National Cancer Institute

Catalyzing Trans-disciplinary 

Regional Partnerships to Eliminate 

Cancer Health Disparities

A Report from Cancer Health Disparities Summit 2007

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health

Cancer Health Disparities Summit 2007 Report i

ii Letter From the Directors

iii Letter From the Summit Planning Committee

iv Acknowledgments

1 Executive Summary

2 Concurrent Sessions

2 Ancestry Informative Markers: Genotyping as a Cancer Disparities 

Research Tool

4 Clinical Trials Education and Outreach: Strategies for Addressing 

Health Disparities in Medically Underserved Communities

8 Beyond Cowboys and Camels: A Community Networks Program Partnership

to Examine Tobacco Messages and Media Exposure to the Underserved

11 Patient Navigation in the Field

13 Culturally Competent Education/Outreach Activities: What’s Working 

in Communities

18 Health Disparities in the News: Getting the Word Out

20 Key Elements: Building and Upholding Successful Programs

20 Collaborations and Partnerships

21 Community Engagement

22 Managing and Sustaining Programs

23 Communications and Bioinformatics

24 Training

26 Appendix A: Summit Agenda

28 Appendix B: Workshop Descriptions

28 Collaborations and Partnerships

29 Community Engagement

30 Managing and Sustaining Programs

30 Communications and Bioinformatics

31 Training

33 Appendix C: Glossary of Acronyms

34 Appendix D: Participating Programs

Table of Contents
ii Cancer Health Disparities Summit 2007 Report

The Cancer Health Disparities Summit 2007 (Summit ’07) provided a collaborative environment for 

researchers, community members, and health care professionals to promote cross-fertilization and 

resource sharing to address the elimination of health disparities. In planning for the Summit, we were 

pleased to bring together representatives across the National Cancer Institute, and also, from the National 

Center for Research Resources and the National Center on Minority Health and Health Disparities.

Building on the previous year’s meeting, Summit ’07 focused on the next steps in developing strategies 

to implement the recommendations from Summit ‘06, including increasing the sharing and utilization 

of resources in geographic regions and coordinating multiple research collaborations. Summit ‘07 

outlined a range of strategies to guide programs, emphasized the need for greater collaboration, and 

drew attention to opportunities for developing partnerships within regions.

The Summit ’07 report will be disseminated to other agencies and organizations working with public 

health professionals and the community in advancing efforts to reduce and eliminate health disparities. 

The report and conference resources are also available at: http://www.cancermeetings.org/

CHDSummit07.

We thank you for your continued support and look forward to seeing you in 2008.

Sincerely,

Sanya A. Springfield, Ph.D.

Director

Center to Reduce Cancer 

Health Disparities

National Cancer Institute

Barbara Alving, M.D.

Director

National Center for 

Research Resources 

John Ruffin, Ph.D.

Director

National Center on Minority 

Health and Health Disparities 

Letter From the Directors
Cancer Health Disparities Summit 2007 Report iii

Summit ’07, held July 16-18, 2007 in Bethesda, MD was a jointly co-sponsored meeting by the 

National Cancer Institute (NCI), the National Center for Research Resources (NCRR) and the National 

Center on Minority Health and Health Disparities (NCMHD). The overall theme for Summit 2007 was 

Catalyzing Trans-disciplinary Regional Partnerships to Eliminate Cancer Health Disparities. The goals 

were to:

n Facilitate basic, clinical and community-based research collaborations within broad geographic 

regions across cancer health disparities research, training, education and outreach programs;

n Share best practices that will assist programs in addressing research and infrastructure needs, 

gaps analysis, areas of strength, and next steps to strengthen regional partnerships; and

n Identify critical elements required to develop and sustain regional capacity-building approaches.

We convened a Cancer Health Disparities Summit 2007 Planning Committee with individuals from the 

three Institutes/Centers representing large-scale NCI- NCRR- and NCMHD-funded research programs 

focused on eliminating health disparities. The Summit objectives were to:

n Capture snapshots of lessons learned and strategies used to overcome barriers in meeting 

research aims;

n Engage programs in developing additional comprehensive geographic strategies from broadly 

defined to more specific regions to eliminate cancer health disparities; and

n Develop tangible and comprehensive expectations of programs to increase collaborations and 

share resources.

At Summit ‘07, we welcomed over 750 attendees to participate in plenary sessions, concurrent 

sessions and workshops, debriefing sessions and poster/networking sessions. Participants interacted 

with other researchers, community partners and health professionals to share successful program 

strategies, accomplishments and challenges related to: Collaborations and Partnerships, Communications and Bioinformatics, Community Engagement, Managing and Sustaining Programs, and Training.

We appreciate the support and participation of the various Centers, Divisions and Offices throughout 

NCI, NCRR and NCMHD. We especially want to commend all of the planning members for their diligent 

endeavors to make Summit ‘07 a success.

Sincerely,

Tarsha McCrae, M.P.H., CHES

NCI

Shelia McClure, Ph.D.

NCRR

Francisco Sy, MD, DrPH

NCMHD

Letter From the Summit 

Planning Committee

iii
iv Cancer Health Disparities Summit 2007 Report

An endearing thank you to the following individuals for the participation in 

the overall planning of Cancer Health Disparities Summit 2007:

Cancer Health Disparities Summit 07 Planning Committee Co-Chairs

Tarsha McCrae, Center to Reduce Cancer Health Disparities, NCI

Shelia McClure, Division of Research Infrastructure, NCRR

Francisco Sy, Community-Based Participatory Research, NCMHD

Planning Committee Members

Jamelle Banks, Office of Science Planning and Assessment, NCI

Dionne Burt, Center to Reduce Cancer Health Disparities, NCI

Kenneth Chu, Center to Reduce Cancer Health Disparities, NCI

Leslie Cooper, Center to Reduce Cancer Health Disparities, NCI

Roland Garcia, Center to Reduce Cancer Health Disparities, NCI

James Hadley, Office of Liaison Activities, NCI

Kimberly Henderson, Center to Reduce Cancer Health Disparities, NCI

Belinda Locke, Center to Reduce Cancer Health Disparities, NCI

Francis Mahaney, Center to Reduce Cancer Health Disparities, NCI

Worta McCaskill-Stevens, Division of Cancer Prevention, NCI

Sonja Roberson, Division of Extramural Activities, NCI

Shobha Srinivasan, Division of Cancer Control and Population Sciences, NCI

Fred Taylor, Division of Research Infrastructure, NCRR

Mary Ann Van Duyn, Center to Reduce Cancer Health Disparities, NCI

Rosemary Wong, Division of Cancer Treatment and Diagnosis, NCI

Special Acknowledgments

NOVA Research Company

Office of Communications, NCI

Acknowledgments
Cancer Health Disparities Summit 2007 Report 1

On July 16-18, 2007, the National Cancer Institute (NCI) partnered with the National Center for 

Research Resources (NCRR) and the National Center on Minority Health and Health Disparities 

(NCMHD) to host the Cancer Health Disparities Summit 2007: Catalyzing Trans-Disciplinary Regional 

Partnerships to Eliminate Cancer Health Disparities. The meeting brought together more than 

750 researchers, public health professionals, and community health educators with an interest in 

eliminating cancer health disparities. Attendees participated in plenary and breakout sessions and an 

interactive grantee poster session.

Several Summit ‘07 plenary sessions featured presentations by grantees who have implemented 

successful program strategies related to the following key elements:

n Collaborations and Partnerships

n Communications and Bioinformatics

n Community Engagement

Following the presentations, Summit participants were organized into groups by geographic region—

Northeast, Southeast, Central, and West—to discuss challenges and solutions related to these 

elements. The discussion outcomes were shared during plenary debrief sessions.

In another plenary session, Summit attendees were informed about potential funding opportunities 

through various NCI-, NCRR-, and NCMHD-supported programs. Participants also heard from a panel 

of media experts regarding the importance of and strategies for interfacing with members of media 

about health disparities.

A new feature of the Summit ‘07 agenda was concurrent small group sessions devoted to topics of 

special interest to meeting participants. These included:

n Ancestry Informative Markers: Genotyping as a Cancer Disparities Research Tool;

n Clinical Trials Education and Outreach: Strategies for Addressing Health Disparities in Medically 

Underserved Communities;

n Beyond Cowboys and Camels: A Community Networks Program Partnership to Examine Tobacco 

Message and Media Exposure to the Underserved;

n Patient Navigation in the Field; and

n Culturally Competent Education/Outreach Activities: What’s Working in Communities.

Presentations by invited speakers were followed by questions and comments from Summit 

participants.

Participants also took advantage of the opportunity for one-on-one interactions with other attendees 

at the Grantee Poster and Networking Session, which featured posters on numerous aspects of cancer 

health disparities prepared by grantees from various NCI, NCMHD, and NCRR programs.

A detailed summary of Summit ’07 and slides from plenary presentations are available at 

http://www.cancermeetings.org/CHDSummit07/index.cfm.

Executive Summary

n Managing and Sustaining Programs

n Training

1
2 Cancer Health Disparities Summit 2007 Report

Ancestry Informative Markers: Genotyping as a Cancer 

Disparities Research Tool 

The disparities in cancer burden between individuals of different racial and/or ethnic backgrounds 

have been well established. Some of these disparities persist even when factors such as socioeconomic 

status and access to high-quality care have been taken into account, suggesting that genetics and 

biology may play a role.

In the past, researchers have depended on “self-reported race” to try to identify relationships between 

race or ancestry and disease. This approach assumes that individuals are knowledgeable and open 

about their ancestry. However, studies have shown that this is often not the case, particularly in the 

United States where there has been extensive mixing of different racial and ethnic groups over the 

years. As a result, individuals who identify themselves as a particular race often actually have mixed 

ancestry without even being aware of it.

To help more accurately determine people’s ancestry, researchers have begun developing and using 

ancestry informative markers (AIMs). AIMs are variations in the genetic code that are commonly and 

predominantly found in people of one particular ancestry. For example, individuals of African ancestry 

may be more likely to have one form of a gene while individuals of European ancestry are more likely 

to have another form.

The goal of using AIMs is to be able to get a more accurate picture of an individual’s ancestry, rather 

than assuming that all individuals who identify themselves as one race are genetically similar. Being able 

to do this should help researchers more accurately identify genes that are associated with disease risk.

Concurrent Sessions

European Genetic Contribution in African-American Populations 

Living in Different Geographical Areas of the U.S.

References: Parra et al. AJHG 1998; Parra et al. AJPA 2002; Kittles et al. unpublished

Studies have 

shown that 

African 

Americans 

in the United 

States have 

from 3.5 to 35 

percent European 

ancestry.
Cancer Health Disparities Summit 2007 Report 3

Breast Cancer in 

African-American Women

Although African-American women have lower 

incidence rates of breast cancer, they have 

higher rates of mortality from this disease than 

their white counterparts. Although differences 

in access to and delivery of care contribute 

to these disparities, they do not fully account 

for them. Many researchers have begun to 

investigate whether differences in tumor biology 

may influence differences in disease outcomes. 

Studies have shown that African-American 

women tend to be diagnosed with breast cancer 

at younger ages than white women—

the median age for diagnosis is 62 for white 

women and 57 for African Americans. 

Furthermore, African-American women are at 

increased risk for so-called “triple-negative” 

breast cancers (little to no expression of 

estrogen receptor, progesterone receptor, or 

HER2), which are generally more aggressive 

than other types of tumors and less likely to 

.

respond to existing treatments. Interestingly, 

sub-Saharan African women develop breast 

cancer at even younger ages than African 

Americans and have a substantially higher 

proportion of tumors that do not express 

estrogen receptor. These data suggest an 

association between African ancestry and 

increased risk for certain types of breast 

cancer, but better methods and tools are 

needed to verify this correlation.

