MAKING CANCER HEALTH DISPARITIES HISTORY 

Report of the 

Trans-HHS Cancer Health Disparities 

Progress Review Group 

Submitted to the Secretary, U.S. Department of Health and Human Services 

March 2004 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

FROM THE TRANS-HHS CANCER HEALTH DISPARITIES PROGRESS REVIEW GROUP 

We are privileged to submit Making Cancer Health Disparities History, the Report of the Trans-HHS 

Cancer Health Disparities Progress Review Group (PRG), on behalf of our fellow Americans who 

experience cancer. We envision that this initiative will harness the energies and resources of the Federal 

government so that cancer health disparities will become a thing of the past. In preparing this report, we 

note two things: 

• The historical significance of what has been done. Never before has the Department of Health 

and Human Services (HHS) embarked on such a concerted effort to make the goal of eliminating 

health disparities a reality. The charge to implement a Department-wide PRG to focus on cancer 

health disparities was unprecedented and the leadership and commitment given to this topic was 

unparalleled. 

Furthermore, the PRG process brought together the Nation’s leading researchers, health practitioners, and advocates, as well as cancer survivors. Collectively, this group represented hundreds 

of years of experience dedicated to reducing cancer health disparities. 

• The compelling need to eliminate cancer health disparities now. In our Call to Action, we 

speak with one voice ... with one heart ... that cancer health disparities reflect a grave injustice. 

The time to start is now, and we urge HHS to heed our Call. 

Respectfully, 

Diana M. Lopez, Ph.D. Moon S. Chen, Jr., Ph.D., M.P.H. Yvonne T. Maddox, Ph.D. 

Co-Chair Co-Chair Executive Director 

Cheryl A. Boyce, M.S. Linda Burhansstipanov, Dr.P.H., M.S.P.H. 

Mark S. Clanton, M.D., M.P.H. Harold P. Freeman, M.D. 

ii From the Trans-HHS Cancer Health Disparities Progress Review Group 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Venus Ginés, M.A. 

Grazell R. Howard, J.D. 

Judith S. Kaur, M.D. 

Ruth (Zu-Kei) C. Lin, R.N., M.S., A.O.C.N. 

Sandra Millon-Underwood, Ph.D., R.N., F.A.A.N. 

Edward E. Partridge, M.D. 

José Russo, M.D. 

Emmanuel A. Taylor, Dr.P.H., M.Sc. 

COL (Ret) James E. Williams, Jr., M.S. 

Robert A. Hiatt, M.D., Ph.D. 

Fatimah L. C. Jackson, Ph.D. 

Amanullah Khan, M.D., Ph.D. 

John Maupin, Jr., D.D.S. 

Augusto C. Ochoa, M.D. 

Elena V. Rios, M.D., M.P.H. 

Nathan Stinson, Jr., M.D., Ph.D., M.P.H. 

Armin D. Weinberg, Ph.D. 

From the Trans-HHS Cancer Health Disparities Progress Review Group iii 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Trans-HHS Cancer Health Disparities Progress Review Group 

Planning Meeting, June 2003 

iv From the Trans-HHS Cancer Health Disparities Progress Review Group 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Acknowledgments 

The Trans-HHS Cancer Health Disparities Progress Review Group (PRG) process has been a collaborative effort involving contributions from numerous people with different backgrounds, skills, and talents. 

We wish to acknowledge and thank the following people for their commitment, hard work, and assistance 

in the development of this report. 

• Cherie Nichols, Kathie Reed, Heather Burns, Jon Kerner, and Andrew von Eschenbach at the 

National Cancer Institute, who provided coordination, technical support, and encouragement 

throughout. 

• Ilka Chavez and Willis Morris in the Office of the Deputy Secretary and staff in the Office of 

Minority Health, Department of Health and Human Services (HHS), who endorsed and encouraged 

our efforts. 

• The members of the Cancer Health Disparities PRG Federal Steering Committee and their alternates: 

Duiona Baker, Substance Abuse and Mental Health Services Administration; Patricia Delaney and 

Lyvon Covington, Food and Drug Administration; Kaytura Felix-Aaron, Agency for Healthcare 

Research and Quality; Dianne Freeman, Administration on Aging; June Horner and Jeanean Willis, 

Health Resources and Services Administration; Wanda Jones, HHS Office for Women’s Health; 

Doug Hussey, Mireille Kanda, Jon Kerner, and John Ruffin, National Institutes of Health (NIH); 

Kevin Nash and Denecesia Green, Centers for Medicare and Medicaid Services; William 

Vanderwagen and Nathaniel Cobb, Indian Health Services; and Walter Williams, Nancy Lee, and 

April Vance, Centers for Disease Control and Prevention. Under the leadership of Cherie Nichols, 

these individuals coordinated the PRG process, provided much needed insight, and will play a role in 

the implementation of our Call to Action within HHS. 

• The 80 individuals who joined us at our Cancer Health Disparities PRG Roundtable Meeting. Representing a wide range of experience and perspectives, they provided us with breadth and depth in all 

areas of importance to the field. We especially thank the 10 individuals who served, along with PRG 

members, as Co-Chairs of our Roundtable Breakout Groups: Claudia Baquet, Tim Byers, Camara 

Jones, Marjorie Kagawa-Singer, Momi Kaanoi, Cathy Meade, Amelie Ramirez, Eduardo Sotomayor, 

Ho Tran, and Shalini Vallabhan. See Appendix B for a full list of Roundtable participants. 

• The following additional NIH staff who supported the initiation of the project: Marianne Augustine, 

Sarah Birckhead, Nancy Breen, Linda Brown, Nelvis Castro, Lauren Christopher, Jane Daye, Scott 

Douglas, Frank Govern, Susan Persons, Suzanne Heurtin-Roberts, Jo-Ann Kriebel, Charlene Liggins, 

Worta McCaskill-Stevens, Tarsha McCrae, Christine Moretto, Judith Swan, Ted Trimble, Cynthia 

Vinson, Nada Vydelingum, Barbara Wingrove, and Debbie Winn. 

• Donald Coffey, Terisa James, Edna Mora, and Jo Ann Tsark, who participated in the June 2003 PRG 

Planning Meeting, and Brian Smedley, who assisted in planning and preparing materials for the 

August 2003 Roundtable Meeting. 

• The staff of Science Applications International Corporation, led by Catherine Kappel Hall and Sabina 

Robinson, who assisted in logistics, documentation, and report preparation: Glenn Bell, Debby 

Berlyne, Lisa Chiu, Joseph Fanzone, Perry Frank, Randi Henderson, Eric Levine, Alice Lium, Beth 

Mathews-Bradshaw, Erika Peterson, Maneesha Solanki, Rob Watson, and Jeffrey Zalatoris. A 

special thanks goes to Sabina Robinson for her dedication to the quality and purpose of this report. 

• The staff of Concept Systems Incorporated, led by Dan McLinden, who supported the concept 

mapping used for identifying priorities and selecting topic areas addressed by the Roundtable 

Breakout Groups. 

• The staff of the Scientific Consulting Group, especially Kathryn Brown-Huamani and Paula Zeller, 

who performed critical editing tasks for the cancer health disparities background paper. 

From the Trans-HHS Cancer Health Disparities Progress Review Group v 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

EXECUTIVE SUMMARY 

Committed to eliminating the unequal burden of suffering and death due to 

cancer, the Department of Health and Human Services established the 

Trans-HHS Cancer Health Disparities Progress Review Group. 

The President of the United States and the Secretary of Health and Human Services (HHS) have made 

closing the gap in health disparities a top priority for our Nation. Selecting cancer health disparities as a 

model, HHS established, in 2003, the Trans-HHS Cancer Health Disparities Progress Review Group 

(PRG). We were charged with developing an integrated set of recommendations to be implemented by 

the Department and its agencies. 

The unequal burden of disease in our society is not just a scientific and medical challenge. It also 

presents a moral and ethical dilemma for our Nation. Together, we have reviewed the status of health 

disparities related to cancer in our country and forged a common vision of how they could be reduced or 

eliminated. We have developed this Call to Action so that HHS can meet its objectives to: 

• Define and describe issues related to cancer health disparities.1 

• Identify areas of strength, gaps, opportunities, and priorities to address cancer health disparities in 

research and intervention development. 

