Accio´n has established numerous formal linkages between academic institutions and the diverse Hispanic communities within the United States. Of the 1846 partners in the part-
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nership resource database, 444 are from academic institutions, 168 are from cancer centers, and 1027 represent community organizations, with 207 ‘others.’ The National and RNCs have utilized this database in a variety of ways to identify partners for diverse roles, including assisting in the design of entire programs, designing surveys, providing input in community health agenda efforts, and providing information on cancer programs for the Redes newsletter and Web site.
National and regional collaboration Numerous national and regional alliances have grown out of the initial Redes En Accio´n SPN program, resulting in cooperative arrangements for research, training, and/or awareness activities. Examples of key partners and cancer prevention and control efforts that have resulted from these relationships are outlined in the following paragraphs. Cancer Information Service. The partnership encouraged by the NCI with its CIS has been extremely fruitful in developing cancer education activities. For example, the CIS coproduced Redes En Accio´n’s award-winning PSA series designed to encourage participation of Hispanics in cancer clinical trials, collaborated in a community education effort that further promoted clinical trial participation, and provided phone counseling for a Redes-sponsored study that tested different clinical trial recruitment strategies among Hispanics in South Texas. National Hispanic Medical Association. As a major partner of Redes En Accio´n, the National Hispanic Medical Association (NHMA) regularly promotes Redes program goals and activities at professional events; participates in Redes planning meetings; provides input to design of program activities; promotes Redes research, training, and awareness goals at NHMA-sponsored events; and distributes Redes newsletters to its membership. Susan G. Komen Breast Cancer Foundation. With a shared goal in the battle against breast cancer, Redes En Accio´n and the Komen Foundation have often joined forces, partnering in community-based breast health initiatives to address issues confronting Hispanic women. Investigations have included the Psychosocial Study of Breast Cancer Survivorship and Genetic Testing among Breast Cancer Registry Members, Breast Cancer Education Materials and Programs Development, and Nuestras Historias Mujeres Sobreviviendo el Ca´ncer del Seno (Our Stories: Latinas Surviving Breast Cancer).
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Hispanic/Latino Genetics Community Consultation Network. The Hispanic/Latino Genetics Community Consultation Network is an effort of Redes En Accio´n to identify and prioritize genetics issues of particular interest to Hispanic populations. This activity underscores the program’s success in leveraging resources to encourage support by federal partners (NCI, the National Human Genome Research Institute, and the National Institute of General Medical Sciences) in efforts to reduce cancer health disparities. The ultimate goal is to obtain a better understanding of issues specific to Hispanic populations that will be translated into culturally sensitive and tailored interventions to increase awareness and participation in genetics research among Hispanics and help them benefit from cutting-edge research. This project brought together Hispanic genetics stakeholders from across the United States at a summit meeting in Washington, DC, to create a Latino-driven genetics agenda focusing on research concerns, health care delivery, and professional and public education on genetics. The meeting revealed that the most important issues for each of the areas include: research, including 1) misuse of genetic materials, 2) discrimination and fears, 3) participation in research studies, and 4) environmental risk and increased exposure health care delivery, to include 1) access to services and competence of providers, 2) shortage of Hispanic health professionals, and 3) nonreductionist education strategies and nondirective counseling professional education, including 1) low minority enrollment in basic science and graduate programs, 2) high attrition rates, 3) lack of minorities doing genetics research, and 4) lack of minority mentorship public education and outreach, to include 1) low levels of knowledge and understanding of genetics, 2) lack of collective efforts to promote genetics, 3) cultural incompetence among general health care professionals, and 4) low Hispanic representation in genetics policy-making. Specific recommendations to address these priority issues were also developed by summit participants.
Research Pilot projects Under the SPN initiative, investigators were given the opportunity to compete for early career researcher
pilot project funding of $50,000 per study. Over the course of 6 funding cycles, Redes En Accio´n researchers reviewed more than 50 projects, providing guidance as reviewers and mentors of the applicants. In all, 29 of those projects were forwarded for final review to the NCI and 16 were approved for funding, totaling $800,000 in funding awards. In addition, principal investigators of 9 of these studies have received $8.8 million in competing grant funding awarded on the basis of their pilot project results.
