Redes En Acción

11
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, DrPH 1 Gregory A. Talavera, MD, MPH 2 Jose Marti, MD 3 Frank J. Penedo, PhD 4 Martha A. Medrano, MD, MPH 5 Aida L. Giachello, PhD 6 Eliseo J. Pe ´ rez-Stable, MD 7 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 Department of Psychology, Sylvester Compre- hensive Cancer Center, Miami, Florida. 5 Hispanic Center of Excellence, The University of Texas Health Science Center at San Antonio, San Antonio, Texas. 6 Midwest Latino Health Research, Training, and Policy Center, University of Illinois at Chicago, Chicago, Illinois. 7 Department of Medicine, The University of Cali- fornia at San Francisco, San Francisco, California. Hispanics are affected by many health care disparities. The National Cancer Insti- tute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and lead- ership in cancer research. Redes En Accio ´n established a national network of can- cer 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 estab- lished 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 non- Redes funding, and together the national and regional network sites have partici- pated in more than 1400 community and professional awareness events. In addi- 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- panic cancer issues. Redes En Accio ´n has increased participation in cancer control research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006;107(8 Suppl):2023–33. Ó 2006 American Cancer Society. KEYWORDS: Community Health Networks, Hispanics, cancer, research, training, awareness, community participation, minority groups. Hispanic/Latino Populations Demographic Characteristics W 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 Hispa- nics (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 synony- mously with Latino.) 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 can- cers combined and for the 4 most common cancer sites are lower among Latinos than non-Hispanic whites. 3–6 However, according Supported by grant U01-CA86117-05 from the NCI. We express our appreciation and gratitude to the staff of the National and Regional Network Cen- ters 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 Medi- cine, 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 DOI 10.1002/cncr.22148 Published online 6 September 2006 in Wiley InterScience (www.interscience.wiley.com). 2023

Transcript of Redes En Acción

The Special Populations Networks: Achievementsand Lessons Learned 2000–2005

Supplement to Cancer

Redes En AccionIncreasing 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. Perez-Stable, MD7

1 Department of Medicine, Baylor College ofMedicine, 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 Department of Psychology, Sylvester Compre-hensive Cancer Center, Miami, Florida.

5 Hispanic Center of Excellence, The University ofTexas Health Science Center at San Antonio, SanAntonio, Texas.

6 Midwest Latino Health Research, Training, andPolicy Center, University of Illinois at Chicago, Chicago,Illinois.

7 Department of Medicine, The University of Cali-fornia at San Francisco, San Francisco, California.

Hispanics are affected by many health care disparities. The National Cancer Insti-

tute (NCI), through its Special Populations Branch, is supporting networking and

capacity-building activities designed to increase Hispanic participation and lead-

ership in cancer research. Redes En Accion established a national network of can-

cer 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 Accion has estab-

lished 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 non-

Redes funding, and together the national and regional network sites have partici-

pated in more than 1400 community and professional awareness events. In addi-

tion, the program conducted extensive national survey research that provided the

basis for the Redes En Accion Latino Cancer Report, a national agenda on His-

panic cancer issues. Redes En Accion has increased participation in cancer control

research, training, and awareness among Hispanic scientists and within Hispanic

communities. Cancer 2006;107(8 Suppl):2023–33. � 2006 American Cancer Society.

KEYWORDS: Community Health Networks, Hispanics, cancer, research, training,awareness, community participation, minority groups.

Hispanic/Latino Populations – Demographic Characteristics

W 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 Hispa-

nics (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 synony-

mously with Latino.)

Prevalence of Cancer Among HispanicsThe leading cancer sites for Hispanics are prostate, breast, colon

and rectum, and lung.3–5 Incidence and mortality rates for all can-

cers combined and for the 4 most common cancer sites are lower

among Latinos than non-Hispanic whites.3–6 However, according

Supported by grant U01-CA86117-05 from the NCI.

We express our appreciation and gratitude to thestaff of the National and Regional Network Cen-ters who worked on Redes En Accion from 2000to 2005. Thanks also to Kipling Gallion, MA;Patricia Chalela, MPH; and Dani Presswood fortheir contributions in preparation of this article.

Address for reprints: Amelie G. Ramirez, DrPH;Department of Medicine; Deputy Director, ChronicDisease Prevention and Control Research Center;Office of Health Disparities Research. The Dan L.Duncan Cancer Center, Baylor College of Medi-cine, Suite 110, 8207 Callaghan Road, San Antonio,TX 78230; fax 210-348-0554;E-mail: [email protected]

Received January 13, 2006; revision receivedApril 4, 2006; accepted May 24, 2006.