Presenters:

Lisa Newman, M.D., M.P.H., F.A.C.S., 

University of Michigan

Jill Barnholtz-Sloan, Ph.D., 

Case Comprehensive Cancer Center

Breast Cancer in African-American, Sub-Saharan African, 

and White American Women

45

57 62

Average Age at Diagnosis (years)

African

African

American

White

American

2:1

5:1

Incidence: Mortality Ratio

3:1

80%

60%

40%

20%

0%

Proportion with 

Stage III/IV

Proportion with 

High-Grade Tumors Proportion with 

ER-Negative Tumors Male Breast Cancer

Of the 3 billion 

nucleotides that 

make up the 

human genome, 

only 0.2 to 0.5 

percent 

(6 to 15 million 

nucleotides) 

vary between 

individuals
4 Cancer Health Disparities Summit 2007 Report

Clinical Trials Education 

and Outreach: Strategies 

for Addressing Health 

Disparities in Medically 

Underserved Communities

Clinical trials are research studies that cancer 

patients undergo to find out whether promising 

approaches to cancer prevention, diagnosis, 

and treatment are safe and effective. Less than 

5 percent of all eligible people with cancer 

participate in clinical trials. Although the medically 

underserved experience a disproportionate cancer 

burden, they are even less likely to participate 

in clinical trials. The lack of participation by all 

groups has led to incomplete research findings.

There are many factors that hamper clinical trial 

participation.

For patients, some of these factors include:

n Lack of awareness about clinical trials

n Lack of access to clinical trials

n Fear/suspicion of research

n Cost

n Unwillingness to go against a physician’s wishes

For physicians, some of these factors include:

n Lack of awareness of appropriate clinical trials

n Unwillingness to “lose control” of a 

patient’s care

n Belief that standard therapy is best

n Concern that clinical trials add administrative 

burdens

There are four different phases of clinical trials. 

These trials include different numbers of people 

and address different types of questions. 

There are potential benefits and risks to 

participating in clinical trials.

Potential benefits include:

n Participants receive at a minimum the best 

standard treatment

n If a new intervention works, participants may 

be among the first to benefit

n Patients have a chance to help others and 

improve cancer care

Potential risks include:

n New treatments or interventions may not end 

up being better than, or even as good as, 

standard care

n Even if a new treatment has benefits, it may not 

work for every patient

n Health insurance and managed care providers 

do not always cover clinical trial participation

Phase No. of 

Participants

Questions Asked

I 15-30 What dosage is safe?

How should treatment be given?

How does treatment affect the body?

II <100 Does treatment do what it is 

supposed to?

How does treatment affect the body?

III 100 to 

thousands

How does the new treatment 

compare with the current 

standard of care?

IV 100 to 

thousands

What is the long-term safety and 

effectiveness of the new treatment 

(usually takes place after drug is 

approved)?

Less than 5 percent 

of all eligible 

people with cancer

participate in 

clinical trials.
Cancer Health Disparities Summit 2007 Report 5

Program Examples of Clinical 

Trials Education and Outreach

Community Networks Program: Native 

People for Cancer Control Art for Cancer 

Program

The Art for Cancer program worked with a 

number of Native artists from across the country 

to design posters that utilize Native American 

art and contain information about cancer, 

including breast, cervical, colorectal, and 

lung cancers. The program also developed a 

brochure that provides background on types of 

clinical trials, risks, benefits, and barriers, and 

features a list of questions patients should ask 

when deciding whether to participate in a trial. 

Research has shown that when Native Americans 

participate in research, their primary motivation 

is the opportunity to benefit their community. 

Therefore, the brochure emphasizes this benefit 

of participating in clinical trials.

Visit the Native People for Cancer Control Web site 

at http://depts.washington.edu/uwccer/.

Cancer Disparities Research Partnership 

Program: Singing River Hospital System

Singing River Hospital System (SRHS) has 

developed a system and tools to improve accrual 

of underserved populations to clinical trials. A 

Clinical Research Associate reviews all new SRHS 

patients prior to their first scheduled visits. If the 

patient is potentially eligible for an open clinical 

trial, a blue sheet is attached to the patient’s 

record to alert medical staff. A green Patient Fast 

Fact Sheet (PFFS) is also attached to the patient’s 

record. The PFFS is designed as an introduction 

to a specific clinical trial and is used by the 

physician to initiate discussion regarding the 

option of clinical trial participation to the patient 

during treatment planning consultation. All PFFSs 

are Institutional Review Board (IRB)-approved 

at the time of study activation. Patients are also 

given a pamphlet on clinical trials. If a patient 

expresses interest in clinical trial participation, 

the patient’s physician works with clinical trial 

personnel to further evaluate eligibility. 

Once eligibility is verified, the informed 

consent process in initiated.

Find more information on SRHS at 

http://www3.cancer.gov/rrp/CDRP/srhs.html.

Project EXPORT: Carolina-Shaw 

Partnership for the Elimination of Health 

Disparities Project CONNECT

Project CONNECT was created to build relationships 

with communities in order to spur meaningful 

participation of minority and underserved 

populations in clinical trials. To begin, focus 

groups were conducted in four priority regions 

in North Carolina with a total of 30 AfricanAmerican ministers in order to gain insight into the 

low participation levels of minority/underserved 

populations in research. Using the information 

gathered through this process, Project CONNECT set 

out to develop an infrastructure to support a registry 

of potential minority clinical trial participants. The 

long-term goal is to build community networks to 

facilitate future clinical trials recruitment efforts. 

Project CONNECT maintains a private list of people 

who want to learn more about taking part in healthrelated studies. The list contains information such 

as contact information, age, race, and basic health 

status. Placing one’s name on the list is not a 

requirement or agreement to take part in any study. 

Community members have been recruited to sign up 

for the list using a variety of methods, including:
Cancer Health Disparities Summit 2007 Report

n Community outreach

n Current research studies

n Public databases

n Email announcements

n Internet

For more information on Project CONNECT, 

visit www.connect.unc.edu.

NCI Resources for Clinical 

Trials Education and Outreach

Clinical Trials Education Series

NCI developed the Clinical Trials Education Series 

(CTES) to help health care providers, patients, 

advocates, and others understand more about 

clinical trials. CTES resources are tailored to 

a variety of health literacy levels and some are 

available in Spanish. CTES consists of over 20 

resources in a variety of formats, including: 

brochures, workbooks, web-based courses, slide 

shows, videos, DVDs, CD-ROMs and booklets.

CTES also has a Trainer’s Guide, a train-thetrainer program for those interested in or tasked 

with organizing targeted education and outreach 

programs. The Trainer’s Guide includes diverse 

curricula and provides step-by-step instructions on 

how to conduct trainings.

To obtain free copies of CTES materials:

n Call 1-800-4-CANCER.

n Visit www.cancer.gov/publications.

To access electronic versions of many CTES 

resources, visit 

http://www.cancer.gov/clinicaltrials/learning/

clinical-trials-education-series.

6
Cancer Health Disparities Summit 2007 Report 7

Cancer Information Service

The Cancer Information Service (CIS) is made up 

of three components: the call center, the research 

group, and the Partnership Program. The Partnership Program is a nationally coordinated, regionally focused program committed to reaching 

minority and underserved populations that do not 

have adequate access to health information and 

services. Clinical trials are a major priority area of 

the program. Partnership Program staff are located 

in 15 regions representing the United States, Puerto 

Rico, and the Virgin Islands; service is provided to 

all 50 states. The Partnership Program works with 

organizations (rather than directly with the public) 

and provides support in a number of ways:

n Training

n Education and outreach support

n Assessments

n Media campaigns

n Presentation development

n Research

Presenters:

Steve Charles, M.F.A., 

Native People for Cancer Control, University 

of Washington

Maggie Clarkson, M.S., 

Cancer Disparities Research Partnership Program, 

Singing River Hospital System

Evelyn González, M.A., 

Cancer Information Service, NCI

Melissa Green, M.P.H., 

Project CONNECT, University of North Carolina

Ryan Morigeau, 

Native People for Cancer Control, 

University of Washington

Felicia Solomon, M.P.H., 

Office of Communications and Education, NCI

Sona Thakkar, M.A., 

Office of Communications and Education, NCI

Allison Zambon, M.H.S., 

NOVA Research Company

To reach your regional CIS office, call 1-800-4-CANCER.
Cancer Health Disparities Summit 2007 Report

Beyond Cowboys and Camels: 

A Community Networks Program 

Partnership to Examine Tobacco 

Messages and Media Exposure 

to the Underserved

The Tobacco Research Network on Disparities 

(TReND) is a collaborative effort between NCI 

and the American Legacy Foundation. The 

mission of TReND is to eliminate tobacco-related 

health disparities through transdisciplinary 

research that advances scientific knowledge, 

translates the scientific knowledge into practice, 

and informs public policy. For more information 

on TReND, visit http://cancercontrol.cancer.gov/

tcrb/trend/index.html.

One effort being conducted through TReND is the 

exposure to Tobacco-Related Messages and Media 

(TeRMM) project. TeRMM will investigate how 

people of diverse ethnic, racial, and socioeconomic 

groups are exposed to tobacco-related information 

with the goal of developing a set of valid measures 

of media and message exposure that can be used in 

future research and practice and can be applied to a 

range of populations and geographical areas. Several 

TReND members who are also Community Networks 

Program investigators are participating in TeRMM.

Implementation of the TeRMM project will take 

place in four phases:

n Phase I: Conduct focus groups to qualitatively 

explore exposure to tobacco-related messages.

n Phase II: Develop the TeRMM index based 

on the results of the focus groups and conduct 

cognitive testing of the index.

n Phase III: Validate the TeRMM index in a large 

national survey.

n Phase IV: Disseminate the index and related 

data to the tobacco control field.

Preliminary Results of TeRMM 

Phase I

TeRMM Phase I is being carried out by three 

Community Networks Programs (CNPs), each 

of which will conduct at least two focus groups. 

The University of Oklahoma CNP (OUCNP) will 

focus on Native Americans in Oklahoma, Redes En 

Acción: National Latino Cancer Research Network 

will focus on Hispanics in California, and the 

Massachusetts Community Network to Eliminate 

Cancer Disparities (MassCONECT) will collect 

information on blue-collar African Americans and 

whites in Massachusetts.

University of Oklahoma 

Community Networks Program

OUCNP has partnered with the Cherokee and 

Choctaw Nations using subcontracts. In addition 

to obtaining IRB approval from the University of 

Oklahoma for the program, IRB approval was also 

sought and granted from both Nations. Two focus 

groups will be held with each of these populations. 

The goal of 

TeRMM is to 

develop a set of 

valid measures 

of media and 

message exposure 

for application in 

future research.

8
Cancer Health Disparities Summit 2007 Report 9

Focus groups with the Cherokee Nation have been 

held and preliminary results are available.

Recruitment strategies include:

n Onsite recruitment at clinic/community center

n Word-of-mouth

n Paid incentive for completing demographic form

Preliminary results:

n Internet and television were the most common 

venues for message exposure. Younger 

participants reported higher television 

exposure than their older counterparts. 

