Cancer Clinical Trials
A Resource Guide for Outreach,
Education, and Advocacy
National Institutes of Health
National Cancer Institute

The National Cancer Institute Clinical Trials
Education Series
Cancer Clinical Trials Books
Cancer Clinical Trials: The Basic Workbook
The self-modulated workbook, with its accompanying activities,
will help readers understand why cancer clinical trials are
important, how they work, how participants' safety is protected,
as well as some of the reasons so few adults participate in these
trials. It is designed for individuals who want to develop a basic
understanding of clinical trials.
Cancer Clinical Trials: The In-Depth Program
The textbook expands on the subjects outlined in The Basic Workbook.
It features additional information on clinical trial design and
resources for physician participation and referral of individuals
to studies. It is designed for health care professionals and others
who seek a more in-depth understanding of clinical trials.
Cancer Clinical Trials: A Resource Guide for Outreach, Education,
and Advocacy
The interactive workbook provides direction and guidance for
individuals and organizations interested in developing specific
clinical trial outreach and education activities. This guide can also
be used along with either/both of the texts listed above.
Trainer's Guide for Cancer Education
A manual for planning and conducting educational sessions on
cancer-related topics, including clinical trials.
Cancer Clinical Trials Resources
The following resources will help support cancer clinical trial
education and outreach efforts.
Publications
Low-literacy brochures on cancer clinical trials for potential
participants:
· If You Have Cancer... What You Should Know About Clinical Trials*
· If You Have Cancer and Have Medicare...You Should Know About
Clinical Trials

Clinical trial participant booklets:
· Taking Part in Clinical Trials: What Cancer Patients Need to Know*
· Taking Part in Clinical Trials: Cancer Prevention Studies­­What
Participants Need to Know*
*Also available in Spanish
Videos
· A clinical trial awareness video and speaker's guide,
"Cancer Trials... Because Lives Depend on It"
· A video and discussion guide on deciding to take part in a
clinical trial, "Cancer Clinical Trials: An Introduction for
Patients and Their Families"
Slide Programs
Three slide programs are available in PowerPoint on CD-ROM and
on the www.cancer.gov Web site:
Cancer Clinical Trials: The Basics
Provides background on why cancer clinical trials are important,
how they work, and how participants' safety is protected.
Cancer Clinical Trials: The Way We Make Progress Against Cancer
A brief community awareness presentation.
Cancer Clinical Trials: In-Depth Information
Expands on the subjects outlined above, featuring additional
information on clinical trial design with resources for physician
participation and referral of individuals to studies.
Ordering Information
To order these publications, contact the Cancer Information Service
at 1-800-4-CANCER or log onto www.cancer.gov/publications. Most
materials are available as PDF files on the Web site.
The Cancer Information Service
NCI's Cancer Information Service (CIS), with regional offices throughout the United
States, may work with organizations and professionals to plan, implement, and
evaluate culturally appropriate clinical trials education programs using the Clinical
Trials Education Series. Contact the CIS at 1-800-4-CANCER.

Table
of
Contents

Table of Contents
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1
1. Strategies for Outreach and Education . . . . . . . . . . . . . . . . . . . .3
Understanding Clinical Trial Barriers . . . . . . . . . . . . . . . . . .3
General Strategies for Educating
Diverse Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7
Specific Strategies for Educating Ethnically
Diverse Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10
Information on Other Underserved Groups . . . . . . . . . . . .39
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .42
2. Ways to Educate Yourself . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .47
1. Use NCI Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .48
2. Find Local Clinical Trials in Your Community . . . . . . . .50
3. Attend Conferences, Meetings, and Workshops . . . . . .53
3. Ways to Educate Others, One-on-One . . . . . . . . . . . . . . . . . . . .55
1. Get Started--Circle of Connections
With Individuals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .57
2. Talk to Others--Tips . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .58
3. Help Others Understand How to Evaluate Research
in the News . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .59
4. Ways to Conduct Community Outreach and Education . . . . .63
1. Get Started--Circle of Connections With Groups . . . . .65
2. Expand Your Organization's "Community" . . . . . . . . .66
3. Prioritize--Develop a Strategy and Philosophy
for Outreach and Education . . . . . . . . . . . . . . . . . . . . . . .69
4. Use NCI Audiovisual Materials to
Make Presentations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .71
5. Distribute Materials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .71
6. Write Letters for Local Newsletters and Web Sites . . . .72
7. Hosting an Information Session/Community Forum--
A Step-by-Step Planning Guide . . . . . . . . . . . . . . . . . . . .77
8. Form an Advocacy Coalition . . . . . . . . . . . . . . . . . . . . . . .87

5. Ways to Work With the Media . . . . . . . . . . . . . . . . . . . . . . . . . . .95
1. Work With Mass Media--Goals, Timing,
and Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .96
2. Develop a Media Campaign . . . . . . . . . . . . . . . . . . . . . . .98
3. Use Media Tools . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .100
6. Ways to Work With Hospitals, Medical Centers,
and Universities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .109
1. Work With Researchers and Health Care
Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .111
2. Serve on an Institutional Review Board (IRB) . . . . . . .113
Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .115
Plan for Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .115
Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .120

Purpose of This Guide and How to Use It
This resource guide is designed to help you find ways to
participate and engage your community in clinical trials outreach
and education activities. It also will help you figure out how to get
involved and how to get started.
As an individual or as part of an organization, you can be a critical
force in helping people understand the importance of clinical
trials. There are many opportunities for clinical trial outreach and
education--how you do it is up to you and any organization(s)
with which you are involved.
Many avenues exist to support your work, whether you are:
· Interested in clinical trials, working on your own
· Interested in clinical trials, working as part of an organization or
group (which may or may not already have clinical trials as
part of its mission)
· A health care professional, working as part of an institution,
organization, or group
If you are an individual working on your own, this guide can help
you think about activities you can do alone, as well as ways you
can engage others to work with you.
If you are part of an organization, a group can be designated to
read this guide and develop recommendations for action.
Each section is designed to be self-contained and features practical
tips and useful tools that can guide you in developing appropriate
education and outreach efforts. In general, the activities in each
section are organized according to level of effort required.
After you explore a wide range of outreach opportunities, the Plan
for Action in the Appendix can help you think through ways to get
started and how to plan specific goals for the future.

Introduction
2

Introduction
Given your interest in clinical trials, it is likely that you already
know quite a bit about how they work, the barriers associated
with them, and why they are important.
Whether you are a health care professional who wants to find
ways to reach your community, a member of a patient group
who wants to educate its members, or someone who wants to
engage your group or organization to initiate clinical trial
outreach activities, this guide can help you figure out avenues
to support your activities. The guide is not designed to be a
comprehensive overview; rather, it gives some examples of
activities others have engaged in, and provides tools and
suggestions for implementation in your community.
By informing your community about clinical trials, you can
help people make informed decisions about their cancer
treatment or prevention options, including the option of
participation in a clinical trial. The more people that participate
in clinical trials, the faster we can answer the critical research
questions that will lead us to better treatment and prevention
options for all cancers.
This workbook is designed to complement the other materials
in the National Cancer Institute Clinical Trials Education Series,
described at the beginning of this book.
1

1.
Strategies
and
Education
for
Outreach

1
Strategies for Outreach
and Education
Understanding Clinical Trial Barriers
It is important to understand the reasons why so few adults with
cancer participate in clinical trials. A few are listed here.
Many people with cancer, or those at high risk for developing
cancer, are:
· Unaware of the option of participating in clinical trials.
Research has consistently shown that most people are not
aware that clinical trials could be an option for cancer
treatment or prevention.
· Unwilling to go against their physician's advice or direction.
Research has shown if a person's doctor does not recommend a
trial as an option for cancer treatment or prevention, he or she
will be very unlikely to participate in one.
· Fearful, distrusting, or suspicious of research. For many
people, the idea of being "randomized" to one treatment makes
them feel they have less control over their care. Many are also
fearful of being "experimented upon" and not receiving
treatment for their cancer. Many people distrust those in the
medical community, based on past negative experiences or the
historical abuses of research participants.
· Unaware of clinical trials. The reality or the perception that
there are no trials in their local community is a barrier for many
people.
· Concerned about potential costs of trials. Some people who
are insured fear that their insurance company won't cover
participation in a clinical trial. Those who do not have
insurance may worry about costs that are not covered
by the trial's sponsor.
Strategies for Outreach and Education
3

· Facing personal or practical obstacles. There are many costs,
financial and otherwise, to participating in a clinical trial. Time
and travel that are required to seek care at a distant trial site
may be a concern for many people. The indirect costs of being
away from work and family may also be a concern. Finally,
some people may not wish to temporarily leave the care of their
physician to participate in a trial.
Many doctors are:
· Unaware of clinical trials. Physicians are not always aware
of available clinical trials. Some may not be aware of the local
resources or may assume that none would be appropriate for
the people they treat.
· Unwilling to "lose control" of patient's care. Most doctors feel
that relationships with the people they care for are very
important. They want what is best for each person. Some
doctors fear that if a person must be referred elsewhere to
participate in a trial, they may lose control of the person's care.
They may not understand that every effort is made to maintain
the physician relationship, even when a person is in a trial. In
addition, many doctors may fear the loss of income if a person
is referred elsewhere for his or her cancer care.
· Under the impression that standard therapy is best. Many
physicians may not adequately understand how clinical trials are
conducted or the importance of clinical research. Some physicians
believe that the treatment in clinical trials is not as good as the
standard treatment they might provide to people. They also may
be uncomfortable admitting that there is uncertainty about which
treatment is best in a phase 3 clinical trial.
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Additional Clinical Trial Barriers for Ethnically
Diverse Populations
· There is long-standing fear, apprehension, and skepticism in
minority populations about medical research due to real
abuses that have happened in the past (e.g., the legacy of the
Tuskegee syphilis study). Among these populations, there is
often widespread fear and distrust of the medical care system
as a result of discrimination, indifference, and disrespect.
Some may feel that they do not want to give up their rights
by participating in a trial, or lose their power by being
"experimented upon." Others may be skeptical about the
quality of care that would be provided in a clinical trial. Some
may find that trial recruitment strategies are not sensitive to
their needs.
· Doctors may not mention clinical trials as an option for cancer
care. As noted above, many physicians do not refer their
patients to clinical trials. However, some physicians may avoid
suggesting a clinical trial to their minority patients, out of
concern that patients would see him/her as insensitive.
Moreover, some physicians may unwittingly discriminate
against older patients, or those who are from certain ethnic or
cultural backgrounds.
· Many people may face additional problems accessing clinical
trials. Depending on where they live or their access to
transportation, people may have difficulty getting back and forth
from a clinical trial site. Those with low income may find it
difficult to take time off work or find appropriate childcare.
Other barriers, such as a lack of health insurance or lack of
general health care, clearly present difficulties in accessing trials.
· Cultural or ethnic backgrounds may include values and
beliefs that are very different from Western medicine. Many
people have cultural beliefs that Western medicine cannot
address their health concerns. Different ethnic and cultural
views of health and disease (e.g., fatalism, family decisions
about treatment, use of traditional healers, prayer, herbal
medicines, or use of complementary/alternative health
practices) may make clinical trials a less attractive treatment
Strategies for Outreach and Education
5

option. For prevention trials, many may feel that the risk of a
potential disease and its consequences may be less important
than meeting daily needs.
· Language and/or literacy barriers may make it difficult for some
people to understand and consider participating in clinical trials.
The complexity of forms, including informed consent documents,
may also be a barrier to those considering participation in a clinical
trial. Translation can also be difficult if the person translating
information has not had specialized training.
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General Strategies for Educating
Diverse Populations
One of the biggest hurdles for clinical trial education is
overcoming suspicion of medical research.
It is important to note that strategies for clinical trial outreach and
education will vary, based on the type of trial and its requirements
for participation. Although some of the following strategies were
designed for cancer prevention trials, many may also be used for
other types of clinical trials.
Strategy 1
Educators should be familiar (and preferably a part of) the
communities they are trying to reach. People who are known,
trusted, and accountable will be more effective and more believable
when discussing clinical trials with community members.
Suggested Steps
· Use easy to understand language. In some cases this may mean
using a community's first language.
· Involve people from the community, especially community
leaders. Find ways to develop collaboration and encourage
ownership in the outreach program.
Tip
If you are not a member of the population(s) you seek to
work with, you need to develop meaningful partnerships
with organizations within those communities.
Strategy 2
Address important concerns and perceptions, benefits, and risks
about clinical trials through one-on-one contact. One-on-one
contact is one of the best ways to educate others.
Strategies for Outreach and Education
7

Suggested Steps
· Make sure you do not judge someone's values if they are
different from your own. Find ways to present information that
complement the values someone holds.
· Address risks and costs in a frank, open, and honest way.
· Stress the importance of enrollment in trials to the family and to
future generations.
· Stress the importance of equal access to the highest quality
care, including clinical trials. Each person has the right to know
and understand every option available with regard to his or her
health care.
· Promote the balance of spirituality, faith, medicine, and science.
· See the next section for suggested messages for specific ethnic/
racial groups.
Strategy 3
Discuss potential benefits of participating in a clinical trial, but do
not overlook the risks.
Suggested Step
Discuss the fact that because people are monitored closely under
clinical trial protocols, they often receive a higher quality of
medical care and followup than do those who are not enrolled in
clinical trials.
Strategy 4
Avoid disrupting home and work schedules when conducting
education or outreach activities.
Suggested Steps
· Hold meetings after church or other social activities.
· Suggest incorporating evening and weekend hours into
required trial visits.
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Key Points for Outreach and Education
· Clinical trial outreach strategies must incorporate an
understanding of a potential participant's decision-
making process, his or her culture, family and work life,
and economic concerns. Those conducting education
and outreach must find ways to present clinical trial
information that complement the values people in the
community hold.
· Education and outreach strategies should stress the
importance of equal access to the highest quality care,
including clinical trials. Each person has the right to know
and understand every health care option available.
· Clinical trials must be explained in a way that is
respectful and easy to understand, addresses someone's
fears and concerns, and addresses risks and benefits.
· The research team must ensure that the informed consent
process truly reflects a participant's understanding of the
risks and benefits of the clinical trial. Involving family,
members from the participant's community, and
culturally competent staff are some ways to help verify
that the participant has received the information in a way
that he or she can understand and made the decision to
participate voluntarily.
Strategies for Outreach and Education
9

Specific Strategies for Educating Ethnically
Diverse Populations
Research has shown that there are many differences in who gets
cancer among people of different races, ethnicities, and
socioeconomic backgrounds. Certain racial and ethnic groups, as
noted on the pages that follow, are also more likely to die of cancer
than other groups. These differences may be due to a variety of
reasons, such as late stage of disease at diagnosis, barriers to
health care access, history of other diseases, biologic and genetic
differences in tumors, health behaviors, and the presence of other
risk factors for cancer. In addition, some cancers that have a high
rate of developing in one ethnic group are rare and may not be
listed among the top ten cancers in the U.S. population as a
whole.* Because rare cancers may not receive as much attention
as those in the "top ten," it is even more important for people of
particular ethnic and cultural groups to be aware of research so
that they can work to find ways to decrease the burden of these
unusual cancers in their populations.
Differences in cancer screening and treatment have also been
documented for people of different ages, as well as those from
different socioeconomic, educational, and racial/ethnic backgrounds.
*Based on the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER)
Program. SEER is the most authoritative source of information on cancer incidence and survival in
the United States.
More information on data sources used in this section: Cancer incidence data come from the NCI
SEER program, covering 14 percent of the U.S. population. Cancer mortality data come from the
National Center for Health Statistics (NCHS) and covers the entire U.S. population. Cancer incidence
and death rates for some racial and ethnic populations may be limited by problems in ascertaining
race and by the misreporting of race and ethnicity on forms used to collect information on cancer
incidence, deaths, and the populations at risk. For instance, while reporting race for African-
American and White populations is generally considered reliable, biases are more serious for smaller
populations, particularly American Indian/Alaskan Natives, as well as for groups living in smaller
geographical areas. Additionally, it is important to note that Hispanics can be of any race and are not
mutually exclusive from White, African Americans, Asian/Pacific Islanders, and American
Indian/Alaskan Natives. These biases can affect trends and comparisons among groups.
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Ethnically Diverse Populations--Some Definitions
Diverse populations include minority, ethnic, and racial groups
designated by the U.S. Government, including:
· American Indian or Alaska Native
· Asian American
· Black or African American
· Hispanic or Latin American
· Native Hawaiian or other Pacific Islander
Ethnically diverse populations are growing rapidly, and according
to the 2000 Census, about 25 percent of the U.S. population
reported their race as something other than White.
About 17 percent of the U.S. population over age 5 (more than 44
million people) do not speak English at home. Of these,
· Almost half speak English "less than very well"
· About 60 percent speak Spanish
1
NCI's working definition of diverse populations also includes
medically-underserved populations, such as rural, low-income,
and low-literacy level individuals of any racial or ethnic group.
Medically underserved populations are those that lack easy
access to, or do not make use of, high-quality cancer prevention,
screening and early detection, treatment, or rehabilitation services.
In general, these groups experience higher cancer death rates than
the U.S. population as a whole.
Outreach Strategies
The strategies listed below are not meant to be a complete
overview of barriers and strategies; nor should the information be
generalized to all people in these groups. Attitudes within various
populations vary greatly, depending on a person's age,
socioeconomic status, community, and other factors. The broad
outline here provides some background, context, and strategies for
potential education and advocacy efforts.
Strategies for Outreach and Education
11