• Facilitate the adoption and implementation of cancer research, policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of cancer 

for every American. 

Our Call to Action consists of 14 priority recommendations for HHS to lead the Nation in eliminating 

cancer health disparities. Three of these recommendations are for overarching planning and coordination 

actions, and the remaining 11 are for research discovery, program development, and service delivery 

activities conducted by the various agencies within HHS. Figure ES-1 presents the recommendations in 

these four areas, along with a 3-year initiation strategy that allows for flexibility in the required levels of 

effort, resources, and collaboration. 

Unanimous and enthusiastic in our support for these recommendations, we believe that their timely implementation will correct serious health- and health care-related deficiencies that will have far reaching 

effects on our society. Implementation of recommendations already developed by other expert panels on 

health disparities in recent years has been slow and incomplete. We urge HHS to follow through on its 

commitment to alleviate the injustice and unnecessary suffering and death faced by those who shoulder an 

unequal share of our nation’s cancer burden. 

1

 Cancer health disparities are defined by the National Cancer Institute as “differences in the incidence, prevalence, mortality, and 

burden of cancer and related adverse health conditions that exist among specific population groups in the United States.” 

vi Executive Summary 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Here is our Call to Action. 

Planning and Coordination 

For Initiation within 1 Year: 

• Conduct a program and budget review of all relevant HHS programs for the purpose of shifting and realigning support, where 

possible, to evidence-based programs2 that are effective in addressing cancer health disparities. 

• Assemble a Federal Leadership Council on Cancer Health Disparities led by the HHS Secretary in partnership with the Secretaries 

of other appropriate Federal departments to mobilize available resources in a comprehensive national effort to eliminate cancer 

health disparities. 

For Initiation within 3 Years: 

• Implement, in all HHS health service and reimbursement agencies, recommendations from the Institute of Medicine Report entitled 

Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. 

Discovery Development Delivery 

For Initiation within 1 Year: 

• Evaluate specific grant and contract 

processes to determine what additional 

steps are needed to enhance the 

cultural competence, representative 

composition, and methodological 

expertise of peer review panels for 

cancer health disparities research. 

For Initiation within 2 Years: 

• Establish new approaches for data 

collection and sharing to aid in the 

study of the effects of cancer and their 

relationship to variables such as race, 

ethnicity, and socioeconomic status. 

• Increase the proportion of HHS agency 

support targeted specifically to disease 

prevention, health promotion, 

evaluation, and translational research3 

on cancer health disparities. 

For Initiation within 3 Years: 

• Establish partnerships for and support 

the development of sustainable 

community-based networks for 

participatory research in areas of high 

cancer disparities. 

For Initiation within 2 Years: 

• Develop and implement a new transHHS initiative to qualify high disparity 

geographic areas for special program 

designation as Communities 

Empowered to Eliminate Disparities. 

Communities would qualify for the 

program by submitting strategic plans 

to reduce specific cancer disparities for 

identifiable populations. 

• Develop, implement, and evaluate 

education and training programs 

designed to create a diverse and 

culturally competent cancer care 

workforce. Apply standards to certify 

the cultural competence of health 

professionals who receive Federal 

support. 

For Initiation within 1 Year: 

• Implement evidence-based tobacco 

control strategies, including those that 

create financial disincentives for 

tobacco consumption and those that 

provide social reinforcement for not 

smoking. 

For Initiation within 2 Years: 

• Ensure that populations at highest risk 

have access to age- and genderappropriate screening and follow-up 

services for breast, cervical, and 

colorectal cancer. Expand to include 

these services for other cancers (e.g., 

prostate and lung) when there is 

evidence that they are effective at 

improving survival. 

• Support culturally, linguistically, and 

literacy specific approaches for 

eliminating cancer health disparities. 

These should include evidence-based 

“best practices,” proven interventions, 

and outreach strategies. 

For Initiation within 3 Years: 

• Ensure that every cancer patient has 

access to “state-of–the-science” care. 

• Collaborate with the private and 

voluntary health sectors to ensure that 

all Americans receive the full range of 

lifesaving information, services, and 

quality care from cancer prevention to 

screening to diagnosis to treatment. 

Figure ES-1. The Priority Recommendations of the 

Trans-HHS Cancer Health Disparities PRG 

2

 Programs or interventions are considered evidence based when a number of studies have been conducted according to methods

deemed valid and the results of the studies are consistent and also deemed valid. 3

 In this context, research that translates discovery into effective interventions to reduce cancer health disparities.

Executive Summary vii 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

TABLE OF CONTENTS 

From The Trans-HHS Cancer Health Disparities Progress Review Group..................................................ii 

Executive Summary .....................................................................................................................................vi 

Introduction...................................................................................................................................................1 

Our Call to Action for Eliminating Cancer Health Disparities.....................................................................3 

Planning and Coordination.....................................................................................................................3 

Discovery................................................................................................................................................6 

Development ..........................................................................................................................................9 

Delivery................................................................................................................................................11 

Conclusion ..................................................................................................................................................17 

Literature Cited ...........................................................................................................................................18 

Appendices 

Appendix A –Reports of the Roundtable Breakout Groups .....................................................................A-1 

Methods, Measurement, and Reporting ........................................................................A-3 

Enhancing the Level and Quality of Health Disparities Research ................................A-7 

Research Policy.............................................................................................................A-9

Access to Quality Cancer Services..............................................................................A-15 

Culturally Competent Health Care Systems................................................................A-21 

Facilitating Partnerships for Action ............................................................................A-25 

Implementing Evidence-Based Programs to Reduce Cancer Health Disparities........A-29 

Culturally and Linguistically Competent Education and Training..............................A-33 

Inequity and Social Injustice .......................................................................................A-37 

Changes and Implementation of Public Policy ...........................................................A-39 

Bibliography.....................................................................................................................A-45 

Appendix B –About the Trans-HHS Cancer Health Disparities Progress Review Group ....................... B-1 

Overview....................................................................................................................... B-3 

Progress Review Group Members................................................................................. B-9 

Federal Steering Committee Members........................................................................ B-11 

Roundtable Participants............................................................................................... B-13 

Appendix C –Alignment of PRG Priority Recommendations with Goals, Objectives, and 

Recommendations of Importance to HHS ......................................................................... C-1 

Appendix D –Glossary of Terms and Acronyms......................................................................................D-1 

Figures and Tables 

Figure ES-1. The Priority Recommendations of the Trans-HHS Cancer Health Disparities PRG ...........vii 

Figure 1. Timeline for Initiation of PRG Priority Recommendations.................................................17 

Figure B1. The Three Phases of the PRG Process ............................................................................... B-3 

Figure B2. Organizational Structure for Phase I of the PRG Process..................................................B-3 

Figure B3. Development of the 14 PRG Priority Recommendations ..................................................B-5 

Table 1. The Complex Nature of the Research Required on Cancer Health Disparities ..................... 6 

Table 2. Barriers to Delivering Cancer Services to All People at a Consistent Level and Quality.... 12 

Table B1. The PRG Priority Recommendations Derived from the Recommendations of the 

Roundtable Breakout Groups.............................................................................................B-6 

Table C1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels.......... C-1 

Table of Contents ix

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

INTRODUCTION 

The President of the United States and the 

Secretary of Health and Human Services (HHS) 

have made closing the gap in health disparities a 

top priority for our Nation. Selecting cancer 

health disparities as a model, HHS established, 

in 2003, the Trans-HHS Cancer Health Disparities Progress Review Group (PRG). We were 

charged with developing an integrated set of 

recommendations to be implemented by the 

Department and its agencies. 4 

parities PRG was initiated by the entity to which 

its recommendations are being directed (HHS) 

and not by a third party. The deliberations of the 

Group have been focused primarily on solution 

development rather than problem identification 

and characterization. Furthermore, the process 

has been unique in that the PRG has been working in partnership with – not independently from 

– the organization to which its recommendations 

are being directed. 