Radio offered “background” exposure. Most 

participants reported seeing print media 

such as billboards and flyers; exposure to 

newspaper ads was reported exclusively 

among older participants.

n Messages encouraging tobacco use were 

encountered in places of purchase and in 

magazines.

n Messages discouraging tobacco use were 

encountered through television, billboards, 

and flyers. Anti-tobacco messages focused 

on both prevention and secondhand smoke 

exposure.

n Warning labels were overwhelmingly perceived 

as ineffective. Participants recommended 

larger fonts and front-of-pack placement to 

improve them.

n Other approaches recommended to 

discourage tobacco use included:

• Eye-catching messages that are direct and 

truthful (e.g., “Smoking will kill you”)

• Higher prices for tobacco products

• Positive messages that encourage patients

Visit the OUCNP Web site at 

http://w3.ouhsc.edu/oucnp/.

Redes En Acción

Redes En Acción has completed two focus groups 

with Spanish-speaking participants and has 

planned one additional focus group for Englishspeaking Latinos.

Recruitment strategies include:

n Partnering with community organizations

n Encouraging word-of-mouth communication

n Attending community coalition meetings

n Distributing of flyers at clinics and other 

public places

n Providing paid incentives for participation

Preliminary results:

n Participants almost exclusively access Spanishlanguage media, with Spanish-language 

television being the most popular. Younger 

participants reported watching almost twice 

as much television as older participants. 

Radio was used primarily as background 

entertainment.

n Pro-tobacco messages were most evident 

on television and large billboards on heavily 

trafficked streets, particularly near the liquor 

stores that are abundant in the neighborhood. 

Magazine and newspaper advertisements 

were also mentioned. Advertisements 

featured typical “Marlboro Man” scenes with 

glamorous people in beautiful settings.

n Participants reported varying reactions to 

pro-tobacco advertisements, including a desire 

to emulate characters, indifference, anger, and 

concern for family.

n Most participants recalled seeing more 

anti-tobacco than pro-tobacco messages in 

recent times.

n The most effective anti-tobacco ads focus 

on the harmful effects of tobacco on general 

health and during pregnancy as well as the 

danger of secondhand smoke. The use of 

strong images (e.g., skulls) was also viewed as 

effective. The majority of participants viewed 
Cancer Health Disparities Summit 2007 Report

warnings on pro-tobacco advertisements 

as ineffective.

n Participants suggested that anti-tobacco 

messages should be focused on smoking 

prevention and encouraging children to 

motivate their parents to quit using tobacco.

Visit the Redes En Acción Web site at 

http://www.redesenaccion.org/.

Massachusetts Community 

Network to Eliminate Cancer 

Disparities

MassCONECT partnered with the Boston Alliance 

for Community Health to recruit participants for 

four focus groups with African Americans in the 

Boston area.

Recruitment strategies include:

n Posting flyers through 11 neighborhood-based 

coalitions

n Local advertisements

n $25 compensation and $10 travel 

reimbursement

n Light dinner and refreshments

Preliminary results:

n Participants reported gathering news from 

local and national television outlets and 

newspapers. Some barriers to accessing these 

venues included cost, lack of credibility/trust, 

negative stories about particular populations, 

and outdated information.

n Advertising channels utilized by this population 

include word-of-mouth, coupons, transit 

advertisements, billboards, radio, and Internet. 

Effective attention-getting means cited were 

color, hip-hop music, and celebrities.

n Pro-tobacco messages were encountered from 

peers and family, in stores and gas stations,

on radio and television, in movies, 

in email newsletters from tobacco companies, 

on Internet pop-ups, at baseball games, in 

promotional advertisements with celebrities, 

and in music and music videos. Participants 

also noted that tobacco companies target 

different groups with packaging, products, 

and sponsorship in other industries.

n Messages discouraging tobacco use came 

in the form of cessation aids, personal 

experience with illness/death of a loved one, 

“Truth” advertisements, and images of others’ 

experiences with smoking. Warning labels 

were considered ineffective and too small to 

be read by many adults.

n Participants suggested using more young 

people, celebrities, and hip-hop artists to 

publicly discourage smoking. They also 

suggested discouraging stores and gas stations 

from displaying tobacco advertising.

n Participants reported seeing more messages that 

discourage smoking and receiving information 

from employers, newspapers, doctors, family, 

and the media about smoking cessation.

Visit the MassCONECT Web site at

http://www.hsph.harvard.edu/massconect/.

10
Cancer Health Disparities Summit 2007 Report 11

Patient Navigation in the Field

As patients enter health care systems for cancer 

diagnoses and treatment, many barriers can 

arise, particularly for those who are medically 

underserved. Some barriers that have been 

identified include lack of insurance, poor 

social support, inadequate coping styles, health 

beliefs, and low health literacy. Patient navigation 

programs have emerged as one way to address 

these barriers by assisting patients and their 

caregivers throughout the cancer continuum. 

Patient navigators:

n Identify client cases in need of navigation;

n Assess barriers to client care;

n Develop an action plan with the client to 

address barriers; and

n Track client through completion of care.

NCI created the Patient Navigation Research 

Program (PNRP) to support implementation and 

evaluation of patient navigation programs at nine 

sites across the United States. PNRP sites provide 

services to patients with abnormal findings or 

diagnosis of four screenable cancers—breast, 

colon, cervical, and prostate. Target populations 

include African American, Hispanic, Asian/Pacific 

Islander, American Indian/Alaska Native, and 

people of low socioeconomic status. Navigator 

types vary across the sites and include lay 

navigators as well as social workers and nurses. 

PNRP outcome variables include diminishing 

time from abnormal screening to diagnosis, time 

from diagnosis to completion of treatment, patient 

satisfaction, and cost-effectiveness.

For more information on the PNRP as well as 

individual PNRP sites, visit 

http://crchd.cancer.gov/pnp/pnrp-index.html.

Work Design and Social 

Network of the Patient 

Navigator

A study being conducted at the Boston University 

Medical Center is analyzing data collected across 

the nine PNRP sites to explore a number of 

questions:

• How do navigators allocate their time?

• What tasks do navigators perform?

• With whom do navigators interact to accomplish these tasks (e.g., patients, providers/care 

sites, family, friends, community resources)?

• Are certain interactions more effective 

than others?

Observations will be linked to patient outcomes 

to identify the most effective navigation strategies. 

The results will be compiled in a structured 

observation guide.

Presenters:

Laura Beebe, Ph.D., 

University of Oklahoma Community Networks 

Project

Josephine Crisostomo, M.P.H., 

MassCONECT, Dana-Farber Cancer Institute

Pebbles Fagan, Ph.D., M.P.H., 

Division of Cancer Control and Population 

Sciences, NCI

Sherrie Flynt Wallington, Ph.D., 

MassCONECT, Dana-Farber Cancer Institute

Anna Nápoles-Springer, Ph.D., 

Redes En Acción: National Latino Cancer Research 

Network, University of California, San Francisco

Donna Vallone, Ph.D., M.P.H.,

American Legacy Foundation

K. Vish Viswanath, Ph.D., 

MassCONECT, Harvard University and Dana-Farber 

Cancer Institute
Cancer Health Disparities Summit 2007 Report

Case Study #1: Denver Health 

Medical Center

A 61-year-old, homeless, alcoholic man presented 

with stage IV prostate cancer with metastases to 

the spine. The patient suffered with urinary tract 

infections, struggled to make copayments for 

twice-weekly hospital visits, and sometimes did not 

have enough to eat. The patient navigator helped 

the patient apply for a program that supplies 

prepared meals for cancer patients on a weekly 

basis. Social support was identified to provide 

financial assistance that has been used to purchase 

clothing and groceries and make copayments.

Although the patient did not initially want help, 

his attitude gradually changed as his needs began 

to be met. He is now more willing to ask for help. 

The patient navigator also coached the patient on 

treating the medical staff with respect, which has 

led to improvement of the patient’s relationship 

with medical staff.

Case Study #2: Moffitt Cancer 

Center

A 52-year-old Hispanic woman presented with 

an abnormal mammogram. The patient was not 

insured, did not speak English, was unable to 

read or write, and provided childcare for her 

grandchildren while other family members 

worked. She did not understand the meaning of 

the abnormal mammogram and had thus ignored 

the problem. A patient navigator visited the 

patient’s home, explained the abnormal results, 

and described what the patient needed to do.

The navigator helped arrange transportation 

and find alternative childcare for the patient’s 

grandchildren and also agreed to accompany 

the patient to her next doctor’s appointment. 

The navigator also met with the patient’s family 

in order to explain the cancer diagnosis and 

the need for further testing. The navigator also 

reassured the family that a cancer diagnosis does 

not mean certain death and described support 

that could be provided throughout treatment.

The navigator waited with the family during 

the patient’s mastectomy and made additional 

home visits after the surgery to explain follow-up 

treatment and give the family Spanish-language 

cancer information brochures. Throughout the 

process, the navigator worked with the patient to 

help her take a more active role in her own care. 

For example, the patient was encouraged 

to understand and answer basic questions 

(e.g., her name and birth date) in English. 

Over time, the patient’s confidence and 

self-esteem have grown tremendously.

Case Study #3: Eastern Boston 

Neighborhood Health Center

A 41-year-old Hispanic female presented with an 

abnormal Pap result and received a referral for 

a colposcopy. The patient spoke only Spanish, 

was illiterate, had no insurance, and lived with 

a brother on whom she depended for financial 

support. Numerous attempts by the patient navigator 

to contact the patient via phone and mail were 

unsuccessful; thus, the navigator met with the patient 

when she returned to the clinic for a follow-up 

appointment for an unrelated health issue. During 

the 1-hour meeting, the navigator learned that the 

patient had not understood what the doctor had told 

her and had decided to ignore the problem.

12
Cancer Health Disparities Summit 2007 Report 13

Culturally Competent 

Education/Outreach 

Activities: What’s Working 

in Communities

It is widely recognized that addressing health 

disparities experienced by racial/ethnic minorities 

and other medically underserved populations 

will require culturally competent interventions. 

Organizations and people in the community are 

well poised to contribute to the development of 

effective education and outreach efforts because 

they are intimately familiar with the culture of their 

fellow community members. 

Face-to-Face Strategies

Home Health Parties to Improve Cancer 

Screening Among Hispanics

Home health parties have been used to educate 

the medically underserved Hispanic population of 

the Yakima Valley of Washington State about the 

importance of cancer screening by the Hispanic 

Community Network to Reduce Cancer Disparities. 

These home-based cancer education discussions 

To address the barriers faced by this patient, the 

navigator made an appointment for the patient with 

a Spanish-speaking provider, provided a simplified 

explanation of the abnormal results, and made 

sure that an appropriate translator was available as 

necessary. The navigator also determined that the 

patient qualified for free medical care. The patient 

is currently undergoing treatment for moderate 

cervical dysplasia.

Case Study #4: American 

Cancer Society

A 64-year-old African-American female with a 

history of mental illness was diagnosed with 

endometrial cancer. The patient had significant 

trust issues and would not allow the medical staff 

to touch her on repeated visits. The doctor noted 

that the patient became upset and confrontational 

with family members, and it was decided that the 

patient navigator rather than a family member 

should accompany the patient on office visits. The 

patient navigator counseled the patient’s daughter 

about giving her mother a sense of empowerment 

and avoiding the use of scare tactics, accompanied 

the patient on multiple hospital visits, and assisted 

in moving the patient into active treatment.