Participation of Different Groups in NCI Treatment
Clinical Trials
2
The percentage of White patients enrolled in NCI clinical
trials parallels that of the overall U.S. population. However,
different patterns are seen for Black, Asian American, and
Hispanic cancer patients.
· Black children and young adults have accrual to
clinical trials comparable to their White peers, as do
Black women.
· Asian American and Hispanic children and young
adults have accrual to clinical trials comparable to their
White peers.
· The percentage of Black men who have cancer and are
30 to 59 years old who participate in clinical trials is
markedly lower than the percentage of White men with
cancer in this age group.
· The percentage of Asian Americans and Hispanics
aged 30 to 80 that accrue to clinical trials is less than
that of Whites.
· In terms of age, those 80 years of age or older are
least likely to be enrolled, followed by those aged 30
to 39 years.
Patient accrual for NCI-sponsored cancer treatment trials by sex and race/ethnicity
2
Percentage of U.S.
Race/Ethnic Group
Males (%)
Females (%)
Population
White
36
46
72
Black
4
5
12
Hispanic
4
3
12
Asian
1
1
4
American Indian
0.5
0.5
1
Hawaiian/Pacific Islander
0.5
0.5
0.5
Total
44
56
100
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Percentage of estimated Unites States female population represented in NCI-sponsored
cancer treatment clinical trials: log scale (by age and race/ethnic group)
2
100.0
Asian
Black
10.0
Hispanic
White
1.0
0.1
0.0
0 to 9
10 to 19
20 to 29 30 to 39
40 to 49
50 to 59
60 to 69
70 to 79
80+
Percentage of estimated Unites States male population represented in NCI-sponsored
cancer treatment clinical trials: log scale (by age and race/ethnic group)
2
100.0
Asian
Black
10.0
Hispanic
White
1.0
0.1
0.0
0 to 9
10 to 19
20 to 29 30 to 39
40 to 49
50 to 59
60 to 69
70 to 79
80+
Strategies for Outreach and Education
13

African Americans and Clinical Trials
Background
A person who is Black or African American has origins in any of
the Black racial groups of Africa. This definition includes:
· Native-born Black Americans
· Africans
· Haitians
· Residents of non-Spanish-speaking Caribbean Islands of
African descent
Cancer in African Americans
(Unless otherwise noted, all data is age-adjusted incidence or mortality
rates between 1992 and 1999.)
3
Overall, African Americans had the highest risk of any U.S.
racial/ethnic group of not only getting cancer, but also for dying
from cancer.
African American Men:
· Of all ethnic and gender groups, African American men have
the highest overall rate of having cancer.
· Of all ethnic and gender groups, African American men have
the highest overall rate of dying from cancer.
· Of all men, African Americans have the highest incidence and
death rates from many cancers, including lung and bronchus,
prostate, and colon and rectum cancer. In addition, in 2001,
African American men were at least 50 percent more likely to
get prostate cancer than were men of any other ethnic group.
4
Top five cancers: Prostate, lung and bronchus, colon and rectum,
oral cavity and pharynx, and stomach
African American Women:
· Of all women, African Americans have the highest incidence
rates for colon and rectal cancer, lung and bronchial cancer, and
pancreatic cancer.
· Of all women, African Americans have the highest death rates
from many cancers, including breast, colon and rectal,
pancreatic, uterine, and cervical cancers.
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· While they have the second highest rates of all women of
getting breast cancer, they have the highest rate of dying from
the disease.
Top five cancers: Breast, colon and rectal, lung and bronchial,
uterine, and pancreatic
Challenges
The legacy of the Tuskegee Syphilis Study (in which researchers
studied but did not treat African American men with syphilis) has
contributed to long-standing mistrust in African American
communities concerning clinical research. Widespread skepticism
about the medical care system exists as a result of a long history of
discrimination, indifference, and disrespect. The oral history
contributing to this mistrust is particularly important to recognize
and acknowledge.
Some African Americans may believe that if they agree to
participate in a trial, they will not be appropriately cared for, nor
honestly informed of the risks or the benefits. They may fear that:
5
· Placebos would be substituted for lifesaving interventions
· Treatments that work would be deliberately withheld
· They would not receive a full course of treatment, especially if
funding sources for the clinical trial were no longer available
Other cultural beliefs and attitudes that affect research
participation include hopelessness, fatalism, and doubt about the
usefulness of cancer prevention and control. Faith, folk remedies,
and the role of the family are other important influences for
African Americans.
6
Clinical trials may be a lower priority for African Americans and
others who have a low income, less access to transportation and
health care, less information about clinical trials, and low levels of
literacy. Concerns about family and work responsibilities may also
be a significant barrier.
7 African American men have noted
concerns about researchers not giving back to the community,
being uncomfortable talking about prostate cancer, and past
negative experiences with the medical care system.
8
Strategies for Outreach and Education
15

Potential Solutions
Cultural strategies:
· Find people who are already active in organizations to help
spread the word about clinical trials. People who are known,
trusted, and accountable in the community will be better
messengers than will outsiders.
· Explore partnerships with African American churches,
particularly for health issues central to the mission of the
church. Faith is a very important part of many African
American cultures and the most successful outreach efforts
usually involve churches that have two or more paid clergy, and
medium or large memberships.
· Ensure that the informed consent process truly reflects the
participant's understanding of the risks and benefits of the
clinical trial. Involving family, members from the participant's
community, and culturally competent staff are some ways to
help verify that the participant has received the information in
a way that he or she can understand and made the decision to
participate voluntarily.
Program strategies:
· Talk about trials using one-on-one contact--preferably
with another African American person--through churches,
schools, civic organizations, and African American sororities
and fraternities. Word of mouth can be an effective way to
reach others.
· Conduct in person outreach to complement other education
efforts using videos, brochures, or advertisements.
· Present real-life situations that exemplify statistics or written
messages. Effective dialogue can take place through a church-
sponsored forum or an educational session that allows for open
discussion and questioning.
· Involve local celebrities, including DJs at African American
radio stations, by asking them to share messages about clinical
trials.
· Ask newspapers and local media to join in education efforts.
· Provide personal, "real world" discussion of clinical trials and
followup in any education program.
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Key Messages
Some African Americans may be more interested in clinical trials if
they understand that participation means they:
· Contribute to their community and their families
· Join a group of people like themselves nationally, and in their
local community
Clinical trial educational messages need to include information on
the following topics:
· Severity of the cancer problem nationwide
· Underlying myth that African Americans don't need to be
concerned about cancer
·Toll that cancer (especially breast and prostate) is taking on African
American women and men--and that we don't know why
· Prevention and treatment options for high-risk African
Americans--and the need for more research
· Importance of clinical trials--and what it means for all people
if all groups are not represented in a trial
· Laws on participant protection and rights
· What risk means for the individual and others in his or
her community
Strategies for Outreach and Education
17

Asian Americans and Clinical Trials
Background
A person who is Asian has origins in any of the original peoples of
the Far East, Southeast Asia, and Indian subcontinent. The term
"Asian" refers to persons from the following and other Asian,
Southeast Asian, and South Asian backgrounds:
· Chinese
· Korean
· Vietnamese
· Laotian
· Pakistani
· Bangladeshi
· Filipino
· Indonesian
· Cambodian
· Sri Lankan
· Thai
· Nepalese
· Japanese
· Bhutanese
· Hmong
· Sikh
· East Indian
· Burmese
"Asian Americans" and "Pacific Islanders" are two discernibly
distinctive groups, comprised of numerous heterogeneous
ethnic subpopulations. These broad categories fail to show
mortality rates that, in some instances, strongly differ among
ethnic groups. Whenever possible, this publication separates
out these groups.
U.S. residents who reported they were Asian* made up 4.2
percent of the total population. Chinese is the leading Asian
group (2.7 million) followed by Filipino (2.4 million) and East
Indian (1.9 million).
1
The Asian population includes many groups who differ in
language, culture, and length of residence in the United States.
Some of the Asian groups, such as the Chinese and Japanese, have
been in the United States for several generations and often have
literacy, education, and socioeconomic characteristics that are
above the national average. On the other hand, groups such as the
Hmong, Vietnamese, Laotians, and Cambodians are comparatively
*Self report, alone or in combination with one or more other races
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recent immigrants, and tend to have limited acculturation and poverty
rates below the national average. It is important to note that 88
percent of Asian Americans and Pacific Islanders (AAPI) are either
foreign-born themselves or have at least one foreign-born parent.
Of those who speak Asian and Pacific Island languages at home,
more than 22 percent say they speak English "not well"or"not at all."
1
Cancer in Asians
(Unless otherwise noted, all data is age-adjusted incidence or mortality
rates between 1992 and 1999.)
3
Some Asians are much more devoted to traditional medical
practices than to Western medicine. For example, a study of breast
and cervical cancer screening in Chinese women found that more
than two-thirds had gone to traditional providers for preventive
health care, went to temples to pray for their health, and looked to
fortune-tellers for guidance.
9 Another study of cervical cancer
screening in Cambodian women indicated beliefs that fate cannot
be changed by detection, cancer is incurable, and cancer will not
develop if traditional practices are used.
10
Like the Hispanic/Latino population, Asian/Pacific Islanders
experience lower incidence and mortality rates overall compared
with other minority groups. However, they do experience higher
incidence and mortality rates for certain cancers. Based on three-
year averages, more than 18 percent of Asian and Pacific Islanders
lack health insurance.
1a
Asian/Asian Pacific Islander men:
· Of all men, AAPIs have the highest incidence rates of liver and
stomach cancer.
· Of all men, AAPIs have the highest death rates from liver cancer.
Asian/ Asian Pacific Islander women:
· Seventy percent of Asian Americans come from countries with
the world's lowest overall rates of breast cancer, yet after
living in the U.S. for as little as 10 years, Asian women have
an 80 percent higher risk of getting the disease than recent
immigrants.
· In addition, third and fourth generation Asian American women
have rates of developing breast cancer that are similar to their
neighboring Caucasian women.
11
Strategies for Outreach and Education
19

· Asian American women in general have the lowest rates of
Pap test, mammogram, and breast exam screening of any
ethnic group.
6, 11
· Of all women, Asians have the highest rates of liver and
stomach cancer.
· Of all women, Asians have the higest death rates for liver and
stomach cancer.
Cancer in Specific Asian Groups
The NCI SEER cancer incidence rates noted in this publication
are available for different levels of racial/ethnic detail in each
of the time periods (1988-1992 and 1992-1999).
Although the SEER program routinely collects detailed racial/
ethnic information on the cancer patients in its coverage areas,
the lack of comparable detail in the racial/ethnic county-level
population estimates from the U.S. Census Bureau means that
incidence rates for certain racial/ethnic groups can be
calculated only for time periods centered on the decennial
census. For example, county-level census information for
Asian and Pacific Islanders by subgroups (Chinese, Filipinos,
Hawaiians, etc.) is still only available from the 1990 Census.
From 1988 to 1992, Chinese, Japanese, Korean, and Vietnamese*
groups all had higher rates of getting liver and intrahepatic bile
duct (IHB) and stomach cancers than Whites, and Chinese
and Japanese had higher mortality than Whites from these
two cancers, as well.
12 In this same time period, Korean and
Vietnamese women had higher incidence rates of cervical
cancer than White women.
12
*Liver and IHB not calculated for Vietnamese women
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From 1988 through 1992, the top five cancers for many Asian
groups are as follows:
12
Women
onchus
oid
us
eastBr
Cervical
Colon/Rectal
Lung/Br
Ovarian
Stomach
Thyr
Uter
Chinese
X
XXX
X
Filipino
XX
X
X
X
Japanese
XX
XXX
Korean
XXXX
X
Vietnamese
XXXX
X
Men
Duct
ymphoma
Bile
L
onchus
ostate
Colon/Rectal
Lung/Br
Non-Hodgkin's
Liver/Intrahepatic
Pr
Stomach
Urinary/Bladder
Chinese
X
X
X
X
X
Filipino
XXXXX
Japanese
X
X
X
X
X
Korean
X
X
X
X
X
Vietnamese
X
X
X
X
X
Strategies for Outreach and Education
21

Challenges
Values in many Asian cultures may be different than the Euro-
American system, with decisions reached by consensus, group
welfare being of primary value, and individual life not as
sacred.
23a In some Asian cultures, the family is responsible for
treatment decisions and the patient is not told of his or her
diagnosis.
Many in the Asian immigrant communities need a lot of support
as they learn about clinical trials, and they need to feel safe asking
questions. "Saving face" in public is important. In many cases,
Asian immigrants may feel it is disrespectful to ask questions of
doctors or health professionals.
Recent immigrants also may be dealing with a combination of
educational, social, and health problems, along with emotional
difficulties related to separation and isolation. Many are in low-
wage jobs and need to get permission to take time off work to take
care of health care needs.
The language barrier also is difficult to overcome. Many Asians
do not speak English, and this may not be readily apparent. There
are so many Asian languages that deciding on the language(s) in
which information should be printed is difficult. This barrier is
particularly important in issues surrounding informed consent.
The informed consent process is intimidating for all people and is
especially so for those with limited English skills.
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Potential Solutions
Cultural strategies:
· Assess how long the groups you are trying to reach have been
in this country, as well as the countries of origin represented. It
is important to fit the educational outreach to the culture and to
use people from the communities to reach community members.
· Involve family members in learning about the risks and benefits
of clinical trials, but resist using them as translators of medical
information. In particular, avoid having children--who may be
more proficient in English than their parents--serve as
translators. It is preferable to enlist someone who is trained
for this work.
· Ensure that the informed consent process truly reflects the
participant's understanding of the risks and benefits of the
clinical trial. Involving family, members from the participant's
community, and culturally competent staff are some ways to
help verify that the participant has received the information in
a way that he or she can understand and made the decision to
participate voluntarily.
Language strategies:
· Find respectful ways to make sure that information is being
understood. Someone who does not understand English may say
"yes" or nod, even if they do not understand what is being said.
To ensure that the person you are talking with understands what
you have said, staff may ask, "Many people have a hard time
understanding information like this. I want to make sure that I
explain it clearly. Could you please tell me, in your own words,
what I have just said."
· When translating materials, at least two bilingual, bicultural
translators should be used. In addition, materials should be
pilot-tested with the target audience.
Strategies for Outreach and Education
23

Program strategies:
· Use health fairs, which have been successful when organized by
community members, and involve the leadership of existing
Asian groups in clinical trial outreach.
· If possible, translate clinical trial information to be used in
ethnic newspapers. Many immigrant groups get their health
information from press that is printed in their own languages.
· Invite a professional to deliver information about clinical trials.
Preferably, a doctor or nurse from that community should be
invited who can encourage others to ask questions. Often,
laypeople do not have much credibility as an information source.
· Keep workshops or programs short (30 to 40 minutes) because
many new immigrants may have more than one job, in addition
to other responsibilities.
· While recent immigrants may not have been concerned with
breast cancer in their countries of origin, it is important to
educate these women about their increased risk for this disease.
Key Messages
· A family's receptivity to cancer treatments and trials will
depend on the experience that relatives have had with the
medical system. For example, if a relative did not survive
cancer, it may be taboo to talk about him or her.
· Remember to consider feminine modesty and traditional
gender role values.
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Native Hawaiians and Other Pacific Islanders and Clinical Trials
13
Native Hawaiians and Pacific Islanders are often aggregated
nationally into the "Other" category or currently the "Asian
American/Pacific Islander" or AAPI category. It is important to
note that these are two discernibly distinctive groups,
comprised of numerous heterogeneous ethnic subpopulations.
These groupings have obscured disparate mortality rates
that are prevalent in one group and not the other. Whenever
possible, this publication separates out these groups.
Background
Native Hawaiians and other Pacific Islanders of Polynesian,
Micronesian, and Melanesian ancestry* make up 0.3 percent of the
total U.S. population.
1 This group comprises more than 25 diverse
groups with variations in historical backgrounds, languages, and
cultural traditions.
Among Pacific Islanders in the United States, Native Hawaiians
are the largest group, comprising 58 percent (211,014). Three-
fourths of Pacific Islanders live in the states of California and
Hawaii and they are a relatively young population, with a median
age of 25 years and an average family size of 4.1.
The term "other Pacific Islanders," refers to the peoples of
Polynesia, Micronesia, and Melanesia, and includes:
· Chamorros
· Chuukese
· Samoans
· Kosraen
· Fijians
· Yapese
· Tongans
· Pohnpeian
· Tahitians
· Palauan
· Marshallese
· Other Pacific Islanders
*Alone or in combination with one or more races.
Strategies for Outreach and Education
25

Within this group are six U.S.-associated Pacific Island
jurisdictions­­the Federated States of Micronesia, the Republic of
Palau, the Republic of the Marshall Islands, Guam, American
Samoa, and the Commonwealth of the Northern Marianas--that
have various political relationships with the United States.
The population of the U.S.-associated Pacific Island jurisdictions is
approximately 427,000. The health status varies within and among
the jurisdictions, but is generally worse than for Americans. The
jurisdictions must contend with health conditions found in both
developing countries (e.g., malnutrition, dengue fever, cholera,
and tuberculosis) and developed countries (e.g., diabetes, heart
disease, and cancer).
Cancer in Native Hawaiians
Hawaiian Men:
(For the years 1988-1992)
12
· Have the second highest cancer mortality, behind only
African Americans
· Of all men and of all ethnic groups,
· Have the highest cancer mortality for non-Hodgkin's
lymphoma
· Have the second highest rates for cancers of the lung
and bronchus and pancreas
Top five cancers: Lung and bronchus, prostate, colon and rectum,
stomach, and non-Hodgkin's lymphoma
Hawaiian Women:
(For the years 1988-1992)
12
· Are tied with African Americans for the second highest cancer
mortality (second only to Alaska Natives).
· Of all women and all ethnic groups:
· Have the highest death rate for cancers of the stomach
and uterus
· Have the second highest incidence rates for cancers of
the lung and bronchus
Top five cancers: Breast, lung and bronchus, colon and rectum,
uterine, and stomach
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Cancer in Pacific Islanders
Cancer surveillance and databases are rudimentary or non-existent
in most of these jurisdictions, making cancer rates unknown.
What is known is that cancer is among the top three causes of
death. The most commonly reported cancers for males were
cancers of the lung and prostate, and for females, cancers of the
breast, cervix, and lung.
Challenges
· A history of oppression, higher prevalence of behavioral risk
factors, ineffective cancer prevention and control efforts, and
poor access to state-of-the-art services for cancer prevention,
early detection, and treatment (including low representation in
clinical trials) contribute to increased cancer risk and mortality
among Native Hawaiians and other Pacific Islanders.
· Many Native Hawaiians and Pacific Islanders are socio-
economically disadvantaged and underserved in terms of access
to health and social services.
· In the United States, many Pacific Islanders do not speak English
at home.
· There is a general distrust of research among island communities.
This distrust can also have negative consequences for those
participating in a trial, such as poor compliance or avoidance.
· Geographic barriers are a problem for many Pacific Islanders;
clinical trials are unavailable for most Western Pacific and
Samoan communities and rural Hawaiian communities.
· The conduct of many clinical trials lacks cultural sensitivity and
does not address language needs; it also does not interpret
cultural behaviors and preferences.
Strategies for Outreach and Education
27