The unequal burden of Cancer health disparities are differences in the 

incidence, prevalence, mortality, and burden of cancer 

and related adverse health conditions that exist among 

specific population groups in the United States. e 

population groups may be characterized by gender, 

age, ethnicity, education, income, social class, 

disability, geographic location, or sexual orientation. 4 

Thes

The development of this 

disease in our society report involved the hard 

is not just a scientific work and dedication of 

and medical challenge. the Trans-HHS Cancer 

It also presents a Health Disparities 

moral and ethical Federal Steering 

dilemma for our Committee, the leaders 

Nation. Together, we and members of the 

have reviewed the status of health disparities 

related to cancer in our country and forged a 

common vision of how they could be reduced or 

eliminated. We have developed this Call to 

Action so that HHS can meet its objectives to: 

• Define and describe issues related to cancer 

health disparities. 

• Identify areas of strength, gaps, opportunities, and priorities to address cancer health 

disparities in research and intervention 

development. 

• Facilitate the adoption and implementation 

of cancer research, policy, community 

programs, and clinical interventions and 

evaluate their impact on specific cancer 

health disparities. 

• Ensure unbiased access to continuous quality preventive care, early detection, and 

treatment of cancer for every American. 

Unlike the other expert panels that have been 

convened to review cancer and other health 

disparities, the Trans-HHS Cancer Health Dis4 National Cancer Institute, Division of Cancer Control and 

Population Sciences 

PRG, and additional experts who participated in 

the Cancer Health Disparities Roundtable 

Meeting. Reports and recommendations from 

the Breakout Groups (see Appendix A) and 

subsequent discussion by the entire Roundtable 

served as the basis for the 14 priority 

recommendations that make up our Call to 

Action for eliminating cancer health disparities 

(see Appendix B and Table B-1). 

By planning and working together, HHS agencies can lead the Nation’s research, public 

health, and clinical delivery efforts to achieve a 

seamless and more assertive progression from 

scientific discovery to the development and 

delivery of evidence-based interventions to 

eliminate cancer health disparities. Health care 

policy makers, providers, payers, and other 

stakeholders must support innovative interventions for cancer prevention, increased early 

detection and diagnosis, state-of-the-art cancer 

treatment, survivorship support and encouragement, and dignified end-of-life cancer care. 

Introduction 1 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Historical Perspective 

Some level of health disparity occurs among all 

people affected by cancer. This is because 

cancer occurs due to a variety of factors related 

to genes, individual behaviors, and cultural, 

social, and environmental circumstances. The 

complex interaction among these factors 

determines who is born healthy, who maintains 

health throughout his or her life, and who 

develops and survives cancer. 

Numerous scientific studies provide the evidence that certain U.S. populations experience 

significant disparities in risk, incidence, diseasestage diagnosis, care received, and disease outcomes for cancer. Several reports such as the 

Institute of Medicine’s Unequal Treatment: 

Confronting Racial and Ethnic Disparities in 

Healthcare [1] (see Appendix C) have identified 

society-wide quality, continuity, and access 

problems experienced by America’s medically 

underserved, low income, and minority populations. These and other study results provide 

growing evidence that many people in America 

receive neither adequate prevention and detection services nor the most appropriate care for 

their diseases. In addition, the President’s 

Cancer Panel Report, Voices of a Broken 

System: Real People, Real Problems [2], 

provides substantial anecdotal evidence about 

the barriers to cancer treatment and care experienced by underserved populations in our society. 

Much progress has been made over the past 

three decades in understanding, preventing, 

detecting, diagnosing, and treating cancer, and in 

improving the quality of cancer survivorship and 

end-of-life care. Sadly, not all Americans have 

reaped the benefits of this progress. Minority 

and underserved populations – distinguished by 

race/ethnicity, gender, age, socioeconomic 

status, geographic location, occupation, and/or 

education – bear a greater cancer burden than 

the rest of the nation. For example, within the 

United States these populations are significantly 

more likely to: 

• Be diagnosed with and die from preventable 

cancers. 

• Be diagnosed with late-stage disease for 

cancers detectable through screening at an 

early stage. 

• Receive either no treatment or treatment that 

does not meet currently accepted standards 

of care. 

• Die of cancers that are generally curable. 

• Suffer from cancer without the benefit of 

pain control and other palliative care. 

Appendix A includes a bibliography that documents the specific cancer health disparities that 

are associated with different populations and 

subpopulations. 

2 Introduction 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

OUR CALL TO ACTION FOR ELIMINATING CANCER HEALTH DISPARITIES 

The Call to Action from the Trans-HHS Cancer 

Health Disparities Progress Review Group (PRG), 

for implementation by the Department of Health 

and Human Services (HHS), consists of 14 

recommendations derived from 29 Roundtable 

recommendations (see Table B-1 in Appendix B). 

It represents our consensus regarding the most 

critical and feasible means for eliminating cancer 

health disparities through actions that are within 

the purview of HHS and its agencies. 

Within HHS, agency activities can be placed 

along a continuum from Discovery to Development of interventions based on new knowledge to 

Delivery of those interventions for all who need 

them. Thus, we identify challenges and opportunities and present our priority recommendations 

within this framework.5 To ensure that all activities are integrated, we include overarching 

recommendations in Planning and 

Coordination. 

HHS leadership retains ultimate responsibility and 

authority for the manner in which each recommendation is implemented. To increase the 

likelihood of success, we suggest a time frame for 

5

 In the sections that follow, the PRG priority 

recommendations are presented according to their order of 

appearance in Figure ES-1. No inferences should be made, 

from this sequencing, regarding importance or time frame for 

completion. 

initiating each recommendation and encourage 

HHS to develop an implementation plan with a 

schedule for completion. We also offer some 

ideas on how the recommendations could be 

accomplished. Additional suggestions for 

implementation can be found in the Breakout 

Group Reports included in Appendix A. 

Planning and Coordination 

Challenges and Opportunities 

While HHS agencies administer numerous effecttive programs, there remain duplications, overlaps, and gaps in service. Through coordinated 

short-, mid-, and long-range planning, across all 

agencies, HHS can ensure that the most promising 

discoveries arising from one agency are rapidly 

advanced into development and delivered by other 

agencies to the citizens who require them. 

A centralized mechanism is needed at the Department level to coordinate and manage activities 

across agencies that address important issues such 

as: 

• Culturally competent and evidence-based 

interventions 

• High-quality and efficiency of service delivery 

• Culturally competent recruitment, retention, 

and intervention methodologies 

• Improved access to state-of-the-art cancer 

care, including clinical trials, and to adequate 

insurance coverage 

Establishing a centralized mechanism for oversight of the entire process from planning to discovery to development to delivery requires a solid 

commitment from, and assignment of accountability within, HHS leadership and agencies. 

Our Call to Action for Eliminating Cancer Health Disparities 3 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Foremost, there is a need to conduct an internal 

review of allocations and realign dollars in the 

various programs across HHS agencies. 

Priority Recommendations 

Conduct a program and budget review of all 

relevant HHS programs for the purpose of 

shifting and realigning support, where possible, to culturally competent evidence-based 

programs that are effective in addressing 

cancer health disparities.

Planning and Coordination, for Initiation within 1 Year 

Rationale 

In the current economic environment, the reality is 

that no or limited additional monies may be available to implement new policies and/or programs 

or to improve existing ones. HHS leadership has 

a responsibility to identify efficiencies and inefficiencies within its agency programs to realign and 

reallocate funding more effectively. A serious 

internal review of how dollars are allocated with 

regard to discovery, development, and delivery of 

cancer-related services is required. There are 

many examples of duplication of services and 

programs within HHS. Some cancer programs of 

uncertain efficacy receive funding while other 

more efficacious programs remain underfunded. 

Selected examples of programs we consider 

efficacious are: 

• Tobacco programs. 

• National Cancer Institute (NCI) Special Populations Networks and other NCI programs for 

reducing cancer health disparities. 

• Colorectal cancer screening programs, which 

are currently funded on a demonstration basis 

in a limited number of states. 

• The Centers for Disease Control and Prevention (CDC) National Breast and Cervical Cancer Early Detection Program, which is very 

effective. Because of limited funding, however, it is only able to serve 15%-18% of the 

eligible population nationwide. This program’s funding needs to be expanded to cover 

100% of women who meet eligibility criteria 

for its screening services. 