Presenters:

Elizabeth Calhoun, Ph.D., 

University of Illinois at Chicago

Johanna Capo, 

Boston Medical

Jose Omar Esparza, M.A., 

Denver Health Medical Center

Phyllis Ferguson-Collum, M.S.W., 

American Cancer Society

Karen Freund, M.D., 

Boston University School of Medicine

Yolanda Sarmiento, 

H. Lee Moffitt Cancer Center

Home health 

parties have 

been used 

to educate 

medically 

underserved 

Hispanic 

populations.
Cancer Health Disparities Summit 2007 Report

are initiated by community members, and at least 

one attendee must match the screening guideline 

demographics for the chosen theme of the party 

(e.g., colorectal cancer). A binder of educational 

flipchart sheets is taken to the party along with other 

visual aids and screening resource guides that list 

where people can go for free and reduced-cost 

screenings (all printed in Spanish and English).

Two baseline surveys are conducted at each 

party. The first is for all attendees and collects 

information about cancer prevention knowledge 

and activities. The second is for attendees who 

meet screening guideline demographics regarding 

their behaviors, attitudes, and family history. A 

6-month follow-up survey is also conducted.

Over 250 parties have been conducted, reaching 

1,100 people. Initial findings indicate that 25 

percent of those meeting screening guidelines 

received screenings after the party. More than 25 

percent reported thinking about screening and 25 

percent asked their doctors about screening. 

Of those not already screened, more than 20 

percent were considering being screened and an 

additional 20 percent already had an appointment.

Story Mapping to Engage Community 

Partners

Story maps are one way to incorporate the 

community’s point of view into the conceptualization and implementation of research studies. They 

are primarily used to initiate dialogue, create 

focus, integrate perspectives, create experiential learning, and move a group toward a comprehensive view of an important problem. Integrating 

community input can help improve study design 

and increase the likelihood that a study will yield 

meaningful results.

Story maps are pictorial representations of multiple 

facets of a topic that can facilitate communication 

among people in different roles. The creation of a 

story map begins with broad themes and narrows 

to specific scenarios that trigger stories. It is an 

iterative, participatory process that generally 

includes five or more steps; the first and final maps 

often look very different from one another. Story 

maps were used to incorporate both community 

and university input into the creation of the South 

Carolina Cancer Disparities Community Network.

Image-Based Research

Disseminating Body & Soul to AfricanAmerican Churches in North Carolina

Body & Soul is an evidence-based wellness 

program for African-American churches that 

focuses on healthy eating and involves pastoral 

leadership and peer counseling. The Carolina 

Community Network to Reduce Cancer Disparities 

(CCN) set out to increase awareness of Body & 

Soul among African-American churches in North 

Carolina. A secondary goal was to mobilize many 

Network members to focus on a single initiative.

The Southeast region of NCI’s CIS trained two 

groups of volunteers on the Body & Soul program: 

community outreach specialists—communityacademic research coordinators who bridge 

research and community needs—and lay health 

advisors from historically black colleges and 

universities. Letters were sent to churches in 

targeted CCN areas and information sessions on 

Body & Soul were conducted in churches. Church 

14
Cancer Health Disparities Summit 2007 Report 15

responses were tracked via calls to the CIS tollfree number for further information and program 

materials. Post-information session surveys 

revealed several things, including:

n Seventy-six percent had not heard of Body & 

Soul prior to the information session

n Seventy-three percent said their church had 

an existing health ministry

n Fifty-nine percent strongly agreed that the 

content of the information session was relevant 

to their church’s mission

Six-month follow-up calls to churches indicated 

five churches were interested in implementing the 

Body & Soul program. Lessons learned include 

the need for a better means of assessing state- or 

county-level calls to CIS regarding Body & Soul; 

the need for improved marketing of the program 

and its information sessions; and sending letters to 

churches was not sufficient.

Using Photovoice and GIS Mapping as a 

Tobacco Educational Approach for AsianAmerican and Pacific Islander Youth

The WINCART—Weaving an Islander Network for 

Cancer Awareness, Research and Training—CNP 

at the University of California, Fullerton is 

exploring environmental influences on tobacco 

use in three Asian-American and Pacific Islander 

communities through the use of surveys, 

photovoice, and geographic information system 

(GIS) mapping techniques. Youth involved with a 

community-based organization in each community 

were trained to use photovoice to document 

influences on smoking behavior.

To collect place-based data, the project began 

with youth drawing maps of their communities. 

They were then given cameras and asked to 

photograph things they considered important and 

describe those images in words. Assessment of 

the narratives revealed that the youth recognized 

environmental influences on smoking behavior 

in their communities, with the top three being 

advertisements targeting teens (38 percent), 

cigarette sales in the community (32 percent), and 

litter and trash in the community (19 percent). 

Maps were created to plot the locations where the 

photos were taken, with each location color coded 

as a positive, negative, or mixed influence.

Photovoice is a form of community-based participatory 

research (CBPR) that can influence communitylevel decision making. Community members 

are using photos from this project to promote 

legislative change. In one community, a tobacco 

vendor licensing law was passed, and the other two 

communities are working to achieve the same result.

Breast Health: Shared Stories from 

Women in Our Hawaiian Community

The ’Imi Hale Native Hawaiian Cancer Network 

updated a 12-year-old American Cancer Society 

(ACS) breast health video targeting Native 

Hawaiian women. The updated version, entitled 

Breast Health, Shared Stories from Women in 

Our Hawaiian Community, was designed to 

meet the needs of health educators and empower 

viewers. Breast Health was filmed in Hawaii 

using real people (e.g., doctors, survivors, family 

members) and real stories. With $20,000 from the 

Susan G. Komen Breast Cancer Foundation and a 

Safeway Foundation grant to cover postproduction 

costs, enough film was shot for a 4-hour 

documentary. This was edited into a variety of 

public service announcements, which were aired 

by two Hawaiian television stations the week before 

Mother’s Day. A segment equivalent in length to a 

30-minute TV show aired in June.

The video’s dissemination plan is diverse and 

includes Native Hawaiian health care systems 
Cancer Health Disparities Summit 2007 Report

and other health centers and health care service 

providers, television stations, the Association of 

Hawaiian Civic Clubs, patient navigator trainings, 

conferences, a medical library, and partners such 

as ACS, CIS, the Lance Armstrong Foundation, and 

the Susan G. Komen Breast Cancer Foundation. 

Feedback on the video has been positive. Lessons 

learned include the importance of being clear 

about the take-home message (in this instance, 

the importance of early detection), having a 

backup plan (locations are not always ideal and 

schedules change), realizing that not all people 

are equally filmable (and cutting footage for 

those who do not work out), and relying on 

experts (including a professional film crew and 

using actual survivors who share their personal 

stories rather than read scripts). Breast Health

was awarded a Certificate of Merit in 2007 by the 

National Health Information Awards.

Web-Based Communications

Changing Physician Behavior with 

Web-Based Cancer Education

Several institutions in southeastern North Carolina, 

under the New Hanover Regional Medical Center 

site with the CDRP program, came together with 

the goal of increasing accrual of African-American 

cancer patients to radiation therapy clinical trials. 

One of many project activities directed toward this 

goal was the conduct of psychological research to 

examine factors that influence cancer treatment. 

Data were collected via a Health Awareness 

and Experiences Questionnaire. A total of 228 

interviews were analyzed.

Results indicated that those surveyed:

n Are uncertain about their likelihood of having 

cancer, the effects of surgery on cancer, 

and the possibility of surviving cancer

n Believe in the power of prayer for healing

n Mistrust health care providers

n Expect racial discrimination from the 

health care system

These findings were particularly important given 

the lack of minorities in patient care positions in 

the area’s health care system. Three interventions 

were designed, one of which is an interactive, 

Web-based curriculum entitled The Physician’s 

Role in Reducing Racial Disparities in Cancer 

Outcomes. This curriculum contains three 

30-minute modules, all of which include interactive 

components such as tests and printable patient 

discussion plans:

n Disparities in health care and health outcomes 

(engages physicians intellectually and presents 

data on differential treatment based on race)

n African-American perspectives on health care 

(includes interviews with African-American 

individuals)

n Empathy and trust (designed to elicit 

behavior change)

Online Community Tool for Engaging 

Diverse Communities in Cancer Health 

Disparities

The Arkansas Cancer Community Network received 

pilot funding to develop an online tool to enhance 

collaboration between the Arkansas Cancer 

Community Network and community partners 

(i.e., Cancer Councils). CoalitionsOnline, has 

enabled geographically dispersed partners to develop 

new relationships, provided opportunities to share 

knowledge, enabled creation of a social structure 

that fosters learning, and facilitated programming 

evaluation.

Features included on CoalitionsOnline include:

n Events calendar to which community partners 

can post

n Training materials

n Meeting materials, including agendas 

and minutes

n Legislative updates

n Membership directory

n Messaging/chat section

n Section for creating, posting, and 

administering evaluations

n Organization-specific pages for each 

Cancer Council

Lessons learned include the importance of training 

community partners in person rather than via 

phone if more than one partner is being trained 

at a time, providing hard copies of training 

16
Cancer Health Disparities Summit 2007 Report 17

materials to community partners, training partners 

about the level of information to be shared (e.g., 

confidentiality), and determining up front who 

will have the right to post information (i.e., Cancer 

Council co-chairs). Next steps include developing 

a training guide and assisting other coalitions in 

establishing online collaborative space.

Visit Coalitions Online at 

http://coalitionsonline.mrooms.net/.

Cancer.gov En Español—A Resource 

for Hispanic/Latino Communities

Until recently, the NCI Web site (cancer.gov) 

included Spanish content, but was not presented 

as a unified Spanish-language site. Because 

cancer.gov receives 3 million visits per month 

and 10 percent of visitors identify as Hispanic, an 

NCI Spanish Web Site Committee was established. 

Formative research was conducted, including a 

needs assessment and literature review, interviews 

with 10 other Federal agency Spanish-language 

Web site developers, and focus groups with U.S. 

Latino Internet users.

Five issues were selected as critical to address 

during site formation:

n Equivalent and culturally relevant experience 

by Hispanic users

n Language and translation issues

n Content organization

n Design tailored to cultural preferences

Twenty-three new pages of content were 

developed, including information on cancer types 

and a dictionary of terms. Additionally, features 

were created to enable users to search, sort, 

and e-mail information in Spanish. The use of 

pictures of Latino families, content and images 

that address cultural perceptions, and a toggle 

feature that enables the user to alternate between 

Spanish and English versions of the same content 

created a culturally relevant experience. Literal 

translations and computer-aided translation 

were avoided, and plain language was stressed. 

Content was organized into fewer categories 

based on user-centered research. To tailor 

the design and address cultural perceptions 

(e.g., nothing can be done to prevent cancer), 

a “myths and beliefs” section was added and 

images portraying cultural values were included 

throughout the site.

Since the site’s launch on April 2, 2007, cancer.

gov/espanol has had 1.5 million visits, and visits 

by users in the United States have increased by 

50 percent. Additional user research is planned 

to increase functionality and navigation, and new 

content continues to be developed.