Potential Solutions
Cultural strategies:
· Tailor the educational outreach to the culture and use "cultural
brokers" (members of the community) to reach other community
members.
· Include the family unit, which for many Native Hawaiians and
Pacific Islanders includes extended family members and friends,
when educating about the risks and benefits of clinical trials. The
role of the woman is central to the family in many Pacific Island
cultures.
· Ensure that the informed consent process truly represents the
participant's understanding of the risks and benefits of the clinical
trial. Involving family, members from the participant's
community, and culturally competent staff are some ways to help
verify that the participant has received the information in
a way that he or she can understand and made the decision to
participate voluntarily.
Program strategies:
· Use personal contacts through a family member or a friend to do
education and outreach.
· Explain the benefits of research to the community at large.
· Address issues of medical care that are not covered by clinical
trials, as these are an important concern for participants who may
not have insurance or are underinsured.
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Native Americans and Clinical Trials
14,15
Background
A person who is considered Native American has origins in any of
the original peoples of North or South America (including Central
America) and maintains tribal affiliation or community attachment.
The term "Native American" refers to:
· American Indians
· Alaska Natives:
­ Aleuts
­ Eskimos [Athap(b)asc(k)ans]
Native Americans are made up of culturally distinct and diverse
communities. The United States contains 511 federally recognized
tribes, with Native American people living in every State. The largest
tribes are Cherokee and Navajo. More than 9 percent of the U.S.
population reported American Indian or Alaska Native status in the
2000 Census.
1
Indian Health Service
There are more than 300 hospitals and health clinics, located on
or near Indian reservations, run by the Indian Health Service (IHS).
In recent years, many tribes have assumed management of some of
these health care facilities.
The Indian clinics and hospitals are unable to provide the high-tech
medical care needed to diagnose and treat cancer. For this reason,
the IHS Contract Health Services program pays for Indian health
care provided by non-IHS providers. However, this program is
chronically short of funds. Depending on the region/tribe, its local
priorities, and funding remaining in the service contract, certain
treatments may not be available. At present the Contract Health
Services does not reimburse for many treatments that are deemed
"experimental," which keeps many Indian people out of clinical trials.
Although 54 percent of Native Americans live in urban areas, less
than 2 percent of the IHS budget is spent in urban clinics.
6 These
clinics are severely underfunded and must rely on other sources of
support, including Medicaid revenue. Many urban Indians choose
to return to their home reservations for care.
Strategies for Outreach and Education
29

Based on 3-year averages, American Indians and Alaska
Natives were the least likely of the major racial groups to have
health insurance.
1A
Cancer in Native Americans
(Unless otherwise noted, all data is age-adjusted incidence or mortality
rates between 1992 and 1999.)
3
While American Indian/Alaska Natives experience some of the
lowest cancer rates among all ethnic groups, they do experience
higher incidence and mortality for certain cancers. Cancer is the
second leading cause of death among Native Americans and is the
leading cause of death among Alaskan Native women.
16,17
American Indian/Alaska Native Men:
· Of all men and all ethnic groups, have the highest mortality rate
for kidney and renal cancer
Top five cancers: Prostate, lung and bronchial, colon and rectal,
kidney and renal pelvis, and stomach
American Indian/Alaska Native Women:
· Of all women and all ethnic groups,
· Have the highest incidence rate of gallbladder cancer
· Have the highest mortality rate for kidney and
renal cancer
Top five cancers: Breast, colon and rectal, lung and bronchial,
uterine, and ovarian
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Alaska Natives
(For the years 1988-1992)
12
Alaska Native men had the highest rates of getting colon and
rectal cancer among all ethnic groups.
In this same time period, Alaska Native women had the
highest rates for getting and dying from colon, rectal, and lung
cancer among ethnic groups, and their rates of getting cervical
cancer were twice as high as those for White women.
The top cancers:
· Men: Lung and bronchus, colon and rectum, prostate,
and stomach
· Women: Breast, colon and rectum, lung and bronchus,
and cervical
American Indians (living in New Mexico)
American Indian men had the highest rates of all ethnic
groups of getting kidney cancer. In this same time period,
American Indian women had higher rates of cervical, and
ovarian cancers than the U.S. White female population.
The top cancers in American Indians:
· Men: Prostate, colon and rectal, kidney and renal
pelvis, and lung and bronchus
· Women: Breast, ovarian, colon and rectal, gallbladder,
and uterine
Challenges
· A history of disrespect, racism, and poverty has contributed to a
distrust of science and research by Native American populations.
To protect the interests of Native American people, many tribes
have their own Institutional Review Board (IRB), in addition to
those required by the Indian Health Service (IHS) or tribal facility.
Successful clinical trial outreach requires that the investigator
work closely with the tribal IRB in addition to those of the IHS.
Strategies for Outreach and Education
31

· Native Americans are a culturally distinct and diverse community.
Their beliefs about cancer and experiences with diabetes,
alcoholism, poverty, and traditional roles can significantly affect
the success of clinical trial education programs.
· On average, Native Americans are younger, have a lower rate
of high school completion, and have higher rates of poverty
and unemployment than Whites.
6
· Many Native people do not have access to quality health care.
· Many tribes do not have a word for cancer in their languages,
and historically the disease was thought of as something that
affected only the "White man." Some Native Americans may
hold a fatalistic attitude toward cancer, and fear that if they
talk about cancer or even think about it, they might catch it.
· It is unlikely that Native Americans would participate in a cancer
trial without endorsement from other Native Americans, yet
there are few cancer survivors to serve as role models.
· Informed consent forms and procedures may serve as a barrier
to recruitment because the language used in such forms may
not be well understood.
· Because of other pressing health issues, such as diabetes,
obesity, and substance abuse, in addition to extreme poverty,
cancer screening and treatment may not be as important to
some Native people.
· There may be a tribal taboo on the loss of body parts that needs
to be discussed in relation to clinical trials.
· Transportation is an important barrier for Native Americans
who live in rural areas.
· Differences in communication styles are important to consider.
Many Native Americans are reserved, reluctant to ask questions,
or don't discuss their health problems. Body language also is
important, with respect for personal space and friendly gestures
such as smiling and eye contact being key.
· Traditional roles are such that women are usually caretakers
who often place their needs last. In addition, Native American
women value modesty and privacy, and many Native
American couples find a male health care provider for
women unacceptable.
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Potential Solutions
Cultural strategies:
· Use group activities such as sharing and caring for others
because they are universal concepts among Native people, and
should be a part of any clinical trial education program.
· Incorporate the use of traditional healing ceremonies as well as
spiritual connections, which can be very important for people in
these communities.
· Family plays a central role in American Indian life. The needs of
the family may take precedence over the needs of the
individual. When appropriate, the patient's family should be
involved in the decision-making process.
· Ensure that the informed consent process truly represents the
participant's understanding of the risks and benefits of the
clinical trial. Involving family, members from the participant's
community, and culturally competent staff are some ways to
help verify that the participant has received the information in
a way that he or she can understand and made the decision to
participate voluntarily.
Language strategies:
· Use easy-to-understand language and a gentle approach to
education and outreach. Try to include materials that portray
Native Americans.
· Make sure that patient consent forms are understood. Reading out
loud or encouraging consultation with others may be important.
Strategies for Outreach and Education
33

Program strategies:
· Emphasize that participation in a trial can help improve cancer
care for the next generation.
· Use stories and visual tools that focus on the family.
· Use one-on-one or small group education and outreach
techniques to respect privacy.
· Work with community or tribal elders, such as community
health representatives and public health nurses, to find out the
best ways to conduct outreach and education efforts.
· Find out if transportation is needed to get to the site.
· Use public service announcements on Native American radio.
Key Messages
· Messages should be culturally relevant and include issues
related to family and community.
· Tribal beliefs are very diverse and programs should be designed
on a site-specific basis with the help of tribal advisors.
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Hispanics and Clinical Trials
Background
The terms "Hispanic" and "Latino" refer to people born in North,
Central, and South America, and in the Caribbean whose language
is Spanish. Someone who is Hispanic or Latino is a person of
Mexican, Puerto Rican, Cuban, Central or South American, or
other Spanish culture or origin, regardless of race.
In the mainland United States today the largest groups within the
Hispanic community are:
· Mexican (58.5 percent)
· Puerto Rican (9.6 percent)
· Central American (4.8 percent)
(Salvadorian, Guatemalan, Honduran, Nicaraguan,
Panamanian, and other people from countries in Central
America)
· South American (3.8 percent)
(Colombian, Ecuadorian, Peruvian, Argentinean, Venezuelan,
Chilean, and other people from countries in South America)
· Cuban (3.5 percent)
1
The Hispanic population is the fastest growing ethnic group in the
United States. In the 2000 Census, Hispanics eclipsed African
Americans to become the second largest ethnic group, with 12.5
percent of the population reporting Hispanic or Latino status.
Hispanics as a group comprise many different races and ethnicities.
Within these subpopulations, other differences exist according to
culture, beliefs, lifestyles, and experiences, but Hispanics agree that
certain commonalities go beyond specific nationalities. In general,
the U.S. Hispanic population is younger, with more people per
household, and has lower rates of employment, less education, and
lower economic status than do Whites.
6
There are 28 million U.S. residents aged 5 and older who speak
Spanish at home--about 10 percent of the U.S. population. These
percentages vary greatly throughout the United States; for
example, states like California, Texas, and New Mexico, have
approximately 30 percent of residents who speak languages
other than English.
1
Strategies for Outreach and Education
35

Among all those who speak Spanish at home, almost half speak
English "less than very well." It is important to note that in 2000,
68 percent of the U.S. Hispanic population is foreign-born or had
at least one parent who was foreign-born.
1
Cancer in Hispanics*
(Unless otherwise noted, all data is age-adjusted incidence or mortality
rates between 1992 and 1999.)
3
Although Hispanics had the largest reduction in cancer mortality
rates of any U.S. ethnic group (-1.6 percent), they also had the
greatest number of uninsured people. Based on three-year
averages, more than 33 percent of all Hispanics lack health
insurance coverage.
1a Arecent study showed that uninsured
Hispanic women are more than two times more likely to be
diagnosed with breast cancer at a later stage than other women,
and uninsured Hispanic men are almost four times more likely
to be diagnosed with a later stage of prostate cancer than
non-Hispanics.
19
While Hispanics/Latinos have lower incidence and death rates
overall compared with those of African Americans and Whites,
they do experience higher rates for certain cancers.
Latino/Hispanic men:
· Have the third highest incidence and death rates for
prostate cancer
Top five cancers: Prostate, lung and bronchus, colon and rectal,
non-Hodgkin's lymphoma, and stomach
Latina/Hispanic women:
· Have the highest incidence rates for cervical cancer and the
second highest death rate from the disease.
Top five cancers: Breast, colon and rectal, lung and bronchus,
cervical, and uterine
*"Hispanic" is not mutually exclusive from Whites, African Americans, Asian/Pacific
Islanders, and Native Americans.
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Challenges
20
· Many Hispanics have strong religious and cultural beliefs. Some
may believe strongly in "fatalismo" (fatalism) and "resignación"
(resignation)--that diseases or illness cannot be controlled
because they are inherited.
· Many may use folk remedies [such as "uña de gato"(cat's nail)] to
treat cancer, or wait until they are in serious pain to see a doctor.
· In one study, barriers that were identified by Latinas
considering a cervical cancer trial included transportation, fear
of getting a placebo, care of children and family, and care from a
male provider.
7
· Although Spanish is one language, regional dialects need to be
considered when translating materials.
· The language barrier is particularly important in issues
surrounding informed consent. The informed consent process is
intimidating for all people and is especially so for those with
limited English skills.
· Some Hispanics think that cancer treatment will only prolong
life but that no effective cure exists for the disease. Even if
people are treated, it is felt that the type of treatment depends
on the person's ability to pay.
· Hispanics may not obtain health care until they are very sick and
cannot perform normal functions. This adds to the number and
severity of health problems that need to be evaluated. However,
women are more likely than men to seek medical care.
· Many in the Hispanic community feel that doctors do not
communicate well with them and they do not feel well
informed about trials. Many feel that doctors may have financial
interests in a trial, and there is a lack of trust around
participating in scientific research.
· A sense of fatalism and resignation is usually strongest in
women and older men. This may make people feel that
treatment is useless.
· Machismo is a barrier because men feel they are the family
protectors and should not show weakness.
Strategies for Outreach and Education
37

· Hispanics' biggest barriers to accessing health care are money,
time, and language. Other common problems include lack of
insurance, problems with transportation or childcare, and
getting off work to see a doctor.
· Although face-to-face interaction is important, Hispanics would
not welcome unknown health educators or volunteers into their
homes. Men lack trust in a Federal Government source, while
most women tend to trust it.
Potential Solutions
Cultural strategies:
· Collaborate with people who are from the communities and speak
Spanish. Community members can identify with people who have
a direct tie to their situation. Personal interaction is very
important. Testimonials from local pastors, Hispanic celebrities,
or doctors who have experienced cancer themselves are beneficial.
· When translating materials, at least two bilingual, bi-cultural
translators should be used to translate materials. In addition,
materials should be pilot-tested with the target audience.
· Involve family members in learning about the risks and
benefits of clinical trials. Sometimes children have learned
to speak English more quickly than their parents, so they
can be helpful in translating forms and brochures. It is
important to note, however, that using children as translators
has both pros and cons. It is preferable to use someone who
is trained for this work.
· Ensure that the informed consent process truly reflects the
participant's understanding of the risks and benefits of the
clinical trial. Involving family, members from the participant's
community, and culturally competent staff are some ways to
help verify that the participant has received the information in
a way that he or she can understand and made the decision to
participate voluntarily.
Language strategies:
· Find respectful ways to make sure that information is
understood. When people do not understand English, they
may say "yes" or nod, even if they do not understand what
is being said. To ensure that the person you are talking with
understands what you have said, staff may ask, "Many people
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have a hard time understanding information like this. I want to
make sure that I explain it clearly. Could you please tell me, in
your own words, what I have just said."
· When translating materials, at least two bilingual, bicultural
translators should be used. In addition, materials should be
pilot-tested with the target audience.
Program strategies:
· Take the outreach program out to community and
neighborhood centers as well as to other sites that are already
familiar to Hispanics. Consider partnering with existing groups
that are already working with the community.
· Use family-oriented, positive messages as much as possible
to offer hope.
· Use radio and newspapers for outreach. Spanish-language
media­­especially television and radio talk shows­­are popular
sources of health-related information for many in these
communities. Printed materials with many
pictures/illustrations and minimal text are preferred.
Information on Other Underserved Groups
Older Adults
When considering older people and clinical trials, it is important to
note that approximately 60 percent of all cancers occur in people
aged 65 and older, and the number of people over age 65 is
expected to double by the year 2033. The elderly are an important
group to include in clinical trials.
Because of mobility problems, transportation (including escort
assistance) is one of the most important challenges specific to older
people. Literacy issues (see below) are also a challenge that must
be addressed when educating older adults.
Fostering positive doctor-patient interaction is another difficulty
because often the older population is reluctant to question or
challenge doctors and may be afraid to offend by changing doctors.
This is compounded when doctors do not refer older adults to trials
because of the assumption that they are too old or sick for a trial.
Strategies for Outreach and Education
39