• The CDC National Program of Cancer Registries and the NCI Surveillance, Epidemiology, 

and End Results Program, which are essential 

to state cancer planning and identification of 

populations that experience cancer health 

disparities. 

• The Health Resources and Services Administration (HRSA) Community Health Center 

Program, which needs adequate funding to enable the adoption of proven, effective cancer 

control collaborative models and guidelines. 

Issues of Importance 

The short-term goal of this PRG priority recommendation is a realignment of funding within 

HHS. The long-term goal is continued support of 

programs proven to be essential to the elimination 

of cancer health disparities. The PRG understands that a comprehensive internal review of 

HHS programs could potentially be a lengthy and 

administratively laborious process. The commitment of HHS leadership and staff is required for 

the success of this endeavor. 

The HHS Cancer Health Disparities Program and 

Project Database described in Appendix B is a 

good starting point for conducting the review. It 

is recommended that HHS assign an office or 

agency for updating and maintaining this database 

over the long term. 

To ensure objectivity, the review must be independent. Input from community representatives is 

advised, including input from the members of this 

PRG and its Roundtable participants. 

A critical component for implementation of this 

recommendation is the set of criteria used for determining whether a program is evidence based. It 

is recommended that common terms and metrics 

be adopted to support such determinations. 

When conducting the review, it is important to 

consider the maturity of the programs being 

evaluated. Because some programs have not been 

in existence long enough to have accumulated 

sufficient results, there needs to be a way of 

ensuring that such programs are not automatically 

disqualified from receiving additional funding. 

These programs should be reviewed from the 

perspective of their ability to contribute to an 

evidence base. [

4 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Assemble a Federal Leadership Council on 

Cancer Health Disparities led by the HHS 

Secretary in partnership with the Secretaries 

of other appropriate Federal departments to 

mobilize available resources in a comprehensive national effort to eliminate cancer health 

disparities. 

Planning and Coordination, for Initiation within 1 Year

Rationale 

Cancer health disparities occur within the broad 

context of human circumstances that encompasses 

behavioral, cultural, educational, environmental, 

genetic, and socioeconomic factors. Because 

cancer health disparities transcend the scope of 

HHS, it is pertinent to include other appropriate 

Federal departments. Specifically, the PRG 

envisions that the Secretary should assemble a 

Federal Leadership Council on Cancer Health 

Disparities that would partner with the Secretaries 

of other appropriate Federal departments to 

mobilize available resources in a comprehensive 

national leadership effort to eliminate cancer 

health disparities. 

Just as the Secretary commissioned the Cancer 

Health Disparities Progress Review Group to 

consider solutions to cancer health disparities for 

the first time from a Trans-HHS perspective, a 

Federal Leadership Council on Cancer Health 

Disparities would elevate the concerns and 

leverage resources government-wide to make 

cancer health disparities a thing of the past. 

Implementation of this far reaching PRG 

recommendation would benefit from the 

endorsement of the White House. 

Issues of Importance 

After assessing how the various departmental 

policies and programs affect health and health 

disparities, the Federal Leadership Council would 

establish specific goals and targets, and ensure 

monitoring and accountability. The Council 

would also provide an opportunity to discuss a 

broad range of issues and challenges that impact 

cancer health disparities. The efforts of the 

Council should be made accessible to the public. 

Federal departments and agencies that might 

participate in the Council include: 

• Department of Agriculture 

• Department of Defense 

• Department of Education 

• Department of Energy 

• Department of Housing and Urban 

Development 

• Department of Justice 

• Department of Labor 

• Department of Transportation 

• Department of Veterans Affairs 

• Environmental Protection Agency [

Implement, in all HHS health service and 

reimbursement agencies, the recommendations from the Institute of Medicine Report 

entitled Unequal Treatment: Confronting 

Racial and Ethnic Disparities in Healthcare. 

Planning and Coordination, for Initiation within 3 Years 

Rationale 

In addition to addressing many broad societal 

issues, the report Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare 

[1] documents the problems associated with 

cancer care disparities and offers practical and 

specific solutions. Appendix C includes the 

recommendations from the report and shows how 

those recommendations align with the PRG 

recommendations in our Call to Action. 

Issues of Importance 

To implement the recommendations from the 

Unequal Treatment report, HHS will need to: 

• Develop new surveillance tools to verify that 

cancer patients are receiving equal treatment. 

Because inequities have been demonstrated, 

these tools are needed in the effort to assess 

the role of barriers to quality health care. 

• Magnify and support community involvement 

in the design and transformation of health 

care delivery systems. Strong community 

partnerships are vital to the continuum of 

cancer care from disease prevention to 

detection to treatment to survivorship. 

• Develop a culturally competent health care 

workforce, which requires increasing 

recruitment and retention of members of 

minority groups. [

Our Call to Action for Eliminating Cancer Health Disparities 5 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Discovery 

Challenges and Opportunities 

It is highly unlikely that cancer health disparities 

can be eliminated in the absence of additional 

discovery. Research is required to expand and 

update our knowledge base on the extent and 

causes of cancer health disparities and to apply 

this knowledge to the identification of new 

intervention strategies. 

Unfortunately, research in the field of cancer 

health disparities is hindered by: 

• The diversity of factors giving rise to cancer 

health disparities 

• The difficulty in recruiting sufficient numbers 

of participants for research studies 

• The absence of agreed-upon terminology and 

methodological approaches 

Table 1 shows the complex nature of this research. Progress can be accelerated by conducting research in a transdisciplinary setting 

that synergistically combines different areas 

of expertise and emphasizes cultural and 

community points of view. This Trans-HHS 

Cancer Health Disparities PRG is but one 

example of how a transdisciplinary approach can 

be effectively used. 

Another matter to address is that some communities are distrustful of scientists and the institutions 

they represent. It is not unusual for a study deemed of high importance by a funded investigator to 

be deemed of low importance by the community 

being studied. It is also common for a community 

to never receive information after a study has been 

completed. We feel that these problems and the 

impact they have on recruitment and retention of 

study participants can be mitigated by increased 

funding and support for community-based participatory research (CBPR). CBPR allows a greater 

number of minority investigators and community 

members to be directly involved in research 

planning and execution. 

Although Federal standards exist for characterizing the major racial and ethnic groups [3], there is 

currently no agreement on how to scientifically 

characterize the subpopulations that experience 

health disparities within these groups. There is 

also no national consensus on measures of 

inequity and its determinants. Adopting and 

applying minimum standards for data collection 

and reporting will provide the opportunity to more 

readily compare different studies and acquire 

evidence of an intervention’s benefit in a more 

efficient manner. 

Table 1. The Complex Nature of the Research Required on Cancer Health Disparities 

Assessing the 

Extent of the Problem 

Determining the 

Underlying Causes 

• Cancer surveillance and outcomes research to 

address: 

– The full spectrum of disparities and their effects 

– Characteristics of populations affected by disparities 

– The number of people affected by disparities 

– The magnitude of effects produced by disparities 

(e.g., extent of decrease in quality of life, disability, 

and years of life lost) 

• Cancer biology and medical anthropology research to address biologic 

factors that affect disproportionate cancer incidence and death rates 

(e.g., genetic susceptibility) 

• Cancer etiology studies to address the interactions among biologic, 

environmental, and behavioral factors that result in disproportionate 

cancer incidence and death rates 

• Cancer control, social science, health services, and marketing 

research to identify behavioral and cultural factors that influence how 

available cancer services are utilized by providers and patients 

6 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Priority Recommendations 

Evaluate specific grant and contract processes to determine what additional steps are 

needed to enhance the cultural competence, 

representative composition, and methodological expertise of peer review panels for cancer 

health disparities research. 

Discovery, for Initiation within 1 Year 

Rationale 

The current process for peer review of cancer 

health disparities research proposals within HHS 

agencies is thought to be limited by inadequate 

diversity in the constitution of review panels. 

Specific grant and contract review groups may 

need to be enhanced with the necessary expertise, 

knowledge, and experience to fairly review cancer 

health disparities research proposals and/or 

projects. 

