A National Action Plan for Cancer Survivorship: 

Advancing Public Health Strategies 

April 2004 
This National Action Plan was developed to inform the general 

public, policy makers, survivors, providers, and others about cancer 

survivorship and public health. The National Action Plan was 

written to be read by audiences with varying levels of knowledge and 

awareness of cancer and/or survivorship issues. Each section has been 

written as a stand-alone component allowing the reader to focus on 

content specific to their interest. Therefore, some text is repeated to 

accommodate those who read selected sections at a time. 

This publication was supported by Cooperative Agreement Number U57/CCU 623066-01 

from the Centers for Disease Control and Prevention. Its contents are solely the 

responsibility of the authors and do not necessarily represent the official views of the Centers 

for Disease Control and Prevention, the Department of Health and Human Services, or the 

U.S. government.

ii 
CONTENTS 

Special Acknowledgments iv

Index of Acronyms v

Executive Summary ES -1 

I. Background 1

A. The Cancer Burden . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

B. Redefining Cancer Survivorship . . . . . . . . . . . . . . . . . . . 3

C. Issues for Cancer Survivors . . . . . . . . . . . . . . . . . . . . . . . 4

D. Public Health and Cancer Survivorship . . . . . . . . . . . . . . 8

E. Summary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

II. Strategic Framework 13

A. Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

B. Overarching Goals and Objectives . . . . . . . . . . . . . . . . . 14

C. Guidelines for the National Action Plan . . . . . . . . . . . . . 15

III. Cross-Cutting Needs and Strategies 19

IV. Surveillance and Applied Research 27

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 28

V. Communication, Education, and Training 35

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 36

VI. Programs, Policies, and Infrastructure 43

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 44

VII. Access to Quality Care and Services 51

A. Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

B. Prioritized Needs and Suggested Strategies . . . . . . . . . . . 52

VIII. Implementation 57

A. Indicators. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

B. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58

Explanations of Phrases and Terms 

(for terminology appearing in bold text) 61

References 67

Appendix A: Participating Partners and Reviewers A-1

Appendix B: Healthy People 2010 Cancer Objectives B-1

iii 
SPECIAL ACKNOWLEDGMENTS 

We gratefully recognize the combined knowledge, effort, and 

commitment that our partners contributed to the completion of 

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. 

We salute and thank the following partners who are leaders in the 

cancer survivorship field. 

Cosponsors 

Centers for Disease Control and Prevention 

Lance Armstrong Foundation 

Partners 

Alaska Native Tribal Health Consortium 

American Cancer Society 

American Society of Clinical Oncology 

Cancer Care Incorporated 

Centers for Disease Control and Prevention 

Children’s Hospital of Los Angeles 

Children’s Hospital of Philadelphia 

Children’s Oncology Camp Foundation 

Chronic Disease Directors 

Congressman Roger Wicker’s Office 

Dana-Farber Cancer Institute 

Fertile Hope, Inc. 

Gilda’s Club Worldwide 

Institute for the Advancement of Social 

Work Research 

Institute of Medicine 

Intercultural Cancer Council 

Maryland Cancer Plan 

Michigan Department of Community Health 

National Cancer Institute 

National Coalition for Cancer Survivorship 

National Hospice and Palliative Care 

Organization 

National Institutes of Health 

New York State Department of Health 

North Carolina Division of Health and 

Human Services 

Oklahoma State Department of Health 

Oncology Nursing Society 

Ovarian Cancer National Alliance 

Presbyterian Hospital of Dallas 

Patient Advocate Foundation 

RAND Corporation 

RTI International 

Saint Jude Children’s Research Hospital 

Sisters Network, Incorporated 

Sonnenschein Nath & Rosenthal 

The Leukemia & Lymphoma Society 

The National Center for Health Promotion 

The Susan G. Komen Breast 

Cancer Foundation 

The Unbroken Circle 

Texas Cancer Council 

Texas Department of Health 

Ulman Cancer Fund for Young Adults 

University of Texas Medical Branch 

School of Nursing 

University of Minnesota 

University of Pennsylvania Abramson 

Cancer Center 

University of Rochester 

University of Texas, M.D. Anderson 

Cancer Center 

University of Texas Southwestern 

Medical Center 

United States Conference of Mayors 

iv 
INDEX OF ACRONYMS

ACS American Cancer Society 

BRFSS Behavioral Risk Factor Surveillance System 

CCC Comprehensive Cancer Control 

CDC Centers for Disease Control and Prevention 

CIS Cancer Information Service 

IOM Institute of Medicine 

LAF Lance Armstrong Foundation 

NAAP National Arthritis Action Plan 

NCCS National Coalition for Cancer Survivorship 

NCI National Cancer Institute 

NHIS National Health Interview Survey 

NIH National Institutes of Health 

NPCR National Program of Cancer Registries 

PHFSC Public Health Functions Steering Committee 

SEER Surveillance, Epidemiology, and End Results 

USDHHS U.S. Department of Health and Human Services 

v 
EXECUTIVE SUMMARY 

The Facts 

Cancer is the second leading cause of death among adults in the 

United States and affects an estimated 1 in 3 individuals in their 

lifetime, either through their own diagnosis or that of a loved one 

(ACS, 2003). Increasing innovations in medical technology have led 

to earlier diagnoses and improved treatment of many cancers, 

resulting in more people diagnosed with cancer surviving each year. 

Currently, approximately 62% of cancer survivors are expected to 

live at least 5 years after diagnosis (ACS, 2003). As of January 2000, 

there were approximately 9.6 million cancer survivors in the United 

States (NCI, 2003a). This estimate includes people diagnosed with 

cancer but does not include others affected by a diagnosis, such as 

family members and friends. 

The Challenge 

Public health programs address the prevention and control of health 

problems affecting large groups of people. Although many public 

health initiatives address early detection, prevention, and control of 

cancer, public health is new to the cancer survivorship arena. 

Throughout this National Action Plan, the term “cancer survivors” 

refers to those people who have been diagnosed with cancer and the 

people in their lives who are affected by their diagnosis, including 

family members, friends, and caregivers. Cancer survivors could 

benefit tremendously from a coordinated public health effort to 

support them. Survivors face numerous physical, psychological, 

social, spiritual, and financial issues throughout their diagnosis and 

treatment and for the remaining years of their lives. Many of these 

issues could be successfully addressed through public health 

initiatives, both by the prevention of secondary diseases or 

recurrence of cancer and by improving quality of life for each 

survivor. A public health effort to address cancer survivorship 

supports the Healthy People 2010 goal to increase the proportion of 

cancer survivors who are living 5 years or longer after diagnosis to 

70% (USDHHS, 2000). Further, the financial burden of cancer 

treatment is estimated to be at least $41 billion annually (NCI, 

2003b), and this dollar amount does not reflect the burden of 

cancer on the survivor in every other realm of life. Given this 

information, it is in the country’s best interest to more effectively 

and systematically provide public health services to cancer survivors. 

ES-1 
The Plan 

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

was developed through a partnership between the Centers for Disease 

Control and Prevention (CDC) and the Lance Armstrong 

Foundation (LAF) to identify and prioritize cancer survivorship 

needs that will advance cancer survivorship public health efforts. 

Specific objectives of the National Action Plan include the following: 

• Achieve the cancer survivorship-related objectives in Healthy 

People 2010 that include benchmarks for success in measuring 

improvements for addressing ongoing survivor needs. 

• Increase awareness among the general public, policy makers, 

survivors, providers, and others of cancer survivorship and its 

impact. 

• Establish a solid base of applied research and scientific 

knowledge on the ongoing physical, psychological, social, 

spiritual, and economic issues facing cancer survivors. 

• Identify appropriate mechanisms and resources for ongoing 

surveillance of people living with, through, and beyond 

cancer. 

• Establish or maintain training for health care professionals 

to improve delivery of services and increase awareness of 

issues faced by cancer survivors. 

• Implement effective and proven programs and policies to 

address cancer survivorship more comprehensively. 

• Ensure that all cancer survivors have adequate access to highquality treatment and other post-treatment follow-up 

services. 

• Implement an evaluation methodology that will monitor 

quality and effectiveness of the outcomes of initiatives. 

Once these objectives were identified, CDC and LAF brought 

together experts in cancer survivorship and public health to create 

this National Action Plan. Needs and strategies for addressing these 

needs were discussed within four core public health components: 

• Surveillance and applied research 

• Communication, education, and training 

• Programs, policies, and infrastructure 

• Access to quality care and services 

This National Action Plan represents these discussions and sets 

priorities and identifies strategies for national, state, and 

community-level public health organizations. Given the importance 

ES-2 
of this health issue—its prevalence, its impact on quality of life, and 

the resulting costs to survivors and others in their lives—the time for 

action is now. This National Action Plan should be used to guide the 

allocation of resources to decrease the burden of cancer for all 

Americans and improve the overall experience and quality of life of 

the millions who are living with, through, and beyond cancer. 

ES-3 

Carlos, Cancer Survivor 

“Survivorship means being given a second 

chance at life.” 
I. BACKGROUND 

The number of people affected by cancer, both individuals 

diagnosed with the disease and their families and friends, is 

staggering. Although all Americans are at risk of a cancer diagnosis 

in their lifetimes, there have been remarkable reductions in deaths 

associated with cancer. These reductions in deaths are largely due to 

the implementation of prevention and early detection efforts for 

certain cancers, increased screening of the general population and 

those at highest risk for developing these diseases, and advances in 

research and clinical care. As of January 2000, there were 

approximately 9.6 million persons living following a cancer 

diagnosis in the United States (NCI, 2003a) not including family 

members, friends, and caregivers. This number is expected to 

increase steadily over the coming years. 

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

was developed through a partnership between the Centers for 

Disease Control and Prevention (CDC) and the Lance Armstrong 

Foundation (LAF). Through this partnership and with input from 

a variety of experts and advocates in public health and cancer 

survivorship, this National Action Plan charts a course for how the 

public health community can more effectively and comprehensively 

address cancer survivorship, including the following: 

• Preventing secondary cancers and recurrence of cancer 

whenever possible. 

• Promoting appropriate management following diagnosis 

and/or treatment to ensure the maximum number of years of 

healthy life for cancer survivors. 

• Minimizing preventable pain, disability, and psychosocial 

distress for those living with, through, and beyond cancer. 

• Supporting cancer survivors in accessing the resources and 

the family, peer, and community support they need to cope 

with their disease. 

The goal of this National Action Plan is to advance public health 

efforts regarding cancer survivorship to actively address the needs of 

this growing population. 

The following section describes elements important to 

understanding the issues cancer survivors face. Throughout this 

National Action Plan, the term “cancer survivors” refers to those 

people who have been diagnosed with cancer and the people in their 

lives who are affected by their diagnosis, including family members, 

friends, and caregivers. 

I. Background 1 
A. The Cancer Burden 

Everyone is potentially at risk for developing some form of cancer. 

The American Cancer Society (ACS) predicts that as many as 1.3 

million new cancer cases will be diagnosed in 2003 (ACS, 2003). 

Age is a primary risk factor for most cancers, with about 77% of all 

cancers diagnosed among individuals aged 55 or older. Cancer 

incidence varies by race and ethnicity, with some groups being more 

likely to be diagnosed with certain types of cancers than others. 

Cancer is the second leading cause of death in the United States, 

causing 1 of every 4 deaths each year (ACS, 2004). If current 

trends continue, one-third of Americans will be diagnosed with 

cancer in their lifetimes (NCI, 2003a). There is a great deal of 

misunderstanding about cancer, the effects it can have on those 

diagnosed with it, and the importance of addressing the ongoing 

needs of survivors as progress is made in finding treatments and 

prolonging life after diagnosis. 

How many people are expected to survive cancer? 

As previously noted, there were approximately 9.6 million persons 

living following a cancer diagnosis in the United States as of January 

2000 (NCI, 2003a) not including family members, friends, and 

caregivers. Survival rates from cancer depend a great deal on the site 

where the initial growth began (e.g., breast, colon) and the stage of 

progression at which the cancer was diagnosed (i.e., whether the 

growth has metastasized). The implementation of prevention 

(tobacco control and skin protective behavior) and early detection 

efforts for four cancer types (breast, cervical, colorectal, and 

prostate), which has increased screening of the general population 

and those at highest risk for developing these diseases, and advances 

in research and clinical care have led to remarkable reductions in 

cancer-related mortality. 

Despite the optimistic outlook for most individuals diagnosed with 

cancer today, a closer examination of the literature and of statistical 

trends indicates that the benefits of current knowledge about stateof-the-art cancer care are not shared equally by all members of our 

society (Aziz & Rowland, 2003). When survival rates are broken 

down by race/ethnicity, it is clear that significant differences exist 

across racial/ethnic minority and medically underserved populations 

with respect to the risk of developing and dying from cancer. For all 

cancer sites combined, African Americans are more likely to develop 

and die from cancer than persons of any other racial or ethnic 

group. They are also at greater risk of dying of the four most 

2 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
common types of cancer (lung, breast, colon, and prostate cancer) 

than any other minority group (ACS, 2004). 

B. Redefining Cancer Survivorship 

When cancer was considered incurable, the term “survivor” was used 

to describe family members who survived the loss of a loved one to 

cancer (Leigh, 1996). As knowledge and success in understanding 

cancer increased, physicians began to use a 5-year time frame to 

define survivorship. If cancer did not recur in the 5 years following 

either diagnosis or treatment, patients were considered to have 

become “survivors” (Leigh, 1996). 

As a result of strong advocacy efforts and coordination led by such 

organizations as the National Coalition for Cancer Survivorship 

(NCCS), the term “cancer survivor” has been redefined. The term is 

now commonly used to describe an individual from the time of 

diagnosis through the remaining years of life (NCCS, 2003; Leigh, 

1996). The National Cancer Institute (NCI) has also expanded this 

definition to include caregivers and family members within its rubric 

(Aziz, 2002). This definition—cancer survivor as the person 

diagnosed with cancer, as well as family members, friends, and 

caregivers—is the one used in this National Action Plan. The next 

sections provide an overview of cancer survivorship and describe the 

issues many survivors face every day. 

What are the stages of cancer survivorship? 

In “Seasons of Survival: Reflections of a Physician with Cancer,” 

Mullan (1985) was the first to discuss the experience of cancer in 

terms of a progression of events or stages. He proposed a model of 

survival that includes three stages: “acute,” “extended,” and “ 

permanent.” The acute stage begins with diagnosis and spans the 

time of further diagnostic and treatment efforts. Mullan describes 

fear, anxiety, and pain resulting from both illness and treatment as 

“important and constant elements of this phase.” This stage is 

defined not only by the experience of the person diagnosed with 

cancer but also by those of the family members who are affected by 

the diagnosis. 

The extended stage of survival begins when the survivor goes into 

remission or has completed treatment. Psychologically, this stage is a 

time of watchful waiting, with the individual wondering if symptoms 

may be signs of recurrence or just a part of everyday life. Cancer 

could return at the same site or in a new location. When treatment is 

complete, diminished contact with the health care team can also 

I. Background 3 
cause great anxiety. Physically, it is a period of continued limitation 

resulting from having had both illness and treatment. During this 

stage, survivors may be learning to live with chronic side effects and 

accompanying anxieties. 

The permanent stage is defined as a time when the “activity of the 

disease or likelihood of its return is sufficiently small that the cancer 

can now be considered permanently arrested” (Mullan, 1985, p. 272). 

Mullan acknowledges, however, that this stage is more complex than 

simply the status of disease: a person in this stage may still face social 

and economic challenges, such as problems with employment and 

insurance, psychological challenges, the fear of recurrence, and 

secondary effects from previous cancer treatment. 

End-of-life issues can occur during any of the three stages. 