Older persons are more likely to be living on fixed incomes, so the
financial aspects of clinical trial participation may be heightened.
The family, or other social support, is another important
consideration because it is often involved in the older person's
treatment and decision-making process.
It is important to inform older adults that Medicare reimburses for all
routine care costs for its beneficiaries participating in clinical trials.
People with Low Literacy Skills
19
"Many Americans face the serious problem of not being able to
read or understand information. According to the 1992 National
Adult Literacy Survey (NALS), some 40 to 44 million of the 191
million adults in the United States are functionally illiterate.
Another 50 million are only marginally literate. Functional literacy
represents more than just the ability to read. It involves reading
comprehension as well as the ability to compute, communicate,
write, and solve problems. These skills are especially important for
patients in acquiring general information and applying it to their
specific circumstances."
"When applied to the health system, low functional literacy
translates into low health literacy. Health literacy is defined as the
ability to obtain, interpret, and understand basic health
information and services, as well as competence and motivation to
use such information and services in ways that enhance one's
health. Most health-related educational materials use simplified
printed materials to convey information, assuming that people can
read. Most adults do read, but many have difficulty understanding
what they read and applying generalized information to their own
specific situation."
"One common assumption is that certain populations have
low levels of functional literacy. For example, traditionally
"underserved" populations such as those with low incomes are
labeled as having low levels of functional literacy simply because
they are, on average, less educated. However, low functional literacy
is not defined by race, class, or even educational attainment."
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Ways to Help People With Low Health Literacy Skills
"One-on-one assistance is the most effective technique for
educating this group. In addition to helping people gain a better
understanding of the clinical trial and their health needs, one-on-
one assistance fosters trust between patients and the counselors or
health care professionals who help them. Comprehension should
be ascertained, but not by asking, "Do you understand?" Often the
"teach back" method works well."
"Group assistance offers an arena in which people can obtain
information from educators and through the questions asked
by others in the group. This technique often supplements
one-on-one counseling."
"Visual tools are designed to simplify concepts such as instructions
for care that are too complicated to understand in written form or
through verbal communication. Visual tools are particularly useful to
those who cannot read at all. Videotapes may be useful tools, but
followup discussion is necessary in order to ascertain comprehension."
Lesbian, Gay, and Bisexual Individuals
The lesbian, gay, and bisexual (LGB) community is diverse in terms
of cultural background, ethnic or racial identity, age, education,
income, rejection or acceptance of societal stereotypes, and
prejudice. As with other minority groups, discrimination and bias
can play a role in inadequate medical assessment, treatment, and
prevention of LGB health problems. In addition, lesbians may be at
a greater risk of cancer because of issues associated with health care
access, delayed or lack of childbearing, screening, and insurance.
Little information is available about specific clinical trial barriers for
the LGB population. Significant barriers that must be addressed
include:
· Previous negative health care experiences
· Fear of sexual orientation disclosure
· Perceived or actual exclusion from health promotion campaigns
· Misinformation about risks and screening
· Exclusion of significant others
Strategies for Outreach and Education
41

References
1. U.S. Census Bureau. U.S. Department of Commerce, Census 2000. Available at
http://www.census.gov
1a. U.S. Census Bureau. U.S. Department of Commerce Health Insurance
Coverage: 2001 Issued September 2002. Available at http://www.census.gov
2. Sateren, W. B., Trimble, E. L., Abrams, J., Brawley, O., Breen, N., Ford, L.,
McCabe, M., Kaplan, R., Smith, M., Ungerleider, R., Christian, M. C. (2002).
How sociodemographics, presence of oncology specialists, and hospital
cancer programs affect accrual to cancer treatment trials. Journal of Clinical
Oncology Apr 15;20(8):2109-17.
3. Edwards, B. K., Howe, H. L., Ries, L. A. G., Thun, M. J., Rosenberg, H. M.,
Yancik, R., Wingo, P. A., Jemal, A., Feigal, E. G. (2002). Annual report to the
nation on the status of cancer, 1973-1999, featuring implications of age and
aging on the U.S. cancer burden. Cancer May 15;94(10):2766-2792.
Supplemental data on SEER Cancer Incidence 1992-1999 and SEER Cancer
Prevalence 1992-1999 Available at
http://seer.cancer.gov/reportcard/supplemental.html
4. American Cancer Society. (2002). Cancer facts and figures 2002.
Atlanta, GA: Author.
5. Roberson, N. L. (1994). Clinical trial participation: Viewpoints from
racial/ethnic groups. CANCER Supplement, 74(9), 2687-2691.
6. Guilano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho,
R. C. S., Prewitt, T. E., & McCaskill-Stevens, W. J. (2000). Participation of
minorities in cancer research: The influences of structural, cultural, and
linguistic factors. Annals of Epidemiology, 10(8), S22-S34.
7. Brown, D.R., Fouad, M. N., Basen-Enguist, K., & Tortolero-Luna, G. (2000).
Recruitment and retention of minority women in cancer screening,
prevention, and treatment trials. Annals of Epidemiology, 10(8), S13-S21.
8. Royal, C. D., Baffoe-Bonnie, A., Kittles, R., Powell, I., Bennett, J., Hoke, G.,
Pettaway, C., Weinrich, S., Vijayakumar, S., Ahaghotu, C., Mason, T., Johnson,
E., Obeikwe, M., Simpson, C., Mejia, R., Boykin, W., Roberson, P., Frost, J.,
Faison-Smith, L., Meegan, C., Foster, N., Furbert-Harris, P., Carpten, J., Bailey-
Wilson, J., Trent, J., Berg, K., Dunston, G., & Collins, F. (2000). Recruitment
experiences in the first phase of the African American hereditary prostate
cancer (AAHPC) study. Annals of Epidemiology, 10(8), S68-S77.
9. Lee, M. (1999). Breast and cervical cancer early detection in Chinese American
women. Asian-American Pacific Islander Journal of Health, 6, 358-367.
10. Taylor, V., Jackson, J., Schwartz, S., Yasui, Y., Tu, S., & Thompson, B. (1999).
Cervical cancer control in a Cambodian American population. Asian-American
Pacific Islander Journal of Health, 6, 368-377.
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11. Shinagawa, S. M., Kagawa-Singer, M., Chen, M. S., Tsark, J. U., Palafox, N. A.,
& Mackura, G. (1999). Cancer registries and data for Asian Americans and
Native Hawaiians and Pacific Islanders: What registrars need to know.
Journal of Registry Management, 26(4), 128-141.
12. Miller, B. A., Kolonel, L. N., Bernstein, L., Young, Jr., J. L., Swanson, G. M.,
West, D., Key, C. R., Liff, J. M., Glover, C. S., Alexander, G. A., et al. (Eds).
(1996). Racial/ethnic patterns of cancer in the United States 1988-1992 (NIH
Publication No. 96-4104). Bethesda, MD: National Cancer Institute.
13. Papa Ola Lokahi. (May 1, 2001). Personal communication. Honolulu, HI
and Tsark, J. U. (1998). Cancer in Native Hawaiians. Pacific Health Dialog,
5, 315-327.
14. Hodge, F. S., Weinmann, S., & Roubideaux, Y. (2000). Recruitment of
American Indians and Alaska Natives into clinical trials. Annals of
Epidemiology, 10(8), S41-S48.
15. Burhansstipanov, L. (Director, Native American Cancer Research
Corporation). (April 2001). Interview. Pine, CO.
16. U.S. Department of Health and Human Services. (1997). Regional differences in
Indian health. Rockville, MD: Indian Health Service.
17. Lanier, A. P., Holck, P., Kelly, J., Smith, B., & McEvoy, T. (1999). Alaska Native
cancer survival report. Anchorage, AK: Alaska Native Health Board.
18. U.S. Census Bureau. US Department of Commerce, Health Insurance
Coverage, by Selected Characteristics: Issued October 1999. Available at
http://www.census.gov
19. American College of Physicians--American Society of Internal Medicine.
(2000). No health insurance? It's enough to make you sick. Latino community at
great risk. Philadelphia: Author. Available: American College of
Physicians-American Society of Internal Medicine, 190 N. Independence
Mall West, Philadelphia, PA, 19106.
20. National Cancer Institute. (1996). Communicating with Hispanic cancer patients:
A focus group study. Washington, DC: Author.
21. Center for Medicare Education. (2000). Considering health literacy. (Issue brief,
volume 1, no. 6). [Online], Available: http://www.MedicareEd.org
Other sources utilized for this section include:
Alexander, G. A., Chu, K. C., & Ho., R. C. S. (2000). Representation of Asian
Americans in clinical cancer trials. Annals of Epidemiology, 10(8), S61-S67.
Atkinson, J., & Hartmuller, V. (1994). Strategies for minority recruitment. In PCPT
minority recruitment manual. Bethesda, MD: National Cancer Institute.
Brant, J. (1996). Breast cancer challenges in American Indian women. In K. H.
Dow (Ed.), Contemporary issues in breast cancer (pp. 243-252). Sudbury, MA:
Jones and Bartlett.
Strategies for Outreach and Education
43

Brant, J., Fallsdown, D., & Iverson, M. (1999). The evolution of a breast health
program for Plains Indian women. Oncology Nursing Forum, 26(4), 731-739.
Bunn, P., & Krebs, L. (1997). Colorado blueprint: Women and minorities in cancer
care trials. Denver, CO: University of Colorado Comprehensive Cancer Center.
Center for Lesbian, Gay, Bisexual, and Transgender Health. (2000). Lesbian, gay,
bisexual, and transgender health: Findings and concerns. New York: Columbia
University's Joseph L. Mailman School of Public Health.
Chen, A. M. (1996). Demographic characteristics of Asian and Pacific Islander
Americans: Health implications. Asian-American and Pacific Islander Journal of
Health, 4, 40-49.
Chu, K. C. (1998). Cancer data for Asian Americans and Pacific Islanders.
Asian-American and Pacific Islander Journal of Health, 6(2), 130-139.
Haynes, M. A., & Smedley, B. D. Committee on Cancer Research Among
Minorities and the Medically Underserved. (1999). The unequal burden of cancer:
An assessment of NIH research and programs for ethnic minorities and the medically
underserved. Health Sciences Policy Program, Health Sciences Section, Institute
of Medicine. Washington, D.C.: National Academy Press.
Hughes, C. K, Tsark, J. T., Kenui, C. K., & Alexander, G. A. (2000). Cancer
research studies in Native Hawaiians and Pacific Islanders. Annals of
Epidemiology, 10(8), S49-S60.
Kagawa-Singer, M., Millon-Underwood, S., Burhansstipanov, L., & Munet-
Vilaro, F. (1994). Nursing research and underserved populations. In Proceedings
of the Third National Conference on Cancer Nursing Research. Atlanta, GA:
American Cancer Society.
Lin-Fu, J. S. (1994). Ethnocultural barriers to health care: A major problem for
Asian and Pacific Islander Americans. Asian-American and Pacific Islander
Journal of Health, 2, 290-298.
McCabe, M. S., Varricchio, C. G., & Padberg, R. M. (1994). Efforts to recruit the
economically disadvantaged to national clinical trials. Seminars in Oncology
Nursing, 10(2), 123-129.
Millon-Underwood, S. (1994). Barriers to minority participation in clinical
trials. In PCPT minority recruitment manual. Bethesda, MD: National Cancer
Institute.
Millon-Underwood, S., Sanders, E., & Davis, M. (1993). Determinants of
participation in state-of-the-art cancer prevention, early detection/screening,
and treatment trials among African-Americans. Cancer Nursing, 16(1), 24-33.
National Cancer Institute. (1997). Talking to patients and the public about cancer
clinical trials: Findings from NCI's "Science Awareness Research." Bethesda, MD:
Author.
44
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National Clearinghouse for Alcohol and Drug Information. (2000). [Online],
Available: http://www.health.org/features/multicultural
Paskett, E. D., DeGraffinreid, C., Tatum, C. M., & Margitic, S. E. (1996). The
recruitment of African-Americans to cancer prevention and control studies.
Preventive Medicine, 25, 547-553.
Shinagawa, S. M., Kagawa-Singer, M., Chen, M., Tsark, J., Palafox, N., & Mackura,
G. (1999). Cancer registries and data for "Asian Americans" and "Native
Hawaiians and Pacific Islanders": What registrars need to know. Journal of Registry
Management, 26(4), 128-141.
Susan G. Komen Breast Cancer Foundation. (1999). Suggestions to enhance the
participation of women of color in breast cancer prevention trials. In Clinical Trial
Community Outreach Efforts. Dallas, TX: Author.
The Mautner Project for Lesbians with Cancer. (2001). [Online], Available:
http://www.mautnerproject.org/
Thomas, S. B., Quinn, S. C., Billingsley, A., & Caldwell, C. (1994). The
characteristics of Northern Black churches with community health outreach
programs. American Journal of Public Health, 84(4), 575-579.
Underwood, S. (2000). Minorities, women and clinical cancer research: The
charge, promise, and challenge. Annals of Epidemiology, 10(8), S3-S12.
Strategies for Outreach and Education
45

2.
Ways
to
Educate
Yourself

2
Ways to Educate Yourself
What You Can Do
· Use NCI resources to keep up-to-date with new clinical trial
information, including www.cancer.gov
· Find local clinical trials in your community
· Attend conferences, meetings, and workshops
Why?
· To continue to learn about developments in cancer clinical trials
· To be an informed community educator
Introduction
One of the most important ways to get started in clinical trial
outreach and education is to make sure you learn as much as you
can about clinical trials. This section provides resources that you
can use to learn more about clinical trials.
Education and Outreach in Action
A 60-year-old insurance salesman was treated for prostate cancer
2 years ago. He recently decided that he wanted to learn more
about clinical trials after he saw a TV special about them. "I'm
amazed about what I don't know about what clinical trials are
going on right here in (my community). I want to make sure
that men who go to my support group understand information
about clinical trials."
Ways to Educate Yourself
47

1. Use NCI Resources
The NCI Web site, www.cancer.gov, contains information from PDQ
®,
including the latest information about cancer treatment, screening,
prevention, genetics, supportive care, and complementary and
alternative medicine, as well as a registry of cancer clinical trials.
Clinical oncology specialists review current literature from more than
70 medical journals, evaluate its relevance, and synthesize it into
clear summaries, which are then reviewed monthly and updated as
needed based on new information. Most cancer information
summaries appear in two versions: a technical version for the health
professional and a nontechnical version for patients, their families,
and the public. Many of the summaries are also available in Spanish.
The NCI Web site also includes approximately 100 fact sheets on
various cancer-related topics and information on ordering NCI
publications, as well as educational features and news summaries
concerning the latest results from cancer clinical trials.
The clinical trials registry (PDQ) contains more than 1,800 ongoing
clinical trials, with information about studies around the world.
All clinical trials undergo review prior to inclusion. Although no
single resource lists every cancer clinical trial being conducted in
the United States and abroad, PDQ is the most comprehensive
cancer clinical trials registry, and contains information about trials
sponsored by NCI, the pharmaceutical industry, and some
international groups. Users can narrow their retrieval by multiple
parameters, such as stage of disease, phase of trial, treatment
modality, and geographic location. PDQ also contains an archival
file of more than 11,000 clinical trials that are no longer accepting
patients, including contact information for the principal
investigators of trials that may not yet be published in the
biomedical literature.
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Accessing Information from NCI
NCI's Cancer Information Service
NCI's Cancer Information Service (CIS) is a national information
and education network for patients, the public, and health
professionals. From regional offices covering the entire United
States, Puerto Rico, and the U.S. Virgin Islands, trained staff
provide the latest cancer information through a toll-free telephone
service. Staff can respond to calls in either English or Spanish.
How to Reach the CIS
The toll-free number is 1-800-4-CANCER (1-800-422-6237). For
deaf and hard of hearing callers with TTY equipment, the
number is 1-800-332-8615. Hours of operation are Monday
through Friday, 9:00 a.m. to 4:30 p.m., local time. Callers also
have the option of listening to recorded information about
cancer 24 hours a day, 7 days a week.
See the guide to clinical trial resources on page 52 for other sources
of clinical trial information.
Ways to Educate Yourself
49

2. Find Local Clinical Trials in
Your Community
A good way to educate yourself about clinical trials is to become
familiar with both the local institutions conducting clinical trials
and the clinical trials themselves. As you begin to think about
ways you would like to take action, it will be important for you to
understand where clinical trials are taking place.
Creating a List
You may want to create a list that identifies cancer clinical trials in
your community. Collecting this information using the "Clinical
Trial Community Resource Sheet" provided on the next page can
help you direct interested community members to the best clinical
trial resources available.
This information can help you:
· Understand clinical research in your community
· Understand some of the barriers to participating in clinical trials
in your community
· Provide local clinical trial resources to the organizations or
individuals with whom you are working
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Clinical Trial Community Resource Sheet
You may use this sheet as a reference for yourself or your organization, or you may develop it
into a local fact sheet for distribution. Remember that clinical trial information becomes out of
date very quickly, so you will need to update this sheet at least every 3 months. To locate
information needed to complete this worksheet, you can:
· Call the National Cancer Institute's (NCI's) Cancer Information Service at
1-800-4-CANCER. Trained information specialists can search the NCI clinical
trial database, PDQ, and provide contact information for local trials.
· Visit the Web site www.cancer.gov, to search the PDQ database on your own.
· Use the clinical trial resources sheet that follows for other ways to find local trials.
Type of Trial/
Phase
Protocol
Institution
Point of
Phone
Type of Cancer
ID#
contact
number
Ways to Educate Yourself
51