Issues of Importance 

This evaluation will confirm whether additional 

trans-HHS approaches are needed to support and 

conduct cancer health disparities research that 

spans multiple disciplines and levels of study. 

Representation and input are required from experts, such as those who participated in this PRG 

and Roundtable, and lay people who would potentially benefit from the proposed research. [

Establish new approaches for data collection 

and sharing to aid in the study of the effects of 

cancer and their relationship to variables such 

as race, ethnicity, and socioeconomic status. 

Discovery, for Initiation within 2 Years 

Rationale 

The measurements and methods currently used to 

report on cancer health disparities and on terms 

such as “race,” “ethnicity,” and “socioeconomic 

status” are often missing or incomplete. As such, 

they handicap efforts to understand and reduce 

societal inequities. In addition, good sources of 

health information, such as those developed by the 

Indian Health Service, are not being routinely 

used. 

Recognized problems that could be addressed by 

this recommendation include: 

• Redundancy in data collection, storage, 

management, and use by HHS agencies 

• Nonstandardization in data collection, 

formatting, and dissemination 

• Loss of opportunities for a comprehensive 

cancer control program to set research 

priorities and identify communities in need 

• Lack of communication and collaboration 

among HHS agencies 

Identification and monitoring of cancer health disparities require coordinated, standardized, and 

continuous collection of high-quality data. Without Federal-level directives, such as the 1997 

HHS Policy for Improving Race and Ethnicity 

Data,6 it is difficult to establish consistent data 

formats and categorizations for comparisons 

across data sets. 

Current theories, measures, and data collection 

modes were developed and standardized primarily 

within the Northern European-derived U.S. population. Although they are assumed to be generally 

applicable to diverse populations, there is significant and ample evidence to the contrary. 

Issues of Importance 

The Department should mandate that HHS agencies develop standards, timelines, personnel, 

infrastructure, and funding to set up a coordinated 

cancer health disparities informatics approach. 

The existing databases should be reviewed to 

ensure that they are consistent with the demographic categories used in government to define 

our current understanding of disparities. Where 

feasible, new measures, such as those based on 

life experiences and cultural factors, should be 

incorporated. 

Measures and methods must be developed to 

quantify cancer health disparities. A committee of 

the National Academy of Sciences could be 

charged to outline a strategy for developing a core 

set of measures on race, ethnicity, and socioeconomic status (SES) for use in the collection, 

monitoring, and reporting of health disparities. 

6

 Policy posted at 

http://www.hhs.gov/oirm/infocollect/nclusion.html (last 

accessed on January 21, 2004). 

Our Call to Action for Eliminating Cancer Health Disparities 7 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Geocoding (i.e., assignment of geographic identifiers) of cancer data would also facilitate linkage 

to other geocoded data such as area-based SES 

and environmental data. If all HHS-collected data 

were geocoded, researchers could access important social- and contextual-level variables of the 

populations identified. This would allow for 

improved analysis and monitoring of cancer 

health disparities and facilitate the use of 

geocoded data in reports for state and local health 

departments. [

Increase the proportion of HHS agency support targeted specifically to disease prevention, health promotion, evaluation, and translational research on cancer health disparities. 

Discovery, for Initiation within 2 Years

Rationale 

In the next few years, the biggest reduction of 

cancer morbidity and mortality will derive from 

application of what we have already learned about 

disease prevention, early detection, and treatment. An imbalance currently exists between the 

focus of the health care system on treating illness 

and the emphasis that should be placed on health 

promotion, disease prevention, evaluation, and 

translational research. Health promotion and 

disease prevention are underfunded and reimbursement mechanisms are inadequate to support 

full implementation of culturally relevant and 

effective health promotion and disease prevention 

strategies. 

Notably, little is known about how health promotion and disease prevention strategies may work 

differentially in populations suffering disproportionately from cancer. There is also a gap in our 

behavioral knowledge regarding why different 

people accept or reject health-promoting 

behaviors or available health services. 

Issues of Importance 

It is time to challenge the research model that 

emphasizes the treatment of disease-induced 

morbidity at the expense of disease prevention 

and health promotion. The research efforts arising 

from this PRG recommendation should take into 

consideration the context of neighborhoods and 

where people live. The efforts need to address 

relevant intergenerational influences that can be 

translated and widely disseminated to the broader 

populations. They should all include scientific 

inquiry from lifespan, mental health, and 

emotional well-being perspectives. [

Establish partnerships for and support the 

development of sustainable community-based 

networks for participatory research in areas of 

high cancer disparities. 

Discovery, for Initiation within 3 Years 

Rationale 

Cancer health disparities research currently suffers from lack of community engagement in the 

research process, poor recruitment and retention 

of research subjects, and delayed or incomplete 

clinical trials. Implementation of this PRG 

priority recommendation would result in the 

following impacts: 

• Beneficial engagement and increased participation of targeted communities in the research 

enterprise 

• Generation of research ideas at the local level 

to reduce cancer health disparities 

• Enhanced likelihood of the adoption of beneficial and relevant research results at the 

individual and community level 

This recommendation is designed to increase 

community participation in creating a sustainable 

structure for conducting efficient research on 

cancer and other diseases or conditions for which 

disparities exist and for translating collaborative, 

multidisciplinary research into action. Historically, funding has been inadequate to fully support 

the infrastructure requirements to conduct highquality, population-based research on cancer 

health disparities. The requirements include 

technology, training, scientific oversight, and the 

costs associated with research-specific patient 

care and participant recruitment. 

Issues of Importance 

Funding needs to be directed to entities within 

those communities that are impacted by health 

disparities and are interested in partnering with 

researchers. It is necessary that: 

• Adequate rigor and high scientific standards 

are maintained. 

• Legitimate and documentable community 

participation in networks is ensured. 

8 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

• Culturally, linguistically, and literacy appropriate consent forms are used to obtain true 

informed consent from those who will be 

participating in the research efforts. 

• Research strategies found effective are 

documented and disseminated for future 

testing and use across communities and 

populations. 

Three types of support are envisioned: 

• Grants for research planning (e.g., seed 

money grants) 

• Developmental funding support, which must 

be for a minimum period of 7 to 10 years 

• Matched supplemental funding to sustain 

networks in the outer years 

Implementation of this priority recommendation 

requires identifying geographic areas of large 

disparities, examining the health resource 

structures of the community, and recruiting 

community leadership. Geographic dispersion of 

the networks and diversity of population 

participation should be a priority. [

Development 

Challenges and Opportunities 

Research on cancer health disparities has identified interventions that appear effective at reducing 

disparities in small groups of people under 

controlled conditions. What remains unclear, 

however, is whether these interventions or types 

of interventions would be effective in larger 

groups of people or in groups of people with 

different characteristics. Additional development 

work is therefore needed to establish the general 

applicability of promising new interventions. 

Challenges for development of interventions 

directed against health disparities include: 

• Access to a sufficient number of individuals 

within a single population to rigorously 

evaluate the intervention. 

• Difficulty of conducting randomized, controlled trials, regarded by some as the only way in 

which evidence can be collected, for certain 

types of interventions (e.g., community-based 

policies and communication interventions). 

• Establishing criteria for demonstrating an 

intervention’s effectiveness. 

We believe that these challenges can be overcome 

by establishing partnerships that build trust and 

create a forum for open discussion. 

Priority Recommendations 

Develop and implement a new trans-HHS initiative to qualify high disparity geographic 

areas for special program designation as 

Communities Empowered to Eliminate Disparities. would qualify for the 

program by submitting strategic plans to 

reduce specific cancer disparities for 

identifiable populations. 

Development, for Initiation within 2 Years

Communities 

Rationale 

Cancer care and cancer health disparities are local, 

and solutions must originate within the community. Interventions must be implemented and 

sustained in the community, and the amount of 

time generally required to fully realize gains is 

longer than the typical grant cycle. HHS should 

establish a new trans-HHS initiative to qualify 

high disparity geographic areas for special program designation as “Communities Empowered to 

Eliminate Disparities” or CEEDs and provide 

support for community-based efforts within these 

areas. The program would designate CEEDs 

based on strategic plans developed by the communities, outlining how they would carry out 

improvements to a continuum of cancer care that 

would effectively reduce specific cancer disparities for identifiable populations. 