Extramural collaborative research In addition to the pilot projects, Redes En Accio´nrelated cancer research projects at both the national and regional levels have surpassed $32 million in funding from public and private sources. Over the course of the SPN initiative, Redes En Accio´n researchers have directed or participated in—through subcontracts or shared resources—more than 80 new and/or ongoing cancer projects. Fifteen of those research projects—totaling more than $5 million in funds—have been initiated by the NNC, while others have been generated by Redes En Accio´n researchers at the initiative’s regional sites. Nationwide surveys Key opinion leader survey. Of the 624 participants who participated in Redes En Accio´n’s national survey to help identify cancer issues of primary relevance to Hispanics, 64% of these key opinion leaders were Hispanic, 28% non-Hispanic white, and 8% ‘other.’ Forty-eight percent of participants were from academic institutions and 52% were from communitybased organizations. The majority of participants were female (68%) and aged 40 and older (64%). Of the Hispanic participants, 41% were Mexican American, 17% Puerto Rican, 15% South American, 10% Cuban, 7% Central American, and 11% ‘other’ Latino. The top-ranked issue was access to cancer screening and care, followed by tobacco. Table 1 shows the rank order of the 14 cancer issues as determined by survey participants. Survey participants ranked breast cancer as the most important cancer site for cancer prevention and control within their Hispanic communities (Table 2). Hispanic physicians survey. A second nationwide survey conducted by Redes En Accio´n, which sought information from physicians (primarily Hispanics), showed that most respondents were male, and Latino physicians who participated were younger than nonHispanics and more likely to be foreign born. Compared with non-Hispanic physicians, Latino physicians were less likely to be in private practice, and
Hispanic Participation in Cancer Research/Ramirez et al. TABLE 1 Key Opinion Leader Survey: Most Important Cancer Issues (n ¼ 624 Mean Rank)
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TABLE 2 Key Opinion Leader Survey: Most Important Cancer Sites (n ¼ 624 Mean Rank)
Cancer issue
Rank
Mean
SD
Cancer site
Rank
Mean
SD
Access to cancer screening and care Tobacco Patient/doctor communication Nutrition Risk communication Physical activity and weight management Alcohol Sexual practices Occupation and environment Quality of life Clinical trial or medical study participation Infectious agents Cancer survivorship Genetic testing and education
1 2 3 4 5 6 7 8 9 10 11 12 13 14
3.01 2.52 1.48 1.38 1.37 1.05 0.98 0.78 0.69 0.54 0.49 0.47 0.34 0.18
1.94 2.09 1.76 1.74 1.74 1.58 1.56 1.49 1.33 1.17 1.12 1.17 0.97 0.74
Breast Cervix Lung Prostate Colon/rectum Liver Stomach
1 2 3 4 5 6 7
2.32 1.09 0.98 0.69 0.68 0.17 0.14
0.97 1.17 1.14 0.92 0.88 0.56 0.50
typically saw more Medicaid and Hispanic patients but similar proportions of African American and Asian patients. Table 3 shows that breast, cervix, lung, and colon/rectum were the cancer sites identified as most important by both Hispanic and non-Hispanic white physicians. While tobacco was deemed the number 1 cancer issue by both Hispanic and non-Hispanic physicians, the survey revealed differences of opinion between the 2 groups with regard to other cancerrelated issues of greatest significance to cancer prevention and control in Latinos (Table 4). The survey also revealed that only 53% of Hispanic and 63% of non-Hispanic white physicians agreed that sufficient scientific value and benefits exist for them to refer patients to clinical trials. Forty-three percent of Hispanic and 32% of non-Hispanic white physicians reported they had never participated in clinical trials. Latino cancer report. The data collected and assessed as a result of the key opinion leader and Hispanic physicians surveys provided the foundation for a national report to help guide future Latino cancer research, training, and public education. In its summary recommendations for a national Hispanic cancer control agenda, the Redes En Accio´n Latino Cancer Report—Summary Recommendations for a National Hispanic/Latino Cancer Control Agenda ranks the cancer issues of greatest relevance to this country’s Hispanic population as follows: 1) access to cancer screening and care, 2) tobacco use and cancer, 3) status and communication of cancer risk, 4) association of infectious agents with certain types of cancer, and 5) cancer survivorship and health-related quality of life. The report includes a series of re-
search recommendations for the priority issues, as well as education, training, and outreach recommendations for cancer prevention and control. In addition, the report lists the most important cancer sites, in order of their significance to Hispanics, as 1) breast, 2) cervix, 3) lung, 4) colon/rectum, 5) prostate, 6) liver, and 7) stomach.