Guide To Finding Clinical Trial Resources
What is it?
How do I access it?
What will it provide?
National
Database produced by NCI
Go to www.cancer.gov
Summaries about clinical
Cancer
trials conducted by NCI-
Go to the clinical trials area
Institute's PDQ
Registry of approximately
sponsored researchers, the
1,800 active cancer clinical
and follow the search
pharmaceutical industry,
trials
directions
and some international
OR
groups
Call 1-800-4-CANCER
National
Database produced by NIH
Go to www.clinicaltrials.gov
Summaries about clinical
Library of
trials for a wide range of
Registry now lists 4,000
Medicine
Can browse by disease or
conditions--most of the
primarily NIH-supported
sponsor or insert key words
trials listed are sponsored
clinical studies on many
by NIH
conditions, and more will
be added
All trials on PDQ are listed in
this database
Food and Drug
A list of sources prepared by
Go to www.fda.gov/oashi/
Web addresses and
Administration's
FDA's Office of Special Health
cancer/trials.html#table
telephone numbers
Cancer Clinical
Issues
Can browse by disease for
Trials Directory
Information listed on the
Guides user to other Web
different sources
Web sites in this directory
locations for institutions that
varies widely
conduct or list cancer clinical
trials
Local Cancer
Locally produced Web sites
Different sites can be found
Information that varies
Center Web
that include listings for trials
through:
from center to center
Sites
sponsored by NCI and some
· www.cancer.gov
www.cancer.gov
pharmaceutical companies
· Local institutions
· Call 1-800-4-CANCER for a
Good supplementary
center near you
resources for locating clinical
trials; a cancer center may
Information on trials taking place
begin participating in an NCI-
at NCI's Clinical Center in
sponsored trial before the
Bethesda, Maryland, is available
center's information is listed in
at http://ccr.nci.nih.gov
CancerNet/PDQ
Some centers may also have
telephone information centers
Examples of
Pharmaceutical Research and
PhRMA
Descriptions, sites,
Pharmaceutical
Manufacturers of America
Go to http://www.phrma.org
telephone numbers,
Resources/
(PhRMA) publishes a list of
and investigator names
new cancer drugs in
Click on "New Medicines in
by State
Internet Clinical
development
Development" and search by
Trial Matching
disease. The drugs are listed
by cancer type or call 202-835-3400.
Sites
CenterWatch's Clinical
Trials Listing Service and
CenterWatch
EmergingMed.com list many
Go to www.centerwatch.com
industry- and Government-
Click on "Trial Listings"
sponsored trials
EmergingMed.com
Go to http://www.emergingmed.com/
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3. Attend Conferences, Meetings, and
Workshops
Some people find that attending scientific meetings keeps them up
to date, helping them become better educators.
Attending Local Meetings and Courses
Many local hospitals and cancer centers hold public events,
educational workshops, and lectures on a variety of topics related
to clinical trials. Contact your local institution's community
relations department to find out if it holds such events and when
they are scheduled.
Learning through the Internet
Many of the large cancer centers have free online courses for the
public, some of which may be related to clinical trials. See the Web
site www.cancer.gov for a list of NCI-designated cancer centers and
their Web sites to learn more about specific online courses.
Attending National Meetings
Scientists present the results of their research at large meetings
before the results are published in the literature. Two annual
meetings of importance to cancer research are:
1. American Association of Cancer Research in March of each year
(Web site is www.aacr.org)
2. American Society of Clinical Oncology in May of each year (Web
site is www.asco.org)
Both feature daily meeting updates on their Web sites.
Many scientific meetings are open and free to the public. Others
have reduced fees for survivors or advocates.
Ways to Educate Yourself
53

The NCI event calendar provides a centralized and easily
accessible place to obtain information about many cancer-related
scientific meetings and events nationwide. The calendar can
be found on the Web at www.cancer.gov. You can also call
1-800-4-CANCER to get information about these meetings.
To help you plan educating yourself, see the Plan for Action in
the Appendix.
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3.
Ways
One-on-One
to
Educate
Others,

3
Ways to Educate Others,
One-on-One
What You Can Do
· Find opportunities to talk to others--neighbors, friends, and
coworkers--about clinical trials, common myths surrounding
clinical trials, and where to find more information on clinical trials
· Help others understand how to evaluate research in the news
Why?
· To address the many misconceptions that exist about clinical trial
treatment options
· To provide clinical trial information to individuals making
treatment or prevention decisions
Introduction
As someone who knows a lot about clinical trials, you will often be
given the opportunity to talk to individuals about their cancer,
cancer of a loved one, or being at high risk for cancer. One of the
best ways to educate other people is to talk informally about what
you are learning about clinical trials.
As you seek opportunities to speak to others, keep in mind that it's
important to be able to answer common questions about clinical
trials. But it's also important to admit when you don't know the
answers, and to seek other resources for information.
This section will guide you through some ideas to talk to others
about clinical trials.
For more information on strategies for clinical trial education,
and working with ethnically diverse populations, see section 1.
Ways to Educate Others, One-on-One
55

Education and Outreach in Action
A high school teacher who is a cancer survivor is finding ways
to spread the word about clinical trials.
Because she is active in her church, she finds herself talking to
many people whose lives have been touched by cancer. She
says, "People call me the cancer lady, but I don't care." She is
often asked to talk to fellow church members about her
experience with cancer and her treatment on a clinical trial.
She says, "I used to think that clinical trials treated people like
guinea pigs--a lot of folks do. I think people need to know the
facts about clinical trials. No one likes to hear their own name
associated with the word `cancer.' But, how many times does
someone hear about a co-worker, a friend, or a neighbor who
was just diagnosed with cancer? That's how I approach other
people. I tell them that it's important that cancer patients talk to
their doctor about all their options. That's the best help that I
can provide someone."
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1. Get Started--Circle of Connections
With Individuals
Finding Opportunities to Talk to Others
You may be active within one specific organization or have
connections with many different community groups. As you think
about the importance of clinical trials, think about where and how
you can become a clinical trial resource to people you know. How
can you help other people learn about clinical trials?
In the circles below, write down the names of at least four people
with whom you feel you can discuss clinical trials. Think about
these people as you work through this section.
People I see occasionally and where
People I see once a month and where
I see once a week and whe
eople
r
P
e
I see every day and wh
ople
e
e
r
P
e
Me
Ways to Educate Others, One-on-One
57

2. Talk to Others--Tips
One way to provide support to others is to help those diagnosed
with cancer, and those at high risk for developing cancer, to learn
more about the option of participating in a clinical trial. Equally
important is explaining clinical trials to those who are not facing a
cancer diagnosis, but who are interested in why they are important.
Here are some tips to get you started on this conversation; keep in
mind that conversations need only be a few minutes long:
1. Express empathy for the person's situation.
2. Use active listening skills.
3. Ask whether the person would like to hear some information
about cancer clinical trials.
4. In your own words, talk about why clinical trials are
important.
If relevant:
5. Discuss clinical trials as an option for treatment and
prevention. Remember that clinical trials are not the right
option for everyone.
6. Review some of the benefits and risks to participating in
clinical trials.
7. Respond to common myths associated with clinical trials.
8. Explain some key ways that participants' safety is protected
in clinical trials.
9. Explain some of the barriers associated with clinical trials
for patients.
10. Know how to answer common questions about clinical trials.
But, admit when you don't know the answers. Have resources
available (such as those in this series) and the Cancer
Information Service's 1-800-4-CANCER.
11. Be aware of cultural sensitivities around clinical trial issues.
(See section 1.)
12. Understand the local clinical trial resources in
your community.
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3. Help Others Understand How to Evaluate
Research in the News
People often hear about the results of clinical trials from overly
positive or overly negative media reports. These reports often
influence the way they think about clinical trials and can help
to reinforce common myths. When you find yourself talking to
others about clinical trials, it will be important for you to respond
to these reports in a thoughtful way. Here are some questions to
consider as you help others evaluate these types of media reports.
Some of these questions will not be answered by a short article in
a newspaper. You may need to locate the original research article
by using PubMed or another medical library database.
1. Who wrote this article?
Any good news article should list the author, his or her
institution, and if the author is not a reporter, his or her
background. Reporters are trained to be objective, but
they often report on what seems newsworthy and may
miss key facts. Some institutions may not list the author
of an article, in which case the institution itself should
be considered the author. Newspapers often use "wire
reports," such as the Associated Press (AP), and often
include materials excerpted directly from press releases.
2. What is the basis of the information in the article?
In addition to identifying who wrote the article you are
reading, the evidence that material is based on should
be provided. Medical facts and figures should have
references (such as an article in a medical journal or the
consensus of a meeting of experts reviewing research
evidence); anecdotal evidence, opinions, or advice
should be clearly set apart from information that is
"evidence-based" (that is, based on research results).
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3. Does the article say if the study involved people,
animals, or cells in the laboratory?
In early cancer research or preclinical testing, scientists
test promising new cancer treatments in the laboratory
and in animal models. This is done to find out if the
treatment has an anticancer effect and if it is safely
tolerated in animals. Only if a new drug proves
promising in the lab does it move to testing in humans.
Clearly, preclincial research only suggests future
direction, and cannot be applied directly to all people
with a particular type of cancer.
4. Does the article include information on the phase of
the study and number of participants?
Clinical research is generally conducted in three
different types of studies called phase 1, 2, and 3 studies,
reflecting the order in which they take place. Each
phase of a study has a different goal and, although they
are often conducted separately, they can be conducted
as part of the same study.
News articles may not mention the study phase.
However, if an article refers to an "early" study, it
generally refers to a phase 1 or 2 study. If an article
discusses different groups of patients getting different
types of treatment or different doses of a drug, or
mentions that a study was "randomized," it usually
means the study was a phase 3 study. Occasionally,
phase 2 studies may be randomized.
5. If the study includes a new agent or device, has it
been approved by FDA?
The Food and Drug Administration (FDA), an agency of
the U.S. Department of Health and Human Services,
must review all test results for new agents to ensure that
products are safe and effective for specific uses.
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FDA applies two key questions to each application for
drug approval:
· Do the results of well-controlled studies provide
substantial evidence of effectiveness?
· Do the results show the product is safe under the
conditions of use in the proposed labeling? (In this
context, "safe" means that potential benefits have
been determined to outweigh any risks.)
Only when FDA makes the approval does it allow the
drug to be "labeled" for a specific use. This label includes
information on what kinds of people should be given the
drug, the dosage of the drug, and information on safety
and adverse effects. It is only at this time that the new
drug can be given to people outside of a clinical trial.
6. What were the characteristics of the people who
participated in the study?
Sometimes, studies are done only in specific groups of
people--for example, people in a particular age group,
or those whose cancer is at a particular stage. This may
mean that the study results may not apply to those who
are not members of these specific groups.
7. Does the article discuss the benefits and risks for
those participating in the study in a balanced way?
Just as there are potential side effects to all medications,
there are benefits and risks to all clinical trials. The
article should fully describe the known benefits and
risks, as well as note that there may be side effects or
risks that are unknown. If the article appears to be one-
sided or overtly positive, you may be justified in having
some skepticism about the author's motives.
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8. Who funded the study?
Studies can be funded from many sources. The most
common sources in the United States are the Federal
Government, universities, private foundations, or
industry (such as pharmaceutical companies or
companies making a device that is being tested). If a
researcher has received funding from a source, such
as the Federal Government, that uses a peer review
process for evaluating and awarding research funds,
the research findings will be more credible and less
subject to bias than if the sponsor has a vested interest
in the results.
9. Who conducted the study?
It is important that research studies have scientific
review and ongoing oversight. Studies that have been
through this level of scrutiny are more likely to
produce high quality results than those that have not
been reviewed.
10. Were the study results "peer reviewed" or just
announced at a meeting or through a press release?
If the news article was based on a published article in
a peer-reviewed journal, it means that other experts
have examined and critiqued the researchers' methods
and findings.
To help you plan to educate others, see the Plan for Action in
the Appendix.
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4.
Ways
Outreach
to
Conduct
and
Education
Community

4
Ways to Conduct Community
Outreach and Education
What You Can Do
· Find opportunities and develop a strategy to speak about clinical
trials and/or:
­ Present NCI Clinical Trials Education Series slide programs
or the awareness video, "Cancer Trials...Because Lives
Depend on It"
­ Distribute educational booklets and brochures (see the complete
list of materials at the front of this guide):
- At meetings or events
- Through doctors' offices
- Through a booth at health fairs or events for local research
institution(s)
· Write articles for newsletters; post articles on Web sites
· Host an information session or community forum on clinical trials
· Form a clinical trial advocacy coalition
Why?
· To provide information to people about cancer clinical trials
before they are faced with a cancer diagnosis
· To provide information about a specific cancer trial to members of
your community
· To provide people with the tools they need to find out about trials
in your community
· To educate interested members of the public about the
importance of cancer clinical trials
· To help debunk myths about clinical trials in the community
· To develop a community strategy for clinical trial outreach
Ways to Conduct Community Outreach and Education
63

Introduction
This section provides ideas for educating your community about
clinical trials. Whether you use personal contacts, community
organizations, or health-related organizations, remember that
combining strategies to get clinical trial messages out to your
community will make your outreach more successful. Using
different ways to get out critical messages about clinical trials
increases the chance that people in your community will absorb
and remember them.
See the NCI Trainer's Guide for Cancer Education for ways to
teach others about these issues. Information about ordering
can be found at the front of this guide.
Education and Outreach in Action
A chapter of a local cancer advocacy organization had been
trained about clinical trials. Several members organized a
community forum, inviting the local researchers on a breast
cancer prevention trial to speak. They also invited several
women who considered participating in the trial. More than
75 people attended the forum at the local YMCA.
A local cancer support group has a Web site and a quarterly
newsletter. The group's education committee copied the
articles included here and put them on its Web site and in its
newsletter. At the next meeting, the group decided that all of
its members should learn about clinical trials.
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1. Get Started--Circle of Connections
With Groups
Everyone has connections with different groups in his or her
community. Some people represent a specific organization. Others
may have connections with many different community groups.
As you think about the importance of clinical trials, think about
where and how you can become a clinical trial resource to these
groups. How can you help engage the organization in this issue?
In the circles below, write down at least five groups or
organizations you feel you can educate. The groups don't need to
be cancer-related, but should have a health focus. Keep these
groups in mind as you complete this section.
Groups I see occasionally
Groups I see once a month
Groups I see once a week
roups I see every day
G
Me
Ways to Conduct Community Outreach and Education
65

2. Expand Your Organization's "Community"
It is important to think broadly about other organizations with
which you can partner, whether you are part of a group or
organization that already has a clinical trial agenda, or if you want
your group to develop one.
A given geographical area includes many "communities." In the
following table, write down the organizations you identified on
the previous page.
Then, think about:
· Reaching out to other groups in your community who are likely
to share clinical trial priorities
· Partnering with organizations with which you haven't yet worked
· Contacting people who can put you in touch with key leaders
of these groups
The pages that follow will help you prioritize your outreach efforts.
It will be important to consider balancing your efforts between
groups that are easy to reach with others that will take more effort.
For more information on working with different
ethnic/minority groups, see section 1.
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Organization Contact Worksheet
Organization Type
Examples in My Community
Contact People in Community
Advocacy organizations
African American, Asian
American, Latino, and
Native American-based
organizations
Cancer-oriented nonprofit
organizations
Cancer support groups
CDC Breast and Cervical Cancer
Early Detection Program coalition
members (Hint: check with your
State health department)
Chambers of commerce
Community cancer centers
Community health centers/
public health clinics
Employee associations of
large companies
Health care professional
associations (doctors, nurses,
social workers, health
educators, etc.)
Hospital education departments
Ways to Conduct Community Outreach and Education
67

Organization Type
Examples in My Community
Contact People in Community
Hospitals and research
institutions
Housing organizations
Labor union locals
Lesbian/gay organizations
Men's organizations
Religious organizations/houses
of worship
Senior citizens' organizations
Service organizations, such as
Rotary, Lions, Kiwanis, Jaycees,
Junior League
State cancer control committees
Veterans' groups
Women's organizations
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3. Prioritize--Develop a Strategy and
Philosophy for Outreach and Education
As you begin to consider different outreach and education
activities, you'll need to think strategically. Answering the
following questions can help ensure the success of your outreach
and education efforts.
Setting Objectives
· Why should we get involved with clinical trial outreach
and education?
· What is the problem we want to address? (Be realistic!)
· What is the goal or expected outcome of our efforts?
Conducting Research
· Is our clinical trial advocacy goal clear and realistically attainable?
· Who are our primary allies?
· Have similar clinical trial education efforts been attempted in
the past, either in our community or elsewhere? What lessons
can be learned from them?
· What is the most compelling information that we can use to make
our case? (Think about your targets as you answer this question.)
Considering "Targets"
In figuring out who your audience is, keep in mind that the "general
public" is not specific enough to be a target audience. Ask:
· Who are the key targets for our efforts?
· Are there key people who can help our efforts in reaching
these audiences? Leaders of professional organizations?
Community leaders?
· Who is our "community," and how can it be expanded?
(Use your sheet on page 67.)
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69

Considering a Philosophy
The questions that follow represent a simplified framework for
outreach and education efforts that could be large and complex.
The more complete your initial answers, the more likely it is that
your efforts will proceed smoothly and successfully. Consider
the following:
· What are the most appropriate ways for our community to learn
about clinical trials?
· Do we want to simply inform people? Or do we want to
influence attitudes and change behavior?
· Which channels best fit our message about clinical trials?
· What avenues are most likely to be credible to and accessible
by our community or our "targets"? Meetings? Trainings?
The media? Mail? Networks of contacts? Doctors' offices?
Community races?
· How can we complement existing cancer awareness activities,
such as national theme months (e.g., October is Breast Cancer
Awareness Month), local health fairs, and local hospital events,
in our efforts?
· Who are our best spokespeople? How can we use community
leaders in our outreach efforts?
· Does timing play an important role in some of our planned
activities? Will other pending issues claim our targets' attention?
Tip
If you are not from the population(s) you seek to work
with, it is critical that you or your organization develop
partnerships with organizations from those communities.
Keep in mind that different communities find different
information sources credible and may respond better to
certain outreach strategies. Forming partnerships with these
organizations, rather than simply asking them to join existing
efforts, can help ensure that your educational and outreach
efforts will be successful.
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4. Use NCI Audiovisual Materials to Make
Presentations
You can present clear information about clinical trials to local
groups by using one of NCI's three slide programs in the Clinical
Trials Education Series or the awareness video, "Cancer
Trials...Because Lives Depend on It." Most of these materials are
geared to the general public and feature interactive discussion
guides or talking points. By showing these materials at a meeting
or as part of a larger program, you can generate discussion on the
importance of clinical trials in your community. (See ordering
information at the front of this guide.)
5. Distribute Materials
Distributing materials is more than putting brochures out on a
display table. Consider the following ideas.
At Events or Meetings
· At meetings in which everyone receives a packet of material,
target educational materials by inserting a cover letter about
clinical trials signed by an influential person in your community.
· At events, such as health fairs or lectures, place materials out on
a table. Offer candy or water and cups. Instead of standing
behind a table, think about standing in front, to make your table
look more inviting. Greet people warmly.
Through Doctors' Offices
Partnerships may be developed with health care providers to educate
their patients about clinical trials. Primary care providers may be
willing to discuss prevention trials with their healthy patients. Some
may be willing to send out materials to their patients.
Through a Booth at Health Fairs or Events for Local
Research Institution(s)
Often local institutions will be eager to host a booth to discuss the
clinical trials they offer. These booths can also enhance community
awareness around clinical trials.
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71