ª 2006 American Cancer SocietyDOI 10.1002/cncr.22148Published online 6 September 2006 in Wiley InterScience (www.interscience.wiley.com).

2023

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 gall-

bladder. For Latina women, these cancers are uter-

ine, 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 HispanicsDespite notable progress in the overall health of

Americans in general, continuing disparities exist in

the burden of illness and death experienced by His-

panics 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 fur-

ther complicate cultural barriers to prevention and

treatment. Perhaps the greatest barrier to health care

is that 32.7% of the Hispanic population were unin-

sured 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 ParticipationStudies document that Hispanics have been underre-

presented in research for years.21,22 Scientific under-

standing of cancer control issues affecting Hispanics

is lacking because few Latinos enter clinical trials. Parti-

cipation of Hispanics in cancer clinical trials de-

creased 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 per-

sonnel. Minority groups are underrepresented in the

biomedical sciences labor force.23 Disparities in

employment are preceded by low minority enroll-

ment in the biosciences, as well as fewer minority

mentors for those minority students and junior pro-

fessionals.24–26

Redes En AccionIn response to the National Cancer Institute’s (NCI’s)

request for proposals to address cancer health dispa-

rities 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 Accion (Net-

works in Action). Under the SPN program from 2000

to 2005, Redes En Accion 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 Accion’s

goals were broadly framed within 4 areas: 1) network

development, 2) research, 3) training, and 4) aware-

ness.

This paper provides an overview of the Redes En

Accion program, its networking and capacity building

activities to increase Hispanic participation and lead-

ership 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 inci-

dence 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 Accion con-

ducted 2 national surveys with key opinion leaders

and physicians on important Hispanic cancer issues

that were the basis for development of the Redes En

Accion Latino Cancer Report—Summary Recommen-

dations for a National Hispanic/Latino Cancer Con-

trol Agenda, and helped guide Redes En Accion 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 METHODSProject ObjectivesWithin the framework of goals, a series of objectives

was established for Redes En Accion. Under network

development, the objectives were to 1) develop pro-

gram infrastructure; 2) develop a national/regional

cancer resource database, with partners in research,

training, and public education; and 3) develop na-

tional and regional collaboration. For research acti-

2024 CANCER Supplement October 15, 2006 / Volume 107 / Number 8

vities, the objectives were to 1) develop pilot pro-

jects, 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 pro-

grams for junior faculty, pre- and postdoctoral stu-

dents, and interns; and 2) develop extramural

collaborative training opportunities. To raise aware-

ness, the objectives were to 1) develop communica-

tion products or channels promoting Redes En Accion

activities and 2) develop multilevel public education

activities raising cancer awareness among Latinos.

Network DevelopmentNational and regional infrastructureTo coordinate activities of Redes En Accion, oversight

functions were built into a national/regional infra-

structure. The National Network Center (NNC) pro-

vided overall direction for Redes activities, which

were carried out by staff of 6 Regional Network Cen-

ters (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 DatabaseFrom the inception of the Redes En Accion program,

an ongoing task was the compilation of data regard-

ing 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 Accion Resource Partner-

ship Directory includes names, titles, addresses, and

other demographic information, as well as descrip-

tions of partners’ research activities, training/educa-

tion opportunities, and public education/outreach

programs involving cancer and Hispanics. The pur-

pose 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 CollaborationA central facet of the Redes En Accion network devel-

opment mission was to develop collaborative re-

lationships 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.

ResearchPilot projectsA 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 self-

identified Hispanic investigators and focus on can-

cer-related issues among Hispanic/Latino popula-

tions, 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 opportu-

nities for the $50,000 pilot grants were offered twice

annually from years 2 through 4.

Extramural collaborative researchThe existence of an increasingly extensive network of

potential partners and collaborators over the course

of the Redes En Accion 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 Accion con-

ducted a process of issue identification and recom-

mendation prioritization that included 4 basic steps:

1) eliciting guidance of a national ‘experts commit-

tee’ of authorities in Latino health, and in particular,

cancer health; 2) receiving input from regional ‘advi-

sory committees’ serving the RNCs (composed of

similar ‘experts’ in the different regions of the coun-

try); 3) soliciting input from a broad range of Latino

cancer health stakeholders throughout the United

States via a key opinion leaders survey; and 4) asses-

sing the data from this key opinion leader survey for

synthesis into a final summary document.