Training Junior faculty, pre- and postdoctorates, and students Redes En Accio´n is increasing the number of Hispanic scientists involved in cancer research by providing training assignments and developmental research projects for junior researchers. During the 5-year SPN program, 131 individuals participated in Redes training (Table 5), with activities extending from graduate-level internships through early career faculty development. Trainees were identified at each of the sites either through direct solicitation from the regional Co-PIs, through announcements in our newsletter, from public presentations at professional conferences by the PIs, or through our Web site. Trainees have participated in a wide variety of research and training projects, with close mentoring relationships defining their experiences. As a result of the program, 7 junior faculty submitted pilot projects that have been approved for independent funding by NCI. Extramural collaborative training The South Central RNC has trained 18 medical school students as ‘cancer ambassadors’ conducting cancer and chronic disease education outreach to groups and organizations. In the Northwest Region, Redes En Accio´n has been instrumental in the education experiences of more than 30 pre- and postdoctoral Hispanic fellows by providing critical mentorship and research opportunities. In another training effort, all Redes regional sites worked with the Latino Council on Alcohol and Tobacco to facilitate leadership training seminars on tobacco and
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TABLE 3 Physicians Survey: Most Important Cancer Sites (n = 742) All
Latinos
Non-Hispanic whites
Cancer site
Rank
Mean
SD
Rank
Mean
SD
Rank
Mean
SD
Breast Cervix Lung Colon/rectum Prostate Other Liver Stomach
1 2 3 4 5 6 7 8
1.74 1.97 2.06 2.29 2.68 3.35 3.89 4.27
0.79 0.95 1.03 0.78 1.01 2.40 1.91 2.06
1 2 3 4 5 6 7 8
1.72 1.94 2.26 2.30 2.62 3.59 4.04 4.32
0.81 1.00 1.11 0.82 1.05 2.32 2.03 2.19
1 3 2 4 5 6 7 8
1.76 1.97 1.93 2.31 2.60 2.65 3.47 3.91
0.76 0.89 0.90 0.75 3.05 0.85 1.66 2.07
TABLE 4 Physicians Survey: Most Important Cancer Issues (n = 742) All
Latinos
Non-Hispanic whites
Cancer issue
Rank
Mean
SD
Rank
Mean
SD
Rank
Mean
SD
Tobacco Cancer care/screening access Physical activity Other cancer issues Sexual practices Nutrition Alcohol Infectious agents Patient/doctor communication Risk communication Occupation and environment Cancer survivorship Genetic testing/education Clinical trial participation Quality of life
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15
1.76 2.61 2.96 3.00 3.11 3.17 3.24 3.28 3.45 3.56 3.69 3.73 3.81 4.00 4.07
1.19 1.30 1.26 1.61 1.28 1.37 1.26 1.27 1.36 1.25 1.19 1.26 1.36 1.64 1.33
1 3 5 2 6 4 8 7 9 10 12 14 11 13 15
1.99 2.40 3.03 2.20 3.11 3.03 3.18 3.16 3.18 3.49 3.62 3.74 3.54 3.64 3.93
1.27 1.32 1.35 1.79 1.32 1.33 1.26 1.30 1.38 1.38 1.09 1.41 1.33 1.22 1.39
1 2 3 12 4 7 5 6 9 8 10 11 14 15 13
1.59 2.78 2.90 4.00 3.12 3.36 3.33 3.34 3.71 3.63 3.72 3.92 4.45 5.60 4.30
1.08 1.26 1.22 1.00 1.24 1.37 1.24 1.24 1.30 1.10 1.23 1.00 1.04 1.95 1.16
alcohol control to more than 350 local and regional Hispanic opinion leaders.
Awareness Redes En Accio´ n communication channels Web site. The Redes En Accio´n website reported 358,354 ‘hits’ over the course of the SPN program. The site has received increasing numbers of visitors each year since its development in 2001, culminating in final-year totals (2004-05) of more than 142,000 visits and 25,000 downloads. This includes 1700 downloads of the Redes En Accio´n Latino Cancer Report. Newsletter. The newsletter the Redes Report has been distributed primarily through the RNCs to 17,000 individuals and organizations each quarter. From 2000 to 2005, 17 issues have been produced and more than 350,000 copies have been distributed.