This approach would empower communities to 

assume responsibility for their own health care. It 

would also spur public-private partnerships to 

help sustain effective initiatives and programs. 

This type of approach has been successful in 

targeting efforts, creating communication and 

Our Call to Action for Eliminating Cancer Health Disparities 9 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

partnerships, and focusing on holistic and longterm problems and impacts. Local communities 

can best define the access, financing, and research 

issues faced by their populations with health 

disparities. 

Through this initiative, communities that have 

populations with health disparities would develop 

accountable plans and partnerships with multiple 

HHS agencies. They would be given priority in 

their applications to Federal discretionary service 

and research programs for educating communities 

about effective measures for reducing cancer 

incidence and risk. 

Issues of Importance 

We have several suggestions for HHS implementation of this priority recommendation. 

• Support for the initiative might be generated 

through a mechanism such as a trans-HHS 1% 

program tap. 

• Substantial funds should be awarded through 

block grants7

 that extend over several years, 

based on strategic plans developed by the 

communities involved. These plans would be 

based on: 

– Analysis of cancer mortality, incidence, and 

risk factor data to describe and quantify 

types of cancer disparities and populations 

affected. 

– Service gap analysis. 

– Assessment of related community knowledge, beliefs, and behaviors. 

– Evaluation of past or existing targeted cancer programs of service, financing, and 

research. 

– Assessment of and intention to address all 

stages of the continuum of cancer care. 

– Potential use of evidence-based HHS 

programs that originate within the CDC, 

Centers for Medicare and Medicaid 

Services (CMS), HRSA, and NCI. 

– Coordination with other government programs, such as economic incentives for 

establishing a cancer center in a CEED 

made available through the Department of 

7

 Block grants are flexible lump sum awards made to state or 

local governments to address a specific topic area. 

Housing and Urban Development or school 

lunch programs that follow healthy dietary 

guidelines supported in a CEED by the 

Department of Agriculture. 

– Educational needs of providers and 

consumers. 

– Needs for access to clinical trials. 

– A proposed plan and timeline for integrating multiple programs, community health 

providers, and external organizations. 

– The formation of new partnerships, with 

contributions from and benefits to each 

partner. 

– Ensuring that community advocates are 

incorporated, supported, and sustained in 

discovery, development, and delivery activities conducted in support of cancer care. 

– Establishment of an evaluation plan, under 

the guidance of appropriate cancer control 

experts, that includes multiyear outputs 

(services), outcomes (health indicators), and 

impacts (system changes). 

• CEEDs would be given priority in HHS funding through competitive grants. Service programs with research evaluation and regulation 

waivers would receive favorable consideration 

(e.g., CMS service eligibility and benefits). To 

ensure progress and a reduction of cancer 

health disparities, a comprehensive evaluation 

process that utilizes effective assessment tools 

should be developed. Each designated CEED 

should be required to demonstrate efficacy and 

be evaluated on an annual basis. 

• It will be important for HHS to reach out with 

a compelling message to communities that 

potentially qualify for the program to raise 

awareness of the opportunity to apply and to 

communicate the benefits of undertaking such 

a process. 

• All strategic plans developed under this initiative should focus on evidence-based intervention methods and measurable outcomes that 

lead to and can document the elimination of 

one or more cancer health disparities within 

that particular community. Although the 

initiative would be national in scope, addressing different types of cancers and different 

populations with health disparities, the 

specific disparities targeted within each 

10 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

community would be particular to that 

community. [

Develop, implement, and evaluate education 

and training programs designed to create a 

diverse and culturally competent cancer care 

workforce. Apply standards to certify the 

cultural competence of health professionals 

who receive Federal support. 

Development, for Initiation within 2 Years 

Rationale 

Promotoras (Latina community outreach workers), community lay workers, certified medical 

interpreters, and patient navigators are all healthrelated professionals who are retained for the 

express purpose of providing culturally competent 

assistance to individuals who have or are at risk of 

developing cancer. We feel that some level of 

cultural competence needs to extend to the entire 

cancer care workforce. 

This PRG recommendation is directed at a system-wide approach for institutionalizing cultural 

competence. Increased funding is essential for 

developing and systematically evaluating education and training programs for reducing health 

disparities through cultivation of culturally and 

linguistically competent health professionals who 

are representative of the communities they serve. 

The education and training necessary to increase 

cultural competency need to begin as early as 

kindergarten, extend through high school and into 

higher education, and include opportunities for 

nontraditional students. 

Issues of Importance 

HHS should review all of its minority education 

and career development programs and partner 

with the Department of Education; other Federal, 

state, and private agencies; and communities to 

leverage resources and better coordinate efforts to 

increase the diversity of people entering healthrelated professions. 

Educational training opportunities, such as continuing medical education courses, should be 

developed for and by the community to promote 

the cultural and linguistic competence of health 

professionals and staff. Once education and 

training programs become available, it will be 

important to systematically evaluate over time the 

success of the programs in building a better prepared workforce and the impact of such programs 

on the populations they serve. Key to the evaluation will be determining which programs are most 

effective at different times. Once there is evidence demonstrating the benefit of the programs 

in reducing cancer and other health disparities, 

evidence-based approaches for cultural and 

linguistic competence training should be: 

• Incorporated as a core requirement in examination plans for licensure, relicensure, or 

certification for health professionals 

• Linked to accreditation by the Joint 

Commission on Accreditation of Healthcare 

Organizations and professional licensing 

• Certified in recipients of Federal funding 

(both health care providers and institutions) 

HHS has already developed standards that can be 

applied to certification of cultural and linguistic 

competence. [4] Implementation of these standards would be analogous to the requirement that 

funded investigators demonstrate competence in 

their ability to protect human subjects during research studies or that policies be in place to ensure 

a drug-free work environment. Our suggestions 

for ensuring a culturally competent workforce 

include conducting appropriate monitoring for 

compliance, documenting training and infractions 

in human resource files, and levying penalties for 

noncompliance. [

Delivery 

Challenges and Opportunities 

Cancer health disparities will not be eliminated 

until all individuals derive equal benefit from 

required services in cancer prevention, detection, 

diagnosis, treatment, survivorship, and end-of-life 

care. This requires: (1) equality in the quality 

Our Call to Action for Eliminating Cancer Health Disparities 11 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

of services delivered, which is driven by policy, linguistic, and other factors on the “receiving” end 

economic, and other factors on the “giving” end of the pathway. Table 2 suggests barriers to 

of the health services delivery pathway, and eliminating cancer health disparities on both sides 

(2) equality in the ability to benefit from the of the delivery pathway. 

services delivered, which is driven by cultural, 

Table 2. Barriers to Delivering Cancer Services to All People 

at a Consistent Level and Quality 

Giving End Receiving End 

• Cancer services are not being delivered as a continuum of 

care. 

– A large number of Americans do not receive any type of 

preventive services. 

– Many individuals, including those who are at elevated risk, 

are not screened for detectable cancers. 

– In many instances, there is no provision of follow-up care 

after a positive screening result. 

– There are often long delays between biopsy and initiation 

of treatment. 

– Physicians who are not adequately trained in adult or 

pediatric oncology are providing treatment that is 

substandard. 

– There are terminally ill patients who never receive end-oflife care or do so too late to be of benefit. 

• Federal, state, and local agencies are neither implementing 

policies that have already been endorsed nor enforcing 

regulations that have already been made into law. For 

example: 

– Title VI of the Civil Rights Act 

– National Standards for Culturally and Linguistically 

Appropriate Services in Health Care adopted in late 2000 

– Various antidiscrimination laws 

• Health care delivery systems are resistant to consider elimination of health disparities as a worthy goal for resource 

investment due to factors that include: 

– High initial cost 

– Absence of tangible rewards 

• Cost-cutting measures being applied by health care delivery 

systems and payer organization have a greater adverse effect 

on populations with low socioeconomic status. 

• Cancer service providers allow racism and other biases to 

affect their job performance. 

• Individuals distrust the cancer prevention information and 

early detection services that they receive from those not 

within their own community. 