End-of-life care affirms life and regards dying as a normal process, 

neither hastening nor postponing death while providing relief from 

distress and integrating psychological and spiritual aspects of survivor 

care. The goal of end-of-life care is to achieve the best possible 

quality of life for cancer survivors by controlling pain and other 

symptoms and addressing psychological and spiritual needs. 

Following the work of Mullan (1985) and Leigh (1996), LAF 

defines the experience of cancer survivorship as living “with,” 

“through,” and “beyond” cancer. Living “with” cancer refers to the 

experience of receiving a cancer diagnosis and any treatment that 

may follow, living “through” cancer refers to the extended stage 

following treatment, and living “beyond” cancer refers to posttreatment and long-term survivorship. Although this definition is 

designed to signify the experience of survivorship as a progression, 

this process is unique for each patient, and movement from one 

phase to the next may not be clearly delineated. 

C. Issues for Cancer Survivors 

How does cancer affect individuals? 

Diagnosis of cancer is a threat to a person’s physical, psychological, 

social, spiritual, and economic well-being. During its various stages, 

cancer can deprive persons diagnosed with it of their independence 

and can disrupt the lives of family members and other caregivers. 

Physical symptoms of cancer can be both acute and chronic and 

can occur during and after treatment. Physical symptoms may 

include pain, fatigue, nausea, hair loss, and others, depending on 

the cancer site and the types of treatments a patient receives. The 

symptoms experienced by some people with cancer can be 

debilitating and may result in bed rest. Adequate palliative care to 

4 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
provide pain and symptom management through every stage of 

cancer and its treatment is a major concern for survivors. The late or 

long-term physical effects of cancer itself and/or its treatment can 

include decreased sexual functioning, loss of fertility, persistent 

edema, fatigue, chronic pain, and major disabilities. These effects 

can be devastating, resulting in a loss of mobility (e.g., loss of leg, 

spinal injury) and changes in bodily functions (e.g., colostomy, 

laryngectomy) and appearance (e.g., disfiguring surgery, 

amputation). Major physical issues that affect long-term survival 

include recurrence of the original disease, development of secondary 

cancers, premature aging, and organ/systems failure. 

Psychological issues associated with cancer diagnosis and 

treatment includes fear, stress, depression, anger, and anxiety. 

However, the effects of cancer on an individual are not always 

negative. Cancer can also provide opportunities for people to find 

renewed meaning in their lives, build stronger connections with 

loved ones, and foster a commitment to “give back” to others who go 

through similar experiences. After cancer diagnosis and/or 

treatment, survivors can continue to live active, vital lives—but they 

may live with the uncertainty and the fear that cancer might return. 

People with cancer may also experience difficulties in coping with 

pain and disability caused by either their disease or the treatment 

they are undergoing. Emotional impacts on survivors can include 

feelings of helplessness, lack of self-control, changes to self-esteem 

and self-image for the survivor, and added stress and anxiety for 

their caregivers (NCI, 2002). 

Social well-being can be affected by cancer diagnosis and 

treatment through the physical and psychological impacts discussed 

above. The physical difficulties of pain and disability may result in a 

decreased sense of social well-being by limiting the time survivors are 

able to spend with important people in their lives. Survivors also 

often experience increased difficulties in school or on the job, in 

terms of their ability to interact with friends and coworkers, because 

of the impact diagnosis and treatment can have on their self-image 

(NCI, 2003b). 

Spirituality can take many different forms in the lives of cancer 

survivors; it can come from organized religion or from personal 

beliefs and faith. Some survivors struggle with spirituality as part of 

their cancer experience and say that their faith has been tested. 

Others gain support from their faith and allow it to guide them 

through their experience (NCI, 2002). Surviving cancer is a 

complicated journey that takes its toll on the spirit as well as the body. 

Some survivors wrestle with “why me” questions about having a cancer 

I. Background 5 
diagnosis or experience survivors’ guilt because they lived through 

their diagnosis while others have died. Spiritually, survivors may deal 

with unresolved grief, reevaluate their lives, reprioritize their goals 

and ambitions, and redefine “normal” for themselves. Cancer 

survivors are often looking for guidance and strength to help them 

through the spiritual journey. In many cases, survivors’ spirituality 

helps them to understand the meaning of their cancer experience and 

embrace life with a renewed vigor and sense of purpose. Survivors 

often gain strength through their faith; this strength allows survivors 

and their loved ones to answer tough questions and to face each day 

with love and confidence (NCI, 2002). 

Economic costs incurred by survivors and their families are 

another important consideration. Cost implications of cancer 

include inability to access quality care, financial burdens resulting 

from health care costs, and income loss resulting from work 

limitations. Often, survivors have to cope with losing a job because 

of their employers’ preconceived notions about the impact cancer 

will have on their work capabilities. With job changes, survivors may 

be unable to qualify for health insurance and often find it difficult 

to obtain life insurance after diagnosis. Family members of cancer 

patients may experience significant financial burdens while serving in 

the role of caretaker, especially during the end-of-life phase. 

Similarities or differences in the survivorship experience among 

different racial or ethnic groups or among medically underserved 

people are virtually unexplored. 

6 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
What are the common myths about cancer and 

cancer survivorship? 

There are many myths and misunderstandings about cancer and the 

effects it can have on survivors. The following table summarizes some 

selected myths and the facts to counteract these misconceptions. 

Common Myth Facts to Counter Myth 

Cancer is a disease Although approximately 77% of all cancer 

that only affects older cases are diagnosed at age 55 or older, 

people. everyone is at risk of developing some form of 

cancer (ACS, 2003). 

Cancer only affects 

the person diagnosed 

with the disease. 

For many years, the focus of cancer diagnosis 

and treatment was on the person diagnosed 

with the disease. However, recent advances in 

our understanding of survivorship have led to 

the expanded definition of “survivor” to include 

others touched by this disease, such as 

families, friends, and caregivers. 

Cancer is the same 

for everyone. 

Because cancer can occur anywhere within the 

body, survivors can experience different 

symptoms depending on the site of their 

diagnosis. Depending on the site of the initial 

cancer growth and the stage at diagnosis, the 

available treatments and resources will vary 

greatly, such that more services and resources 

are available to survivors of certain cancers 

(e.g., breast or leukemia) than for other rarer 

forms of cancer (e.g., myeloma or laryngeal). 

The need for care of 

survivors ends once 

treatment is complete. 

Cancer can be a chronic disease that often has 

long-term effects on a survivor’s life. Although 

many cancers can now be cured or the growth 

greatly slowed, the impacts of diagnosis will 

remain with a survivor for years. Because more 

survivors are living longer, especially those 

diagnosed with cancer as a child or young 

adult, there is a need to address long-term 

issues of survivorship. These can include 

ongoing physical, psychological, and other 

types of issues (see Section I.C.) 

Diagnosis of cancer 

means certain death. 

The risk of dying of cancer following diagnosis 

has steadily decreased over the past several 

decades. Fewer than half the people diagnosed 

with cancer today will die of the disease; in 

fact, some are completely cured, and many 

more survive for years because of early 

diagnosis or treatments that control many types 

of cancer (ACS, 2004). 

I. Background 7 
Although many dedicated individuals and organizations have 

contributed to reductions in the number of cancer diagnoses and an 

increase in the likelihood of survival following diagnosis, much 

remains to be done. An ever-growing population of cancer 

survivors is in need of medical care, public health services, and 

support. All of these factors need to be taken into account when 

assessing the experience of cancer survivorship. 

D. Public Health and Cancer Survivorship 

A primary purpose of this National Action Plan is to identify areas 

within the realm of public health that can be mobilized to address 

the needs of cancer survivors. Although the role of biomedical 

research is to increase our understanding of the causes and physical 

effects of cancer, responsibility for applying knowledge about 

potential interventions that can be implemented to eradicate disease 

and/or improve the quality of life rests within both the medical care 

and public health communities. Because cancer survivorship imposes 

a tremendous individual and societal burden and proven 

interventions are available to address survivor needs, a coordinated 

public health effort is warranted. The focus of that effort should be 

broad and encompass entire population groups, in contrast with the 

medical model, which generally focuses on individual patients. The 

following provides an overview of public health and existing 

infrastructure that can be used to initiate efforts for cancer survivors. 

What is public health? 

Public health practice is the science and art of preventing disease, 

prolonging life, and promoting health and well-being (Winslow, 

1923). More recently, the Institute of Medicine (IOM) (1998) has 

defined the mission of public health as assuring conditions in which 

people can be healthy. Public health’s mission is achieved through 

the application of health promotion and disease prevention 

technologies and interventions designed to improve and enhance 

quality of life (PHFSC, 1994). Health promotion and disease 

prevention technologies encompass a broad array of functions and 

expertise, including the 3 core public health functions and 10 

essential public health services presented in the following table. 

8 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Three Core Public Health Functions 

• Assess and monitor the health of communities and populations at risk to 

identify health problems and priorities. 

• Formulate public policies, in collaboration with community and 

government leaders, designed to solve identified local and national health 

problems and priorities. 

• Assure that all populations have access to appropriate and cost-effective 

care, including health promotion and disease prevention services, and 

evaluation of the effectiveness of that care. 

Ten Essential Public Health Services 

• Monitor health status to identify community health problems. 

• Diagnose and investigate health problems and health hazards in 

the community. 

• Inform, educate, and empower people about health issues. 

• Mobilize community partnerships to identify and solve health problems. 

• Develop policies and plans that support individual and community 

health efforts. 

• Enforce laws and regulations that protect health and ensure safety. 

• Link people to needed personal health services and assure the provision of 

health care when otherwise unavailable. 

• Assure a competent public health and personal health care workforce. 

• Evaluate effectiveness, accessibility, and quality of personal and 

population-based health services. 

• Research for new insights and innovative solutions to health problems. 

Source: Public Health Functions Steering Committee (PHFSC), 1994. 

What is the relevant public health infrastructure for addressing 

cancer survivorship? 

Two agencies within the U.S. Department of Health and Human 

Services—the National Institutes of Health (NIH) and CDC—have 

been established to conduct research and implement public health 

strategies to address cancer. Within NIH, NCI works to reduce the 

burden of cancer morbidity and mortality among Americans. NCI’s 

goal is to stimulate and support scientific discovery and its application 

to achieve a future when all cancers are uncommon and easily treated. 

Through basic and clinical biomedical research and training, NCI 

conducts and supports research programs to understand the causes 

of cancer; prevent, detect, diagnose, treat, and control cancer; and 

disseminate information to the practitioner, patient, and public 

(NIH, 2003). NCI works to “enhance the quality and length of 

survival of all persons diagnosed with cancer and to minimize or 

I. Background 9 
stabilize adverse effects experienced during cancer survivorship” 

(NIH, 2003). Through its conduct and support of research, NCI 

works to effectively address all issues facing cancer survivors (see 

Section I.C.). 

Within the CDC, the National Center for Chronic Disease 

Prevention and Health Promotion works to prevent cancer and to 

increase early detection of cancer. CDC works with partners in the 

government, private, and nonprofit sectors to develop, implement, 

and promote effective cancer early detection, prevention, and 

control practices nationwide (CDC, 2003a). Within the CDC, the 

National Comprehensive Cancer Control (CCC) Program 

provides a mechanism for addressing cancer survivorship within the 

realm of public health. 

Background on the CDC’s Comprehensive Cancer 

Control Program 

CDC began implementing the CCC Program through state health 

departments and other entities in the mid-1990s and defines this 

Program as “an integrated and coordinated approach to reducing 

cancer incidence, morbidity, and mortality through prevention, 

early detection, treatment, rehabilitation, and palliation” (CDC, 

2002, p. 1). This strategy aims to engage and build a coordinated 

public health response and provide a way to assess and then address 

the cancer burden within a state, territory, or tribal organization. 

Not only do state-level CCC Programs build on the achievements of 

cancer programs, they enhance the infrastructure created for them— 

many of which focus on individual cancer sites or risk factors. 

Partnerships between public and private stakeholders whose 

common mission is to reduce the overall burden of cancer provide 

the foundation for these statewide programs: 

“These stakeholders review epidemiologic data and research evidence 

(including program evaluation data) and then jointly set priorities for 

action. The partnership then mobilizes support for implementing these 

priorities and puts in place a systematic plan to institutionalize the 

comprehensive approach as a means to coordinate activities, monitor 

progress over time, and reassess priorities periodically in light of emerging 

developments in cancer and related fields” (CDC, 2002, p. 2). 

Public health agencies are using this support to establish broadbased cancer coalitions, assess the burden of cancer, determine 

priorities for cancer prevention and control, and develop and 

10 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
implement comprehensive plans, most of which include addressing 

the needs of cancer survivors. 

E. Summary

A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

was developed to identify and prioritize cancer survivorship needs 

and strategies within the context of public health that will ultimately 

improve the overall experience and quality of life of the millions of 

Americans who are living with, through, and beyond cancer. It can 

be used by state agencies, organizations, and individuals in selecting 

and developing activities to comprehensively address cancer 

survivorship. The primary outcomes of this National Action Plan are 

to increase awareness among the general public, policy makers, 

researchers, advocates, survivors, and others of the role public health 

can play in advancing cancer survivorship issues and to stimulate 

organizations to take action to meet the identified needs in 

surveillance and applied research; communication, education, 

and training; programs, policies, and infrastructure; and access to 

quality care and services. 

I. Background 11 
Theodore, Cancer Survivor 

“Survivorship means more time and responsibility – 

time for family, friends, work and life.” 
II. STRATEGIC FRAMEWORK 

CDC and LAF collaborated in 2002 to comprehensively address 

cancer survivorship within the realm of public health. Through a 

series of subsequent meetings among key partners (Appendix A), 

areas within public health that could be enhanced to address cancer 

survivorship were identified. 

To expand these efforts to additional partners, including 

numerous organizations, advocates, survivors, and researchers, the 

CDC and the LAF conducted a workshop in June 2003 entitled 

Building Partnerships to Advance Cancer Survivorship and Public 

Health. This 2-day workshop brought together nearly 100 experts 

from multiple disciplines to discuss how public health can be 

mobilized to address cancer survivorship in the identified public 

health areas. Using the core public health functions and services as a 

guide (see Section I.D.), participants were led through a process to 

identify priority needs in the following four identified topic areas 

within the realm of public health: 

• Surveillance and applied research 

• Communication, education, and training 

• Programs, policies, and infrastructure 

• Access to quality care and services 

The culmination of these efforts is A National Action Plan for Cancer 

Survivorship: Advancing Public Health Strategies. This National Action Plan 

provides a vision and a framework for addressing the problems faced 

by cancer survivors in our nation. It further proposes strategic 

initiatives that would constitute a coordinated, responsible approach 

within the entire public health structure, including at the national, 

state, and community levels. This National Action Plan is 

groundbreaking in that it outlines a comprehensive, systematic public 

health approach to acknowledging and addressing cancer survivorship. 

A. Purpose

The goal of this National Action Plan is to identify and prioritize 

cancer survivorship needs and identify strategies within public health 

to address those needs that will ultimately lead to improved quality of 

life for the millions of Americans who are living with, through, and 

beyond cancer. A first step in addressing these needs is to develop 

strong partnerships with health professionals, researchers, survivors, 

advocates, and other key stakeholders. These partnerships will serve 

to identify and prioritize the steps necessary to integrate cancer 

II. Strategic Framework 13 
survivorship issues into the public health domain. Outcomes of the 

National Action Plan’s development include the following: 

• Laying the foundation for public health activities in 

cancer survivorship. 

• Identifying, discussing, and prioritizing strategies to expand 

and enhance the role of public health agencies and 

practitioners in cancer survivorship. 

• Facilitating the development and enhancement of 

collaborations and partnerships that will assist with the 

expansion of public health’s role in cancer survivorship. 