Presenters:

Kathryn Braun, Ph.D., 

‘Imi Hale Cancer Network, University of Hawaii

Beti Thompson, Ph.D., 

Hispanic Community Network to Reduce Cancer 

Disparities, Fred Hutchinson Cancer Research 

Center

James Hébert, Sc.D., 

South Carolina Cancer Disparities Community 

Network, University of South Carolina Research 

Foundation

John Ureda, Dr.P.H., 

South Carolina Cancer Disparities Community 

Network, University of South Carolina Research 

Foundation

Anissa Vines, Ph.D., 

Carolina Community Network, University of North 

Carolina at Chapel Hill

Sora Park Tanjasiri, Ph.D., 

WINCART: Weaving an Islander Network for Cancer 

Awareness, Research, and Training, California State 

University at Fullerton

Lorrie Ann Santos, B.A., 

‘Imi Hale Cancer Network, University of Hawaii

Sue Hamann, Ph.D., 

New Hanover Regional Medical Center

Chara Stewart, M.P.H., 

Arkansas Cancer Community Network, Arkansas 

Cancer Research Center

Silvia Inéz Salazar, M.P.H., 

National Cancer Institute

Christine Ramirez, 

Lockheed Martin
18 Cancer Health Disparities Summit 2007 Report

The media can be a powerful partner in the fight against cancer health disparities, but communication 

with members of the media requires different skills and knowledge than interacting with colleagues or 

the community. A diverse panel of media experts presented advice on how to effectively interact with 

media outlets and increase news coverage of health disparities.

Advice From Media Experts

n Contact journalists to offer story ideas.

n Develop long-term relationships with journalists.

n Focus on media outlets that are familiar to and trusted by target populations.

n Target minority-oriented publications. They may be able to cover disparities-related topics 

in greater depth than mainstream populations.

n Promote stories that will give readers practical information about lowering cancer risk.

n Use plain language and avoid acronyms and jargon when talking to journalists.

n Personal stories put a human face on the problem of health disparities.

Media Panelists

U.S. Medicine—Sandra Basu

U.S. Medicine is an independent news organization that reaches about 40,000 readers through its U.S. 

Medicine newspaper and weekly electronic newsletter. The organization covers medical activities and 

policies of the Federal Government, including all aspects of American Indian and Alaska Native (AI/AN) 

health care. These populations are severely affected by disparities in a wide range of diseases, including 

cancer, tuberculosis, diabetes, heart disease, and depression. People on reservations are often wary of 

outsiders which make covering this population challenging. Finding sources willing to candidly discuss 

health issues is difficult. It is beneficial to journalists to develop relationships with professionals involved 

in community-based research because these professionals can refer them to community members.

Additional information about U.S. Medicine is available at http://www.usmedicine.com/.

Asian Fortune—Stella Choi

Asian Fortune is an English-language newspaper that serves Asian Americans in the Washington, DC, area. 

Asian Americans face many barriers in gaining access to health care, including physical as well as language 

and cultural barriers. Many health education materials have been established for Asian Americans, but they 

are often not effectively distributed. Minority-oriented media can help disseminate health information to 

minority populations because they are conscious of cultural features of these populations. For example, Asian 

Health Disparities in the News: 

Getting the Word Out

18
Cancer Health Disparities Summit 2007 Report 19

Fortune is tailored to appeal to the family-oriented 

Asian-American culture.

Visit the Asian Fortune Web site at http://www.

asianfortunenews.com.

National Newspaper Publishers 

Association—Hazel Edney

The National Newspaper Publishers Association 

is a wire service comprising more than 200 

African-American-owned newspapers around 

the country. African Americans experience 

numerous health disparities. A number of factors 

contribute to these disparities, including low 

high school graduation rates and high rates of 

unemployment, poverty, and uninsurance. Many 

African-American journalists are interested 

in communicating messages about cancer 

and healthy lifestyles to the African-American 

community. The most successful stories have 

been those that give readers practical information 

on how to lower their cancer risk. These stories 

are more likely to be picked up by other media 

outlets than stories that contain dry statistics. 

Health disparities researchers should focus 

on ways that African Americans can change 

behaviors associated with increased cancer risk 

and should provide this information to AfricanAmerican journalists so it can be passed on to 

readers in the community.

Visit the National Newspaper Publishers 

Association Web site at http://www.nnpa.org.

New America Media—Viji Sundaram

New America Media is a nationwide association 

of ethnic news organizations. It operates a Web 

site that also serves as a portal for stories about 

immigrant communities. Ethnic media outlets can 

be very effective for disseminating information to 

ethnic communities. However, ethnic journalists 

are not always well respected by the general public 

or people in leadership positions. It is important 

that ethnic journalists be recognized as legitimate 

reporters with important constituencies.

Visit the New America Media Web site at 

http://newamericamedia.org.

The Cancer Preventorium—

Elmer Huerta

Cultural factors influence health-related knowledge 

and attitudes; for example, some ethnic groups do 

not talk openly about disease and have a fatalistic 

outlook about cancer. Coherent, consistent, 

comprehensive, culturally appropriate mediabased public education programs delivered 

through communication channels that are familiar 

to and trusted by minority populations can change 

knowledge and attitudes and empower people to 

reduce their cancer risk. The Washington Cancer 

Institute uses daily, weekly, and monthly radio 

broadcasts; weekly television segments; bimonthly 

columns in Spanish-language magazines; and a 

Web site to deliver health and prevention messages 

to the Latino community in the Washington, 

DC, area. The Washington Cancer Institute also 

encourages preventive medicine through its 

Cancer Preventorium, which provides screening 

of asymptomatic patients for conditions such as 

cancer, diabetes, and high blood pressure. The 

Preventorium engages in community outreach 

and also provides patient navigation services. 

More than 20,000 patients have been seen at the 

Preventorium since its inception in 1994.

Visit Prevencion, Inc., at http://www.prevencion.

org to find more information on Spanish-language 

outreach efforts.

The media can 

be a powerful 

partner in the 

fight against 

cancer health 

disparities.
20 Cancer Health Disparities Summit 2007 Report

Two plenary sessions and two breakout sessions during Summit 2007 focused on key elements 

for building and operating successful programs to eliminate cancer health disparities: 

n Collaborations and Partnerships

n Community Engagement

n Managing and Sustaining Programs

n Communication and Bioinformatics

n Training 

In the plenary sessions, invited speakers described best practices and lessons learned related to the 

five key elements. For the breakout sessions, participants were assigned to regional groups so that 

common concerns could be shared among programs in the western, northeastern, southeastern, and 

central regions of the country. Group participants and facilitators were provided with lists of suggested 

discussion topics and questions to consider. One participant from each region reported the key points 

of breakout group discussions in two plenary debriefing sessions.

Collaborations and Partnerships

Interdisciplinary partnerships among research, academic, and community organizations that serve 

racial/ethnic minority and underserved populations are essential to improve the study of cancers 

that affect these groups and to increase the involvement of such entities and populations in scientific 

research.

Plenary: Steven Patierno of the George Washington Cancer Institute (GWCI) in Washington, DC 

provided several examples of his organization’s collaborations with community partners, including the 

Citywide Patient Navigation Research Program, the GW Mobile Mammography Partnership, the GWCI 

Men’s Oncology and Prostate Cancer Outreach and Screening Program, and the DC Cancer Consortium.

Breakout group members discussed novel and effective approaches that have been successful in 

developing mutually beneficial partnerships that incorporate diverse leadership and demonstrate 

significant community involvement; crucial factors in facilitating partnerships to bridge diverse 

populations; barriers to developing and sustaining truly diverse collaborations; balancing of rigorous 

scientific standards with substantial community involvement; benefits of encouraging collaborations 

among researchers who work with minority and underserved populations; best practices for forging 

new partnerships and expanding outreach to minority and other medically underserved communities; 

Key Elements: Building and 

Upholding Successful Programs

20
Cancer Health Disparities Summit 2007 Report 21

and steps needed to increase availability of 

new technologies to facilitate collaboration.

Selected Key Points 

 of Discussion

• There are six keys to successful collaboration: 

overcoming misunderstanding; building trust 

in relationships through communication; 

sharing funding and other resources; 

evaluating the processes and outcomes of 

community-based research; recognizing the 

diversity of strengths and expertise among 

partners; standardizing IRB oversight across 

program sites; and engaging high-profile 

survivors as champions for programs.

n Provision of mentoring to minority scientists, 

inclusion of the community in the planning 

of research, and incorporation of economic 

policy and advocacy within the framework 

of the research program are essential to 

collaborative research.

n Obtaining treatment for uninsured patients 

identified through screening programs is 

an ongoing problem. Medical centers that 

participate in collaborative programs can 

provide care at no cost on a case-by-case 

basis, but most institutions place a limit on this 

practice.

n Collaboration among CBPR programs expands 

the options available to community members 

by creating regional networks of providers.

n The policy research components of 

collaborative programs are a potential avenue 

for changing the system to provide treatment 

for uninsured citizens.

n Partnerships can reduce budget constraints 

faced by researchers.

n NCI’s Consumer Advocates in Research and 

Related Activities (CARRA) program can 

provide assistance to scientists who are 

interested in learning how to work with 

community-based organizations.

n Partnerships should be reciprocal, but 

partners must understand the limitations that 

constrain other parties. Partners may not be 

funded to support all activities, but they can 

still make contributions in their areas 

of expertise. Service delivery is improved 

by eliminating duplication of effort.

n Rigorous scientific standards need to 

be reconciled with the concerns of the 

community. The community must understand 

the purpose of scientific method and IRB 

oversight, while scientists must understand 

that the community places a higher priority 

on its own needs.

n Requests for grant applications designed 

to address cancer health disparities should 

require applicants to clearly define the 

community organizations with which they 

intend to collaborate. 

Community Engagement

Addressing health disparities requires a 

collaborative approach to research that equitably 

engages all partners in the research process and 

recognizes the unique and considerable strengths 

that each partner brings to this process.

Plenary: Mattie Woods of the Center for Healthy 

Hearts and Souls described a consortium of 

community hospitals in western Pennsylvania 

called Centers for Healthy Hearts and Souls, 

which has partnered with 81 churches and 

community organizations. The consortium 

is involved in the University of Pittsburgh’s 

Community Research Advisory Board, which 

promotes bidirectional communication 

between researchers and the community.

Breakout group members discussed key enablers 

of CBPR; developing and disseminating guidelines 

for CBPR; addressing barriers to participation 

in CBPR by community health care providers; 

focusing research on issues of greatest relevance 

to communities; designing intervention strategies 

that incorporate community norms; increasing 

culturally sensitive interpretations of research 

findings; identifying core research infrastructure 

needs for conducting research in community 

settings; leveraging existing infrastructure; and 

sharing effective approaches for designing training 

to promote community participation in research.

Requests for grant 

applications 

designed to 

address cancer 

health disparities 

should require 

applicants to 

clearly define 

the community 

organizations 

with which 

they intend to 

collaborate. 
Cancer Health Disparities Summit 2007 Report

Selected Key Points 

of Discussion

n Programs must maintain consistency when 

communicating with communities, not only in 

the content of messages provided, 

but also in the individuals who reach out to 

the community. The group of professionals 

engaged in collaborative research should 

reflect the diversity of the community 

in which that research is conducted. 

Community gatekeepers should be enlisted by 

collaborative programs, especially as members 

of IRBs and advisory groups.

n Newspapers owned and operated by 

African Americans are trusted components 

of the community and very often serve 

as advocates and agitators. Collaborative 

programs should include these newspapers 

among their partners.

n Academic tenure requirements should be 

revised to place greater value on community 

engagement, rather than focusing on isolated 

individual accomplishments.

n Collaborative partners could use a central 

IRB as a neutral party in resolving issues that 

arise in the course of communitybased research and service delivery 

programs, such as conflicts between 

researchers or institutions and 

community-based organizations. 