6. Write Articles for Local Newsletters and
Web Sites
Local organizations' Web sites, listservs, and newsletters can be
targeted and effective ways to reach community members. Use the
sample newsletter articles provided here to submit to
organizational newsletters and Web sites.
Your organizations' own publications are one likely avenue. Other
organizations may also be eager to publish information. Review
each organization's media to understand better what they are
likely to publish:
· Who is the target audience?
· What types of articles are currently available?
· Who can help get this article published/online?
The Pros and Cons of Using Newsletters
Pros
· Newsletters are tools for intra- or interorganization
communication.
· Newsletters help show how organized your group is and help
keep your members and colleagues current on your activities.
· Newsletters have a very broad audience.
Cons
· Newsletters take time, money, and skill to produce.
· Newsletters are not well suited for publishing
late-breaking news.
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Sample Newsletter Article 1
Newsletter
Clinical Trials: An Important
research questions that will lead us
Part of Our Mission
to better treatment and prevention
options for all cancers. Doctors will
[Insert how clinical trials relate to your
organization's mission, and why you are
never know the true effectiveness
getting involved with clinical trial outreach
of a cancer treatment, or a way to
and education.]
prevent cancer, unless they are able
Just as there are misconceptions
to involve more people in clinical
about cancer screening tests, there
trials. And, research shows that
are misconceptions about clinical
few of us really understand what
trials. When people think about
clinical trials are.
clinical trials, many imagine
"guinea pigs"­­ participants getting
Cancer Treatment Trials
inferior treatment or a sugar pill
Most cancer clinical trials are
(placebo) instead of actual medical
treatment studies. These clinical
treatment. Many people also think
trials involve people who have
that clinical trials are for only the
cancer. These studies try to answer
people who have no other treatment
specific questions about and
options available to them. This
evaluate the effectiveness of a new
article provides an overview of why
treatment or a new way of using an
clinical trials are important, what
old treatment. Treatment trials seek
they do, and why they are a critical
to find out:
part of our work.
· What new treatment approaches
can help people who have cancer?
Why Clinical Trials Are Important
· What is the most effective
Clinical trials are a critical part of
treatment for people who have
the research process. Clinical trials
cancer?
help to translate basic scientific
In most cancer treatment trials, in
research into new treatments. By
which one treatment is compared
evaluating the results of these trials,
with another, people receive either
researchers are finding better
the most advanced and accepted
treatments for cancer and ways to
treatment for the kind of cancer they
prevent cancer. The more people
have--known as the "standard"
that participate in clinical trials, the
treatment--or a new treatment that
faster we can answer the critical
Ways to Conduct Community Outreach and Education
73

has shown promise of being at least
Possible Risks
as beneficial as the standard
· New approaches may have side
treatment, if not better. People in
effects or risks that are unknown.
these trials do not receive a placebo
· Even if a new treatment under
for their treatment.
study has benefits, it may not work
In the past, clinical trials were
for every participant.
sometimes seen as a last resort for
· Participants may have to pay for
people who had no other treatment
the costs of travel, childcare, lost
choices. Today, many people with
work hours, and meals.
cancer, even those whose cancers
[Discuss your community's education
have not spread, get their first
and outreach efforts.]
treatment in a clinical trial. All
people with cancer can benefit from
How to Learn More about Clinical Trials
learning about all their treatment
Call NCI's Cancer Information
options, which include participating
Service at 1-800-4-CANCER
in appropriate clinical trials.
(1-800-422-6237) and ask for a
customized search of the PDQ
Cancer Prevention Trials
database, which provides information
Unlike treatment trials, cancer
on current studies. Ask for the
prevention clinical trials are studies
following pamphlets:
involving healthy people who are at
· "Taking Part in Clinical Trials: What
high risk for developing cancer. These
Cancer Patients Need To Know"*
studies try to answer specific questions
· "Taking Part in Clinical Trials:
about and evaluate the effectiveness of
Cancer Prevention Studies"*
ways to reduce the risk of cancer.
· "If You Have Cancer... What You
Prevention trials seek to find out:
Should Know about Clinical
· What approaches can prevent a
Trials"* (easy to read)
specific type of cancer from
· "If You Have Cancer and Have
developing in people who have not
Medicare...You Should Know About
previously had cancer?
Clinical Trials"
Risks and Benefits
Or you can visit the clinical trials area
Clinical trials have both benefits
of the NCI Web site at www.cancer.gov.
and risks, and they are not the right
* Also available in Spanish
option for everyone.
Possible Benefits
· Participants have an opportunity
to make a valuable contribution to
cancer research.
· Participants have access to new
anticancer approaches before they
are widely available.
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Sample Newsletter Article 2
Newsletter
Key Facts about Cancer
develops cancer and who dies
Clinical Trials
from cancer among men and
Cancer clinical trials are research
women, and among people of
studies in which people help
different races, ethnicities, and
doctors find ways to improve health
socioeconomic backgrounds.
and cancer care. Each study tries to
Differences in cancer screening
answer scientific questions and find
and treatment have also been
better ways to prevent, diagnose, or
documented for people of
treat cancer. These studies are the
different ages, incomes,
final step in the process of
educational, and racial/ethnic
developing new drugs and other
backgrounds.
means to fight disease. Clinical
trials are the way we make progress
Understanding What Clinical Trials Do
against cancer.
to Fight Cancer
· Clinical trials are a critical part of
Understanding that Cancer
the research process. Clinical
Affects All of Us
trials help to translate basic
· Cancer affects us all--whether
scientific research into practical
we have it, care about someone
treatments. By evaluating the
who does, or worry about getting
results of these trials, we can find
it in the future.
better treatments for cancer and
· Consider the impact of cancer in
ways to prevent cancer.
the United States* in 2002:
· Clinical trials contribute to
­ Each year, about 555,550 people
knowledge and progress against
are expected to die of cancer--
cancer. Many of today's most
more than 1,520 people a day.
effective cancer treatments are
­ Cancer is the second leading
based on previous study results.
cause of death, exceeded only
Because of progress made
by heart disease.
through clinical trials, many
­ 1 of 4 deaths is from cancer.
people treated for cancer are now
· About 1,284,900 new cancer
living longer.
cases are expected to be
· The more people that participate
diagnosed each year.
in clinical trials, the faster we can
· Research has shown that there
answer the critical research
are many differences in who
questions that will lead us to
*
American Cancer Society (2002). Cancer Facts and Figures.
Ways to Conduct Community Outreach and Education
75

better treatment and prevention
How to Learn More about Clinical Trials
options for all cancers. We will
Call NCI's Cancer Information
never know the true effectiveness
Service at 1-800-4-CANCER
of a cancer treatment, or a way to
(1-800-422-6237) and ask for a
prevent cancer, unless we are able
customized search of the PDQ
to involve more people in clinical
database, which provides
trials.
information on current studies. Ask
· In the past, clinical trials were
for the following pamphlets:
sometimes seen as a last resort for
· "Taking Part in Clinical Trials:
people who had no other treat-
What Cancer Patients Need To
ment choices. Today, many people
Know"**
with cancer, even those whose
· "Taking Part in Clinical Trials:
cancers have not spread, get their
Cancer Prevention Studies"**
first treatment in a clinical trial.
· "If You Have Cancer... What You
Should Know about Clinical
Understanding How Few People with
Trials"** (easy to read)
Cancer Take Part in Clinical Trials
· "If You Have Cancer and Have
· Enormous improvements in
Medicare...You Should Know
treating childhood cancers have
About Clinical Trials"
come about as the direct result of
clinical trials; more than 60
Or you can visit the clinical trials
percent of U.S. children with
area of the NCI Web site at
cancer participate in clinical trials.
www.cancer.gov.
In 2000, more than 70 percent of
** Also available in Spanish
children with cancer are alive 5
years after diagnosis, compared
with only 55 percent in the mid-
1970s.
· In contrast, only 3 percent of U.S.
adults with cancer participate in
clinical trials--far fewer than the
number needed to answer the
most pressing cancer questions
quickly.
· According to a survey in 2000,
most people with cancer were
either unaware or unsure that
participation in clinical trials was
an option for their treatment, and
most of them said they would
have been willing to enroll had
they known it was possible.
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7. Hosting an Information Session/
Community Forum--A Step-by-Step
Planning Guide
Many organizations choose to hold community events on clinical
trials, which can be an effective way to reach community members.
Careful planning is required to ensure your event is a success.
Step 1. Establish a Community Forum Organizing
Committee If You Are Planning a Large Event
The organizing committee could include members from your
group's education committee or your board. You will need to
determine a budget for the project that includes costs of meeting
room rental, printing flyers or invitations, advertisements, and
postage.
Involve other parts of your community--such as the leadership
of other nonprofit or advocacy organizations--in the
planning process.
The entire committee may need to meet only a few times to
discuss presentation goals and outreach strategies. A timeline and
specific "job responsibilities" can be discussed at the first meeting.
Step 2. To Focus Your Information Session,
Clarify Your Goals
It is important to answer the following question before beginning
to plan the event. Potential answers are provided here, but you
should answer this question for yourself: What is our goal in hosting
this forum?
You should aim for goals that are clearly expressible. Try not to be
overly ambitious for one community presentation. Getting
community leaders involved with clinical trials and educating
community members about clinical trials should be among your
primary goals.
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77