B. Overarching Goals and Objectives 

The overarching goal of this National Action Plan is to establish a 

coordinated national effort for addressing cancer survivorship within 

the realm of public health. Specific objectives include the following: 

• Achieve the cancer survivorship-related objectives in Healthy 

People 2010 (Appendix B) that include benchmarks for 

success in measuring improvements for addressing ongoing 

survivor needs. 

• Increase awareness among the general public, policy makers, 

survivors, and others of cancer survivorship and its impact. 

• Establish a solid base of applied research and scientific 

knowledge on the ongoing physical, psychological, social, 

spiritual, and economic issues facing cancer survivors. 

• Identify appropriate mechanisms and resources for ongoing 

surveillance of people living with, through, and beyond 

cancer. 

• Establish or maintain training for health care professionals 

to improve delivery of services and increase awareness of 

issues faced by cancer survivors. 

• Implement effective and proven programs and policies to 

address cancer survivorship more comprehensively. 

• Ensure that all cancer survivors have adequate access to 

high-quality treatment and other post-treatment 

follow-up services. 

• Implement an evaluation methodology that will monitor 

quality and effectiveness of the outcomes of this initiative. 

14 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
C. Guidelines for the National Action Plan 

Addressing and achieving the National Action Plan’s goals and 

objectives require a multifaceted approach that is both ambitious and 

feasible. The National Action Plan consists of prioritized needs and 

strategies in four major areas of public health work, which are 

defined below: surveillance and applied research; communication, 

education, and training; programs, policies, and infrastructure; and 

access to quality care and services. 

C.1 Surveillance and Applied Research 

Surveillance and applied research are the scientific tools of public 

health and can be used to establish a solid, systematic knowledge base 

in cancer survivorship. 

Surveillance 

Cancer surveillance is the systematic collection, analysis, and use of 

cancer data. Information obtained through surveillance measures is 

critical for directing effective cancer prevention and control programs 

(CDC, 2001). Primary surveillance measures include cancer registries 

and several national and regional/state surveys. Cancer registries 

(National Program of Cancer Registries [NPCR]; Surveillance, 

Epidemiology, and End Results [SEER] Program) implement and 

maintain information systems designed to collect and manage data on 

each newly diagnosed case of cancer. National surveys, such as the 

National Health Interview Survey (NHIS) and the Behavioral Risk 

Factor Surveillance System (BRFSS), provide information on health 

attitudes, beliefs, and behaviors that could be used to help understand 

issues related to all stages of cancer survivorship. 

Applied Research 

Cancer survivorship research in a public health context would focus 

efforts on applying our knowledge of cancer and issues survivors face 

to the development of appropriate interventions. Understanding 

specific structural, policy, or behavioral barriers to desired outcomes 

and evaluating programmatic efforts are other examples of applied 

research. Applied research investigates the extent to which these 

efforts effectively address survivor needs and provides findings that 

can guide further development of initiatives. 

C.2 Communication, Education, and Training 

Communication, education, and training include efforts to 

communicate with the general public and policy and decision makers, 

educate survivors and their families, and train health care providers 

II. Strategic Framework 15 
to meet informational needs of all those affected by cancer 

survivorship. 

Communication with the Public 

Communication with the general public and policy or decision 

makers about the issues surrounding cancer survivorship aims to 

create a societal understanding and acceptance of the growing 

population of cancer survivors and the issues they face. 

Survivor Education 

Education of cancer survivors includes provision of information 

tailored to the particular stage of survivorship. Such educational 

interventions may be most appropriate during the first 5 years after 

diagnosis as this is the time when many of the challenges associated 

with the adjustment to survivorship occur (Mullan, 1984). 

Provider Training 

Health care provider training aims to ensure that providers are 

aware of the medical and other special needs of cancer survivors so 

they can offer the spectrum of services available to enhance quality 

of life throughout survivorship and refer survivors to these services 

as appropriate. 

C.3 Programs, Policies, and Infrastructure 

Programs, policies, and infrastructure are the means by which 

change can be made in public health. 

Programs 

Programs are the actual implementation of specific interventions at 

the national, state, and community levels to address a public health 

problem (NAAP, 1999). Medical, psychosocial, legal, and financial 

issues could be addressed by programs that are comprehensive in 

scope and encompass care for each stage of cancer survivorship. 

Policies 

Policies include legislation, regulations, ordinances, guidelines, 

and norms that establish an environment conducive to program 

implementation and other changes specific to survivorship (NAAP, 

1999). These policies may be implemented at the national, state, 

organizational, and community levels in an effort to advance 

public health. 

16 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Infrastructure

Infrastructure is comprised of the basic resources and facilities in 

place to address survivorship and includes components of the health 

care and public health systems, such as state and local health 

departments, and the services and programs they provide. Effective 

infrastructure is required to operate and manage effective programs. 

As our health care system continues to evolve, delivery of quality care 

becomes more complex. Relationships among the public and private 

sectors, individual practitioners and managed care organizations, 

and voluntary health organizations directly influence access to care 

and provision of clinical and community services (NAAP, 1999). 

C.4 Access to Quality Care and Services 

Access to quality care and services means ensuring that survivors 

have access to evidence-based and appropriate treatment and services 

delivered in a timely and technically competent manner, with good 

communication, shared decision making between the cancer survivor 

and health care providers, and cultural sensitivity across the 

continuum of care and throughout the remainder of life (IOM, 

1999). Public health can play a role in identifying and disseminating 

proven programs in the following areas to groups of cancer survivors. 

Access to Quality Treatment 

Cancer treatment is complex and differs for each individual based on 

his or her specific situation and needs. All cancer patients should 

have timely access to the latest and most effective treatments available. 

This would include clinical trials, if appropriate. 

Pain and Symptom Management 

An important part of cancer treatment is the management of pain 

and other symptoms associated with both disease and treatment. The 

goal of pain and symptom management is to provide relief so that 

survivors can tolerate the diagnostic and therapeutic procedures 

needed to treat their cancer and live comfortably throughout each 

stage of cancer survivorship. 

End-of-Life Care 

Issues facing survivors and their families during end-of-life are 

complex and serious. Appropriate end-of-life care affirms life and 

regards dying as a normal process, neither hastening nor postponing 

death. The goal of end-of-life care is to achieve the best possible 

quality of life for cancer survivors. Although many survivors live 

many years beyond their diagnosis, the needs and desires of those 

who are in the process of dying must be addressed. 

II. Strategic Framework 17 
Lindy, Cancer Survivor 

“Survivorship means I get to watch my 

grandchildren growing up.” 
III. CROSS-CUTTING NEEDS AND STRATEGIES 

Four primary topic areas (see Section II.C.) for advancing cancer 

survivorship within the realm of public health have been identified: 

• Surveillance and applied research 

• Communication, education, and training 

• Programs, policies, and infrastructure 

• Access to quality care and services 

Within these topic areas, five specific cross-cutting needs 

were identified. 

1. Develop an infrastructure for a comprehensive database on

cancer survivorship. 

Increasing the capacity of surveillance systems to capture information 

on health topics of interest can lead to a better understanding of 

diseases and the people affected by them. Effective survivorship 

research is dependent upon the integration and interaction of many 

information sources that serve as a strong and comprehensive 

infrastructure for study. A comprehensive database system could 

provide information on the ongoing health and other issues facing 

survivors. It could also provide the opportunity to follow survivors 

for many years after cancer diagnosis in order to better understand 

the long-term effects of having this disease. Enhancing the existing 

surveillance and research infrastructure can also ultimately lead to 

the development and implementation of strategies identified for 

other topic areas outlined in this National Action Plan. The 

following strategies focus on the specific data needs for cancer 

survivorship that have been identified to enhance the existing 

surveillance systems and applied research initiatives: 

• Develop a national Work Group or Task Force composed of 

diverse organizations, representing private, nonprofit, and 

governmental agencies, to identify data needs for ongoing 

follow-up and confidential monitoring of cancer 

survivorship issues (e.g., treatment course and outcomes, 

quality-of-life indicators, long-term effects of diagnosis 

and treatment). 

• Assess existing data on cancer survivors to identify gaps in 

order to determine areas of future research. 

• Develop consensus on a set of data items or indicators used 

in the collection and analysis of cancer survivorship data, 

including data needed for long-term follow-up on survivors. 

III. Cross-Cutting Needs and Strategies 19 
• Improve coordination among existing databases (e.g., NPCR, 

BRFSS, SEER), and add data variables or indicators where 

possible to collect supplementary information on 

cancer survivors. 

• Develop a centralized resource center (i.e., clearinghouse) 

that includes linkages to all existing data sources and that 

provides for longitudinal data collection, monitoring, 

and follow-up. 

• Increase the number and types of funding opportunities to 

enable a broader range of researchers to participate in 

survivorship surveillance activities. 

• Use existing information technology to gather data on cancer 

diagnosis, treatment, and long-term issues and report the 

data in a timely manner. 

• Provide widespread access to public data sets as quickly as 

possible to enhance research activities. 

2. Develop, test, maintain, and promote patient navigation

systems that can facilitate optimum care for cancer survivors. 

Patient navigation is a tool that can be used to ensure that survivors 

understand their care and their process of care, and to enhance the 

delivery of optimum care. In these programs, health professionals 

and highly trained patient liaison representatives coordinate health 

care for patients and assist them in navigating the health care system. 

These navigators can provide information that will help educate the 

survivor about his or her health needs and concerns, ensure timely 

delivery of care, connect survivors with appropriate resources that 

will meet their needs, and provide general oversight to the delivery 

and payment of services for each survivor. Key strategies for 

developing and maintaining these programs include the following: 

• Establish infrastructure of the patient navigation system, 

consisting of appropriate existing national organizations, to 

implement a national program with consistent delivery of 

services for cancer survivors. 

• Promote universal input and buy-in by having patient 

navigation system co-branded and co-owned by all 

appropriate organizations. 

• Identify existing types of patient navigation systems delivered 

in a variety of locations or through different mechanisms 

(e.g., rural, urban, on-line, print, telephone, clinical trials), 

and determine those that are considered best practices. 

20 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
• Develop a database of existing and tested patient navigator 

tools/programs and educate survivors and others at the 

national, state, and community levels on their use. 

• Plan, develop, and incorporate patient navigation systems 

into state comprehensive cancer control plans. 

• Develop policies to require insurance coverage of patient 

navigation services. 

• Develop effective patient navigator tools that address issues of 

disparity (e.g., race, ethnicity, education, geography, 

income, gender) among survivors. 

• Encourage cancer survivors to volunteer their time (in-kind) 

to serve as individual navigators servicing other survivors. 

3. Establish and /or disseminate clinical practice guidelines for

each stage of cancer survivorship. 

Clinical practice guidelines are defined by the IOM as 

“...systematically developed statements to assist practitioner and 

patient decisions for specific clinical circumstances” (IOM, 1992). 

These guidelines summarize the collective research on outcomes 

pertaining to one disease. When using the guidelines, physicians have 

to select from among the guideline recommendations those that 

seem most applicable to each individual’s care. In their statement, 

“Principles of Quality Cancer Care,” the Cancer Leadership Council 

emphasizes that all people with cancer need to have timely access to 

care that is based on the best available evidence (NCCS, 2003). 

Treatment options should include access to clinical trials, therapies 

to manage side effects, and services to help survivors and caregivers 

cope with emotional and practical concerns. Guidelines have been 

developed for the treatment of particular cancers, but they are not 

necessarily comprehensive in the sense of specifying care for 

survivors at each stage of cancer survivorship (e.g., monitoring 

survivors after treatment is completed, monitoring long-term health 

care). Guidelines are also in place to address end-of-life care so that 

survivors do not suffer from intense pain and discomfort during the 

final stages of life (IOM, 1997). The following strategies are 

proposed to systematically move toward quality and timely service 

provision so that guidelines are available throughout every stage of 

living with, through, and beyond cancer: 

• Charge appropriate groups working on cancer survivorship 

issues (e.g., National Comprehensive Cancer Network, 

American Society of Clinical Oncology, NCCS) to develop 

clinical practice guidelines specific to each stage of 

cancer survivorship. 

III. Cross-Cutting Needs and Strategies 21 
• Establish a centralized location for housing these guidelines 

(e.g., National Guidelines Clearinghouse, Cancer 

Information Service [CIS]). 

• Develop both consumer and health care provider versions of 

each clinical practice guideline and disseminate through 

multiple channels and organizations. 

• Require that programs funded by public health organizations 

include implementation of clinical practice guidelines 

(e.g., state cancer plans, CCC Programs). 

• Ensure accessibility of services named in each clinical 

practice guideline. 

• Conduct ongoing evaluation of guidelines and use results to 

assess utilization. Modify guidelines as needed. 

• Provide training to cancer and non-cancer health 

professionals about guidelines to maximize 

workforce development. 

• Ensure quality workforce by requiring ongoing training on 

such topics as cultural sensitivity and palliative care. 

• Assess gaps in the health care workforce and develop 

strategies to recruit and retain quality service providers. 

4. Develop and disseminate public education programs that

empower cancer survivors to make informed decisions. 

No one medical answer is right for everyone. Cancer survivors are 

faced with extremely difficult medical decisions at each stage of living 

with, through, and beyond cancer. In making difficult medical 

decisions, survivors need to thoroughly understand their options for 

care and why it is in their best interest to participate fully in the 

decision-making process. The informed decision-making process 

also enables physicians to more fully understand the attitudes and 

values of their patients, especially those with diverse cultural 

backgrounds. A growing body of research shows that when patients 

are well-informed and play a significant role in deciding how they 

are going to manage their health, the results are more positive. 

Informed patients feel better about the outcomes of the decisionmaking process and are therefore more likely to follow their 

providers’ recommendations (Mulley, 1995). Key strategies for 

addressing this need include the following: 

• Form a national Task Force to develop programs addressing 

public education among survivors, and create a multifaceted 

strategic plan around this issue. 

22 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
• Identify existing resources available to survivors to facilitate 

informed decision making and advocacy skills, and develop 

programs or materials where information is lacking. 

• Charge the national Task Force with implementing marketing 

strategies and a multimedia campaign to effectively educate 

survivors about issues and available education programs, 

using numerous modes for communication (e.g., Internet, 

print media). 

• Disseminate and encourage implementation of best practices 

for enhancing informed decision making through a variety of 

venues (e.g., health care providers, advocacy groups, 

government agencies, legislators). 

5. Conduct ongoing evaluation of all activities to determine 

their impacts and outcomes and ensure continuous quality 

improvement of services. 

Evaluation planning and implementation are important processes in 

program development. The ultimate goals of these processes are to 

assess program implementation and outcomes, to increase program 

efficiency and impact over time, and to demonstrate accountability 

(CDC, 2001). According to CDC’s “Framework for Program 

Evaluation in Public Health” (1999), program evaluation is an 

essential organizational practice in public health. The Framework 

proposes that evaluation is necessary to use science as a basis for 

decision making and public health action, expand the quest for social 

equity through public health action, perform effectively as a service 

agency, make efforts outcome-oriented, and be accountable (CDC, 

1999). For evaluation to be effectively implemented, quality 

indicators need to be developed for programs and services so that 

progress toward articulated goals can be measured. These evaluation 

efforts should be continuous so that improvements can be made 

during all phases of program implementation. The following 

strategies could be used to comprehensively include evaluation and 

quality improvement in addressing all needs: 

• Identify evaluation measures for each type of program or 

strategy implemented from the National Action Plan. 

• Conduct theoretically-based and scientifically-grounded 

studies to assess implementation. 

• Disseminate evidence-based program evaluation findings 

through public health organizations and other venues in 

order to maximize use of information. 

III. Cross-Cutting Needs and Strategies 23 
Section III Summary:

Cross-Cutting Needs for Cancer Survivors

1. Develop an infrastructure for a comprehensive database on 

cancer survivorship. 