An IRB could also help clarify 

“ownership” of research projects 

and their findings.

n Communities need technical 

assistance to understand the 

purpose and expected outcomes of a 

research project and the importance 

of evidence-based interventions 

before they can be expected to make 

a decision to become involved.

n NIH funding mechanisms 

should allow support for building 

relationships necessary to 

incorporate community values and 

norms into the design of scientific 

studies. Staff time and resources 

should be made available to help communities 

in tangible ways.

n Academia cannot ask communities to 

become partners if academic institutions 

maintain complete control and ownership 

of grant funds. Grants should be redesigned 

to include support for community-based 

programs.

Managing and Sustaining 

Programs

Programs face constant financial and policyrelated challenges in ensuring program continuity 

and securing reliable resources to meet program 

obligations. Evidence suggests that changes in 

health policy are critical to sustaining CBPR efforts 

over the long term.

Plenary: Hugo Vilchis-Licon of New Mexico 

State University’s Border Epidemiology and 

Environmental Health Center described a 

concept called REACH—Research, Education, 

And Community Health—as the core element 

required for program sustainability.

Breakout group members discussed funding 

issues; examples of successful monitoring and 

implementation of recommendations and policies 

aimed at reducing cancer health disparities; 

working with legislators to evaluate local policies; 

increasing the potential for translating evidencebased research into sustainable community 

change; developing strategies for using research 

to influence legislation; and identifying data and 

training needs of decision makers to support 

implementation of public policy.

Selected Key Points 

of Discussion

n A lack of understanding of the value of 

community-based research on the part of 

academic institutions and peer reviewers 

is a barrier to establishing, managing, and 

sustaining collaborative programs. Many 

institutional leaders and reviewers feel that 

community engagement compromises scientific 

rigor and question the value of allocating 

resources to community groups. 

The increased interest 

within the National 

Institutes of Health 

(NIH) in expanding 

interdisciplinary clinical 

and translational research 

is an enabler that should 

facilitate the creation of 

collaborative research 

programs. Bringing 

broader expertise into 

cancer research will 

expand its focus to 

include social, economic, 

and political determinants 

of health disparities. 

22
Cancer Health Disparities Summit 2007 Report 23

n Academic institutions should help build 

infrastructure to provide ongoing support for 

community-based activities when Federal grants 

are no longer available. Communities need 

training in how to pursue funding opportunities 

from government and private sources and 

maintain programs after funding ends.

n Health-care cost reductions achieved through 

comprehensive community-based health 

and wellness programs could result in 

increased availability of funds for collaborative 

community-based programs.

n Research funding and protocol design must 

value indigenous knowledge and experience 

within communities and provide incentives 

to volunteers.

n A key element of ensuring sustainability is 

identifying the most appropriate data in the 

most appropriate format for presentation to 

policy makers.

n A central repository of existing policies is needed. 

The Cancer Control P.L.A.N.E.T. could house such 

a resource organized according to primary versus 

secondary prevention and by region.

n Health policy analysis is often not a strength 

of academic or community partners. Planning 

should include identification of expertise in 

this area.

n Bringing evidence-based interventions into 

the community requires increasing 

participation in clinical trials. Only 3 percent 

of the participants in clinical trials represent 

minority populations. Minority-Based 

Community Clinical Oncology Programs 

(Minority-Based CCOPs) provide an excellent 

model for addressing this problem. Policy 

makers need to be educated about the 

importance of improving access to trials for 

minorities. In addition, investigators involved 

in disparities-related collaborative programs 

should explore ways to participate in MinorityBased CCOPs.

Communications and 

Bioinformatics

Computer networks underpin virtually all aspects 

of biomedical research, from the capture, storage, 

and analysis of data to the dynamic 

modeling of disease epidemics. 

Powerful computers alone are not 

enough to exploit those opportunities. 

Researchers need comprehensive 

supporting infrastructure that 

integrates data-gathering facilities, 

computing hardware, data analysis 

and informatics tools, interoperable 

software, and expertise needed to 

build, manage, and utilize networks. 

Network connectivity is increasingly 

important for interdisciplinary 

team science because it allows 

collaborative sharing of valuable 

data, expertise, and other research 

resources.

Plenary: John Carpten of 

Translational Genomics Research 

Institute (TGen) described his 

company’s use of advanced 

bioinformatics to a wide variety of 

basic science and medical applications.

Breakout group members discussed steps needed 

to enhance existing network infrastructure; 

processes and resources needed to facilitate 

interaction among grantees; use of existing 

resources to build bridges between academic 

health centers and community health care 

providers to stimulate CBPR; unique infrastructure 

needs of urban and rural/remote institutions; and 

strategies for meeting the costs of building and 

sustaining network infrastructure.

Selected Key Points 

of Discussion

n Keys to enhancing existing network 

infrastructure include: strong IRB oversight 

and an emphasis on human subject protection; 

interdisciplinary training; linguistic cultural 

competency; education for researchers on the 

value of new technology; and availability of 

software to facilitate mining of data.

n Processes that may be required to ensure 

that existing network infrastructure facilitates 

A lack of understanding 

of the value of 

community-based 

research on the part of 

academic institutions 

and peer reviewers is a 

barrier to establishing, 

managing, and sustaining 

collaborative programs. 

Many institutional 

leaders and reviewers 

feel that community 

engagement compromises 

scientific rigor and 

question the value of 

allocating resources to 

community groups. 
24 Cancer Health Disparities Summit 2007 Report

interaction among regional grantees include: 

improvement of data management practices 

and development of compatible data 

management systems and standards; provision 

of information technology (IT) training to all 

partners; and memorandums of understanding 

to clarify roles and relationships.

n Programs need real-time data collection 

capability within clinical settings, with links 

to statewide and national hubs. This would 

accelerate and improve both care delivery and 

research collaboration.

n Actions that programs can initiate to 

increase the capacity of existing network 

infrastructure to bring academic and 

community-based partners together include 

making bioinformatics resources available to 

partners at distant sites to improve diagnostic 

procedures and implementing cross-training 

and community outreach. Bioinformatics 

and biostatistics core facilities, as well as 

teleconferencing and telemedicine facilities, 

could be established in academic settings and 

shared by regional partners.

n Data management systems used by various 

organizations in a region must be compatible 

so that information can be shared. 

Standardized guidelines for data management 

are needed.

n Information gained through research in the 

community must be translated into a form that 

can be delivered back to the community to 

improve outcomes.

n The costs of developing and sustaining 

network infrastructure can be met by: 

incorporating systems support and 

replacement costs into the planning from the 

beginning; building partnerships with local 

governments; advocating for policy changes; 

and leveraging the resources of partners. 

The costs of bioinformatics include not only 

equipment and software but also training and 

maintenance. Proposals to create collaborative 

programs must include strong justification for 

inclusion of IT staff.

n Programs need to integrate tools that can assist 

in patient enrollment by analyzing patients’ 

attributes and quickly indicating which patient 

populations are likely to benefit from a study.

n As the Cancer Biomedical Informatics Grid 

(caBIG) evolves, issues related to cancer 

health disparities should be addressed. The 

grid should be expanded to accommodate 

advocacy and policy issues, behavioral data, 

and information on community characteristics. 

In addition to working with caBIG, programs 

should explore other avenues for obtaining 

open-source software or GIS technology that 

can support their research activities.

n Development of a Web-based portal to share 

genomic and proteomic data with the public 

could take place rapidly if adequate funds 

were made available. The NCI Cancer Genetic 

Markers of Susceptibility Study and the 

Human Genome Project are two examples 

of NIH leadership in making data available 

to the public.

Training

Reducing and eliminating cancer-related health 

disparities requires a well-trained, collaborative 

group of transdisciplinary researchers, health care 

professionals, and members of the community 

(both lay and other professional groups). It is 

important to provide specific training targeting 

senior researchers, junior investigators, and 

community members.

Plenary: Estella Estape of the University of 

Puerto Rico described training and education 

initiatives used by the University of Puerto 

Rico to increase the number of minority and 

underserved investigators. These efforts focus 

on helping students become independent 

clinical researchers, conduct culturally 

appropriate and ethical studies, build and lead 

collaborative networks, and communicate 

effectively.

Breakout group members discussed addressing 

critical training gaps for members of 

transdisciplinary research teams; promoting 

participation of cancer health disparities 

researchers on grant review committees; planning 

within regions to identify recruitment pools of 
Cancer Health Disparities Summit 2007 Report 25

new investigators; ensuring a diverse workforce 

of investigators; and identifying best practices for 

working with junior investigators.

Selected Key Points of 

Discussion

n Success in mentoring depends on a good 

fit between mentor and student. Students 

should have the option of changing mentors, 

if necessary, to ensure development of positive 

and productive relationships. Mentoring 

practices must be tailored to individual 

institutions and their unique cultures. 

Students should have internal and external 

mentors to help them learn about different 

approaches to community-based research.

n Academic institutions should explore the role 

of community-based participatory research in 

developing tenure-track positions. Since CBPR 

investigators may produce fewer peer-reviewed 

publications than others, alternate measures of 

value for this work are needed.

n Formal programs are needed to increase 

awareness of CBPR training programs among 

high school and college students. Students with 

an interest in CBPR should evaluate academic 

institutions to identify those that provide the 

best opportunities to follow that career path. 

An important key to success in mentoring 

minority students is finding those who are 

passionate about making contributions to 

science and to their communities.

n Junior investigators should be given time 

off and other incentives to encourage 

participation on review panels. Community 

representatives should also be provided with 

the opportunity to serve as reviewers. In-house 

peer review for pilot projects can give junior 

investigators important first-hand experience 

in the peer-review process.

n Community-based cancer awareness programs 

should focus on recruiting young people for 

entry into academic career paths. Program 

directors who have access to training funds 

can use this as an incentive to encourage 

students to apply for training and prepare 

applications to conduct pilot projects.

n A centralized source of information on training 

opportunities is needed. Improved systems 

are also needed for tracking students once 

they enter the training system. A national or 

regional database system is needed to profile 

mentors, describe their best practices, and 

provide information on the careers of students 

with whom they have worked.

n Agencies that fund community-based research 

and those that fund education and training 

should be better connected so that scientists 

have input into plans for supporting career 

development.

n In academic institutions, appointment 

and promotions committees should 

consider community engagement and 

experience in evaluating junior faculty, 

in addition to teaching experience and 

publications. A community-based participatory 

research track could be established in addition 

to the traditional research and clinicianeducator tracks.