Redes En Accion surveyed 624 key opinion lead-

ers 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. Accord-

ing to Redes En Accion goals and objectives, recommen-

Hispanic Participation in Cancer Research/Ramirez et al. 2025

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 can-

cer research, training, and awareness with Latinos;

and 2) physicians’ knowledge, attitudes, and prac-

tices regarding cancer education, screening, and care,

as well as their cultural competence in caring for and

communicating with Latinos, Redes En Accion con-

ducted a nationwide survey with a randomly selected

sample of 2000 physicians. Using the Physician Mas-

ter File Database of the American Medical Associa-

tion (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 pur-

pose of sampling. Inclusion criteria included physi-

cians 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 phy-

sicians by region (75 each) and fewer gynecologists

(50 each). All practicing medical oncologists, self-

identified as Latino, were also included in the sam-

ple. 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 use-

ful for raising physician and public awareness of the

importance of specific cancer education and research

issues.

TrainingJunior faculty, pre- and postdoctorates, and internsThe education component of Redes En Accion pro-

moted 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 sup-

ported 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 Accion 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 manu-

script for publication to an academic peer-reviewed

journal.

For pre- and postdoctoral trainees, Redes En

Accion’s goal was to serve as a facilitator in pairing

individuals of Hispanic heritage with ongoing re-

search projects targeting cancer in Hispanic popula-

tions. Trainees were expected to secure their own

funding through an individual grant or ongoing re-

search 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 10-

week periods during Years 2-5, and the Redes En

Accion network goal was to train 20 interns overall.

The RNCs provided financial support, mentoring,

and guidance in preparation for application of post-

graduate education in medicine and/or public health.

Extramural collaborative trainingAs with Redes En Accion’s ‘extramural research’ pro-

gram, the project also sought ‘extramural training’

opportunities; that is, activities that would provide

Latino cancer training experiences outside the estab-

lished goals of training junior faculty, pre- and post-

doctoral individuals, and student interns. The goal

was to establish strong collaborative relationships

with both national and regional training programs.

AwarenessRedes En Accion communication channelsOngoing communication with partners and the pub-

lic has been necessary to ensure that interested audi-

ences are kept abreast of Redes En Accion activities.

Primarily through the Redes Web site (www.redes-

enaccion.org) and newsletter (the Redes Report), infor-

mation has been disseminated on research activities,

training opportunities, cancer public education efforts,

and related activities of the network.

Public Education ActivitiesTo aid cancer prevention and control efforts, particu-

larly within communities, Redes En Accion has devel-

oped 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 pro-

gram’s variety of publications, particularly the Buena

Vida series of bilingual magazine-style print pieces

and a book titled Nuestras Historias: Mujeres Hispa-

nas Sobreviviendo el Cancer del Seno (Our Stories:

Hispanic Women Surviving Breast Cancer). The Buena

2026 CANCER Supplement October 15, 2006 / Volume 107 / Number 8

Vida magazine series is a theory-based, colorful,

bilingual publication designed for a 10th grade read-

ing level. Each magazine received extensive formative

development involving focus groups and expert re-

view. Another major component of the cancer aware-

ness 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 produc-

tion company. In addition, RNC staff have raised cancer

awareness through various approaches, including pro-

fessional presentations and conferences, community

events, and CIS communication activities.

RESULTSNetwork DevelopmentNational and regional infrastructureThe Redes En Accion coordinating center, the NNC,

manages network communication and reporting sys-

tems, oversees the standards and submission proce-

dures 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 Commit-

tee (NSC) and is responsible for convening an annual

NSC meeting, which serves to identify and adjust prio-

rities and guide public education, scientific training,

and research project development. The diverse com-

position of the NSC is reflected by membership repre-

sentation of academic institutions, federal and private

entities, and various community-based organizations

representing over 2100 community groups with a com-

bined 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 indivi-

duals in the training program, and provide linkages

for development of research projects. To ensure com-

munity participation and collaboration with local

academicians and researchers, a Regional Commu-

nity 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 databaseThrough the RNCs, Redes En Accion has established

numerous formal linkages between academic institu-

tions and the diverse Hispanic communities within

the United States. Of the 1846 partners in the part-

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 pro-

grams, designing surveys, providing input in commu-

nity health agenda efforts, and providing information

on cancer programs for the Redes newsletter and

Web site.