2. Develop, test, maintain, and promote patient navigation systems that 

can facilitate optimum care for cancer survivors. 

3. Establish and / or disseminate clinical practice guidelines for each 

stage of cancer survivorship. 

4. Develop and disseminate public education programs that empower 

cancer survivors to make informed decisions. 

5. Conduct ongoing evaluation of all activities to determine their impacts 

and outcomes and ensure continuous quality improvement of services. 

24 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

Jan, Breast Cancer Survivor 

“Survivorship is the ultimate understanding of 

one’s purpose in life.” 
IV. SURVEILLANCE AND APPLIED RESEARCH 

A. Goals

Surveillance and applied research are integral elements of any public 

health initiative. Surveillance provides data items or indicators on 

diseases and populations affected by them in order to understand 

what is associated with diagnosis, health care outcomes, and 

numerous other variables. Applied research uses these data to better 

understand how initiatives can be designed to more effectively 

address and meet the needs of groups of people. For cancer 

survivorship, goals for this topic area include the following: 

• Enhance the existing infrastructure to create a 

comprehensive surveillance system that can be used to 

understand the range of health issues that cancer survivors 

face and any differences between survivor groups based on 

demographic and medical variables. 

• Thoroughly understand the factors associated with 

susceptibility to problems during each stage of 

cancer survivorship. 

• Translate the research on cancer survivorship into practice by 

developing, implementing, and evaluating effective health 

intervention strategies. 

Surveillance and applied research are the scientific tools of 

public health and are defined here and in Section II.C. as follows: 

Surveillance 

Cancer surveillance is the systematic collection, analysis, and use of 

cancer data. Information obtained through surveillance measures is 

critical for directing effective cancer prevention and control 

programs (CDC, 2001). Primary surveillance measures include 

cancer registries and several national and regional/state surveys. 

Cancer registries (NPCR, SEER) implement and maintain 

information systems designed to collect and manage data on each 

newly diagnosed case of cancer. National surveys, such as the NHIS 

and BRFSS, provide information on health attitudes, beliefs, and 

behaviors that could be used to help understand issues related to all 

stages of cancer survivorship. 

Applied Research 

Cancer survivorship research in a public health context would focus 

efforts on applying our knowledge of cancer and issues survivors face 

to the development of appropriate interventions. Understanding 

IV. Surveillance and Applied Research 27 
specific structural, policy, or behavioral barriers to desired outcomes 

and evaluating programmatic efforts are other examples of applied 

research. Applied research investigates the extent to which these 

efforts effectively address survivor needs and provides findings that 

can guide further development of initiatives. 

Prioritized needs for these components and suggested strategies 

for addressing them are presented in the following section. 

B. Prioritized Needs and Suggested Strategies 

1. Enhance the existing surveillance and applied 

research infrastructure. 

Increasing the capacity of surveillance systems to capture information 

on health topics of interest can lead to a better understanding of 

diseases and the people affected by them. Effective survivorship 

research is dependent upon the integration and interaction of many 

information sources that serve as a strong and comprehensive 

infrastructure for study. A surveillance system that provides data on 

the long-term effects of cancer is critical to advancing survivorship. 

This need is described in detail in Section III of this National Action Plan. 

2. Identify factors associated with ongoing health concerns of

cancer survivors. 

As described in Section I, only within the past two decades have 

research and knowledge demonstrated that cancer is a disease a 

person can survive for many years after treatment. With their 

successful survival from cancer diagnosis and treatment, survivors are 

often faced with ongoing health concerns, such as heart problems, 

major disabilities, lymphedema, infertility, and others (NCI, 

2002). Although there is understanding of the types of health 

problems cancer diagnosis and treatment may cause immediately, less 

is known about the long-term effects and how different people are 

affected by the services they receive. Some people may be prone to 

certain types of complications or long-term difficulties, but little is 

known that can help prevent or educate survivors on avoiding these 

problems. The extent to which diagnosis and treatment of cancer 

may impact the chances that a survivor will later develop other, 

secondary diseases is also unknown. Assessments of the potential for 

these problems can help guide delivery of health services to prevent 

or encourage early detection of other cancers and health 

complications (e.g., diabetes, heart disease) and thereby improve the 

quality of life for survivors. In addition, knowing the characteristics 

of survivors who are more prone to develop ongoing complications 

28 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
can help researchers, policy and decision makers, program 

managers, and others to direct the development and implementation 

of survivorship services and programs that will address specific needs. 

Strategies to address this need include the following: 

• Initiate research studies to identify characteristics 

associated with certain types of cancer and/or secondary 

health concerns. 

• Identify modifiable behaviors (e.g., limited physical activity, 

poor eating habits) that can be targeted with interventions to 

reduce the likelihood of additional health problems. 

• Once more is known about which characteristics render 

survivors susceptible to health problems (e.g., different age 

groups), develop primary prevention education programs to 

inform survivors about their susceptibility and any behavioral 

changes they can make to reduce their risk. 

3. Determine programs and services that best address the needs of

cancer survivors. 

Once more is understood about the health concerns survivors may 

face—particularly those that occur long after treatment ends—and the 

groups of survivors most susceptible to them, programs and services 

can be delivered to maximize the chances of optimum health among 

survivors during each stage of living with, through, and beyond 

cancer. These programs and services can include providing adequate 

screening for cancer recurrence (e.g., more frequent follow-up 

screening exams for those diagnosed with screen-detectable cancers 

than is recommended for the general population), follow-up 

surveillance of health concerns (e.g., frequent testing for heart 

problems among survivors of childhood cancers [IOM, 2003]), 

psychological and/or support group services, planning for possible 

infertility, and additional services that can be made strategically 

available to those most susceptible to recurring problems. More 

needs to be understood about the types of programs and services to 

provide survivors and the point in time at which these interventions 

would have the greatest positive impact. Importantly, the 

characteristics of those survivors most likely to benefit from delivery 

of developed services need to be identified. Strategies to meet this 

need include the following: 

• Gain a better understanding of how cancer survivors interact 

with the health care system by conducting national surveys 

(e.g., NHIS, BRFSS) to delineate the services delivered, 

usage pattern, and any problems in these areas. 

IV. Surveillance and Applied Research 29 
• Enhance collaborative efforts among academic researchers 

and state health departments to develop research projects to 

increase the body of knowledge about the care and services 

that can be provided to survivors to reduce susceptibility to 

additional health problems. 

• Identify, evaluate, and disseminate findings of the most 

effective models of survivorship care. 

• Incorporate lessons learned from this body of knowledge 

into state comprehensive cancer control plans. 

4. Conduct research on preventive interventions to evaluate their

impact on issues related to cancer survivorship. 

Preventive interventions are those programs, activities, and services 

that identify areas of behavior that can be changed to reduce cancer 

recurrence and promote healthy lifestyles. The scope of preventive 

interventions includes, but is not limited to, reducing tobacco and 

alcohol use and sun exposure; improving nutrition, mental health, 

and early detection or follow-up, such as survivor self-advocacy; and 

increasing physical activity. This work is important not only for 

preventing other cancers and diseases but also for reducing cancer 

recurrence. Specific strategies for conducting this research include 

the following: 

• Develop an inventory of existing preventive interventions. 

• Evaluate programs in different public health settings to 

determine the effectiveness of a particular intervention and 

establish best practices for cancer survivors. 

• Identify gaps in existing interventions through 

evaluation research.

• Develop interventions that address people at highest risk 

for developing other cancers and/or secondary 

health conditions. 

• Conduct cost-effectiveness research of selected interventions. 

• Customize communication to specific cancer survivor 

populations, with a specific focus on underserved 

communities, to increase awareness of available interventions 

and resources. 

5. Translate applied research into practice. 

Translating scientific research into practice is a crucial step in 

increasing the quality of life of cancer survivors. Research findings 

should be utilized to develop and implement programs and services 

that reduce negative health effects and promote long-term health 

benefits. In turn, these programs will benefit cancer survivors by 

30 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
enhancing the health care services that they receive. The following 

strategies would begin to address this need: 

• Incorporate cancer survivorship as an issue to address in the 

Guide to Community Preventive Services (Truman et al., 

2000). This guide provides recommendations on preventive 

interventions that can be used in a community setting. 

• Develop tools/methods for translating research findings so 

that the general public can understand and apply the 

knowledge to their everyday life. 

• Use research findings to educate cancer survivors and others 

( including providers, organizations, and advocates) on 

survivorship issues. 

• Disseminate research findings to health care professionals 

and survivors through public health and other organizations, 

using a variety of venues (e.g., Internet, mail). 

IV. Surveillance and Applied Research 31 
Section IV Summary: 

Surveillance and Applied Research 

1. Enhance the existing surveillance and applied research infrastructure. 

2. Identify factors associated with ongoing health concerns of 

cancer survivors. 

3. Determine programs and services that best address the needs of 

cancer survivors. 

4. Conduct research on preventive interventions to evaluate their impact on 

issues related to cancer survivorship. 

5. Translate applied research into practice. 

32 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

Daniel, Two-time Lymphoma Survivor 

“Survivorship is far more than living through cancer 

treatment – it’s who I am.” 
V. COMMUNICATION, EDUCATION, AND TRAINING 

A. Goals

The ever-growing population of cancer survivors requires new 

information that affects not only survivors and their families but also 

health care providers and the public at large. These needs can be met 

through effective communication, education, and training efforts 

aimed at increasing awareness of cancer survivorship issues. These 

issues include the importance of effective prevention or management 

of secondary health concerns, appropriate management of cancer, 

ability to maintain adequate health coverage, adequate posttreatment care, and quality-of-life strategies for those at all stages of 

cancer survivorship. Goals in communication, education, and 

training include the following: 

• Structure existing and develop new messages about cancer 

survivorship to reach three broad audiences: the public, 

cancer survivors, and health care providers. 

• Tailor the content and delivery of these existing and/or 

developed messages for subgroups (e.g., culturally diverse 

groups, various health care professionals) within each of the 

three main audiences. 

• Use factual, consistent, culturally appropriate language 

and information. 

For the purposes of cancer survivorship, the topic areas are 

defined here and in Section II as follows: 

Communication with the Public 

Communication with the general public and policy or decision 

makers about the issues surrounding cancer survivorship aims to 

create a societal understanding and acceptance of the growing 

population of cancer survivors and the issues they face. 

Survivor Education 

Education of cancer survivors includes provision of information 

tailored to the particular stage of survivorship. Such educational 

interventions may be most appropriate during the first 5 years after 

diagnosis as this is the time when many of the challenges associated 

with the adjustment to survivorship occur (Mullan, 1984). 

Provider Training 

Health care provider training aims to ensure that providers are aware 

of the medical and other special needs of cancer survivors so they can 

V. Communication, Education, and Training 35 
offer the spectrum of services available to enhance quality of life 

throughout survivorship and refer survivors to these services as 

appropriate. 

Prioritized needs for these components and suggested strategies 

for addressing them are presented in the following section. 

B. Prioritized Needs and Suggested Strategies 

One aim of communication with the public is to dispel the myth 

that cancer is an inevitably disabling or fatal disease (Leigh & Clark, 

1998). This misconception may lead to fear and discrimination 

that creates a difficult environment for survivors. For example, 

25% of cancer survivors experience some form of employment 

discrimination based on their medical history (Hoffman, 1991). 

This may come in the form of demotions, reduction or elimination 

of benefits, or may manifest itself in communications or 

relationships with coworkers (Hoffman, 1991). 

The goal of communication with the public about cancer 

survivorship is to create societal understanding and acceptance of 

issues affecting survivors. Those developing public education 

campaigns need to take into account variations in messages and 

materials relating to cancer survivorship among different segments 

of the population. Organizations and agencies that disseminate 

information about cancer survivorship could partner together in 

these efforts to leverage resources and ensure the consistent and 

efficient delivery of cancer survivorship information. 

Although communication with the general public regarding cancer 

survivorship issues is important, cancer survivors and their families 

need specific information. Survivors’ educational needs vary 

depending on their stage of survivorship. Potential areas to be 

addressed in survivor-focused education include issues surrounding 

medical care after treatment, both for the first 5 years after diagnosis 

and the need for long-term care and/or prevention; prevention of 

secondary cancers and other health concerns; physical aftereffects 

and complications of cancer and cancer treatment; psychological and 

social effects of cancer diagnosis and treatment; and practical 

matters, such as employment and insurance coverage. An example of 

educational materials designed to address such issues is the Facing 

Forward Series, a three-part series published by NCI, designed to 

educate and empower cancer survivors as they face the challenges 

associated with life after cancer treatment. Other publications, 

including numerous books, such as Lance Armstrong’s It’s Not About 

36 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
the Bike (Armstrong & Jenkins, 2001), provide insight into the 

personal side of the experience of survivorship. 

Health care providers play an important role in the care of cancer 

survivors, not only by providing diagnostic and treatment services 

but also by referring survivors to services that address physical, 

psychosocial, and economic needs throughout the span of 

survivorship. In many cases, however, providers may be unaware of 

survivors’ specific needs and how they might play a role in facilitating 

access to services to meet these needs. Support and education 

program providers need to communicate with health care providers 

to ensure that survivors are receiving referrals to services designed to 

enhance quality of life throughout the stages of cancer survivorship 

and address their specific needs and issues in a timely manner. 

1. Develop strategies to educate the public that cancer is a chronic

disease that people can and do survive. 

Despite significant reductions in cancer-related mortality, myths 

and misinformation about a cancer diagnosis persist (e.g., “diagnosis 

of cancer means certain death” as in Section I.C.). Accurate, 

culturally appropriate information is needed to counteract these 

misconceptions and increase understanding and acceptance of issues 

affecting cancer survivors. Key strategies for addressing this need 

include the following: 

• Convene a Task Force to identify existing educational 

information, and encourage partnerships to avoid duplication 

of efforts in developing new educational materials. 

• Enhance a centralized information resource center, such as 

a clearinghouse (e.g., print, on-line), to provide access to 

consistent, scientifically valid, culturally appropriate health 

communication information. 

• Promote the centralized information resource through a 

variety of media, including public service announcements for 

television, print, and the Internet. 

• Promote the concept of survivorship as a chronic condition 

that people can live with and not necessarily die from. 

2. Educate policy- and decision-makers about the role and value

of long-term follow-up care, addressing quality-of-life issues and 

legal needs, and ensuring access to clinical trials and ancillary 

services for cancer survivors. 

Acknowledgment and understanding of the long-term effects of 

cancer can enable survivors, caregivers, and health care providers to 

anticipate and deal with these effects. Increased understanding may 

V. Communication, Education, and Training 37 
also enable enactment of appropriate policies to ensure that survivors 

receive needed follow-up care. Well-informed policy and decision 

makers can advocate for changes in and funding of services and 

additional research in these areas. Key strategies for addressing this 

need include the following: 

• Identify potential policy and decision makers and establish 

mechanisms to educate them on survivorship issues. 

• Catalogue and characterize existing policies in order to 

identify gaps in survivor needs to address. 

• Identify partnerships with those with an interest in national 

and/or state policies. 

• Develop and implement specific strategies to educate each 

identified policy and decision maker group (e.g., legislators; 

local, state, and national regulators; health service 

administrators; advocacy groups; community-based 

organizations; health-related industries; insurance industry; 

pharmaceutical industry). 

3. Empower survivors with advocacy skills. 

Cancer survivors are faced with extremely difficult medical decisions 

at each stage of living with, through, and beyond cancer. Because 

medical decisions are such important component to ongoing 

improvement of quality of life among cancer survivors, the topic of 

“informed decision making” is presented in detail in the crosscutting section (Section III). 

4. Develop, test, maintain, and promote patient navigation

systems for people living with cancer. 

Patient navigation systems attempt to provide a mechanism to 

enhance the delivery of optimum care. This need is also summarized 

in Section III. 