Academic 

institutions should 

explore the role of 

community-based 

participatory 

research in 

developing 

tenure-track 

positions. 
Cancer Health Disparities Summit 2007 Report

Appendix A: Summit Agenda

Monday, July 16, 2007

7:00 a.m.–6:00 p.m. Registration

7:00 a.m.–8:15 a.m. Poster Setup

8:30 a.m.–8:35 a.m. Call to Order

Tarsha McCrae, Center to Reduce Cancer Health Disparities, NCI

8:35 a.m.–9:00 a.m. Welcoming Remarks

Barbara Alving, National Center for Research Resources, NIH

Joyce Hunter, National Center on Minority Health and Health Disparities, NIH

9:00 a.m.–9:15 a.m. Sharing Our Vision: The New Center to Reduce Cancer Health 

Disparities

Sanya Springfield, Center to Reduce Cancer Health Disparities, NCI

9:15 a.m.–10:15 a.m. Key Elements: Building and Upholding Successful Programs

Moderator: Leslie Cooper, Center to Reduce Cancer Health Disparities, NCI

Panelists: Collaborations and Partnerships—Steven Patierno, George Washington 

Cancer Institute; Community Engagement—Mattie Woods, Centers for Healthy 

Hearts and Souls; Managing and Sustaining Programs—Hugo Vilchis-Licon, New 

Mexico State University

10:15 a.m.–10:25 a.m. Q & A

10:25 a.m.–10:30 a.m. Charge to Regional Breakouts 

(Same Room Assignments for All Workshops)

Jamelle Banks, Office of Science Planning and Assessment, NCI

10:30 a.m.–10:45 a.m. Morning Break

10:45 a.m.–12:15 p.m. Workshops I (Community Engagement)

12:15 p.m.–1:30 a.m. Lunch (on your own)

1:30 p.m.–3:00 p.m. Workshops II (Managing and Sustaining Programs)

3:00 p.m.–3:15 p.m. Afternoon Break

3:15 p.m.–4:45 p.m. Workshops III (Collaborations and Partnerships)

4:45 p.m.–5:00 p.m. Break

5:00 p.m.–6:15 p.m. Debrief I: Bridging Resources to Maintain Program Efforts

6:15 p.m Adjourn

6:30 p.m.–8:00 p.m. Grantee Poster and Networking Session

Northeast

Salon A or Salon B

Southeast

Salon C or Salon F

Central

Salon G or Salon H

West

Brookside B or

White Flint

Sunday, July 15, 2007

4:00 a.m.–7:00 p.m. Registration Exhibits Open

26
Cancer Health Disparities Summit 2007 Report 27

Tuesday, July 17, 2007

7:00 a.m.–6:00 p.m. Registration

8:30 a.m.–8:45 a.m. Opening Remarks and Administrative Notes

Shelia McClure, Division of Research Infrastructure, NCRR

8:45 a.m.–10:00 a.m. Key Elements: Building and Upholding Successful Programs (continued)

Moderator: Jeremiah White, Jr., Osiris Group, Inc.

Panelists: Communications and Bioinformatics—John Carpten, Translational 

Genomics Research Institute; Training—Estella Estape, University of Puerto Rico

10:00 a.m.–10:15 a.m. Q & A

10:15 a.m.–10:30 a.m. Morning Break

10:30 a.m.–12:00 p.m. Workshops IV (Communications and Bioinformatics)

12:00 p.m.–1:30 p.m. Lunch (on your own)

1:30 p.m.–3:00 p.m. Workshops V (Training)

3:00 p.m.–3:15 p.m. Afternoon Break

3:15 p.m.–5:00 p.m. Concurrent Sessions (Choose Topic)

5:00 p.m.–6:00 p.m. Debrief II: Accessing Innovative Tools and Strategies to Address 

Program Challenges

6:00 p.m. Adjourn & Poster Breakdown

Wednesday, July 18, 2007

8:30 a.m.–8:45 a.m. Opening Remarks and Administrative Notes

Derrick Tabor, Office of the Director, NCMHD

8:45 a.m.–9:45 a.m. Health Disparities in the News: Getting the Word Out

Moderator: George Strait, Office of the Director, NCMHD

Panelists: Elmer Huerta, MedStar Research Institute; Hazel Edney, National 

Newspapers Publishers Association/Black Press USA; Stella Choi, Asian Fortune 

Newspaper; Sandra Basu, US Medicine; Viji Sundaram, New American Media

9:45 a.m.–10:00 a.m. Q & A

10:00 a.m.–10:15 a.m. Break

10:15 a.m.–11:15 a.m. Funding Opportunities Announcements

Moderator: Kenneth Chu, Center to Reduce Cancer Health Disparities, NCI

Panelists: Division of Cancer Control and Population Sciences (DCCPS)—Vickie 

Shavers, NCI; Division of Cancer Biology (DCB)—Suresh Mohla, NCI; Small 

Business Innovation Research (SBIR) and Small Business Technology Transfer 

Program (STTR)—Michael Weingarten, NCI; Center to Reduce Cancer Health; 

Disparities Training Opportunities—Nelson Aguila, NCI; National Center for 

Research Resources—Michael Sayre, NCRR; National Center on Minority Health 

and Disparities and Across NIH—Francisco Sy, NCMHD

11:15 a.m.–11:30 a.m. Q & A

11:30 a.m.–11:40 a.m. Making the Connections to Eliminate Cancer Health Disparities

John Niederhuber, National Cancer Institute

11:40 a.m.–11:50 a.m. Q&A

11:50 a.m.–12:00 p.m. Closing Remarks (Acknowledgments and Next Steps)

Sanya Springfield, Center to Reduce Cancer Health Disparities, NCI

Sidney McNairy, Division of Research Infrastructure, NCRR

Francisco Sy, Community Based Participatory Research, NCMHD

12:00 p.m. Adjourn Exhibit Breakdown Exhibits Open
Cancer Health Disparities Summit 2007 Report

Collaborations and Partnerships

Interdisciplinary partnerships among research, academic, and community organizations that serve 

racial/ethnic minority and underserved populations are essential to improve the study of cancers that 

affect these groups and to increase involvement of such entities and populations in scientific research. 

Workshops under this theme will showcase programs that have established effective and mutually 

beneficial collaborations and partnerships among cancer centers, academic institutions, communitybased organizations, Federal agencies, students, and community members with the common goal 

of reducing cancer health disparities.

Major points of discussion will also include:

n Working with non-traditional partners such as corporations, insurance companies, 

and pharmaceuticals.

n Creating partnerships for the support and development of sustainable community-based 

networks for participatory research in areas of high cancer disparities.

n Providing regional opportunities for program networking across research disciplines.

n Enhancing the likelihood of the adoption of beneficial research results at the individual 

and community levels.

n Building and sustaining academic-community partnerships and community trust.

n Addressing the needs of trans-disciplinary research teams to tackle complex scientific 

problems and questions.

Strong partnership strategies are vital to the continuum of cancer care, and programs must be fostered 

that cultivate collaborative relationships between diverse representatives among decision-makers, 

community members, researchers, and other stakeholders.

Questions to consider:

n What novel and effective approaches have been successful in developing mutually beneficially 

partnerships that incorporate diverse leadership and demonstrate significant community 

involvement?

n What factors have been crucial in facilitating partnerships to bridge diverse populations 

by their commonalities?

n How do programs address barriers to developing and sustaining true diverse collaborations 

that link different segments (health care, social services, etc.) that advocate for minority 

and underserved health?

n How do programs balance rigorous scientific standards with substantial community involvement?

n What are the program benefits of encouraging collaborations among researchers who work 

with minority and underserved populations?

n What are the best practices for forging new partnerships and expanding outreach to minority 

communities and other medically underserved communities?

n What steps are needed to increase the availability of technologies and facilities conducive 

to producing more effective collaborative processes?

Appendix B: Workshop Descriptions

28
Cancer Health Disparities Summit 2007 Report 29

Community Engagement

Addressing health disparities will require 

a collaborative approach to research that 

equitably engages all partners in the research 

process and recognizes the unique and 

considerable strengths that each partner brings 

to this process. Workshops will focus on 

barriers to and enablers of effective academiccommunity partnerships for community-based 

participatory research (CBPR) to address 

cancer health disparities. The goals of the 

workshops are to identify (1) strategies and 

best practices for conducting collaborative, 

community participatory clinical and 

translational research, particularly in minority 

communities and other medically underserved 

communities where cancer health disparities 

persist; (2) strategies and best practices 

for recruitment and retention of research 

participants; and (3) core infrastructure needs 

in communities that will encourage and enable 

community participation in research.

Key discussion topics will include:

n Addressing racial, ethnic, and geographic 

disparities in clinical and translational 

research participation.

n Building community buy-in and trust to 

enhance recruitment and retention of 

research participants.

n Collaborative development of practical 

research protocols that work effectively in 

community health care settings and address 

questions of relevance to the community.

n Developing versatile and sustainable core 

research infrastructure (e.g., personnel, 

information technology, and informatics 

tools) to enable and encourage community 

participation.

n Leveraging existing infrastructure, including 

increasingly advanced clinical information 

systems, residing in safety-net community 

health center networks to facilitate CBPR.

n Sharing effective approaches in designing 

community action trainings to promote 

community participation in research.

Questions to consider:

Barriers/enablers of effective academiccommunity research partnerships

n What are some of the key enablers of CBPR?

n How do we develop/disseminate guidelines 

and best practices for CBPR?

n What are some key barriers to community 

health care providers and community 

participation in research, and how can 

academic institutions overcome these 

barriers?

Facilitating collaborative development of 

practical research protocols

n What are some best practices for focusing 

research questions on health issues of greatest 

relevance to the communities at greatest risk?

n How do we develop intervention strategies 

that incorporate community norms and values 

into scientific approaches?

n What are the best practices for increasing 

accurate and culturally-sensitive interpretation 

of research findings?

Core infrastructure requirements for research in 

community settings

n What are the core research infrastructure 

needs for researchers, community health 

providers, and community participants?

n How do we identify existing infrastructure 

and leverage the infrastructure to increase 

CBPR?

Promoting educational training for communitybased organization partners

n What are some successful examples from 

training modules for non-researchers on 

participating in CBPR to address cancer 

health disparities in their region?

n How do we facilitate the collaboration of 

regional trans-disciplinary research teams 

to work with the community to identify 

new opportunities and training needs in 

eliminating cancer disparities?
30 Cancer Health Disparities Summit 2007 Report

Managing and Sustaining 

Programs

Workshops under this theme will focus on critical 

elements needed to develop a core process to ensure 

program continuity and identify and secure reliable 

resources to meet program obligations. Programs 

are constantly facing challenges in effectively moving 

research activities forward that include a lack of 

funding and resources and increased scrutiny of 

effectiveness.

Evidence suggests that health policy is critical to 

sustaining program efforts over the long term. 

Factors such as financial resources, program 

duration, and the process of project negotiation are 

a matter of policy. Grantees will discuss examining 

existing health policy models and determining 

how they may be adapted to address cancer health 

disparities-related gaps in the community, translate 

research findings into policy, and further engage 

local, state, and Federal policymakers.

Key topics of discussion include:

n Identifying the challenges in developing, 

implementing, and sustaining cancer health 

disparities programs.

n Working with individuals from multiple 

backgrounds to be able to interface and 

identify the needs, challenges, and strengths 

of the community in closing the cancer health 

disparities gap.

n Sharing effective processes to secure sufficient 

funding to implement new research policies and 

programs and to improve existing activities.

Questions to consider:

n How do we address inadequate funding issues 

to fully support infrastructure required to 

perform cancer health disparities research?

n What program examples have been instrumental 

in monitoring adoption and implementation 

of legislation and recommendations to reduce 

cancer health disparities?

n How have programs worked with local 

legislation to evaluate local policies?

n How do we increase the potential for 

translation of evidence-based research into 

sustainable community change that can be 

disseminated more broadly?

n What are successful processes that programs 

may adopt to effectively use research to 

influence legislation?

n What types of data and training are needed by 

decision-makers to implement public policy by 

creating legislation and regulation to eliminate 

cancer health disparities?

Communications and 

Bioinformatics

High-speed computer networks are vital to 

biomedical research, yet the infrastructure 

supporting network connectivity remains 

unevenly distributed. Workshops will examine 

ways to implement networks that support 

research and communication. They will also 

serve to identify key needs and priorities for 

future infrastructure development.

Computer networks underpin virtually all aspects 

of biomedical research, from the capture, 

storage, and analysis of data to the dynamic 

modeling of disease epidemics. Researchers 

increasingly turn to computing power to conduct 

modeling and simulations of biological systems. 