Specific goals of the meeting/forum might be to:
· Provide information about a specific cancer trial to members of
your community.
· Develop a community strategy for clinical trial outreach.
· Provide people with the tools they need to find out about trials
in your community.
· Educate the public about the importance of cancer clinical trials.
· Help debunk myths about clinical trials.
· Make clinical trial information more accessible.
· Share information with local organizations, compare strategies,
and unify positions on common issues.
· Encourage people to inform others about clinical trials.
· Begin to build links between local researchers with
community members.
Step 3. Determine Your Target Audience
Think about who and why. Develop a target audience list. Be sure
to involve community leaders.
Possible audiences include those listed on page 64: "Expanding
Your Organization's Community."
For ideas in reaching cancer-related organizations in your
community, use the following sources from the National
Cancer Institute's Cancer Information Service:
· "Cancer Facts: National Organizations That Offer
Services to People with Cancer and Their Families" is
available on the Web at www.cancer.gov/cis or by calling
1-800-4-CANCER. This listing features dozens of
organizations, many of which have local chapters,
members, or affiliates.
· Your regional Partnership Program manager (who can be
reached at 1-800-4-CANCER) can provide a list of local
organizations that may have an interest in participating in
your educational efforts.
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Step 4. Choose an Interesting Theme With a Catchy Title
The theme should combine your organization's goals with what
you believe your target audience will find of interest. Some ideas
are given here.
General Information on Clinical Trials
· What are clinical trials and why should we care about them?
· How are cancer prevention clinical trials different from
other studies?
· What are the myths and facts about clinical trials?
· How are people protected in clinical trials?
· How does cancer research in our community address the
concerns of people living with the disease?
· How can someone decide whether to participate in a clinical trial?
· What are the barriers to accessing clinical trials?
Specific Information on a Particular Trial
Provide information about a specific prevention or treatment trial
that may be having problems accruing patients. The presentation
can explain why it is important, including the risks and benefits. If
possible, give the locations of the trial sites in your area.
Community Advocacy for Clinical Trials
· How can we help reduce the barriers to participation in
clinical trials in our community?
· How can we advocate for third-party payers to cover
clinical trial costs?
· How can we develop a community strategy for clinical
trial outreach?
· How can we make clinical trial information accessible to those
who need it in our community?
· How can we find ways to help people understand that clinical
trials can be a viable treatment option?
· How can people newly diagnosed with cancer learn about
clinical trials in the community?
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Step 5. Choose the Forum Speaker(s), Format, and Date
Be sure to invite people who:
· Can speak to lay audiences without using a lot of
technical information
· Have a good rapport with the audience
· Live in the area
· Present information that people can use
Tip
When planning a special event, keep in mind that many
audiences are unfamiliar with scientific terms. Strive to make
information presented at your special event easy to understand
and creative.
For speaker ideas, contact principal investigators from the list of
cancer trials in your community. (See page 111 for more
information.) Consider inviting speakers who have actually
participated in a trial. You can also contact your local cancer
center, hospital, or medical center or the Cancer Information
Service for help in finding speakers who will appeal to your
audience.
Choose your date carefully. Make sure it is a time when most
people can attend and that it doesn't conflict with another large
community event or a holiday.
Tip
If your speakers are your "big draw," you may want to offer
several dates to accommodate their schedules before the date
is confirmed.
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Step 6. Decide on the Best Way to Inform the Target
Audience About the Event
Your message should reflect the theme you've chosen. The cost,
timing, and available person-power will affect the method you
choose to publicize your event. Consider the following methods:
· Mailing invitations or flyers to organizational mailing lists
· E-mailing event announcements to organizations and individuals
· Posting on Web sites
· Advertising in local media, such as radio stations and newspapers
· Distributing flyers or posters in the community
· Contacting cancer centers, hospitals, support groups, and
patient groups
Step 7. Obtain Educational Materials
At the event, provide participants with handouts on the benefits of
cancer research (e.g., handouts in this series). Encourage them to share
information with friends, relatives, and other people in their lives.
Step 8. Arrange for a Location
Choose a location that is accessible by various modes of transportation.
Step 9. Select an Event Format
Research has shown that adults strongly prefer interactive delivery
methods, which allow them to learn new information by:
· Seeing
· Experiencing
· Discussing
Many scientists do not use these delivery methods, but you can
encourage their use to promote effective discussions in community
presentations. Remember that you want to advocate for people to
take action after they leave the forum.
Be creative in your format. Adults often gain the most out of
presentations by figuring out how they can apply the information
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in their lives immediately. Possible formats include:
· Single speaker format. An easy option is a presentation that
includes an expert speaking and answering questions about
cancer research. For example, a doctor, research scientist, or
outreach coordinator who is involved in a cancer clinical trial
could speak about the work he or she is doing in the community.
· Panel discussion. A small group of experts (usually between
three and five) discuss a topic among themselves in front of an
audience. Panel participants don't make formal presentations.
They exchange ideas through conversation. Panels can expose
the audience to different points of view about a single subject.
Audience members ask questions or comment on the subject
after a panel discussion. Usually, a time limit is set for each
question and for the entire question-and-answer period. Cancer
trial panels might include:
­ Survivors who reflect the diversity of your community who can
discuss their decisions about trial participation (survivors who are
community leaders or otherwise well known in your community
might be of particular interest to your target audience)
­ Cancer researchers who can discuss their work
­ Survivors and scientists who can discuss both the personal
decisions and the science behind trials
· Symposium
. A small number of experts make short presentations
in succession. Presentations usually range from 5 to 15 minutes
each.
· Open forum
. Members of the audience may participate at any
time during the meeting.
· Colloquy. During a panel discussion, audience members may be
invited to comment or ask questions if a panel member or the
chair perceives a need to clarify points, raise an issue, or ensure
that a misperception doesn't stand. Any interruptions of the
panel discussion must focus on the point at hand. When the
matter has been resolved, the organized discussion among panel
members resumes.
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· Buzz session
. The audience is divided into groups of six to eight
people for discussion of questions posed by the leader. One
person from each group may be asked to summarize the group's
discussion and report to the entire audience.
· Audience reaction team
. Three to five members of the audience
are pre-selected to respond to a presentation by offering a brief
summary and interpretation of information presented. This
discussion method can be used effectively in large-group
settings and when time is limited.
· Question period
. Members of the audience have an opportunity
to ask questions of a presenter once the formal presentation is
completed. Usually, a time limit is set for each question and for
the entire question-and-answer period.
· Workshop
. A small group of people (up to 25) with a common
interest meet to study, research, and discuss a specific subject or
to enhance their individual knowledge and proficiency.
· Seminar
. Agroup of people who are studying a specific subject
meet for a discussion led by a recognized authority.
Tip
No matter what format you choose, make sure you allow
plenty of time for questions and answers.
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Working with Presenters
Preparation
· Interview potential presenters in advance! You need to assess a
presenter's ability to discuss areas related to clinical trials, and
any personal experience he or she may have. Ask potential
presenters about their willingness to participate in an event.
Provide information about the date, time, and focus of the event.
Discuss any concerns about anonymity (e.g., picture-taking or
media presence).
· Budget for honoraria and expenses. Whenever possible, pay
presenters an honorarium and offer food, mileage, parking, and
childcare reimbursement. If possible, plan to pay in cash the day
of the workshop (and get a signed receipt).
· Send a confirmation letter. Make sure it includes date, time, and
focus of the event, details about honorarium, travel to the site,
parking, and a telephone number of a contact person at the
training site.
· Call presenters 3 to 7 days before the event. Ask whether they
have questions. Discuss plans for focusing on specific issues. Ask
how they wish to be introduced. It may be easiest for presenters
to introduce themselves, so they can disclose as much or as little
identifying information as they like.
· Obtain a facilitator/moderator. The facilitator's role is critical to
the event's success. A facilitator manages the discussion.
Presenters need support from the facilitator, who should:
­ Assure them that they can refuse to respond to any question
for any reason
­ Monitor time carefully and gently, so everyone gets a chance
to speak
­ Help with questions and answers
­ Be available after the event to assist presenters and
offer feedback
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· Arrange to meet with all panelists before the presentation. This
will help alleviate their anxiety and provide a chance to discuss
any last-minute issues.
· Review the format for the panel. Look at time allowed for
each presentation and when/how questions will be taken
from the audience.
At the Event
· Explain why you are holding a panel discussion. (Hint: Distribute
an information sheet listing panelists and their affiliations. Then
you won't have to spend a lot of time on introductions.)
· Review the ground rules. Tell the audience how much time each
panelist will have to speak. Explain when audience members will
be able to ask questions or offer comments.
· Show courtesy and respect for differing points of view.
· Pay careful attention to respecting limits on time.
· Summarize in the last 5 minutes. This is important, even if you
have to say, "This discussion left many of us with more questions
than answers!"
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Plan Your Community Events--A Sample Timeline
Whether you plan to host a forum or run a video presentation, this
checklist can help you plan.
6-8 Weeks in Advance
q Identify target audience
q Identify and reserve site for meeting and ensure video
equipment is available--will it be a part of a regular
organizational meeting, a visit to someone's home, a special
event?
4 Weeks in Advance
q Refine target audience
q Review audience needs
q Develop and send e-mail/flyer
q Order supplies, copies, and educational materials
q Confirm site reservation, video equipment
2 Weeks in Advance
q Check in with onsite coordinator on number of participants and
any changes anticipated
q Get flip charts and markers (if needed)
q Get nametags (if needed)
q Organize handouts
q Make sure any videotape works/CD-ROM works
1 Week in Advance
q Prepare supplies and materials for presentation, place in boxes
Day of Session
q Arrive at least 30 minutes before scheduled start time
q Check set-up and comfort of room
q Place welcome and directional signs in the facility
q Make sure you know how to work video equipment
1 Week After Session
q Send thank-you letter to on-site coordinator and participants
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8. Form an Advocacy Coalition
A coalition is a group of organizations and individuals working
together for a common purpose. There are two types of coalitions
or partnerships:
1. Single-issue or event coalitions need to agree only on one
particular issue or event. The coalition dissolves when the issue
is resolved or the event takes place.
2. Multi-issue coalitions focus on a set of related issues, such as
clinical trial access, health care for all, or quality of cancer care.
This more permanent type of coalition recognizes the value of
mobilizing together for action over a longer time. To be effective,
a multi-issue coalition should set a date for its work to be
completed. The coalition can always be reorganized if needed.
Why Form an Advocacy Coalition?
· To build important links among community-based
organizations and clinical trial sites
· To share information with local organizations, compare
strategies, and unify positions on common issues
· To help:
­ Set priorities for action or funding
­ Carry out an educational or outreach plan
­ Broaden the development of new constituencies
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The Value of a Coalition or Partnership
Coalition building is needed when one organization recognizes
that it alone does not have the capability or people-power to have
a real impact on an issue.
Clinical trial outreach is complex. Think of innovative ways to
reach underserved communities with clinical trial information.
You can be a catalyst for building important links among
community-based organizations and clinical trial sites.
Getting Started
Analyze Your Organization
Analyze your interests before asking other groups to join in your
efforts. Ask yourself:
· What can be gained from joining with others?
· Will the advantages outweigh the disadvantages?
· How can we best communicate the demands of other groups to
our organization?
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Forming an Advocacy Coalition--A Planning Guide
Step 1. Establish a Partnership Organizing Committee
The committee can be made up of leaders in your organization.
The committee manages the formation of the entire partnership.
Specific job responsibilities can be divided at the first meeting.
Step 2. With the Group, Clarify Your Organization's Interest in Developing
a Community Partnership
· Why do you want to advocate for access to clinical trials? Why is
it important?
· Which issues, questions, and behaviors around clinical trials are
of particular interest to you, and why? Do you need more
information on these topics?
· What don't you know about these issues, questions, and
behaviors around clinical trials? What questions do you need to
have answered?
· What outside resources can you tap to help you understand
the issues?
Identifying what you know about an issue also helps highlight
what you don't know--issues you can ask about when you get
other organizations involved.
Step 3. Identify Current Needs and Resources
When you start looking closely at clinical trial issues in your
community, you need detailed information about the needs of
individuals and the organizations that serve them, as well as the
resources that your community has available to solve those needs.
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Needs can be defined as the gap between what a situation is
and what it should be. A need can be felt by an individual, a
group, or an entire community. It can be as concrete as the
need for more clinical trials or as abstract as improved
community understanding of clinical trials. Examining needs
can help you discover what is lacking, and point you in the
direction of future improvement.
Resources or assets can be used to improve quality of life. They
can be anything from people to places to organizations. Everyone
is an asset, and everyone has assets that can be used for
community building.
Identifying current needs and resources can help you:
· Understand the environment where you'll be working.
· Know how the community feels about an issue and what
members think needs to be done about it. Getting the opinions of
community members, identifying both the resources and
limitations of your area, will give you a holistic view of the issue.
· Make decisions about priorities for program or system
improvement. Once you assess the community, it is much easier
to make improvements that community members will notice and
benefit from.
This needs assessment process will be an ongoing part of forming
your coalition.
Step 4. Start With What You Know
After choosing an issue to focus on, you may find possible
solutions. Ask yourself:
· What do we already know about the needs and resources for
clinical trials in our community?
· Has anyone else researched this topic in our community? Can we
rely on this other work to give us insight and answers?
· Are there experts in the community who can answer some
questions before we get started in forming the coalition? (Their
input may narrow the remaining questions you need to ask other
community members.)
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Step 5. Identify the Key Organizations With Which You May Be Working
Develop a list of organizations likely to want to participate in the
project. Be sure to include the institutions conducting clinical
research in your community. Possible participants may include
those listed on page 63.
Remember that this project presents an opportunity for you to build
important links among people with cancer, researchers, doctors,
and advocates.
Step 6. Determine What You Will Ask of Groups Who Join Your Efforts
For example, each organization must be committed to:
· Addressing clinical trial barriers in the community
· Coordinating to solve the problem, not just to gain
public recognition
· The right of every other organization to be involved
· Open communication
Step 7. Write a Letter or E-mail Inviting Organizations to a
"Brainstorming" and Planning Session
The goal of this meeting is to figure out how community groups can
address local concerns associated with clinical trials. This initiative
may focus on collaboration among the groups. Keep in mind that
priorities may be different among the groups. This could be an open
meeting for discussion among interested parties. Publicize the event
through the media and at meetings.
Step 8. To Followup With All Participating Organizations, Provide an
Outline of Your Plans
Ongoing communication is critical to gaining community
ownership of this project.
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Hold a Coalition Planning Meeting
Requirements for a Successful Meeting
Key requirements for a successful meeting include:
· An accessible location and time
· A good facilitator, if possible from outside the coalition, to help
make sure all ideas are heard
· A good notetaker to record minutes, along with action steps, and
distribute them to attendees
The following are possible tasks for the first meeting.
Goal Setting
The meeting should have a goal. One example would be: "This
meeting will determine how community groups can collaborate
on addressing local concerns associated with clinical trials."
Team Building
Open the meeting with a team-building exercise. Pair people with
someone they don't know. Ask them to introduce themselves by
telling the other person about groups they belong to, as well as a
skill or talent they have. Ask people to introduce their partners by
giving their names, where they're from, groups they belong to,
and a skill or talent. Comment on the number of groups
mentioned, the various skills named, and how this is a beginning
to building an effective coalition/partnership.
Information Overview
Be prepared to:
· Share clinical trials educational materials
· Discuss your goal in getting involved with advocacy
· Ask people to think about ways to spread the word
Brainstorming
In a brainstorming session, participants share their ideas or
suggestions for solving a problem. Discussion of each point occurs
after all ideas have been expressed. The atmosphere should be
open and encouraging.
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Use a newsprint pad and marker and ask for a volunteer
"recorder." In the groups:
1. Discuss community perspectives on barriers to clinical trials.
How do they differ from the information presented? What other
concerns do members of the community have? Focus discussion
on barriers in the community, in institutions, and among
potential participants.
2. Next, discuss possible solutions. Explain that this is a
participatory goal-setting process. Discuss potential projects to
let more people know about clinical trials.
Tip
You can use a buzz session in a coalition-building meeting as
well as for a community meeting. If you use a buzz session
instead of brainstorming, you may want to have the groups
use worksheets to discuss the issues. The worksheets will help
to determine community priorities for this project.
Mission Statement
Meeting attendees should work to develop a mission statement for
the partnership. Examples of mission statements are:
· To determine the issues of importance related to clinical trials in
our community, in order to develop a community-based
advocacy initiative
· To work together to reduce the barriers to clinical trials in
our community
The facilitator may need to further develop the statement and send
it to attendees for comment at the second meeting.
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Finding Other Partners
Brainstorm to decide on other groups to invite to the next meeting.
List the following organization types and examples on separate
sheets of a newsprint pad:
· Service
· Religious
· Issue-oriented
· Social
· Educational
· Local or statewide councils and boards
When inviting groups to join the coalition, define the issue in a
way that appeals to their self-interest.
Followup Steps
Participants should resolve the following before the meeting ends:
· How to continue communication among coalition members
· Who will facilitate future meetings (The facilitator should invite
other organizations to join the coalition's next meeting. The
group can elect someone to this position.)
· Who will coordinate an agenda for the next meeting (Committee
assignments are one way to develop different parts of the agenda.)
· How additional input will be incorporated in the coalition's plans
To help you plan conducting community outreach and
education, see the Plan for Action in the Appendix.
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5.
Ways
to
Work
With
the
Media

5
Ways to Work With the Media
What You Can Do
· Develop a media campaign
· Contact local media outlets about running a story related to
clinical trials
· Write a letter to the editor or an op-ed piece for your local newspaper
Why?
· To educate the public about clinical trials
· To encourage people to find out about trials
· To encourage local doctors to refer people to trials
Introduction
Media advocacy is the use of television, radio, newspapers,
magazines, or other media to help promote your mission. The media
are a primary source of health information. Using the media can
help your organization:
· Change the way community members look at clinical trials
· Create a reliable, consistent stream of publicity for your
organization's activities
· Motivate community members and policymakers to get involved
and learn more about clinical trials
Keep in mind that newspapers, television stations, and radio stations
have different audiences. Messages that work for one audience may
not work for another.
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Education and Outreach in Action
A woman with colon cancer was very active in the local PTA
in her community. Many of the parents were surprised when
she told them about her decision to join a clinical trial. One of
the parents said, "I didn't know a lot about clinical trials, but
I saw how much the trial is helping our friend. I figured that
we had to let other people know about it." The PTA
approached the local community newspaper to do a story on
her experience in the trial, which resulted in a five-part series.
1. Work With Mass Media--Goals, Timing,
and Process
Goals
Goals in using the mass media include:
· Informing the public about issues related to clinical trials in
your community
· Recasting clinical trial barriers as concerns that affect everyone,
not just individuals
· Encouraging people to find out more about clinical trials and
to get involved
Timing
Good times to focus extra energy on the media include when:
· Announcing a new project (for example, a new clinical trial
outreach plan)
· You have information that can be tied to a community event
· The public or government officials are debating or considering
laws or activities that affect clinical trials
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The Process
There are three different activities in media advocacy: Agenda
setting, shaping the debate, and advancing a policy.
Agenda setting is what you accomplish when you influence:
1. What the media cover (media agenda)
2. What people talk about (public agenda)
3. How policymakers think about or act upon issues during
legislative sessions or in committee (policy or political agenda)
Agenda setting helps you make connections with the media and
their audiences. It also sets the stage for your next trick, shaping
the debate. To set an agenda:
· Let the media and public know your concerns
· Get the public talking about what is important to you
· Generate some sort of action (e.g., aim to influence policy or get
more people involved)
Shaping the debate is trying to change the way people talk about
clinical trials. The media often give tidbits of information about
clinical trial problems and then provide quick-fix solutions.
Traditionally, the media tell an audience:
· "This is what the problem is"--providing information about
a problem
· "This is the solution"--usually summed up in a quick health
message such as, "Just say no."
Once you help to shape the way clinical trials are reported by the
media, then the community can work for better access to clinical
trials. Advancing a policy is a way to use the media to inform
policymakers about an issue. Media coverage created by advocates
can educate policymakers before they take action.
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2. Develop a Media Campaign
A media advocacy campaign is similar to a political campaign
in that you need to plan it carefully­­identifying specific strategies
and tools to use--before taking any action. You need to
understand how you want the media to help you advance
your goals.
Use the following steps to set up a media campaign:
1. Prepare your organization or your members. You will need to
designate a spokesperson to work with the media. Spokespeople
need to be prepared to speak with media representatives, using
extra caution with words and language that might be manipulated.
2. Select your objectives. Ask yourself why you need to set up a
media campaign. Is a campaign the best way to meet your needs?
What are you going to use the media for? Do you want to inform
the people of important facts or do you want to get them
involved? Do you want to change policies or create new ones? Do
you want to build support for your goals and objectives?
3. Identify your target audience. Anyone involved in health issues
can make a difference. Because people who live in one
community can have many different opinions and preferences,
you can't reach everyone with just one message. You will need
to narrow your audience and decide who you want to target:
· Policymakers?
· People who are facing a decision about treatment or
prevention options?
· Groups who are undecided about supporting clinical trials?
· The general public, who doesn't know about clinical trials?
4. Make a plan. Because media advocacy activities consume time
and money, it's important to put your best foot forward when
you begin. Carefully consider when to start your campaign, who
you will contact first, what issues you will tackle, and how you
will present them. What media would you like to use?
Television, print media (such as magazines, newspapers, and
newsletters), radio, or billboards?
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5. Review your goals. Even though you put a lot of thought into your
media advocacy plan, be prepared to modify your goals. Remember,
the news can change quickly, and you need to be ready to react to
an opportunity, even one that doesn't fall under your organization's
typical scope of activities. Are your goals feasible?
6. Keep your ear to the ground. Ask yourself what people talk
about, in your community and nationwide. What can polls and
surveys tell you about the hot topics? How much do people
know about your issues? What kinds of misconceptions or
prejudices can you find in public opinion?
Tips
· Review local publications to understand better what
information each is likely to publish. Who is the target
audience? What types of articles are currently available?
· Find out who reports on health and community issues and
go directly to him or her.
· Remember that reporters are always looking for good
news stories and you can serve as a resource to them.
Developing media opportunities is a challenging job, but
with the right preparation, you can soon become an expert.
· Always be ready to arrange an interview with a health
care provider and a person with cancer. Factual stories
need a human-interest angle.
· Pitch stories in relation to health awareness months.
· Ask producers of radio call-in shows to feature clinical
trials on one of their programs. Offer to provide
background information, sample questions and answers,
and people to interview.
· Use local organizations' media (e.g., newsletters, Web
sites, and listservs).
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3. Use Media Tools
Press Releases
Press releases are one-page write-ups about your organization's
news. To be effective, they should be used sparingly. Press releases
are best used to announce an event, a coalition meeting, or other
strategy your group is employing to spread the word about
clinical trials.
Typically, press releases are faxed to the appropriate reporter or editor.
The press release should be double-spaced and no more than a
page long.
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Sample Press Release Format
National Institutes of Health
EMBARGOED FOR RELEASE
1 p.m. EDT
Contact--
Be sure to include a
Friday, November 01, 2002
telephone number
NCI Press Office
(301) 496-6641
Headline--
National Cancer Institute Hosts Lecture, "Poor Whites
When possible include
and Health"
link to local event
1st paragraph--
J. Wayne Flynt, Ph.D., distinguished professor, Auburn
Interesting lead
University, Auburn, Ala., will discuss the impoverishment of
sentence, general
whites in America and the effect of poverty on their medical
description of event,
date, or place
care.
Flynt received his Ph.D. from Florida State University in 1965,
specializing in Southern political history. His research interests
subsequently turned to poverty and religion. He has lectured at
universities across America and abroad.
2nd and succeding
Flynt is a community activist, serving on the American Cancer
paragraphs--
Society's Committee for the Socioeconomically Disadvantaged.
More description and
He is co-founder of the Alabama Poverty Project and Sowing
background. When
possible, obtain a
Seeds of Hope, an initiative to overcome poverty in Perry
direct quote, local
County, Ala.
interest angle
Flynt is the author of 10 books, two of which have been
nominated for Pulitzer Prizes. In 2003-2004 he will serve as
president of the Southern Historical Association, the largest
professional organization devoted to the study of Southern
history and culture.
This lecture is the second in a series presented by the National
Cancer Institute's Center to Reduce Cancer Health Disparities.
This lecture series explores issues related to health disparities
and the unequal burden of disease in American society.
WHEN: Tuesday, Nov. 5, 2002, 2 p.m.
WHERE: The lecture will take place in Masur Auditorium at the
Warren G. Magnuson Clinical Center on the National
Institutes of Health (NIH) campus in Bethesda, MD.
For more information
If you are interested in attending this lecture or require further
provide a Web address
information, please contact (301) 496-6641.
or telephone number
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Most media outlets are deluged with press releases. Consider
alternatives to the press release format:
· Fact sheets--who, what, when, where, and why
· Position statements--a brief explanation of an issue and why
your group cares about it
Pros
Most nonprofit organizations rely on the news media to reach the
largest audience possible. Press releases:
· Provide an excellent way to tip off journalists and editors to your
organization's news or upcoming activities
· Can be produced quickly in the event of breaking news
· Allow you to frame the issues
· Are easily distributed by mail, fax, or e-mail
· Encourage credible, objective journalists to report on your activities
Cons
Press releases require skill to do well. Writing and distributing a
press release isn't enough. You have to work hard to form good
relationships with the media to make journalists more receptive to
your press releases and other efforts. And once you establish ties,
you have to work hard to maintain them. Remember that the
attention span of the news media is generally very short and that
your story has to compete with many others for attention.
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Public Service Announcements
Public service announcements (PSAs) may be used to solicit
membership or to provide general information about your group
and its mission to spread the word about clinical trials. They are
more likely to be broadcast or printed if they announce a meeting
or public event.
Tip
Many media outlets run community calendar segments
during newsbreaks or talk programs. Call outlets and ask to
insert an item in their community calendar segments. They
will either take down the information over the phone or ask
that you provide it in writing.
When distributing your PSA, include a letter that sums up your
group's mission and why your PSA is important to your
community. You can also provide the public service director at the
news outlet with a press kit that includes more extensive
information on your group.
Radio
Radio PSAs should be submitted in a written script format or on
a professionally-produced tape. Written copies are often less
expensive and more effective, because they will be read by the
radio announcer, who is an experienced and familiar voice to the
public ear.
Television
Keep in mind that television production can be very expensive
and requires experienced technicians and extensive camera
equipment. Don't forget about public access cable--more and
more people are using it. Using public access, you are most likely
to get your message broadcast without changes--a rare case where
you have complete control over your message.
Ways to Work With the Media
103