5. Teach survivors how to access and evaluate 

available information. 

Cancer-related information is available from a multitude of 

organizations. However, this information may be inconsistent in the 

message content, culturally inappropriate, and/or difficult to access. 

A system to evaluate the validity of available cancer survivorship 

information is needed that can be linked to other, reliable 

information sources. Key strategies for addressing this need include 

the following: 

• Develop a standardized system to assess the adequacy of 

available survivorship information. 

38 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
• Develop resources to assist survivors in assessing survivorship 

information in a variety of formats (e.g., CD-ROM, 

pamphlets, Web pages, video). 

• Disseminate the above-mentioned resources through a 

variety of distribution points (e.g., medical offices, cultural 

or faith-based community organizations, support groups, 

national and local associations) and through a centralized 

database that can be linked to other sources of 

reliable information. 

• Provide technical assistance to groups whose materials do not 

meet the established evaluation criteria (i.e., do not maintain 

scientific validity) and enhance the quality of 

materials/products. 

6. Educate health care providers about cancer survivorship 

issues from diagnosis through long-term treatment effects and 

end-of-life care. 

Health care providers include all clinical, community, and public 

health professionals who potentially affect the health and well-being 

of people living with cancer. Although the specific message will vary 

for different types of providers, all should understand the impact a 

cancer diagnosis has on quality of life, the common myths and 

misperceptions about cancer and accurate information to dispel 

them, prevention strategies for secondary illnesses, appropriate 

management strategies, referral sources (i.e., where and when to 

refer), sources of support, and long-term treatment effects and endof-life care. Key strategies for addressing this need among providers 

include the following: 

• Establish educational forums on survivorship in partnership 

with professional organizations. 

• Educate health professionals and para-professionals in local 

medical communities through grand rounds, tumor board 

meetings, and other venues. 

• Partner with advocacy groups to visit community practices 

and observe/educate local providers about implications of 

and opportunities for improving quality of life. 

• Incorporate survivorship curricula into professional/paraprofessional training programs. 

• Develop continuing education training in survivorship to 

deliver to a variety of health care professionals (e.g., 

internists, nurses). 

V. Communication, Education, and Training 39 
Section V Summary:

Communication, Education, and Training

1. Develop strategies to educate the public that cancer is a chronic disease 

people can and do survive. 

2. Educate policy- and decision-makers about the role and value of 

long-term follow-up care, addressing quality-of-life issues and legal 

needs, and ensuring access to clinical trials and ancillary services 

for cancer survivors. 

3. Empower survivors with advocacy skills. 

4. Develop, test, maintain, and promote patient navigation systems for 

people living with cancer. 

5. Teach survivors how to access and evaluate available information. 

6. Educate health care providers about cancer survivorship issues from 

diagnosis through long-term treatment effects and end-of-life care. 

40 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
41
Mason, Wilms’ Tumor Survivor 

“Survivorship has shown me that cancer was 

really hard, but it was something I just had to 

go through.” 
VI. PROGRAMS, POLICIES, AND INFRASTRUCTURE 

A. Goals

This section describes prioritized needs and recommended strategies 

for programs, policies, and infrastructure at national, state, and 

community levels to advance cancer survivorship within public health 

settings. Goals include the following: 

• Develop a continuum of health programs and services that 

addresses both cancer treatment needs and primary, 

secondary, and tertiary prevention of additional health 

concerns for cancer survivors. 

• Enhance supportive policies that establish an environment to 

comprehensively address cancer survivorship issues. 

• Establish a system of services that enhances and creates 

partnerships among public and private health agencies. 

Programs, policies, and infrastructure are means for effecting 

change and are defined here and in Section II.C. as follows: 

Programs 

Programs are the actual implementation of specific interventions at 

the national, state, and community levels to address a public health 

problem (NAAP, 1999). Medical, psychosocial, legal, and financial 

issues could be addressed by programs that are comprehensive in 

scope and encompass care for each stage of cancer survivorship. 

Policies 

Policies include legislation, regulations, ordinances, guidelines, 

and norms that establish an environment conducive to program 

implementation and other changes specific to survivorship (NAAP, 

1999). These policies may be implemented at the national, state, 

organizational, and community levels in an effort to advance 

public health. 

Infrastructure 

Infrastructure is comprised of the basic resources and facilities in 

place to address survivorship and includes components of the health 

care and public health systems, such as state and local health 

departments, and the services and programs they provide. Effective 

infrastructure is required to operate and manage effective programs. 

As our health care system continues to evolve, delivery of quality care 

becomes more complex. Relationships among the public and private 

sectors, individual practitioners and managed care organizations, 

VI. Programs, Policies, and Infrastructure 43 
and voluntary health organizations directly influence access to care 

and provision of clinical and community services (NAAP, 1999). 

Prioritized needs for these components and suggested strategies 

for addressing them are presented in the following section. 

B. Prioritized Needs and Suggested Strategies 

It is through programs, policies, and infrastructure that public 

health can effect change in terms of the delivery of services for cancer 

survivors. Survivorship initiatives could be embedded in all services 

related to the continuum of care, including cancer prevention, 

screening and early detection, diagnosis and treatment, 

rehabilitation, and palliative and end-of-life care. These programs 

may be offered through a variety of sources, such as comprehensive 

cancer centers, advocacy organizations, or community-based 

organizations (Tesauro et al., 2002). Policies may be implemented 

at the national, state, and community levels to create an environment 

supportive of advancing cancer survivorship in the realm of public 

health. An example of an existing policy that is relevant to cancer 

survivorship is the Cancer Survivors’ Bill of Rights© (Spingarn, 

1999). The Bill was written by a cancer survivor for cancer survivors 

and denotes the shift in a survivor’s role from passive patienthood to 

proactivity (Leigh & Stovall, 1998). This document serves as an 

example of how an advocacy organization can advance policy in the 

realm of cancer survivorship. 

Exploring ways that public health policy can be developed to 

address the needs of cancer survivors is an important next step in 

action planning. To ensure that cancer survivorship innovations 

reach the people who need them most, states, territories, and tribal 

organizations need to build and maintain appropriate infrastructure. 

Sufficient scientific and programmatic infrastructure will enable 

health agencies to build the necessary coalitions and partnerships to 

translate research into public health programs, practices, and services 

for cancer survivors. CCC Programs (see Section I.D.) hold promise 

as the foundation for developing this infrastructure specific to 

cancer prevention and control. 

1. Develop, test, maintain, and promote patient navigation or

case management programs that facilitate optimum care. 

Patient navigation is a tool that can be used to ensure that survivors 

understand their care and their process of care and enhance the 

delivery of optimum care. In these programs, health professionals or 

highly trained patient liaison representatives coordinate health care 

44 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
for patients and assist them in navigating the health care system. This 

need is discussed in detail in Section III. 

2. Develop and disseminate public education programs that

empower survivors to make informed decisions. 

No one medical answer is right for everyone. Cancer survivors are 

faced with extremely difficult medical decisions at each stage of 

living with, through, and beyond cancer. This need is presented in 

Section III. 

3. Identify and implement programs proven to be effective (i.e.,

best practices). 

In the public health field, “best practices” refer to programs that 

have been identified as effective through a standardized process using 

commonly agreed-upon criteria for rating their success (USDHHS, 

2003). These programs have been shown to be successful through 

measurable outcomes. Efforts are under way within public health to 

systematically identify these programs and disseminate them to a 

broader audience for replication (USDHHS, 2003). Within the 

realm of cancer survivorship, there is much to learn about the best 

practices of programs that address needs for people living with, 

through, and beyond cancer. Specific strategies to achieve the goal of 

identifying and disseminating best practices for cancer survivorship 

include the following: 

• Establish quantifiable criteria to determine which 

programs are among the best practices for addressing cancer 

survivor needs. 

• Identify best practices based on agreed-upon criteria and 

rank order programs accordingly. 

• Identify gaps in survivorship research and provide funding to 

test new models and approaches. 

• Establish a “clearinghouse” of information (e.g., Cancer 

Control PLANET, CIS) using existing mechanisms for 

those programs identified as best practices. 

• Promote this “clearinghouse” and otherwise disseminate 

information to programs, survivors, health care providers, 

and others. Use this clearinghouse to connect survivors to 

resources specific to their needs. 

4. Implement evidence-based cancer plans that include all stages

of cancer survivorship. 

Through the CDC’s funding of CCC Programs (see Section I.D.), 

states are developing cancer control plans to comprehensively address 

VI. Programs, Policies, and Infrastructure 45 
this disease. States launched these Programs in collaboration with 

private and not-for-profit entities to assure appropriate expertise 

and to maximize the impact of limited resources on cancer control 

efforts. Public health agencies are using this support to establish 

broad-based cancer coalitions, assess the burden of cancer, 

determine priorities for cancer prevention and control, and develop 

and implement comprehensive plans. Through these and other 

activities, work is under way to identify those efforts that are 

grounded in sound scientific knowledge, or are “evidence based.” 

Evidence-based efforts in public health rely on a rigorous process 

where strategies to address a health issue are assessed to identify those 

with the highest quality scientific evidence of successful outcomes. 

Too often, rigorous evidence is lacking upon which to recommend 

strategies and interventions to address important goals and 

objectives. Most states have included issues related to cancer 

survivorship in their plans but have not necessarily included efforts 

that are evidence-based or that address needs for each stage of living 

with, through, and beyond cancer. There is a need to identify 

evidence-based initiatives that can be systematically incorporated into 

state cancer control efforts. The following strategies provide specific 

guidance to meet this need: 

• Identify key leaders and experts in cancer survivorship in 

every state (especially survivors) to create a network of 

individuals to ensure that survivorship issues are being 

addressed through each cancer plan. 

• Educate those involved in planning and developing state 

cancer plans on the importance of and issues related to 

cancer survivorship. 

• Evaluate survivorship programs and publish and 

disseminate results.

• Link CCC Program and other funding so that cancer plans 

are required to comprehensively address survivorship. 

5. Establish clinical practice guidelines for each stage of cancer

survivorship. 

Clinical practice guidelines are defined by the IOM as “...systematically 

developed statements to assist practitioner and patient decisions for 

specific clinical circumstances” (IOM, 1992). These guidelines 

summarize the collective research on outcomes pertaining to one 

disease. This need is presented in detail in Section III. 

46 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
6. Promote policy changes that support addressing cancer as a 

long-term, chronic disease. 

Historically, cancer was a disease that people often did not survive 

(see Section I.A.). Health care focused on making the patient 

comfortable during the last stages of cancer progression; few 

treatment options were available. Now, many more treatment 

options are available, and people survive with cancer for many years. 

The medical model tends to focus more on cancer survivors during 

their “acute” stages of cancer and less on the “extended” and 

“permanent” stages (Mullan, 1985) and not on post-treatment or 

long-term issues. Policies need to effectively address cancer 

survivorship for all those living with, through, and beyond cancer. 

Strategies for effecting this change include the following: 

• Develop and disseminate public education materials to 

educate policy makers, health professionals, and survivors on 

the stages of cancer survivorship. 

• Encourage insurance carriers and health plan administrators 

to provide for post-treatment and long-term follow-up 

services for cancer survivors. 

• Address the terminology used in various settings, such as in 

formal policy and the media, at health care organizations and 

among providers and insurance agencies, to modify policies 

to better reflect the stages of cancer survivorship. 

7. Develop infrastructure to obtain quality data on all cancer

management activities to support programmatic action. 

A great deal is unknown about cancer survivorship, particularly 

in terms of the long-term effects of cancer diagnosis and treatment. 

For that reason, much work needs to be done to create 

comprehensive databases to collect information on survivors and 

conduct research on issues related to survivorship. This need is 

discussed in detail in Section III. 

VI. Programs, Policies, and Infrastructure 47 
Section VI Summary:

Programs, Policies, and Infrastructure

1. Develop, test, maintain, and promote patient navigation or case 

management programs that facilitate optimum care. 

2. Develop and disseminate public education programs that empower 

survivors to make informed decisions. 

3. Identify and implement programs proven to be effective 

(i.e., best practices). 

4. Implement evidence-based cancer plans that include all stages of 

cancer survivorship. 

5. Establish clinical practice guidelines for each stage of cancer survivorship. 

6. Promote policy changes that support addressing cancer as a long-term, 

chronic disease. 

7. Develop infrastructure to obtain quality data on all cancer management 

activities to support programmatic action. 

48 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

Bart, Cancer Survivor 

“Survivorship has given me a more complete 

sense of the gift of life.” 
VII. ACCESS TO QUALITY CARE AND SERVICES 

A. Goals

This section describes prioritized needs and recommended strategies 

to address access to quality care and services for people living with, 

through, and beyond cancer. In relation to cancer survivorship, 

quality care and services include access to quality treatment, effective 

pain and symptom management, and quality end-of-life care and 

services. Progress in these key areas is necessary to assure quality 

service provision for those living with cancer. Goals in this area 

include the following: 

• Establish clinical care guidelines to ensure availability of 

high-quality care for all cancer survivors. 

• Provide access to high-quality care throughout every stage of 

cancer survivorship. 

• Educate survivors on available resources and strategies to 

enhance informed decision making. 

• Ensure coordinated care among all health care professionals 

involved in delivering services. 

For the purposes of cancer survivorship, access to quality 

treatment, effective pain and symptom management, and quality 

end-of-life care are defined here and in Section II.C. as follows: 

Access to Quality Treatment 

Cancer treatment is complex and differs for each individual based on 

his or her specific situation and needs. All cancer survivors should 

have timely access to the latest and most effective treatments available. 

This would include clinical trials, if appropriate. 

Pain and Symptom Management 

An important part of cancer treatment is the management of pain 

and other symptoms associated with both disease and treatment. The 

goal of pain and symptom management is to provide relief so that 

survivors can tolerate the diagnostic and therapeutic procedures 

needed to treat their cancer and live comfortably throughout each 

stage of living with, through, and beyond cancer. 

End-of-Life Care 

Issues facing survivors and their families during end-of-life are 

complex and serious. Appropriate end-of-life care affirms life and 

regards dying as a normal process, neither hastening nor postponing 

death. The goal of end-of-life care is to achieve the best possible 

VII. Access to Quality Care and Services 51 
quality of life for cancer survivors. Although many survivors live 

many years beyond their diagnosis, the needs and desires of those 

who are in the process of dying must be addressed. 

Prioritized needs and suggested strategies for addressing access to 

quality care and services are presented in the following section. 

B. Prioritized Needs and Suggested Strategies 

Quality cancer care means assuring that survivors have access to 

evidence-based and appropriate treatment and services delivered 

in a timely and technically competent manner, with good 

communication, shared decision making, and cultural sensitivity 

across the continuum of care and throughout the remainder of life. 

Accountability is an important aspect of quality care (IOM, 1999). 

Health care providers must be accountable for professional 

competence, legal and ethical conduct, and accessibility of services 

(Emanuel & Emanuel, 1996). 

Prioritized needs and suggested strategies to address access to 

quality care and services include the following: 

1. Develop, test, maintain, and promote a patient navigation

system for cancer survivors. 

Patient navigation is a tool that can be used to ensure that survivors 

understand their care and their process of care as well as to enhance 

the delivery of optimum care. This need is described in detail in 

Section III. 

2. Educate decision-makers about economic and insurance

barriers related to health care for cancer survivors. 

Survivorship advocates support the position that cancer survivors 

should have access to the latest and most effective treatments available 

and that access to these treatments should be based on the type of care 

needed and not on the cost of care. Unfortunately, there are many 

barriers to achieving this ideal of comprehensive access to quality care. 