Powerful computers alone are not enough to 

exploit those opportunities. A comprehensive 

supporting infrastructure (often termed cyber 

infrastructure) must be in place—one that 
Cancer Health Disparities Summit 2007 Report 31

integrates data-gathering facilities, computing 

hardware, data analysis and informatics tools, 

interoperable software and middleware, and 

expertise needed to develop robust software 

applications and build, manage, and utilize 

networks.

Network connectivity is increasingly important, 

especially for trans-disciplinary team science, 

because it allows collaborative sharing of 

valuable data, expertise, and other research 

resources at optimal rates. Networks facilitate 

research collaboration and sharing of resources 

within geographical areas and beyond and also 

provide access for the conduct of telemedicine.

Academic health centers in some locations, as 

well as many physicians’ offices, rural hospitals, 

and clinics, have poor connectivity, limiting 

their ability to participate in research networks. 

Shortcomings extend beyond the physical 

network, including adoption of policies and 

procedures for seamless interoperability and data 

standards and security for all participating sites. 

Overcoming these barriers will greatly expand 

access to research tools and health information 

for physicians, patients, and researchers, both 

in academic health centers and wherever 

researchers conduct community-based research. 

Enhanced connectivity will also broaden access 

to education and training programs that further 

national efforts to strengthen the clinical research 

workforce.

Questions to consider:

n What steps are needed to enhance the existing 

network infrastructure to adequately support 

interdisciplinary research and training of 

junior faculty and community program staff?

n What processes are required for the existing 

network infrastructure to facilitate interaction 

among grantees in geographical proximity 

and nationally?

n How can programs utilize their existing 

resources to increase the capacity of the 

existing network infrastructure to bridge 

academic health centers and community 

health care providers in order to foster 

and stimulate community-based clinical 

and translational research?

n What are the needs of institutions in urban, 

rural, or remote areas, and how can these 

needs be addressed to enhance opportunities 

for communication and broader inclusion 

in biomedical and behavioral research?

n How will the costs of developing and sustaining 

network infrastructure that meets anticipated 

research needs and promotes collaboration 

be supported?

Training

These workshops will address challenges 

and enhancement strategies to increase the 

recruitment, retention, and promotion of 

minority and underserved investigators in 

cancer health disparities research. Reducing 

and eliminating cancer related health disparities 

requires a well-trained, collaborative group of 

trans-disciplinary researchers and it is essential 

to provide specific training targeting senior 

researchers and junior investigators relating to 

the following points:

n Recruit and mentor junior minority 

investigators.

n Increase knowledge of the peer review process 

and how it plays an essential role in increasing 

the competitive pool of investigators working 

with diverse populations.

n Recognize the challenges and strengths 

confronted by the new investigator in 

identifying gaps in the field of cancer health 

disparities research.

Key topics of discussion will include:

n Describing the current pool of minority and 

underserved investigators in the area of cancer 

health disparities and why they are needed.

n Identifying challenges faced in both 

recruitment and retention of minority and 

underserved researchers in health disparities.

n Describing currently funded NIH programs 

that are available to facilitate increased 

recruitment and retention of minority and 

underserved investigators.
32 Cancer Health Disparities Summit 2007 Report

n Discussing study section participation and 

sharing approaches to promote peer review 

involvement.

Questions to Consider:

n What are the critical training gaps and needs 

for members of trans-disciplinary regional 

cancer health disparities teams?

n How do we encourage and promote the 

participation of cancer health disparities 

researchers on review committees to learn 

grant preparation nuances (e.g., individual 

reviewer qualifications and common critiques 

of research applications)?

n How do we engage in cross-talk and planning 

within a region to identify a recruitment pool 

of new investigators as well as training and 

recruitment/incentive needs?

n How do we ensure the inclusion of a more 

diversified pool of investigators to fill identified 

research gaps in new and emerging areas of 

science?

n What are some best practices to work with 

junior researchers in documenting the process 

to find the appropriate institution, mentors, 

and funding opportunities?
33

ACS American Cancer Society

AI/AN American Indian/Alaska Native

AIM Ancestry informative marker

caBIG Cancer Biomedical Informatics Grid

CARRA Consumer Advocates in Research and Related Activities

CBPR Community-based participatory research

CCN Carolina Community Network to Reduce Cancer Disparities

CCOP Community Clinical Oncology Program

CDRP Cancer Disparities Research Partnership Program

CIS Cancer Information Service

CNP Community Networks Program

CRCHD Center to Reduce Cancer Health Disparities

CTES Clinical Trials Education Series

DRI Division of Research Infrastructure

GIS Geographic Information System

GWCI George Washington Cancer Institute

IDeA Institutional Development Award

IRB Institutional Review Board

IT Information Technology

MassCONECT Massachusetts Community Network to Eliminate Cancer Disparities

MI/CCP Minority Institution/Cancer Center Partnership

MSI Minority Serving Institution

NCI National Cancer Institute

NCMHD National Center on Minority Health and Health Disparities

NCRR National Center for Research Resources

NIH National Institutes of Health

OUCNP University of Oklahoma Community Networks Program

PFFS Patient Fast Fact Sheet

PLANET Plan, Link, Act, Network with Evidence-based Tools

PNRP Patient Navigation Research Program

RCMI Research Centers in Minority Institutions

REACH Research, Education, And Community Health

SRHS Singing River Hospital System

TeRMM Tobacco-Related Messages and Media

TGen Translational Genomics Research Institute

TReND Tobacco Research Network on Disparities

WINCART Weaving an Islander Network for Cancer Awareness, Research and Training

Appendix C: Glossary of Acronyms

33
Cancer Health Disparities Summit 2007 Report

National Cancer Institute

Cancer Disparities Research Partnership Program

The National Cancer Institute’s Cooperative Planning Grant for Cancer Disparities Research 

Partnership Program (CDRP) issued by the Radiation Research Program is an effort to strengthen 

the National Cancer Program by developing models to reduce significant negative consequences of 

cancer disparities seen in certain U.S. populations. The Program supports the planning, development, 

and conduct of radiation oncology clinical trials in institutions that care for a disproportionate 

number of medically underserved, low-income, ethnic, and minority populations but have not 

been traditionally involved in NCI-sponsored research. In addition, CDRP supports the planning, 

development, and implementation of nurturing partnerships among applicant institutions and 

committed and experienced institutions actively involved in NCI-sponsored cancer research.

http://www3.cancer.gov/rrp/CDRP/index.html

Cancer Information Service

The National Cancer Institute (NCI), the nation’s lead agency for cancer research, established the 

Cancer Information Service (CIS) in 1975 to educate people about cancer prevention, risk factors, 

early detection, symptoms, diagnosis, treatment, and research. The CIS is an essential part of NCI’s 

cancer prevention and control efforts. 

http://cis.nci.nih.gov/about/about.html

Community Networks Program

The Community Networks Program (CNP) is designed to reach communities and populations that 

experience a disproportionate share of the cancer burden, including African Americans, American 

Indians/Alaska Natives, Hawaiian Natives and other Pacific Islanders, Asians, Hispanics/Latinos, and 

underserved rural populations. The overall goal of the program is to significantly improve access to 

and utilization of beneficial cancer interventions and treatments in communities experiencing cancer 

health disparities in order to reduce these disparities.

http://crchd.cancer.gov/cnp/background.html

Minority-Based Community Clinical Oncology Program

The Minority-Based Community Clinical Oncology Program (CCOP) will: (1) provide support for 

expanding clinical research in minority community settings; (2) bring the advantages of state-ofthe-art treatment and cancer prevention and control research to minority individuals in their own 

communities; (3) increase the involvement of primary health care providers and other specialists 

in cancer prevention and control studies; (4) establish an operational base for extending cancer 

prevention and control and reducing cancer incidence, morbidity, and mortality in minority 

populations; and (5) examine selected issues in Minority-Based CCOP performance (e.g., patient 

recruitment, accrual, eligibility).

http://www3.cancer.gov/prevention/ccop/

Appendix D: Participating Programs

34
Cancer Health Disparities Summit 2007 Report 35

Minority Institution/Cancer Center Partnership

Through planning activities dedicated to developing stable, long-term comprehensive partnerships 

that are mutually beneficial to Minority Serving Institutions (MSIs) and NCI Cancer Centers, the 

objectives of the Minority Institution/Cancer Center Partnership (MI/CCP) program are to increase 

the participation of MSIs in the nation’s cancer research and research training enterprise, increase 

the involvement and effectiveness of the Cancer Centers in research and research training and career 

development related to minorities, and develop more effective research, education, and outreach 

programs that will have an impact on minority populations. 

http://minorityopportunities.nci.nih.gov/index.html

Patient Navigation Research Program

The overall goal of the Patient Navigation Research Program is to develop effective interventions to 

reduce cancer health disparities by facilitating timely, continuous access to quality, standard cancer 

care for all Americans. Patient navigation for cancer care represents a new approach to providing 

individualized assistance to patients, survivors, and families. Navigation spans the period from cancerrelated abnormal findings through diagnostic testing to completion of cancer treatment. Patient 

navigators are trained, culturally sensitive, health care workers who help individuals address patient 

access barriers to quality, standard cancer care. 

http://crchd.cancer.gov/pnp/pnrp-index.html

National Center for Research Resources

Research Centers in Minority Institutions

The Research Centers in Minority Institutions (RCMI) program enhances the research capacity 

nd infrastructure at minority colleges and universities that offer doctorates in health sciences. 

To be eligible to apply for the RCMI grants, graduate institutions must have one or more 

underrepresented minority groups that comprise 50 percent or more of their student body 

representation. RCMI support is provided by the NCRR Division of Research Infrastructure (DRI) 

and provides funding to recruit established and promising researchers, acquire advanced 

instrumentation, modify laboratories for competitive research, fund core research facilities, 

and support other research. Because many investigators at RCMI institutions study diseases that 

disproportionately affect minorities, NCRR support serves the dual purpose of bringing more minority 

scientists into mainstream research and enhancing studies of minority health.

http://www.ncrr.nih.gov/research_infrastructure/research_centers_in_minority_institutions/

Institutional Development Award (IDeA) Program

The Institutional Development Award (IDeA) Program broadens the geographic distribution 

of NIH funding for biomedical and behavioral research. The program fosters health-related 

research and enhances the competitiveness of investigators at institutions located in states where 

the aggregate success rate for applications to NIH has historically been low. Supported by the 

NCRR Division of Research Infrastructure (DRI), IDeA increases competitiveness of investigators 

through support for faculty development and enhancement of the research infrastructure at 

institutions located in the currently eligible 23 states and Puerto Rico.

http://www.ncrr.nih.gov/research_infrastructure/institutional_development_award/
36 Cancer Health Disparities Summit 2007 Report

National Center on Minority Health and Health Disparities

Community-Based Participatory Research Program

The goal of this program is to support community intervention research studies using 

community-based participatory research (CBPR) principles and methods to reduce and 

eliminate health disparities in any disease or condition of major concern to the community 

with emphasis on racial and ethnic minorities. This initiative has three phases: a 3-year 

research planning grant, a competitive 5-year intervention research grant, and a 3-year 

dissemination research grant.

http://ncmhd.nih.gov/

Centers of Excellence in Partnerships for Community Outreach, 

Research on Health Disparities and Training (Project EXPORT)

The program aims to build research capacity at designated institutions enrolling a significant number 

of students from health disparity populations and to promote participation and training in biomedical 

and behavioral research among health disparity populations.

http://ncmhd.nih.gov/our_programs/project_export_awards/PrjExpFY03Awards.asp

NIH Publication No. 08-6517 

Printed July 2008