National and regional collaborationNumerous national and regional alliances have

grown out of the initial Redes En Accion SPN pro-

gram, resulting in cooperative arrangements for re-

search, 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 encour-

aged by the NCI with its CIS has been extremely

fruitful in developing cancer education activities. For

example, the CIS coproduced Redes En Accion’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 pro-

vided phone counseling for a Redes-sponsored study

that tested different clinical trial recruitment strate-

gies among Hispanics in South Texas.

National Hispanic Medical Association. As a major

partner of Redes En Accion, the National Hispanic

Medical Association (NHMA) regularly promotes

Redes program goals and activities at professional

events; participates in Redes planning meetings; pro-

vides input to design of program activities; promotes

Redes research, training, and awareness goals at

NHMA-sponsored events; and distributes Redes news-

letters to its membership.

Susan G. Komen Breast Cancer Foundation. With a

shared goal in the battle against breast cancer, Redes

En Accion and the Komen Foundation have often

joined forces, partnering in community-based breast

health initiatives to address issues confronting His-

panic women. Investigations have included the Psy-

chosocial Study of Breast Cancer Survivorship and

Genetic Testing among Breast Cancer Registry Mem-

bers, Breast Cancer Education Materials and Pro-

grams Development, and Nuestras Historias Mujeres

Sobreviviendo el Cancer del Seno (Our Stories: Latinas

Surviving Breast Cancer).

Hispanic Participation in Cancer Research/Ramirez et al. 2027

Hispanic/Latino Genetics Community Consultation

Network. The Hispanic/Latino Genetics Community

Consultation Network is an effort of Redes En Accion

to identify and prioritize genetics issues of particular

interest to Hispanic populations. This activity under-

scores 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 ulti-

mate goal is to obtain a better understanding of

issues specific to Hispanic populations that will be

translated into culturally sensitive and tailored inter-

ventions 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 ser-

vices and competence of providers, 2) shortage of

Hispanic health professionals, and 3) nonreduc-

tionist education strategies and nondirective coun-

seling

� professional education, including 1) low minority

enrollment in basic science and graduate pro-

grams, 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 pri-

ority issues were also developed by summit partici-

pants.

ResearchPilot projectsUnder 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 Accion research-

ers reviewed more than 50 projects, providing gui-

dance 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 researchIn addition to the pilot projects, Redes En Accion-

related 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 Accion re-

searchers have directed or participated in—through

subcontracts or shared resources—more than 80 new

and/or ongoing cancer projects. Fifteen of those re-

search projects—totaling more than $5 million in

funds—have been initiated by the NNC, while others

have been generated by Redes En Accion researchers

at the initiative’s regional sites.

Nationwide surveys

Key opinion leader survey. Of the 624 participants

who participated in Redes En Accion’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 aca-

demic institutions and 52% were from community-

based organizations. The majority of participants

were female (68%) and aged 40 and older (64%). Of

the Hispanic participants, 41% were Mexican Ameri-

can, 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 sur-

vey conducted by Redes En Accion, which sought in-

formation from physicians (primarily Hispanics),

showed that most respondents were male, and Latino

physicians who participated were younger than non-

Hispanics and more likely to be foreign born. Com-

pared with non-Hispanic physicians, Latino physi-

cians were less likely to be in private practice, and

2028 CANCER Supplement October 15, 2006 / Volume 107 / Number 8

typically saw more Medicaid and Hispanic patients

but similar proportions of African American and

Asian patients.

Table 3 shows that breast, cervix, lung, and co-

lon/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 cancer-

related issues of greatest significance to cancer pre-

vention 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 His-

panic 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 sum-

mary recommendations for a national Hispanic can-

cer control agenda, the Redes En Accion 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 can-

cer, 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 recommen-

dations for cancer prevention and control. In addi-

tion, 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) pros-

tate, 6) liver, and 7) stomach.

TrainingJunior faculty, pre- and postdoctorates, and studentsRedes En Accion 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 fac-

ulty 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. Train-

ees have participated in a wide variety of research

and training projects, with close mentoring relation-

ships 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 trainingThe 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 Accion has been instrumental in the edu-

cation experiences of more than 30 pre- and post-

doctoral 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 facili-

tate leadership training seminars on tobacco and

TABLE 1Key Opinion Leader Survey: Most Important Cancer Issues(n ¼ 624 Mean Rank)