The first step toward this ideal is to educate decision makers about the 

needs of cancer survivors and the financial barriers affecting cancer 

survivors’ access to quality care. Strategies to help assure that decision 

makers are adequately informed include the following: 

• Convene a meeting of health care providers, cancer 

survivorship experts, researchers, and programmatic staff 

with the goal of developing strategies to educate policy makers 

about the unmet needs for cancer treatment of uninsured 

and underinsured survivors. 

52 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
• Identify successful policy and legislative language as 

examples for state programs (and others), and identify key 

stakeholders (e.g., legislators, governors) needed to improve 

access to high quality treatment and other post-treatment 

follow-up services. 

• Survey and analyze the insured population to determine the 

impact the individual’s level of coverage has on timely access 

to care and receipt of follow-up care. 

• Develop educational opportunities for decision makers of 

insurance carriers and health plans regarding policies that 

promote access to quality cancer care. 

3. Establish and/or disseminate guidelines that support quality 

and timely service provision to cancer survivors. 

In their statement, “Principles of Quality Cancer Care,” the Cancer 

Leadership Council emphasized that all people with cancer need to 

have timely access to care that is based on the best available evidence 

(NCCS, 2003). A key strategy for meeting this need is to develop a 

process for establishing clinical care guidelines for each stage of 

cancer survivorship. This need is discussed in detail in Section III 

of this National Action Plan. 

4. Assess and enhance provision of palliative services to 

cancer survivors. 

The goal of palliative care is to achieve the best possible quality of life 

for survivors and their families by controlling pain and other 

symptoms and addressing psychological and spiritual needs 

throughout each stage of living with, through, and beyond cancer. 

Strategies to assess and enhance provision of palliative services to 

cancer survivors include the following: 

• Collect baseline quantitative and qualitative data to assess 

the current status and location of palliative service provision, 

and characterize the experiences of survivors, their 

caregivers, and providers in relation to palliative care. 

• Provide professional and public education to teach people 

about palliative care, how health care providers should 

administer such services, and how survivors and their 

caregivers can advocate for this care. 

• Establish regulatory policies for licensing and agency 

responsibility for palliative care oversight. 

VII. Access to Quality Care and Services 53 
• Provide training for medical personnel on the topic of 

substance abuse to help alleviate fears of misuse of pain 

medications and increase professional acceptance of 

prescribing pain control medications to cancer survivors. 

• Develop targeted therapies to manage cancer pain so that 

concerns about unintended consequences of pain medication 

administration can be avoided. 

5. Establish integrated multidisciplinary teams of health 

care providers. 

Cancer treatment is complex and differs for each individual based on 

his or her specific situation and needs. To assure that each cancer 

survivor receives appropriate and comprehensive treatment, these 

efforts should be planned, coordinated, and delivered by a 

multidisciplinary team of providers. Strategies to establish such 

multidisciplinary teams include the following: 

• Create centers of excellence (using pediatric cancer centers as 

a model) that provide comprehensive care to cancer survivors 

especially for rarer forms of cancer. 

• Formulate policies that will improve access to services 

provided to survivors from an appropriate provider 

of choice. 

• Promote and provide increased access to clinical trials and 

longitudinal follow-up through the centers of excellence. 

• Develop survivor-oriented Web sites to guide follow-up after 

completion of primary treatment. 

• Develop mechanisms (e.g., password-protected Web forum, 

telephone, mail) for survivors to have ongoing routine 

follow-up with their multidisciplinary team after primary 

treatment. Follow-up should be annual at a minimum. 

• Develop survivorship programs through appropriate partner 

organizations (e.g., the American College of Surgeons 

Commission on Cancer, NCCS) to provide professional 

education on cancer survivorship. 

• Ensure survivor access to symptom management/palliative 

care/supportive teams. 

• Review management plans from other chronic disease models 

(e.g., diabetes) and use these as a basis to develop integrated 

multidisciplinary management plans for cancer survivorship. 

• Ensure that integrated multidisciplinary management is 

available to survivors across the continuum of care. 

54 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Section VII Summary: Access to Quality 

Care and Services 

1. Develop, test, maintain, and promote a patient navigation system for 

cancer survivors. 

2. Educate decision-makers about economic and insurance barriers related 

to health care for cancer survivors. 

3. Establish and /or disseminate guidelines that support for quality and 

timely service provision to cancer survivors. 

4. Assess and enhance provision of palliative services to cancer survivors. 

5. Establish integrated multidisciplinary teams of health care providers. 

VII. Access to Quality Care and Services 55 
Octavio, Cancer Survivor 

“Survivorship means coming out of my cancer 

experience as a whole person and being able to 

make it an important and positive part of 

who I am.” 
VIII. IMPLEMENTATION 

A. Indicators 

In order to evaluate the extent to which the long-term goals of the 

National Action Plan are reached, establishing and monitoring 

measures to demonstrate progress toward obtaining those goals are 

critical. Developing indicators provides a benchmark to gauge success 

and identify movement toward cancer survivorship objectives. 

Important indicators to measure include those related to process, 

such as whether initiatives are being delivered as planned, and 

outcomes, such as if the survivor’s life is improving. Eventually, 

preliminary indicators can be made into measurable objectives as 

part of a comprehensive evaluation plan. Examples of some 

indicators that organizations or individuals could use for activities 

summarized in this Plan might include the following: 

Surveillance and Applied Research 

• Increase the number of cancer registries that are able to 

follow cancer survivors over time. 

• Create a standardized set of items for the collection and 

analysis of cancer survivorship data, including quality of life, 

at the national level. 

• Assess the feasibility of obtaining population-based 

cancer survivorship data using cancer registries and other 

data sources. 

• Develop research initiatives to quantify health concerns of 

cancer survivors. 

• Increase the number of collaborative efforts between 

academic researchers and state health departments related to 

cancer survivors. 

• Determine the extent to which these collaborative efforts 

result in useful and applicable findings. 

Communication, Education, and Training 

• Increase health care professionals’ and the general public’s 

knowledge of the burden of cancer survivorship and issues 

faced by survivors. 

• Increase the amount of media time devoted to cancer 

survivorship compared with other health issues. 

• Increase the number of trainings on cancer survivorship for 

health professionals and para-professionals. 

VIII. Implementation 57 
Programs, Policies, and Infrastructure 

• Increase programmatic resources for cancer survivorship over 

a period of 5 years, and assess trends in funding levels across 

private and public sector programs. 

• Increase the number of state cancer plans and CCC 

Programs with cancer survivorship components. 

• Track the number of policies related to cancer survivorship at 

the local, state, and national level. 

• Increase the number of health insurance carriers providing 

for post-treatment and long-term follow-up services, 

including specialty care, for cancer survivors. 

Access to Quality Care and Services 

• Increase the number of survivors receiving pain control and 

other support services throughout each stage of cancer 

survivorship, from diagnosis through end-of-life. 

• Increase research to evaluate the effectiveness of patient 

navigation systems on improving cancer survivors’ quality 

of life and disseminate those results to the public 

health community. 

• Continue to improve the 5-year survival rates for all cancers. 

B. Conclusion

With one-third of Americans estimated to be diagnosed with cancer 

in their lifetime, the individual and societal burden of cancer is 

clear. A National Action Plan for Cancer Survivorship: Advancing 

Public Health Strategies describes a variety of proven public health 

interventions as well as new strategies aimed to improve the quality of 

life for cancer survivors, their families, friends, and caregivers. By 

using the National Action Plan as a guide as well as a call to action, 

the public health community can initiate and sustain changes that 

will lead to improved quality of life among the millions of people 

living with, through, and beyond cancer. The ambitious approaches 

outlined in this National Action Plan will be most feasible if public 

health organizations and individuals pursue the strategies that are 

most applicable to their mission. Next steps for implementing this 

National Action Plan will be for organizations to prioritize the needs 

they can address and effectively implement initiatives so that progress 

over the next 5 years in advancing cancer survivorship within the 

realm of public health can be realized. 

58 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 

Liz, Cancer Survivor 

“Survivorship is life.”
EXPLANATIONS OF PHRASES AND TERMS 

Note: Listed below are explanations of phrases and terms that appear 

in the National Action Plan as bold text. 

Access to quality care and services 

Quality cancer care means ensuring that survivors have access to 

evidence-based (or proven to be successful) appropriate treatment. 

Services should be delivered in a timely and technically competent 

manner, utilizing good communication, shared decision making 

between the cancer survivor and health care providers, and in a 

cultural sensitivity manner across the continuum of care and 

throughout the remainder of life (IOM, 1999). 

Access to quality treatment 

Cancer treatment is complex and differs for each individual based on 

his or her specific situation and needs. Cancer survivors should have 

timely access to the latest and most effective treatments available. 

This would include clinical trials, if appropriate (Cancer Leadership 

Council, 2003). 

Acute stage 

The “acute” stage of survival begins with diagnosis and spans the time 

of further diagnostic and treatment efforts (Mullan, 1985). 

Ancillary services 

Professional services provided by a hospital or other inpatient health 

program. These may include x-ray, drug, laboratory, or other 

services (CMS, 2003). 

Applied research 

Use of surveillance data to better understand the extent to which 

interventions effectively address survivor needs and provide findings 

that can guide further development of initiatives. 

Best practices 

Programs that have been identified as effective through a 

standardized process using commonly agreed-upon criteria for 

rating their success (USDHHS, 2003). 

Cancer 

A term for diseases in which abnormal cells divide without control 

(NCI, 2003c). 

61 
Cancer Control PLANET 

Plan, Link, Act, Network with Evidence-based Tools: a Web portal 

resource with links to resources for comprehensive cancer control 

(Cancer http://cancercontrolplanet.cancer.gov). 

Cancer survivors 

People who have been diagnosed with cancer and the people in their 

lives who are affected by their diagnosis, including family members, 

friends, and caregivers (LAF, 2003). 

Case management 

A process used by a doctor, nurse, or other health professional to 

manage a patient’s health care. Case managers make sure that people 

receive needed services and track the use of facilities and resources 

(CMS, 2003). 

Chronic disease 

A disease that has one or more of the following characteristics: is 

permanent; leaves residual disability; is caused by nonreversible 

pathological alteration; requires special training of the patient for 

rehabilitation; or may be expected to require a long period of 

supervision, observation, or care (DEHA, 2003). 

Clinical practice guidelines 

Systematically developed statements designed to assist practitioner and 

patient decisions for specific clinical circumstances (IOM, 1992). 

Clinical trials 

Research studies, where patients help scientists find the best way to 

prevent, detect, diagnose, or treat diseases (NCI, 2003c). 

Communication with the public 

Communication with the general public and policy or decision 

makers about the issues surrounding cancer survivorship, which aims 

to create a societal understanding and acceptance of the growing 

population of cancer survivors and the issues they face. 

Comprehensive cancer control 

An integrated and coordinated approach to reducing cancer 

incidence, morbidity, and mortality through prevention (primary 

prevention), early detection (secondary prevention), treatment, 

rehabilitation, and palliation (CDC, 2003b). 

62 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
End-of-life care 

Affirms life and regards dying as a normal process, neither hastening 

nor postponing death while providing relief from distress and 

integrating psychological and spiritual aspects of patient care. The 

goal of end-of-life care is to achieve the best possible quality of life 

for cancer survivors by controlling pain and other symptoms and 

addressing psychological and spiritual needs (Hospice, 2003). 

Extended stage 

The “extended” stage of survival begins when the patient goes into 

remission or has completed treatment (Mullan, 1985). 

Guide to Community Preventive Services 

The Community Guide summarizes what is known about the 

effectiveness, economic efficiency, and feasibility of interventions to 

promote community health and prevent disease. The Task Force on 

Community Preventive Services makes recommendations for the use 

of various interventions based on the evidence gathered in the 

rigorous and systematic scientific reviews of published studies 

conducted by the review teams of the Community Guide. Findings 

from the reviews are published in peer-reviewed journals and also 

made available on the internet at www.thecommunityguide.org. 

Health care provider 

A person who is trained and licensed to give health care. Also, a place 

licensed to give health care. Doctors, nurses, hospitals, skilled nursing 

facilities, some assisted living facilities, and certain kinds of home 

health agencies are examples of health care providers (CMS, 2003). 

Healthy People 2010 

Healthy People 2010 is a set of health objectives for the nation to 

achieve over the first decade of the new century. It can be used by 

many different people, states, communities, professional 

organizations, and others to help them develop programs to improve 

health (USDHHS, 2003). 

Incidence 

The number of new cases of a disease diagnosed each year (NCI, 2003c). 

Indicator 

A substitute measure for a concept that is not directly observable or 

measurable (e.g., prejudice, substance abuse). Also defined as a 

variable that relates directly to some part of a program goal or 

objective. Positive change on an indicator is presumed to indicate 

progress in accomplishing the larger program objective (PSAP, 2003). 

63 
Infrastructure 

The systems, competencies, relationships, data and information 

systems, skilled workforce, effective public health organizations, 

resources, and research that enable performance of the essential 

public health services in every community (USDHHS, 2000). 

In-kind 

Contributions or assistance in a form other than money. 

Equipment, materials, or services of recognized value that are 

offered in lieu of cash (UCLA, 2003). 

Living “beyond” cancer 

Refers to post-treatment and long-term survivorship (LAF, 2003). 

Living “through” cancer 

Refers to the extended stage following treatment (LAF, 2003). 

Living “with” cancer 

Refers to the experience of receiving a cancer diagnosis and any 

treatment that may follow (LAF, 2003). 

Lymphedema 

A condition in which excess fluid collects in tissue and causes 

swelling. It may occur in the arm or leg after lymph vessels or lymph 

nodes in the underarm or groin are removed or treated with 

radiation (NCI, 2003c). 

Metastasis 

The spread of cancer from one part of the body to another. A tumor 

formed from cells that have spread is called a secondary tumor, a 

metastatic tumor, or a metastasis. The plural form of metastasis is 

metastases. Metastasized means to spread by metastasis (NCI, 2003c). 

Morbidity 

A disease or the incidence of disease within a population. Morbidity 

also refers to adverse effects caused by a treatment (NCI, 2004). 

Pain and symptom management 

Pain and symptom management refers to the provision of pain relief 

so that patients can tolerate the diagnostic and therapeutic 

procedures needed to treat their cancer (Foley, 1999). 

64 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Palliative care 

Care given to improve the quality of life of patients who have a 

serious or life-threatening disease. Also called comfort care, 

supportive care, and symptom management (NCI, 2003c). 

Patient navigation 

A tool that can be used to ensure that survivors understand their care 

and their process of care and enhance optimum care. In these 

programs, health professionals and others coordinate health care for 

patients and assist them in navigating the health care system 

(http://deainfo.nci.nih.gov/advisory/pcp/video-summary.htm). 

Permanent stage 

The “permanent” stage is defined as a time when the “activity of the 

disease or likelihood of its return is sufficiently small that the cancer 

can now be considered permanently arrested” (Mullan, 1985, p. 272). 

Policies 

Policies include legislation, regulations, ordinances, guidelines, and 

norms that establish an environment conducive to program 

implementation (NAAP, 1999). 

Preventive interventions 

Programs, activities, and services that identify areas of behavior that 

can be changed to reduce cancer recurrence or increase control and 

promote healthy lifestyles. 

Primary prevention 

Measures designed to combat risk factors for illness before an illness 

ever has a chance to develop (McGraw-Hill, 2003). 

Programs 

Programs are the actual implementation of specific interventions at 

the national, state, and community levels to address a public health 

problem (NAAP, 1999). 

Provider training 

Health care provider training aims to assure that providers are aware 

of the spectrum of services available to enhance quality of life 

throughout survivorship so that they may refer survivors to these 

services as appropriate. 

Public health 

Public health practice is the science and art of preventing disease, 

prolonging life, and promoting health and well-being (Winslow, 

1923). The Institute of Medicine (IOM) has defined the mission of 

65 
public health as assuring conditions in which people can be healthy 

(1988). Public health’s mission is achieved through the application 

of health promotion and disease prevention technologies and 

interventions designed to improve and enhance quality of life 

(PHFSC, 1994). 