• Cultural, religious, and traditional tribal beliefs are not always 

compatible with evidence-based or best-available medical 

practices. 

• Individuals are unable to access services because of cost 

barriers that include: 

– Lack of insurance or Medicaid coveragea 

– Underinsurance (i.e., insurance that does not cover stateof-the-science preventive or treatment services) 

– Inability to take time off from a job to receive needed 

services 

• Individuals are unaware of available services, unable to 

access services, or unable to derive benefit from services 

because of communication barriers that include: 

– Not being able to speak English 

– Low literacy 

– Hearing, sight, or cognitive impairment 

• Individuals are unable to access services because of physical 

barriers that include: 

– Geographic isolation 

– Lack of transportation 

– Inconvenient hours of service 

– Frailty or physical disability 

– Competing life demands 

a Findings of the President’s Cancer Panel [2] indicate that 44 million people have no health insurance and nonelderly 

uninsured rates are as high as 25% in some states. An additional 31 million nonelderly insured Americans have inadequate 

coverage for cancer care costs. 

12 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

We believe that the barriers are ultimately 

surmountable and that progress can be made 

toward eliminating disparities in delivery of cancer 

services through: 

• Changes in policy, including better implementation of existing Executive Orders, so 

that public health care financing mechanisms 

(i.e., Medicaid and Medicare) cover cancer 

services fairly and equitably. 

• Judicious use of incentives and disincentives, 

whereby entities that take positive actions 

toward reducing health disparities are rewarded and entities that take no action are 

penalized. We believe that incentives and 

disincentives can be used to: 

– Raise the level of cultural competence and 

reduce the behavioral manifestations of 

racism and other biases. 

– Increase health-promoting behaviors and 

decrease health-degrading behaviors in 

individuals who are at risk for developing 

cancer. 

• Partnerships, in which government agencies, 

payer organizations, provider organizations, 

and communities work together to promote 

knowledge and trust, change policy, and solve 

problems in service delivery. Partnerships 

are most effective when their leadership is diverse and when representatives from the communities being served have equal involvement 

in all stages of planning, execution, and 

follow up. 

• Adapting health information based on the 

specific cultural and linguistic characteristics 

of the communities being served. The Special 

Populations Networks initiative of the NCI 

Center to Reduce Cancer Health Disparities is 

an example of a program that supports development of culturally appropriate materials for 

cancer prevention and control in specific 

populations. 

• Increased interest in and evaluation of the use 

of health advisors who can educate and assist 

individuals from tribal and other communities 

in a culturally competent manner. Patient 

advocates, patient navigators, community lay 

workers, promotoras, and certified medical 

interpreters can ensure that patients 

understand their risks, diagnoses, and 

treatment options and can improve access to 

the continuum of care required for favorable 

outcomes. 

Priority Recommendations 

Implement evidence-based tobacco control 

strategies, including those that create financial disincentives for tobacco consumption 

and those that provide social reinforcement 

for not smoking. 

Delivery, for Initiation within 1 Year 

Rationale 

Tobacco smoking leads to higher incidence of 

cancer among certain populations and a strong 

evidence base supports the effectiveness of policy 

changes and prevention and cessation interventions to reduce tobacco use. [5,6] Proven interventions that should be broadly implemented 

include: 

• A Federal excise tax as recommended by the 

Subcommittee on Cessation of the Interagency Committee on Smoking and Health8 

• Comprehensive community-based, combined 

with school-based, smoking prevention 

programs targeted to adolescents 

• Cessation services, including pharmacotherapy (drug-based treatment) and counseling 

Issues of Importance 

Available data are conclusive in demonstrating a 

decline in cigarette smoking or sales after cigarette 

prices are increased. [6] This is especially true 

for young, adolescent, and low-income adult 

smokers. [

8 The Interagency Committee on Smoking and Health was 

established in 1985 to coordinate the smoking-related 

activities of HHS with those of other Federal, state, local, and 

private agencies. The Committee’s website is http:// 

www.cdc.gov/tobacco/ICSH (last accessed on January 21, 

2004). 

Our Call to Action for Eliminating Cancer Health Disparities 13 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Ensure that populations at highest risk have 

access to age- and gender-appropriate screening and follow-up services for breast, cervical,

and colorectal cancer. lude 

these services for other cancers (e.g., prostate 

and lung) when there is evidence that they are 

effective at improving survival. 

Delivery, for Initiation within 2 Years

Expand to inc

Rationale 

There is solid and ample evidence demonstrating 

that appropriate screening with follow-up treatment for breast, cervical, and colorectal cancers 

will significantly impact survival. [6] The CDC 

National Breast and Cervical Cancer Early Detection Program (NBCCEDP) was established in 

1991 in response to the 1990 Breast and Cervical 

Cancer Mortality Prevention Act. Since passage 

of this act, the U.S. Preventive Services Task 

Force (USPSTF)9

 has reviewed the accumulated 

evidence and determined that there is also benefit 

to screening adults, ages 50 or older, for colorectal 

cancer. [7] 

In 2000, Congress passed the Breast and Cervical 

Cancer Treatment and Prevention Act to help 

make follow-up services more accessible, through 

state-managed Medicaid programs, to women enrolled in the CDC program who are found to have 

breast or cervical cancer or a related precancerous 

condition. Benefit can only be obtained and justice can only be served when screening is coupled 

with follow-up services. Thus, follow-up services 

are a mandatory part of the implementation of this 

PRG recommendation. We also recognize that, 

with the recent economic slowdown, states with 

growing budget deficits are carefully reviewing 

their Medicaid expenditures. This may serve as 

an additional barrier to full follow-up and treatment for patients in the CDC program with 

abnormal screening results. 

9

 The Agency for Healthcare Research and Quality (AHRQ) 

U.S. Preventive Services Task Force is an independent panel 

of experts in primary care and prevention that systematically 

reviews the evidence of effectiveness and develops recommendations for clinical preventive services. The USPSTF 

website is http://www.ahrq.gov/clinic/uspstfix.htm (last 

accessed on January 21, 2004). 

Issues of Importance 

The NBCCEDP is an important program that aids 

many, but not all, women who are uninsured and 

otherwise unable to access services for early 

detection of cancer. Expansion of the program 

should be explored so that it includes more 

community-based organizations and is no longer 

largely dependent on public health agencies. 

Once additional cancer screening techniques are 

recognized as effective by the USPSTF, these 

techniques should be added to ongoing cancer 

screening and wellness programs. [

Support culturally, linguistically, and literacy 

specific approaches for eliminating cancer 

health disparities. should include 

evidence-based “best practices,” proven 

interventions, and outreach strategies. 

Delivery, for Initiation within 2 Years 

These

Rationale 

Cancer communications that are culturally, linguistically, and literacy specific contribute extensively to quality cancer care and enhance health 

outcomes. [1,8] Recognizing that linguistic diversity is an integral part of American culture is 

essential for eliminating cancer health disparities. 

A report from the 2000 Decennial Census indicates that 17.9 percent of the U.S. population ages 

5 and older speak a language other than English 

while they are at home. (The most common of the 

other languages spoken is Spanish. However, 

Chinese, Vietnamese, Korean, and Tagalog are 

also commonly spoken.)10 

Currently, there are gaps in our knowledge about 

how interventions shown to be effective in some 

populations can be replicated in other populations. 

Also, there are gaps in our knowledge about the 

risk factors that are of particular importance in 

cancer health disparities. Providing culturally, 

10U.S. Bureau of the Census, American Fact Finder http:// 

www.factfinder.census.gov/ (last accessed on January 21, 2004). 

14 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

linguistically, and literacy specific materials will 

facilitate the formation of racial and ethnic partnerships that can help to effectively bridge these 

gaps through clear communication. In partnership 

with cancer survivors, caregivers, and community 

advocacy organizations that are able to enhance 

the process, these knowledge gaps can be filled. 

Issues of Importance 

We recognize that a large financial commitment 

will be needed to implement this recommendation 

on a national level. HHS should: 

• Establish a mechanism for a two-tier peer review process for evaluating (1) the efficacy 

and effectiveness and (2) the dissemination 

and adoption potential of “best practices” and 

outreach strategies that include community 

input. 