Cancer issue Rank Mean SD

Access to cancer screening and care 1 3.01 1.94

Tobacco 2 2.52 2.09

Patient/doctor communication 3 1.48 1.76

Nutrition 4 1.38 1.74

Risk communication 5 1.37 1.74

Physical activity and weight management 6 1.05 1.58

Alcohol 7 0.98 1.56

Sexual practices 8 0.78 1.49

Occupation and environment 9 0.69 1.33

Quality of life 10 0.54 1.17

Clinical trial or medical study participation 11 0.49 1.12

Infectious agents 12 0.47 1.17

Cancer survivorship 13 0.34 0.97

Genetic testing and education 14 0.18 0.74

TABLE 2Key Opinion Leader Survey: Most Important Cancer Sites(n ¼ 624 Mean Rank)

Cancer site Rank Mean SD

Breast 1 2.32 0.97

Cervix 2 1.09 1.17

Lung 3 0.98 1.14

Prostate 4 0.69 0.92

Colon/rectum 5 0.68 0.88

Liver 6 0.17 0.56

Stomach 7 0.14 0.50

Hispanic Participation in Cancer Research/Ramirez et al. 2029

alcohol control to more than 350 local and regional

Hispanic opinion leaders.

AwarenessRedes En Accion communication channels

Web site. The Redes En Accion 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 Accion 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 cam-

paign, 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 recruit-

ment to specific studies funded by NCI. Four sepa-

rate video PSAs (30-s spots) were created for

television and 8 (60-s) were developed for radio. In

addition, information from the PSAs was incorpo-

rated into print advertisements, which were dissemi-

nated 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 down-

loaded at www.redesenaccion.org). Each PSA pre-

sents dramatic, cultural themes to convey the

importance of learning more about clinical trials.

TABLE 3Physicians Survey: Most Important Cancer Sites (n = 742)

Cancer site

All Latinos Non-Hispanic whites

Rank Mean SD Rank Mean SD Rank Mean SD

Breast 1 1.74 0.79 1 1.72 0.81 1 1.76 0.76

Cervix 2 1.97 0.95 2 1.94 1.00 3 1.97 0.89

Lung 3 2.06 1.03 3 2.26 1.11 2 1.93 0.90

Colon/rectum 4 2.29 0.78 4 2.30 0.82 4 2.31 0.75

Prostate 5 2.68 1.01 5 2.62 1.05 5 2.60 3.05

Other 6 3.35 2.40 6 3.59 2.32 6 2.65 0.85

Liver 7 3.89 1.91 7 4.04 2.03 7 3.47 1.66

Stomach 8 4.27 2.06 8 4.32 2.19 8 3.91 2.07

TABLE 4Physicians Survey: Most Important Cancer Issues (n = 742)

Cancer issue

All Latinos Non-Hispanic whites

Rank Mean SD Rank Mean SD Rank Mean SD

Tobacco 1 1.76 1.19 1 1.99 1.27 1 1.59 1.08

Cancer care/screening access 2 2.61 1.30 3 2.40 1.32 2 2.78 1.26

Physical activity 3 2.96 1.26 5 3.03 1.35 3 2.90 1.22

Other cancer issues 4 3.00 1.61 2 2.20 1.79 12 4.00 1.00

Sexual practices 5 3.11 1.28 6 3.11 1.32 4 3.12 1.24

Nutrition 6 3.17 1.37 4 3.03 1.33 7 3.36 1.37

Alcohol 7 3.24 1.26 8 3.18 1.26 5 3.33 1.24

Infectious agents 8 3.28 1.27 7 3.16 1.30 6 3.34 1.24

Patient/doctor communication 9 3.45 1.36 9 3.18 1.38 9 3.71 1.30

Risk communication 10 3.56 1.25 10 3.49 1.38 8 3.63 1.10

Occupation and environment 11 3.69 1.19 12 3.62 1.09 10 3.72 1.23

Cancer survivorship 12 3.73 1.26 14 3.74 1.41 11 3.92 1.00

Genetic testing/education 13 3.81 1.36 11 3.54 1.33 14 4.45 1.04

Clinical trial participation 14 4.00 1.64 13 3.64 1.22 15 5.60 1.95

Quality of life 15 4.07 1.33 15 3.93 1.39 13 4.30 1.16

2030 CANCER Supplement October 15, 2006 / Volume 107 / Number 8

The video PSAs earned Redes En Accion 2 Telly

Awards for creative quality. The CIS approved all

content and concept pretesting involved 150 shop-

ping 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 Accion’s book focusing on

Latina breast cancer survivors, titled Nuestras Histor-

ias: Mujeres Hispanas Sobreviviendo el Cancer del

Seno (Our Stories: Hispanic Women Surviving Breast

Cancer), has received numerous awards from general

communication and health information organiza-

tions. The book, produced in full color and written in

Spanish and English, relates the Hispanic breast can-

cer experience through the first-person accounts of

Latina breast cancer survivors. It was produced with

support of the Susan G. Komen Breast Cancer Foun-

dation’s San Antonio Affiliate, the San Antonio Can-

cer 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 pub-

lications, which are 24-page, full-color, Spanish/Eng-

lish language, culturally tailored magazine-style print

pieces. The Buena Vida publications use actual His-

panic 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 distrib-

uted through cancer organizations, community events,

support groups, and other channels.