Qualitative data 

A record of thoughts, observations, opinions, or words 

gathered/collected from open-ended questions to which the answers 

are not limited by a set of choices or a scale (PSAP, 2003). 

Quantitative data 

Numeric information that includes such items as type of treatment, 

amount of time, or a rating of an opinion on a scale from 1 to 5. 

Quantitative data are collected through closed-ended questions, 

where users are given a limited set of possible answers to a question 

(PSAP, 2003). 

Risk 

The probability that an event will occur (e.g., that an individual will 

become ill or die within a stated period of time or age) (Last, 1995). 

Risk factor 

Something that may increase the chance of developing a disease. 

Some examples of risk factors for cancer include age, a family history 

of certain cancers, use of tobacco products, certain eating habits, 

obesity, exposure to radiation or other cancer-causing agents, and 

certain genetic changes (NCI, 2003c). 

Stakeholders 

A stakeholder is someone who has a stake in an organization or a 

program. Stakeholders either affect the organization/program or are 

affected by it (PSAP, 2003). 

Surveillance 

Primary surveillance measures include cancer registries and several 

national surveys. Cancer registries implement and maintain 

information systems designed to collect and manage data on cases of 

cancer incidence. National surveys, such as the National Health 

Interview Survey (NHIS), provide information on health attitudes, 

beliefs, and behaviors that could be used to help understand issues 

related to cancer survivorship (CDC, 2003b). 

Survivor education 

The education of cancer survivors includes provision of information 

tailored to the particular stage of survivorship (Mullan, 1984). 

66 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
REFERENCES 

American Cancer Society (ACS). Cancer Facts & Figures 2004. Atlanta, GA: 

American Cancer Society; 2004. 

Armstrong L, Jenkins S. It’s Not About the Bike: My Journey Back to Life. Berkeley, CA: 

Berkley Publishing Group; 2001. 

Aziz N. Cancer survivorship research: challenge and opportunity. The Journal of 

Nutrition. 2002;132(11):3494S-3503S. 

Aziz NM, Rowland JH. Trends and advances in cancer survivorship research: 

challenge and opportunity. Seminars in Radiation Oncology. 2003;13:248-266. 

Cancer Leadership Council. CLC Mission [on-line]. Available at: 

http://www.cancerleadership.org/about_clc/mission.html; Accessed 

November 17, 2003. 

Centers for Disease Control and Prevention (CDC). Framework for program 

evaluation in public health. Morbidity and Mortality Weekly Report. 

1999;48(RR11):1-40. 

Centers for Disease Control and Prevention (CDC). National Program of Cancer 

Registries—State/Territory Profiles [on-line]. Atlanta, GA: U.S. Department of 

Health and Human Services, Centers for Disease Control and Prevention. 

Available at: http://www.cdc.gov/cancer/dbdata.htm; 2001. 

Centers for Disease Control and Prevention (CDC). Comprehensive Cancer Control 

Fact Sheet [on-line]. Atlanta, GA: U.S. Department of Health and Human 

Services, Centers for Disease Control and Prevention. Available at: 

http://www.cdc.gov/ cancer/ncccp/about.htm; 2002. 

Centers for Disease Control and Prevention (CDC). Cancer Prevention and Control: 

About the Program [on-line]. Atlanta, GA: U.S. Department of Health and 

Human Services, Centers for Disease Control and Prevention. Available at: 

http://www.cdc.gov/ cancer/dcpc.htm; 2003a. 

Centers for Disease Control and Prevention. Glossary [on-line]. Available at: 

http://www.cdc.gov/tobacco/evaluation_manual/glossary.html; 2003b. 

Centers for Medicare & Medicaid Services. Glossary [on-line]. Available at: 

http://www.cms.hhs.gov/glossary/default.asp; Accessed November 17, 2003. 

Delaware Health Care Association (DEHA). Glossary of Health Care Terms [online]. Available at: www.deha.org/Glossary/GlossaryC.htm; Accessed 

November 17, 2003. 

Emanuel EJ, Emanuel LL. What is accountability in health care? Annals of 

Internal Medicine. 1996;124(2):229-239. 

Foley KM. Advances in cancer pain. Archives of Neurology. 1999;56:413-417. 

Hoffman B. Employment discrimination: another hurdle for cancer survivors. 

Cancer Investigation. 1991;9:589-595. 

Hospice. What is Hospice? [on-line]. Available at: 

http://www.hospicefoundation.org/what_is/; Accessed November 17, 2003. 

Institute of Medicine (IOM), Committee for the Study of the Future of Public 

Health, Division of Health Care Services. The Future of Public Health. 

Washington, DC: National Academy Press; 1988. 

67 
Institute of Medicine (IOM). Guidelines for Clinical Practice: From Development to Use. 

Field MJ, Lohr KN, eds. Washington, DC: National Academy Press. 

Available at: http://www.nap.edu/openbook/0309045894/html/R1.html; 

1992. 

Institute of Medicine (IOM). Approaching Death: Improving Care at the End of Life. Field 

MJ, Cassel CK, eds. Washington, DC: National Academy Press; 1997. 

Institute of Medicine (IOM) and Commission on Life Sciences (CLS). Ensuring 

Quality Cancer Care. Hewitt M, Simone JV, eds. Washington, DC: National 

Academy Press; 1999. 

Institute of Medicine (IOM). Childhood Cancer Survivorship: Improving Care and Quality 

of Life. Washington, DC: National Academy Press; 2003. 

Lance Armstrong Foundation. LAF [on-line]. Available at: 

http://www.laf.org/; Accessed November 17, 2003. 

Leigh SA, Stovall EL. Cancer survivorship quality of life. In: King CR, Hinds 

PS, eds. Quality of Life from Nursing and Patient Perspectives: Theory, Research. Sudbury, 

MA: Jones and Bartlett Publishers; 1998:287-300. 

Leigh SA, Clark EJ. Psychosocial aspects of cancer survivorship. In: Berger A, 

Portenoy RK, Weissman DE, eds. Principles and Practice of Supportive Oncology. 

Philadelphia, PA: Lippincott-Raven; 1998:909-917. 

Leigh SA. Defining our destiny. In: Hoffman B, ed. A Cancer Survivor’s Almanac: 

Charting the Journey. Minneapolis, MN: Chronimed Publishing; 1996:261-271. 

McGraw-Hill. Health Psychology Glossary [on-line]. Available at: highered.mcgrawhill.com/sites/0072412976/student_view0/chapter3/glossary.html; Accessed 

November 17, 2003. 

Mullan F. Re-entry: the educational needs of the cancer survivor. Health 

Education Quarterly. 1984;10(Spec Suppl):88-94. 

Mullan F. Seasons of survival: reflections of a physician with cancer. New England 

Journal of Medicine. 1985;313:270-273. 

Mulley AG. Improving the quality of decision making. Journal of Clinical Outcomes 

Management. 1995;2:9-10. 

National Arthritis Action Plan: A Public Health Strategy (NAAP). Arthritis Foundation, 

Association of State and Territorial Health Officials, & CDC. Available at: 

http://www.cdc.gov/nccdphp/pdf/naap.pdf;1999. 

National Cancer Institute (NCI). Young People with Cancer: A Handbook for Parents. 

Publication No. 01-2378; 2001. 

National Cancer Institute (NCI). Facing Forward Series: Life after Cancer Treatment. 

Publication No. 02-2424; 2002. 

National Cancer Institute (NCI). Cancer Control and Population Sciences: Research 

Findings [on-line]. Available at: 

http://dccps.nci.nih.gov/ocs/prevalence/index.html; 2003a. 

National Cancer Institute (NCI). Cancer.gov—What you need to know about cancer—an 

overview [on-line]. Available at: http://www.cancer.gov/cancerinfo/wyntk/ 

overview; 2003b. 

National Cancer Institute (NCI). Glossary [on-line]. Available at: 

http://oesi.nci.nih.gov/aboutbc/glossary.html; 2003c. 

68 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
National Cancer Institute (NCI). Cancer.gov-Dictionary [on-line]. Available at: 

http://www.nci.nih.gov/dictionary;2004. 

National Coalition for Cancer Survivorship (NCCS). Introduction to Advocacy 

[on-line]. Available at: http://www.cansearch.org/policy; Accessed 

September 17, 2003. 

National Institutes of Health (NIH). NIH: About: NIH Almanac: Organization: National 

Cancer Institute [on-line]. Available at: http://www.nih.gov/about/almanac/ 

organization/NCI.htm; 2003. 

Partners for Substance Abuse Prevention (PSAP). Glossary of Terms [on-line]. 

Available at: http://preventionpartners.samhsa.gov/resources_glossary_ 

p2.asp; Accessed November 17, 2003. 

Public Health Functions Steering Committee (PHFSC). What is Public Health? 

[on-line]. Available at: http://www.asph.org/document.cfm?page=300; 

1994. Accessed April 22, 2003. 

Spingarn ND. Cancer Survivor’s Bill of Rights. Silver Spring, MD: National 

Coalition for Cancer Survivorship; 1999. 

Task Force on Community Preventive Services (TFCPS). Community Guide—Topic 

[on-line]. Available at: http://www.thecommunityguide.org/overview/ 

default.htm; Accessed November 17, 2003. 

Tesauro GM, Rowland JH, Lustig C. Survivorship resources for posttreatment cancer survivors. Cancer Practice. 2002;10(6):277-283. 

Truman BI, Smith-Akin CK, Hinman AR, et al. Developing the Guide to 

Community Preventive Services—overview and rationale. American Journal of 

Preventive Medicine. 2000;18(1S):18-26. 

University of California, Los Angeles (UCLA). UCLA Sponsored Research Glossary 

[on-line]. Available at: www.research.ucla.edu/sr2/gloss.htm; Accessed 

November 17, 2003. 

U.S. Department of Health and Human Services (USDHHS). Healthy People 

2010: Understanding and Improving Health. 2nd ed. Washington, DC: U.S. 

Government Printing Office; November 2000. 

U.S. Department of Health and Human Services (USDHHS). Best Practice 

Initiative [on-line]. Available at: http://phs.os.dhhs.gov/ophs/BestPractices/ 

default.htm; 2003. 

U.S. Department of Health and Human Services (USDHHS). What is Healthy 

People? [on-line]. Available at: http://www.healthypeople.gov/About/ 

whatis.htm; Accessed November 17, 2003. 

Winslow CEA. The Evolution and Significance of the Modern Public Health Campaign. New 

Haven: Yale University Press; 1923. 