Pros
PSAs:
· Can give you free air time
· Can help long-range advocacy goals by helping to maintain
name recognition for your organization
· Are an easy way to spread information
Cons
You can't control the placement of your PSA, and competition for
"good airspace" can be fierce. In addition, PSAs:
· Are labor intensive
· Offer less flexibility than paid advertisements (radio and television
stations may pick and choose which PSAs they wish to use)
· Don't allow you to react quickly to breaking news because they
are hard to revise
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Sample PSA Format
Usually it is best to simply provide the information for a PSA to a
media outlet, in a clearly readable format. In many cases a radio or
TV station will run a PSA exactly as you submit it.
Time of spot
30-second spot
Title of PSA
Sam Donaldson on Melanoma for NCI
Interesting lead
HI, I'M SAM DONALDSON. YOU MAY KNOW ME AS A
sentence
NEWS ANCHOR, BUT I'M ALSO A MELANOMA SURVIVOR.
General description of
MELANOMA ­ THE MOST SERIOUS TYPE OF SKIN
topic or event or who
is invited. You may
CANCER ­ CAN BE CURABLE IF CAUGHT AND TREATED
want to include a
EARLY. SO YOU AND YOUR DOCTOR SHOULD EXAMINE
sentence on history or
a local-interest angle.
YOUR SKIN REGULARLY. OFTEN, THE FIRST SIGN OF
MELANOMA IS A CHANGE IN SIZE, SHAPE, COLOR OR
FEEL OF AN EXISTING MOLE.
Final sentence--
FOR MORE INFORMATION, CALL THE NATIONAL
Where to go for more
information
CANCER INSTITUTE'S CANCER INFORMATION SERVICE
AT 1-800-4-CANCER OR VISIT NCI's WEB SITE AT
CANCER-DOT-GOV.
Tip
Remember to Keep It Short and Simple!
Ways to Work With the Media
105

Letters to the Editor
The philosophy behind your local newspapers' letters-to-the-editor
pages can differ dramatically. The key variable is the size of the
paper's circulation.
Some editors of the letters page see it as a community bulletin
board where all sorts of opinions ought to be posted. This wide-
open policy typically is found at smaller papers, where they might
be struggling to fill the space they've allotted for letters. These
papers are a perfect opportunity for those interested in clinical trial
outreach and education.
In the midsize to large suburban and urban daily newspaper,
hundreds of letters may come in each day. For the editors of larger
papers, relevance is the key consideration. They want to print
feedback/criticism/praise for stories and opinion columns that
have appeared in their paper quite recently.
When you have evaluated the newspaper you are writing to and
have an idea of its circulation, you should begin to outline your
topic. First and foremost, know what you're writing about. Don't
criticize a newspaper's overall coverage of an issue unless you have
truly read every inch of coverage. Don't embarrass yourself and your
organization by claiming that a newspaper doesn't cover cancer
issues, for example, only to be presented with 30 clips of stories
printed over the past 2 years. If you're going to use the media, you
must first be a smart, consistent consumer of their products.
Keeping this in mind, it is best to focus your piece on a particular
story the paper has published:
· Always quote the headline and date in your first or second
sentence.
· Stick to the facts and keep it dignified.
· Keep it brief, for the reader's sake. Four to six paragraphs is the
rule, with paragraphs consisting of only one or two sentences
each (generally 250-500 words max).
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· If you can't make your point within these constraints, consider
writing a full-blown opinion column for the page, often called
the op-ed because it is published opposite the newspaper's
editorials. An op-ed column should consist of no more than 15
paragraphs, and 10 is a better length (500-800 words). Op-eds
should be signed by a prominent person in your community.
If possible, fax your letter or column to the editorial page. You
should identify a specific person to whom your letter should be
sent. The letter will get there more quickly, and 70 percent of
editors say they prefer faxes. You must sign your letter and
include a daytime telephone number.
If you have not seen your letter printed within a few days,
followup to inquire, politely. The answers you get will help you
the next time you write. Remember that no newspaper is obligated
to print your letter, but newspaper editors consider themselves
obligated to fairly and accurately present all sides of the issues.
Use this ethic to your advantage.
To help you plan ways to work with the media, see the Plan
for Action in the Appendix.
Ways to Work With the Media
107

Sample Letter to the Editor
Dear Editor:
Your most recent coverage of cancer in our community [April 11--Cancer
1st paragraph--
Clinical Trials: False Promises] was an earnest attempt to address the issues
Begin by connecting
surrounding this topic. However, some important facts about clinical trials
to a timely event,
previous article, or
were lost in the process. As [insert what you are], I share the authors'
statement. When
concern about the potential abuses in the clinical trials system and
possible, tie
appreciate their commitment to bring attention to this problem. But this
national events into
year alone, it is estimated that 553,400 people will die of cancer in the
relevant stories or
United States--more than 1,500 people a day. By providing a one-sided
information about
and sensationalistic view of a highly complex subject, you do a great
your community.
disservice to the important contributions of thousands of hard-working
and ethical researchers, as well as to clinical trial participants.
2nd paragraph--
The public's confidence in clinical research is seriously shaken by stories like
Make your point
yours that report inadequacies in participant protection without discussing
upfront.
the benefits of clinical trials. Considering the thousands of people who take
part in clinical trials each year, breaches in protection are rare.
3rd paragraph--
It is important to note that the number of studies executed efficiently and
Use facts to support
ethically far outweighs these tragedies resulting from clinical trials. We will
your point. Make
never be able to answer the most pressing questions about the causes of
sure you get your
and treatments for cancer without the scientific evidence produced
facts from a
through well-designed and ethically executed clinical trials. Your readers
reliable source.
should know that many Federal regulations enforce participant protection
rules. In addition, in 2000, the U.S. Department of Health and Human
Services took additional steps to strengthen government oversight of
medical research and to reinforce clinical researchers' responsibility to
4th paragraph--
Be persuasive;
follow federal guidelines.
appeal to readers'
sense of justice,
Only 3 percent of adults with cancer currently participate in clinical trials.
decency, or
How will we ever answer the most pressing questions about the causes of
empathy to
and treatments for cancer without the scientific evidence produced through
strengthen your
well-designed and ethically executed clinical trials?
argument. Don't be
afraid to use a
personal example
I firmly believe that people with cancer should have access to the best
as a way to support
treatments and be given the best possible chance for survival. Clinical trials
your point of view.
ultimately offer the best hope for many people, and all must be offered the
opportunity to participate. Participant protection must be enforced in
clinical research, and all participants need to be appraised of the risks and
benefits of participating through existing informed consent laws.
5th and 6th
We all need to know the facts about clinical trials. To learn more
paragraphs--
about clinical trials, call NCI's Cancer Information Service at
Say what readers
1-800-4-CANCER or log on to the Web site at www.cancer.gov.
should do, for your
organization, for
Sincerely,
your community,
in support of
clinical trials.
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6.
Ways
Centers,
to
and
Work
Universities
With
Hospitals,
Medical

6
Ways to Work With
Hospitals, Medical Centers,
and Universities
What You Can Do
· Help researchers design and conduct clinical trial recruitment efforts
· Find ways to get primary care doctors, oncologists, and oncology
nurses to understand local clinical trial resources and to refer
people to trials
· Find out how you can serve on a local institutional review
board (IRB)
Why?
To help increase access and accrual to cancer clinical trials
Introduction
Many public institutions recognize the importance of including
nonscientists in the clinical trial review process and are including
patients and advocates as members of advisory committees and
planning/oversight groups that have a focus on clinical trials.
People from outside the research community play an important
role in program planning and implementation, and help to set
priorities and research agendas for clinical trials.
Ways to Work With Hospitals, Medical Centers, and Universities
109

Education and Outreach in Action
Aretired mail carrier helped her significant other through cancer
treatment. She read everything that she got her hands on about
chemotherapy and learned a lot about cancer treatment.
Now that the cancer is in remission, she still logs onto the National
Cancer Institute's Web site for new information. As a part of the
local cancer support group, she attended a local cancer conference.
One of the presenters discussed new medicine being studied in
phase 3 trials, but mentioned in passing that the researchers are
having trouble getting patients to consider participating in the trial.
During the "Q and A," she asked the presenter, "How can patient
groups help you get the word out about this trial?" The group
made a plan to meet with the researchers to figure out how they
could work together.
Of the experience, the mail carrier says, "If I hadn't made contact
at that meeting, they would still be having the same problems
getting patients to consider participating in this trial. Experts don't
realize the scope of patient organizations and all of the services
we have to assist them with their trials and any other projects."
"I work in a breast cancer screening program," said a nurse from
a Midwest health department. "Some women are really worried
about getting breast cancer--they've lost a sister, a mother, an
aunt to breast cancer. Once they've gotten a normal
mammogram report, I tell them that they need to take care of
themselves by getting annual mammograms and clinical breast
exams, and I train them how to do breast self-exams. But, I also
tell them that they may want to think about participating in a
breast cancer prevention trial." The health department works
with local physicians, the local medical center, and some
churches to let community members know about opportunities
to participate in breast cancer prevention trials.
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1. Work with Researchers and Health
Care Professionals
In addition to sponsoring community forums and information
sessions as outlined in other sections of this guide, many
laypeople have worked alongside researchers to advise them in
their clinical trial outreach and education efforts.
Points to keep in mind when assisting researchers with
community outreach include the following:
· Community members who are known, trusted, and accountable
may be more effective and more believable to other community
members than a researcher.
· Community members can help advise researchers on ways to
present clinical trial information that complements the values
people in the community hold.
· Community members can help foster the development of
partnerships with organizations and the research institutions.
Tips to Find Out How You Can Help Researchers
Contact principal investigators or research nurses of local
institutions. To find out the kind of research being conducted in
your community:
· Contact the research office of the institution.
· Use the NCI Research Portfolio to find out about research going
on in your community. The portfolio allows users to browse and
explore active NCI-supported research, including extramural
and intramural projects, by type of cancer or by type of cancer
research. Research projects (including treatment, prevention, and
cancer control studies) can also be sorted by research project
title, principal investigator, State, and institution. Visit the Web
site http://researchportfolio.cancer.gov.
For more information on strategies for clinical trial education and
working with different ethnic/minority groups, see section 1.
Ways to Work With Hospitals, Medical Centers, and Universities
111

Tips to Find Out How You Can Help Health
Care Professionals
Find ways to get primary care doctors, oncologists, and oncology
nurses to understand local clinical trial resources and to refer
people to trials:
· Talk to your own primary care physician, oncologist and nurse
about resources available to them from NCI, such as:
­ The PDQ clinical trials registry, discussed on page 43.
PDQ can be accessed by www.cancer.gov and through
1-800-4-CANCER.
­ The Cancer Information Service's Partnership Program. Through
this program, the Cancer Information Service reaches the
medically underserved, including minority groups and
people with limited access to health information and
services, with cancer information. The program can provide
clinical trials training to state and regional organizations
working with these populations. Call the Cancer
Information Service at 1-800-4-CANCER or visit the National
Cancer Institute's Web site at www.cancer.gov/cis.
­ The Cancer Trials Support Unit (CTSU). This is a pilot project
sponsored by NCI that supports a national network of
physicians and patients to participate in NCI-sponsored
phase III cancer treatment trials. For more information about
joining, log on at www.ctsu.org or call 1-888-823-5923.
­ The NCI Research Portfolio (see previous page).
· Find an oncologist who can present information on clinical trials
to primary care physicians and nurses in your community.
· Contact local chapters of the American Academy of Family
Physicians (www.aafp.org) and/or the Oncology Nurses Society
(www.ons.org) to explore their knowledge of cancer clinical trials
in your community.
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2. Serve on an Institutional
Review Board (IRB)
IRBs are made up of people who are qualified to evaluate new and
ongoing clinical trials on the basis of scientific, legal, and ethical
merit. The IRB determines whether the risks involved in a study
are reasonable with respect to the potential benefits. IRBs also
monitor the ongoing progress of the trial--from when it begins to
when it ends.
Federal regulations require that each IRB is made up of at least
five people; one member must be from outside the institution.
IRBs usually are made up of a mix of medical specialists and lay
members of the community. Many IRBs include members from
diverse occupations and backgrounds.
In most cases, IRBs are located where the study is to take place.
Most institutions that carry out clinical trials have their own IRBs.
Typical Questions Addressed by an IRB
· Are the risks to participants minimized as much as possible
through sound research design and the use of safety-focused
procedures?
· Are the risks reasonable in relation to the anticipated benefits
and the importance of the knowledge that may result?
· Are participants selected fairly?
· Is a plan in place for seeking and documenting participants'
informed consent?
· Is the informed consent document both legally and
ethically sound?
· Have provisions been made for monitoring the data collected
to ensure the safety of participants as the trial progresses?
· Have provisions been made to protect the privacy of
participants and the confidentiality of data collected
during the study?
Ways to Work With Hospitals, Medical Centers, and Universities
113

To find out how you can serve on an IRB:
· Contact administrators of local hospitals, cancer centers, or
universities (researcher or grant departments are good places to
start) to learn about vacancies.
· Ask your doctor or nurse.
To help you plan for work with hospitals, medical centers,
and universities, see the Plan for Action in the Appendix.
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Appendix

Appendix
Plan for Action
This worksheet is to help you determine how to accomplish your
goals for clinical trial outreach and education. We hope that this
planning will inspire you to take realistic steps towards your goals.
Please be realistic in planning; you do not need to fill out every page.
1. Remind yourself why you/your organization want(s) to get
involved in clinical trial outreach and education. Sometimes it can
be helpful to list these reasons before you plan your efforts.
List five reasons here:
·
·
·
·
·
Appendix
115

2. Given your interest in the above topic areas, which of the
following activities do you feel ready to undertake during the
next 6 months or next year?
Read through the entire action plan before you begin to check
your interests. Be realistic about your other commitments!
Ways to Educate Yourself
q Use NCI resources to keep up-to-date with new clinical trial
information, including www.cancer.gov
q Find local clinical trials in your community
q Attend conferences, meetings, and workshops
Ways to Educate Others, One-on-One
q Find opportunities to talk to others--neighbors, friends, and
coworkers--about clinical trials, and about the common myths
surrounding clinical trials, and where to find more information
on clinical trials
q Help others understand how to evaluate research in the news
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Ways to Conduct Community Outreach and Education
q Find opportunities and develop a strategy to speak about
clinical trials and/or:
·Present NCI slide programs or the awareness video "Cancer
Trials...Because Lives Depend on It"
· Distribute educational materials such as those in this series:
­ At meetings or events
­ Through doctors' offices
­ Through a booth for local research institution(s) at events
q Write articles for newsletters; post articles on Web sites
q Host an information session or community forum on
clinical trials
q Form a clinical trial advocacy coalition
Ways to Work with the Media
q Develop a media campaign
q Contact local media outlets about running a story related to
clinical trials
q Write a letter to the editor or an op-ed piece for your local
newspaper
Ways to Work with Hospitals, Medical Centers, and Universities
q Help researchers design and conduct clinical trial recruitment
efforts
q Find ways to get primary care doctors, oncologists, and
oncology nurses to understand local clinical trial resources and
to refer people to trials
q Find out how you can serve on a local institutional review
board (IRB)
Appendix
117

3. What resources will you need to get these activities
accomplished? (Think about time, organizations, and
individuals.)
4. Name five steps you will take to begin planning these activities.
Be as specific as possible.
·
·
·
·
·
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5. What challenges do you see standing in your way of
accomplishing these activities?
6. How can you address these challenges? If you are working as a
part of a larger organizational effort, how can you get support
from your organization?
Appendix
119

Resources
Education and Training. (2000). North Carolina State University
College of Agriculture and Life Sciences: North Carolina
Cooperative Extension Service. [Online], Available:
http://www.ces.ncsu.edu/resources/education/
How You Can be an Advocate for Change: Action Against Cancer.
(1997). Washington, DC: Center for the Advancement of Health.
KU Work Group on Health Promotion and Community
Development. (2000). Community Tool Box. Lawrence, KS:
University of Kansas. [Online], Available:
http://ctb.ukans.edu/tools/EN/section_1045.htm.
Stevens, G.L. (1990). A Process for Building Coalitions. Lincoln,
NE: Cooperative Extension, Institute of Agriculture and Natural
Resources, University of Nebraska. [Online], Available:
http://ianrwww.unl.edu/pubs/family/g988.htm
Susan G. Komen Breast Cancer Foundation. (1999). Educational
materials for affiliate distribution. Clinical Research Affiliates
Funding Trials (CRAFT).
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The printing of this publication was supported by an educational gift from the Susan G.
Komen Breast Cancer Foundation.
This booklet was written and published by the National Cancer Institute (NCI),
9000 Rockville Pike, Bethesda, Maryland 20892.
NCI is the U.S. Government's main agency for cancer research and information about
cancer. To inquire about copyright and use of NCI materials contact: Clearance Officer,
National Cancer Institute.

Public Health Service
National Institutes of Health
NIH Publication No. 02-5053
Printed October 2001
Reprinted September 2002