Professional and community events. Staff of the

National and RNCs have raised cancer awareness

through more than 1400 community events and pro-

fessional 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 communica-

tors, community-based organizations, and the media.

DISCUSSIONOne of the major achievements of the Redes SPN

program, development of the Redes En Accion Latino

Cancer Report—Summary Recommendations for a

National Hispanic/Latino Cancer Control Agenda, is

an outgrowth of the extensive survey research con-

ducted by the initiative. The report represents 4 years

of research and prioritization and the input of hun-

dreds of scientists, health care professionals, leaders

of government agencies and professional and com-

munity-based organizations, and other stakeholders

in Hispanic health. Besides the 624 key opinion lead-

ers and 742 physicians surveyed nationwide, the pro-

cess included participation by Redes En Accion’s NSC

and 6 Regional Community Advisory Committees. In

addition to assisting Redes En Accion in setting pro-

gram 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 possi-

ble. 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 parti-

cipants in the 2 major national surveys (key opinion

leader survey and Hispanic physicians survey) there

was agreement on the main priorities. It is not sur-

prising that access to health services ranked at the

top (first for opinion leaders and second for physi-

cians), as Hispanic populations are among those that

suffer most from disparities in the cost and avail-

ability of care.11 It is important to note that com-

munication barriers were also identified as part of

the access problem and that research and educa-

tion 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

TABLE 5Redes En Accion Training Program Results

Category Funded Unfunded Total

Junior faculty 22 13 35

Pre-/postdoctorate NA 24 24

Interns 27 27 54

Other NA 18 18

Total 49 82 131

Hispanic Participation in Cancer Research/Ramirez et al. 2031

Accion 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 compre-

hensive mass media advertisement campaign). In

regional research sites, Redes investigators have con-

ducted several tobacco-related initiatives, such as

Using Tobacco Industry Marketing Research to De-

velop New Tobacco Control Interventions for Young

Adults in the Northwest Region, and Smoking Preven-

tion for Latino Middle School Students in the South-

west Region. In addition, pilot research projects at the

regional sites have included studies testing nicotine

dependence and pharmacotherapy methods, improv-

ing Hispanic physician tobacco-related communica-

tion with patients, and promoting smoking cessation

practices of Latino smokers.

Findings of both national surveys provided the

basis for development of the Redes En Accion Latino

Cancer Report—Summary Recommendations for a

National Hispanic/Latino Cancer Control Agenda,

and helped guide Redes En Accion in its activities

promoting Latino cancer research, training, and pub-

lic 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 recog-

nize 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 pro-

motion and disease prevention, health professionals’

education and training, public funding for biomedi-

cal 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 extre-

mely 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 impor-

tance 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 leader-

ship of Redes En Accion (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 His-

panic/Latino Genetics Community Consultation Net-

work 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 pres-

tigious event, Redes researchers conducted other

activities addressing genetics issues. For example,

Redes En Accion partnered with the Cancer Genetics

Network, another national, NCI-funded program that

aims to increase minority participation in recruit-

ment 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 popu-

lation groups will not be well understood and that

medical benefits to these populations will be less sig-

nificant 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 par-

ticipation in cancer research was not identified as a

priority by key opinion leaders. However, more His-

panic involvement is clearly needed in both basic

research and clinical trials. To address this need,

Redes En Accion 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 Accion, in a landmark collaboration with 4 national

SPN programs representing Native American, African

American, Asian American, and Appalachian popula-

tions, 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 genet-

ics and clinical trial participation.

ConclusionsAlthough Redes En Accion’s SPN program has met its

goals, more work is needed. As science advances,

participation among all ethnic groups—from research-

ers to communities—is vital. In addition to the

2032 CANCER Supplement October 15, 2006 / Volume 107 / Number 8

resources provided through the original grant, Redes

En Accion has expanded its impact through strategic

leveraging across all its sites by garnering an addi-

tional $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 stake-

holders in Hispanic cancer control. This network can

continue to yield similar results if it is properly sup-

ported and sustained in the years to come.

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