69 
APPENDIX A: PARTICIPATING PARTNERS AND REVIEWERS 

Carla S. Alexander 

National Hospice & Palliative Care Organization 

1700 Diagonal Road, Suite 625

Alexandria, VA 22314

Phone: (410) 328-7129

Fax: (410) 328-4430

E-mail: calexand@medicine.umaryland.edu

Noreen Aziz 

National Cancer Institute

6130 Executive Plaza North

Rockville, MD 20852

Phone: (301) 496-0598

Fax: (301) 594-5070

E-mail: na45f@nih.gov

Mark S. Baptiste 

New York State Department of Health

Rm 515 Corning Tower

Albany, NY 12237-0675

Phone: (518) 474-0512

Fax: (518) 473-2853

E-mail: msb02@health.state.ny.us

Catherine Bartlett 

Lance Armstrong Foundation 

P.O. Box 161150

Austin, TX 78716

Phone: (512) 236-8820, ext. 122

Fax: (512) 236-8482

E-mail: catherine@laf.org

Carol Moody Becker 

U.S. Conference of Mayors

1620 I Street, NW, 4th Floor

Washington, DC 20006

Phone: (202) 328-3340

Fax: (202) 328-3361

E-mail: becker@hers.com

Nora Beidler 

American Society of Clinical Oncology

1900 Duke Street, Suite 200

Alexandria, VA 22314

Phone: (703) 797-1917

Fax: (703) 684-8618

E-mail: beidlern@asco.org

Kim Belloni 

Centers for Disease Control and Prevention 

2858 Woodcock Boulevard

Atlanta, GA 30341

Phone: (770) 488-3011

Fax: (770) 488-4760

E-mail: ksa1@cdc.gov

Fayruz Benyousef 

1020 Balanced Rock Place

Rock Round, TX 78681

Phone: (512) 476-9051, ext. 114

Fax: (512) 472-3073

E-mail: fayruz@balletaustin.org

Jennifer A. Biggy 

Congressman Roger Wicker’s Office

2455 Rayburn House Office Building

Washington, DC 20515

Phone: (202) 225-4306

Fax: (202) 225-3549

E-mail: jennifer.biggy@mail.house.gov

Edward Billings 

American Cancer Society

901 E Street, NW, Suite 500

Washington, DC 20004

Phone: (202) 661-5720

Fax: (202) 661-5750

E-mail: ted.billings@cancer.org

Bruce L. Black 

American Cancer Society

1599 Clifton Road, NE

Atlanta, GA 30329

Phone: (404) 329-7716

Fax: (404) 325-2548

E-mail: bblack@cancer.org

Donald K. Blackman 

Centers for Disease Control and Prevention 

4770 Buford Highway, NE, MS K55

Atlanta, GA 30341

Phone: (770) 488-3023

Fax: (770) 488-4639

E-mail: dblackman@cdc.gov

A-1 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Dianah C. Bradshaw 

North Carolina Division of Health & Human Services

1915 Mail Service Center

Raleigh, NC 27699-1915

Phone: (919) 715-0119

Fax: (919) 715-3153

E-mail: Dianah.Bradshaw@ncmail.net

Jubilee Brown 

University of Texas, M.D. Anderson Cancer Center

1515 Holcombe Blvd., Box 440

Houston, TX 77030

Phone: (713) 792-9599

Fax: (713) 792-7586

E-mail: jurobinso@mdanderson.org

Joanna Bull 

Gilda’s Club Worldwide 

P.O. Box 297

Rensselaerville, NY 12147

Phone: (518) 797-5255

E-mail: Joanna_bull@yahoo.com

Rita M. Butterfield 

Dana-Farber Cancer Institute

44 Binney Street

Boston, MA 02115

Phone: (617) 632-2182

Fax: (617) 632-4858

E-mail: rita_butterfield@dfci.harvard.edu

Molly F. Cade 

Ovarian Cancer National Alliance

6444 10th Street, SE

Prior Lake, MN 55372

Phone: (952) 890-8775

E-mail: mfcade@integraonline.com

Carol Callaghan 

Michigan Department of Community Health

3423 N. Martin Luther King Blvd.

Lansing, MI 48906

Phone: (517) 335-9616

Fax: (517) 335-9397

E-mail: callaghanc@michigan.gov

Erie E. Calloway 

Sisters Network, Incorporated

8787 Woodway Drive, Suite 4206

Houston, TX 77063

Phone: (713) 781-0255

Fax: (713) 780-8998

E-mail: sisnet4@aol.com

Laura Caisley 

Centers for Disease Control and Prevention

4770 Buford Highway, NE

Atlanta, GA 30341

Phone: (770) 488-3021

Fax: (770) 488-4760

E-mail: LCaisley@cdc.gov

Ellen E. Casey 

Dana-Farber Cancer Institute

44 Binney Street, D326

Boston, MA 02115

Phone: (617) 632-2910

Fax: (617) 632-2473

E-mail: ellen_casey@dfci.harvard.edu

Katie Clarke 

Sonnenschein Nath & Rosenthal

1301 K Street, NW, Suite 500

Washington, DC 20005

Phone: (202) 408-6445

Fax: (202) 408-6399

E-mail: kclarke@sonnenschein.com

Janet Collins 

Centers for Disease Control and Prevention

4770 Buford Highway, NE, MS K-40

Atlanta, GA 30341

Phone: (770) 488-5402

Fax: (770) 488-5971

E-mail: jlc1@cdc.gov

George Dahlman 

The Leukemia & Lymphoma Society

11 Canal Centre #111

Alexandria, VA 22314

Phone: (703) 535-6650 ext. 15

Fax: (703) 535-8163

E-mail: dahlmang@southern.leukemia-lymphoma.org

A-2 
Beth Darnley 

Patient Advocate Foundation

700 Thimble Shoals Boulevard, Suite 200

Newport News, VA 23606

Phone: (800) 532-5274

Fax: (757) 873-8999

E-mail: bethd@patientadvocate.org

Angelina Esparza 

University of Texas, M.D. Anderson Cancer Center

1515 Holcombe Boulevard

Houston, TX 77009

Phone: (713) 792-3357

Fax: (713) 796-8347

E-mail: aesparza@mdanderson.org

Tiffany Galligan 

Lance Armstrong Foundation 

P.O. Box 161150

Austin, TX 78716

Phone: (512) 236-8820, ext. 128

E-mail: tiffany@laf.org

Angela Geiger 

American Cancer Society

1599 Clifton Road, NE

Atlanta, GA 30329

Phone: (404) 327-6414

Fax: (404) 325-9341

E-mail: ageiger@cancer.org

Hellen Gelband 

Institute of Medicine

500 5th Street, NW, #733

Washington, DC 20001

Phone: (202) 334-1446

Fax: (202) 334-2647

E-mail: Hgelband@nas.edu

Alisa M. Gilbert 

The National Office of Native Cancer Survivorship

13790 Davis Street

Anchorage, AK 99516

Phone: (800) 315-8848

Fax: (907) 333-2071

E-mail: sulook@aol.com

Timothy J. Gilbert 

Alaska Native Tribal Health Consortium

4141 Ambassador Drive

Anchorage, AK 99508

Phone: (907) 729-1916

Fax: (907) 729-1901

E-mail: tjgilbert@anthc.org

Sue A. Gilman 

The Susan G. Komen Breast Cancer Foundation

7221 Brookcove Lane

Dallas, TX 75214

Phone: (214) 824-6837

Fax: (214) 824-0824

E-mail: jbgilma@attglobal.net

Leslie S. Given 

Centers for Disease Control and Prevention

4770 Buford Highway, NE, MS K-57

Atlanta, GA 30341

Phone: (770) 488-3099

Fax: (770) 488-3230

E-mail: lgiven@cdc.gov

Betsy Goldberg 

Lance Armstrong Foundation 

P.O. Box 161150

Austin, TX 78716

Work: (512) 236-8820

Fax: (512) 236-8482

E-mail: betsy@laf.org

Karen Greendale 

New York State Department of Health

Riverview Center, 3rd Floor West, 

150 Broadway

Albany, NY 12204

Phone: (518) 474-1222

Fax: (518) 473-0642

E-mail: kxg03@health.state.ny.us

Ellen R. Gritz 

University of Texas, M.D. Anderson Cancer Center

1515 Holcombe Boulevard, Suite 243

Houston, TX 77030-4009

Phone: (713) 792-0919

Fax: (713) 794-4730

E-mail: egritz@mdanderson.org

A-3 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Susan E. Grober 

Cancer Care Incorporated

275 Seventh Avenue

New York, NY 10001

Phone: (212) 712-6165

Fax: (212) 712-8495

E-mail: sgrober@cancercare.org

Wendy S. Harpham 

Presbyterian Hospital of Dallas 

P.O. Box 835574

Richardson, TX 75083-5574

Phone: (972) 702-0321

Fax: (972) 702-0321

E-mail: harpham@comcast.net

Amy Harris 

Centers for Disease Control and Prevention 

4770 Buford Highway, NE

Atlanta, GA 30341

Phone: (770) 488-4260

Fax: (770) 488-4760

E-mail: ABHarris@cdc.gov

Catherine D. Harvey 

National Coalition for Cancer Survivorship 

655 Cain Drive

Mt. Pleasant, SC 29464

Phone: (843) 881-4645

Fax: (843) 971-1310

E-mail: catherineharvey@comcast.net

Pamela J. Haylock 

University of Texas Medical Branch 

School of Nursing

18954 State Hwy 16 North

Medina, TX 78055

Phone: (830) 589-7380

Fax: (830) 589-7381

E-mail: pjhaylock@indian-creek.net

Debra J. Holden 

RTI International

3040 Cornwallis Road

Research Triangle Park, NC 27709

Phone: (919) 541-6000

Fax: (919) 541-7148

E-mail: debra@rti.com

Melissa M. Hudson 

St. Jude Children’s Research Hospital

332 North Lauderdale Street

Memphis, TN 38105

Phone: (901) 495-3445

Fax: (901) 495-3058

E-mail: melissa.hudson@stjude.org

Linda A. Jacobs 

University of Pennsylvania Abramson Cancer Center

14 Penn Tower, 3400 Spruce Street

Philadelphia, PA 19104

Phone: (215) 615-3371

Fax: (610) 615-3349

E-mail: linda.jacobs@uphs.upenn.edu

Mickey L. Jacobs 

Texas Cancer Council

211 E. 7th, Suite 710

Austin, TX 78701

Phone: (512) 463-3190

Fax: (512) 475-2563

E-mail: mjacobs@tcc.state.tx.us

Harriet Jett 

Centers for Disease Control and Prevention

4770 Buford Highway, NE, MS K-40

Atlanta, GA 30341

Phone: (770) 488-6472

Fax: (770) 488-5971

E-mail: hjett@cdc.gov

Stuart J. Kaplan 

Children’s Oncology Camp Foundation 

P.O. Box 1450

Missoula, MT 59801

Phone: (901) 495-4776

Fax: (901) 495-3058

E-mail: stuart.kaplan@stjude.org

Susan L. Lamb 

Oklahoma State Department of Health

Chronic Disease Services

1000 N.E.10th

Oklahoma City, OK 73117

Phone: (405) 271-4072, ext. 57126

Fax: (405) 271-5181

E-mail: susanl@health.state.ok.us

A-4 
Nancy Lee 

Centers for Disease Control and Prevention 

2858 Woodcock Boulevard

Atlanta, GA 30341

Phone: (770) 488-3011

Fax: (770) 488-4760

E-mail: nclee@cdc.gov

Susan Leigh 

National Coalition for Cancer Survivorship

505 E. Golder Ranch Road

Tuscan, AZ 85739

Phone: (520) 825-0058

Fax: (520) 825-8650

E-mail: sleigh@mindspring.com

Maureen T. Lilly 

RAND Corporation

4200 Wisconsin Avenue, NW, 4th Floor

Washington, DC 20016

Phone: (202) 895-2618

Fax: (202) 966-5410

E-mail: mlilly@rand.org

Steven E. Lipshultz 

University of Miami

Coral Gables, FL 33124

Phone: (305) 284-2211

E-mail: steve_lipshultz@miami.edu

Randall Macon 

Lance Armstrong Foundation 

P.O. Box 161150

Austin, TX 78716

Phone: (512) 236-8820

Fax: (512) 236-8482

Doug McCormack 

Sonnenschein Nath & Rosenthal

1301 K Street, NW, Suite 600 East Tower

Washington, DC 20005

Phone (202) 408-9138

E-mail: dmccormack@sonnenschein.com

Anna T. Meadows 

Children’s Hospital of Philadelphia

34th Street & Civic Center Boulevard

Philadelphia, PA 19104

Phone: (215) 590-2804

Fax: (215) 590-4183

E-mail: meadows@email.chop.edu

Margo Michaels 

National Cancer Institute, NIH

6116 Executive Boulevard, Suite 202

Rockville, MD 20892-8334

Phone: (301) 594-8993

E-mail: micham@mail.nih.gov

Susan Murchie 

RTI International

3040 Cornwallis Road

Research Triangle Park, NC 27709

Phone: (919) 485-2604

Fax : (919) 541-6683

E-mail: murchie@rti.org

Donna Nichols 

Texas Department of Health

350 Young School House Road

Smithville, TX 78957

Phone: (512) 458-7261

E-mail: donna.nichols@tdh.state.tx.us

Kevin C. Oeffinger 

University of Texas Southwestern Medical Center

6263 Harry Hines Boulevard

Dallas, TX 75390-9067

Phone: (214) 648-1399

Fax: (214) 648-1307

E-mail: kevin.oeffinger@utsouthwestern.edu

Karen Parker 

President’s Cancer Panel

31 Center Drive

Building 31, Room 4A48

Bethesda, MD 20814

Phone: (301) 496-1148

Fax: (301) 402-1508

E-mail: klparker@mail.nih.gov

Marilyn M. Patterson 

Oncology Nursing Society

300 Jeff Woodfin Road

Inman, SC 29349

Phone: (864) 473-2098

Fax: (864) 473-2275

E-mail: fatiguelady@hotmail.com

A-5 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
Diane F. Perlmutter Phyllis Rochester 

Gilda’s Club Worldwide Centers for Disease Control and Prevention 

322 Eighth Avenue 4770 Buford Highway, NE 

New York, NY 10001 Atlanta, GA 30341 

Phone: (917) 305-1200, ext. 230 Phone: (770) 488-3096 

Fax: (917) 305-0549 Fax: (770) 488-3230 

E-mail: dperlmutter@gildasclub.org E-mail: pfr5@cdc.gov 

Loria Pollack Michael Samuelson 

Centers for Disease Control and Prevention The National Center for Health Promotion 

4700 Buford Hwy, NE, MS K-55 2232 S. Main Street, #475 

Atlanta, GA 30033 Ann Arbor, MI 48103 

Phone: (770) 488-3181 Phone: (734) 429-3065 

Fax: (770) 488-4639 Fax: (734) 429-8309 

E-mail: lop5@cdc.gov E-mail: Michael@thenationalcenter.com 

Tabatha Powell Jay L. Silver 

Centers for Disease Control and Prevention Intercultural Cancer Council 

4770 Buford Highway, NE 6655 Travis Street, Suite 322 

Atlanta, GA 30341 Houston, TX 77030-1312 

Phone: (770) 448-4263 Phone: (713) 798-1069 

Fax: (770) 488-4760 Fax: (713) 798-6222 

E-mail: tdo3@cdc.gov E-mail: jsilver@bcm.tmc.edu 

Elizabeth Randall-David Priya Sircar 

Center for Creative Education Lance Armstrong Foundation 

1019 W. Markham Avenue P.O. Box 161150 

Durham, NC 27701 Austin, TX 78716 

Phone: (919) 687-0886 Phone: (512) 236-8820 

Fax: (919) 687-0886 Fax: (512) 236-8482 

E-mail: Brdcfce@aol.com 

Cynthia S. Soloe 

Christopher J. Recklitis RTI International 

Dana-Farber Cancer Institute 3040 Cornwallis Road 

44 Binney Street Research Triangle Park, NC 27709 

Boston, MA 02115 Phone: (919) 541-6000 

Phone: (617) 632-3839 Fax: (919) 541-7148 

E-mail: christopher_recklitis@dfci.harvard.edu E-mail: csoloe@rti.org 

Leslie L. Robison George-Ann Stokes 

University of Minnesota Centers for Disease Control and Prevention 

420 Delaware Street, SE, MMC 422 4770 Buford Highway, NE, MS K-57 

Minneapolis, MN 55455 Atlanta, GA 30341 

Phone: (612) 626-2902 Phone: (770) 488-4780 

Fax: (612) 626-4842 Fax: (770) 488-3230 

E-mail: robison@epi.umn.edu E-mail: gas7@cdc.gov 

A-6 
Ellen Stovall Kirk Watson 

National Coalition for Cancer Survivorship Former Mayor of Austin 

1010 Wayne Avenue, Suite 770 106 East Sixth Street, Suite 700 

Silver Spring, MD 20910 Austin, TX 78701 

Phone: (301) 650-9127 Phone: (512) 479-5900 

Fax: (301) 565-9670 Fax: (512) 479-5934 

E-mail: estovall@canceradvocacy.org E-mail: Kwatson@watsonbishop.com 

Edward L. Trimble Fran Wheeler 

National Cancer Institute, NIH Chronic Disease Directors 

6130 Executive Boulevard, Suite 7025 1107 Rutland Drive 

Rockville, MD 20892-7436 West Columbia, SC 29169 

Phone: (301) 496-2522 Phone: (803) 796-9574 

Fax: (301) 402-0557 Fax: (803) 796-6510 

E-mail: tt6m@nih.gov E-mail: fran-wheeler@sc.rr.com 

Susan True Brock Yetso 

Centers for Disease Control and Prevention Ulman Cancer Fund for Young Adults 

4770 Buford Highway, NE, MS K-57 5575 Sterrett Place, Suite 340A 

Atlanta, GA 30314 Columbia, MD 21044 

Phone: (770) 488-4880 Phone: (410) 964-0202 

Fax: (770) 488-3230 Fax: (410) 964-0402 

E-mail: smt7@cdc.gov E-mail: brock@ulmanfund.org 

PerStephanie Thompson Joan Levy Zlotnik 

Centers for Disease Control and Prevention Institute for the Advancement of Social Work Research 

4770 Buford Highway, NE 750 First Street, NE, Suite 700 

Atlanta, GA 30341 Washington, DC 20002-4241 

Phone: (770) 488-4263 Phone: (202) 336-8393 

Fax: (770) 488-4760 Fax: (202) 336-8351 

E-mail: PThompson@cdc.gov E-mail: jzlotnik@naswdc.org 

Diana Ulman 

Maryland Cancer Plan 

4240 Blue Barrow Ride 

Ellicott City, MD 21042 

Phone: (410) 461-3400 

Fax: (410) 461-3401 

E-mail: dulman@connext.net 

Doug Ulman 

Lance Armstrong Foundation 

P.O. Box 161150 

Austin, TX 78716 

Phone: (512) 236-8820 

Fax: (512) 236-8482 

E-mail: doug@laf.org 

A-7 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 
APPENDIX B: HEALTHY PEOPLE 2010 CANCER OBJECTIVES 

1. Reduce the overall cancer death rate. 

2. Reduce the lung cancer death rate. 

3. Reduce the breast cancer death rate. 

4. Reduce the death rate from cancer of the uterine cervix. 

5. Reduce the colorectal cancer death rate. 

6. Reduce the oropharyngeal cancer death rate. 

7. Reduce the prostate cancer death rate. 

8. Reduce the rate of melanoma cancer deaths. 

9. Increase the proportion of persons who use at least one of the 

following protective measures that may reduce the risk of skin 

cancer: avoid the sun between 10 a.m. and 4 p.m., wear sunprotective clothing when exposed to sunlight, use sunscreen with 

a sun-protective factor (SPF) of 15 or higher, and avoid artificial 

sources of ultraviolet light. 

9a. (Developmental) Increase the proportion of adolescents in 

grades 9 through 12 who follow protective measures that may 

reduce the risk of skin cancer. 

9b. Increase the proportion of adults aged 18 years and older who 

follow protective measures that may reduce the risk of skin 

cancer. 

10. Increase the proportion of physicians and dentists who counsel 

their at-risk patients about tobacco use cessation, physical 

activity, and cancer screening. 

11. Increase the proportion of women who receive a Pap test. 

12. Increase the proportion of adults who receive a colorectal cancer 

screening examination 

13. Increase the proportion of women aged 40 years and older who 

have received a mammogram within the preceding 2 years. 

14. Increase the number of States that have a statewide populationbased cancer registry that captures case information on at least 95 

percent of the expected number of reportable cancers. 

15. Increase the proportion of cancer survivors who are living 5 years 

or longer after diagnosis. 

Source: http://www.healthypeople.gov/document/Word/Volume1/03Cancer.doc 

B-1