Public education activities Mass media PSA campaign. A mass media PSA campaign, launched in November 2001 and distributed to all major Hispanic media markets nationwide (over 700 different Spanish- and English-language media channels), offers information about clinical trials, with referral to information sources for recruitment to specific studies funded by NCI. Four separate video PSAs (30-s spots) were created for television and 8 (60-s) were developed for radio. In addition, information from the PSAs was incorporated into print advertisements, which were disseminated to newspapers and magazines. All of the video, audio, and print PSAs were produced in both Spanish and English (the video and audio PSAs can be downloaded at www.redesenaccion.org). Each PSA presents dramatic, cultural themes to convey the importance of learning more about clinical trials.
Hispanic Participation in Cancer Research/Ramirez et al. TABLE 5 Redes En Accio´n Training Program Results Category
Funded
Unfunded
Total
Junior faculty Pre-/postdoctorate Interns Other Total
22 NA 27 NA 49
13 24 27 18 82
35 24 54 18 131
The video PSAs earned Redes En Accio´n 2 Telly Awards for creative quality. The CIS approved all content and concept pretesting involved 150 shopping mall intercept interviews in Los Angeles (CA) and Dallas (TX) with Hispanics who reviewed story boards and provided their opinions. Evaluation relied on calls to the CIS phone number at the end of the message. The CIS was able to identify callers who saw the PSAs as well as collect demographic and cancer related data from them. Although the PSAs lack the advantages of paid media time (e.g., choices in scheduling), in 1 year they generated 160 calls to the CIS requesting more information on cancer control and medical study participation. Calls came from over 25 states, with California and Texas accounting for more than half. Publications. Redes En Accio´n’s book focusing on Latina breast cancer survivors, titled Nuestras Historias: Mujeres Hispanas Sobreviviendo el Ca´ncer del Seno (Our Stories: Hispanic Women Surviving Breast Cancer), has received numerous awards from general communication and health information organizations. The book, produced in full color and written in Spanish and English, relates the Hispanic breast cancer experience through the first-person accounts of Latina breast cancer survivors. It was produced with support of the Susan G. Komen Breast Cancer Foundation’s San Antonio Affiliate, the San Antonio Cancer Institute, and the Lance Armstrong Foundation. Free distribution of the book has been provided through the Komen Foundation, South Texas breast cancer organizations, and area cancer clinics. Also well received by Hispanic audiences is the Buena Vida series of cancer health information publications, which are 24-page, full-color, Spanish/English language, culturally tailored magazine-style print pieces. The Buena Vida publications use actual Hispanic role models in the community to provide basic information about topics such as breast and cervical cancer, clinical trials, screening procedures and guidelines, and the importance of diet and exercise. Over the years, these publications have been distributed through cancer organizations, community events, support groups, and other channels.
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Professional and community events. Staff of the National and RNCs have raised cancer awareness through more than 1400 community events and professional presentations to national and regional groups. The array of public communication activities has reached diverse audiences, including the lay public, cancer researchers, physicians and other health care personnel, educators, health communicators, community-based organizations, and the media.
DISCUSSION One of the major achievements of the Redes SPN program, development of the Redes En Accio´n Latino Cancer Report—Summary Recommendations for a National Hispanic/Latino Cancer Control Agenda, is an outgrowth of the extensive survey research conducted by the initiative. The report represents 4 years of research and prioritization and the input of hundreds of scientists, health care professionals, leaders of government agencies and professional and community-based organizations, and other stakeholders in Hispanic health. Besides the 624 key opinion leaders and 742 physicians surveyed nationwide, the process included participation by Redes En Accio´n’s NSC and 6 Regional Community Advisory Committees. In addition to assisting Redes En Accio´n in setting program priorities, the Report is intended to provide advisory guidelines for national, regional, and local policymakers. Since Hispanics compose the largest minority population in the country, it is extremely important that resources and strategies used in the fight against cancer be targeted as precisely as possible. The Latino Cancer Report is intended as a useful tool for organizations and programs engaged in this effort in Hispanic communities. Despite the regional and ethnic diversity of participants in the 2 major national surveys (key opinion leader survey and Hispanic physicians survey) there was agreement on the main priorities. It is not surprising that access to health services ranked at the top (first for opinion leaders and second for physicians), as Hispanic populations are among those that suffer most from disparities in the cost and availability of care.11 It is important to note that communication barriers were also identified as part of the access problem and that research and education to improve physician–patient communication were among the top priorities for both public and professional education. Tobacco, the number 2 priority cancer issue for key opinion leaders and number 1 for physicians, is a major cancer issue for all populations, and Redes En
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CANCER Supplement
October 15, 2006 / Volume 107 / Number 8
Accio´n efforts to address this problem cut across the initiative’s research, training, and awareness mission. Specific programs have included Sin Fumar (in which Redes researchers and local partners provided middle school and high school students tools to avoid the smoking habit) and the Mass Media Intervention to Reduce Youth Smoking (in which investigators worked with the University of Vermont to develop a comprehensive mass media advertisement campaign). In regional research sites, Redes investigators have conducted several tobacco-related initiatives, such as Using Tobacco Industry Marketing Research to Develop New Tobacco Control Interventions for Young Adults in the Northwest Region, and Smoking Prevention for Latino Middle School Students in the Southwest Region. In addition, pilot research projects at the regional sites have included studies testing nicotine dependence and pharmacotherapy methods, improving Hispanic physician tobacco-related communication with patients, and promoting smoking cessation practices of Latino smokers. Findings of both national surveys provided the basis for development of the Redes En Accio´n Latino Cancer Report—Summary Recommendations for a National Hispanic/Latino Cancer Control Agenda, and helped guide Redes En Accio´n in its activities promoting Latino cancer research, training, and public education. Not only is such an agenda essential in empowering investigators and educators, as well as providers, payers, and patients, to collaborate on cancer prevention and control, but it also is crucial in informing and motivating policy makers to recognize the gravity of cancer for Hispanics/Latinos. As policy makers at the federal, state, and local levels deal with concerns about access to care, health promotion and disease prevention, health professionals’ education and training, public funding for biomedical research, and communications modalities in the health field, they need to take into account the health care needs of the burgeoning Hispanic/Latino population and ways in which those needs can be met. Latinos compose the largest and fastest-growing minority population in the country, and it is extremely important that resources and strategies used in the fight against cancer be targeted as precisely as possible. In addition, the Hispanic physicians survey contributed to raise public awareness of the importance of specific research issues among Hispanics that need to be addressed to reduce the burden of cancer in this ethnic minority group, and to guide future direction in physician education materials and programs that promote clinical research, and cultural competence about the benefits of including Latinos in clinical trials.
Another issue deemed significant to the leadership of Redes En Accio´n (yet, interestingly, not rated highly in either of the surveys) was that of genetic research and its implications for future cancer prevention and control efforts. The pioneering Hispanic/Latino Genetics Community Consultation Network summit meeting could well serve as a model for bringing together stakeholders within the national community with leading scientists in Washington, DC, and around the country to discuss, prioritize, and develop recommendations for specific minority health issues. In addition to coordinating this prestigious event, Redes researchers conducted other activities addressing genetics issues. For example, Redes En Accio´n partnered with the Cancer Genetics Network, another national, NCI-funded program that aims to increase minority participation in recruitment to cancer genetic trials. Given the underrepresentation of minorities at all levels of the genetics community, there is doubt that these underserved populations can benefit equally from medical advances produced by genetic research. If minorities do not participate in genetic studies, there is a great risk that disease genes in certain population groups will not be well understood and that medical benefits to these populations will be less significant than for populations with higher participation rates. Increasing awareness and understanding of genetics and its potential benefits and risks is a first step in involving Hispanics in genetic research. As with genetics issues, increasing Hispanic participation in cancer research was not identified as a priority by key opinion leaders. However, more Hispanic involvement is clearly needed in both basic research and clinical trials. To address this need, Redes En Accio´n has begun studying and publishing on the absence of knowledge about barriers to recruitment to clinical trials among Hispanics. This has led to several new studies that seek to discover new methods of increasing trial participation. Redes En Accio´n, in a landmark collaboration with 4 national SPN programs representing Native American, African American, Asian American, and Appalachian populations, has developed a standardized breast cancer genetics survey to be used by each of these groups. Results will lead to new programs and educational materials to increase awareness of breast cancer genetics and clinical trial participation.
Conclusions Although Redes En Accio´n’s SPN program has met its goals, more work is needed. As science advances, participation among all ethnic groups—from researchers to communities—is vital. In addition to the
Hispanic Participation in Cancer Research/Ramirez et al.
resources provided through the original grant, Redes En Accio´n has expanded its impact through strategic leveraging across all its sites by garnering an additional $32 million in funds to conduct new research. The net result has been an increase in training and professional advancement opportunities to Hispanic scientists as well as notable contributions to the knowledge base of cancer among Hispanics. All of these achievements have been made possible by the contributions and foundation of a network of stakeholders in Hispanic cancer control. This network can continue to yield similar results if it is properly supported and sustained in the years to come.
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