• Establish a central HHS clearinghouse for the 

dissemination of cancer education materials, 

“best practices,” and outreach strategies. 

• Expand resources to make federally collected 

administrative data (e.g., Medicare data) more 

available to researchers and community 

programs. [

Ensure that every cancer patient has access to 

“state-of-the-science” care. 

Delivery, for Initiation within 3 Years 

Rationale 

Ensuring access to the most effective cancer treatment is critical for reducing unnecessary suffering 

and death due to cancer and eliminating inequity 

and social injustice. Lack of adequate insurance 

coverage is the single most difficult barrier to 

achieving this objective. An analysis of data in 

the AHRQ Medical Expenditure Panel Survey 

database for 1996 through 1999 showed that over 

850,000 cancer patients had no insurance. [9] A 

Federal precedent exists for providing lifesaving 

services to those in need. For example, since 

1973, people of all ages with end-stage renal 

disease have been the recipients of Medicare 

benefits. [10] However, as part of the Medicare 

Prescription Drug, Improvement, and Modernization Act of 2003, reimbursement for cancer 

drugs is scheduled to decrease. While Medicare 

coverage now extends to routine patient care in 

clinical trials, additional steps must be taken to 

provide full clinical trials coverage for all 

Americans. 

Issues of Importance 

To implement this PRG recommendation, it is 

necessary that state-of-the-science standards of 

care be defined and disseminated, and that monitoring take place to ensure they are being followed. Ensuring that no person with cancer goes 

untreated is the goal of this recommendation. 

Emphasis should also be placed, however, on cancer prevention and early detection, especially in 

populations with the greatest cancer burdens. [

Collaborate with the private and voluntary 

health sectors to ensure that all Americans 

receive the full range of lifesaving information, 

services, and quality care from cancer prevention to screening to diagnosis to treatment. 

Delivery, for Initiation within 3 Years 

Rationale 

Many people do not have any insurance or sufficient insurance to receive essential cancer services 

in screening, diagnosis, treatment, and other 

aspects of care. It has been shown that people 

without health insurance are diagnosed with 

cancer at later stages and die from cancer at higher 

rates than those with insurance. [11,12,13] 

Those who do not have adequate levels of insurance coverage are subject to the fragmentation that 

results when health care providers have little to no 

information on related co-morbidities and 

psychosocial health issues. 

For some types of cancers (e.g., myeloma and 

brain cancer) or advanced stages of cancer, there 

are limited or no places for patients to go for 

supportive care. Medically underserved populations generally have limited or no access to 

palliative or end-of-life care. 

Current health care reimbursement systems are 

insufficient. Eliminating health disparities requires targeting of resources to the geographic 

areas and groups of people that display the highest 

avoidable mortality rates. As the department 

responsible for public health care reimbursements, 

HHS is in a position to lead the way in this 

important effort. 

Our Call to Action for Eliminating Cancer Health Disparities 15 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Issues of Importance 

Access to health information and quality health 

services should be comprehensive, timely, and 

equitable. These services should include outreach, 

disease prevention, and treatment, and, when 

appropriate, should be integrated with traditional 

healing and alternative medicine-based approaches. Funding should be sustained for these services. 

The ultimate goal of this PRG recommendation is 

to facilitate changes to public and private insurance programs so that they provide full coverage 

for cancer screening, diagnosis, and treatment, 

including cancer-related medications. 

Health care as a right is being widely discussed by 

many stakeholders in this country. A good model 

of how well coordinated, multiple services can be 

provided to those who would otherwise be denied 

access is the pediatric cancer care provided by the 

St. Jude Children’s Research Hospital. This 

hospital covers all costs of treatment beyond those 

reimbursed by third-party insurers and total costs 

at St. Jude when no insurance is available. The 

hospital also assists with transportation costs and 

local living expenses during a child’s treatment 

period. [

16 Our Call to Action for Eliminating Cancer Health Disparities 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

CONCLUSION 

We believe that implementation by the Department 

of Health and Human Services (HHS) of all 14 

Progress Review Group (PRG) priority recommendations in our Call to Action will improve the 

health and health care of those who experience 

cancer health disparities. 

• Through implementation of our recommendations in Planning and Coordination, HHS will 

gain a more robust and cost-effective infrastructure for managing a broad spectrum of 

activities directed against health disparities 

and will increase both the visibility and 

impact of its efforts in this area. 

• Through implementation of our recommendations in Discovery and Development, HHS 

will accelerate the pace at which “best 

practices” are identified and evidence is 

accumulated. 

• Through implementation of our recommendations in Delivery, HHS will reverse the longstanding injustice of allowing Americans who 

have cancer to be treated unequally and will 

reduce cancer incidence and mortality. 

Implementation of our priority recommendations 

will also assist HHS in meeting the overarching 

goals of Healthy People 2010 [14] and the recommendations developed by the other expert panels 

(see Appendix C). 

To allow for flexibility in the required levels of effort, resources, and collaboration, we recommend 

that HHS begin implementing the 14 PRG recommendations over a 3-year period (see Figure 1). 

This PRG report describes our vision of a Nation 

without cancer health disparities and our consensus strategy for turning that vision into a reality. 

We hope that HHS will share in this vision and 

implement our 14 priority recommendations. By 

pursuing a comprehensive and coordinated 

approach, in which all HHS agencies work 

together and are held accountable, and in which 

incentives are aligned to optimize appropriateness, efficiency, and effectiveness, HHS will 

make cancer health disparities history. 

Figure 1. Timeline for Initiation of PRG Priority Recommendations 

Conclusion 17 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

LITERATURE CITED 

1. Unequal Treatment: Confronting Racial and 

Ethnic Disparities in Healthcare. Committee 

on Understanding and Eliminating Racial and 

Ethnic Disparities in Health Care, Board on 

Health Sciences Policy, Institute of Medicine. 

The National Academies Press, Washington, 

DC, 2003. Available at http://www.nap.edu/ 

books/030908265X/html. [Last accessed on 

January 21, 2004.] 

2. Voices of a Broken System: Real People, Real 

Problems. President’s Cancer Panel. Report 

of the Chairman, 2000-2001. Bethesda, MD. 

2003. Available at http://deainfo.nci.nih.gov/ 

ADVISORY/pcp/video-summary.htm. [Last 

accessed on January 21, 2004.] 

3. Recommendations from the Interagency 

Committee for the Review of the Racial and 

Ethnic Standards to the Office of Management 

and Budget Concerning Changes to the 

Standards for the Classification of Federal 

Data on Race and Ethnicity. Office of 

Management and Budget. 1997. Federal 

Register 7/9/97, Part II. Pages 36873-36946. 

Available at http://www.whitehouse.gov/omb/ 

fedreg/directive_15.html. [Last accessed on 

January 21, 2004.] 

4. National Standards for Culturally and 

Linguistically Appropriate Services. U.S. 

Department of Health and Human Services. 

2001. Office of Minority Health. Full Report 

and Commentary. http://www.omhrc.gov/ 

clas/cultural1a.htm. [Last accessed on 

January 21, 2004.] 

5. The Unequal Burden of Cancer: An 

Assessment of NIH Research and Programs 

for Ethnic Minorities and the Medically 

Underserved. Committee on Cancer Research 

among Minorities and the Medically 

Underserved, Health Sciences Policy 

Program, Health Sciences Section, Institute of 

Medicine. National Academy Press, 

Washington, DC, 1999. Available at 

http://www.nap.edu/ books/0309071542/html. 

[Last accessed on January 21, 2004.] 

6. Fulfilling the Potential of Cancer Prevention 

and Early Detection. National Cancer Policy 

Board, Institute of Medicine and National 

Research Council. The National Academies 

Press, Washington, DC, 2003. Available at 

http://www.nap.edu/books/0309082544/html. 

[Last accessed on January 21, 2004.] 

7. Guide to Clinical Preventive Services: Report 

of the U.S. Preventive Services Task Force. 

Second Edition. U.S. Preventive Services 

Task Force. 2000. Washington, DC: Office 

of Disease Prevention and Health Promotion. 

Available at http://odphp.osophs.dhhs.gov/ 

pubs/guidecps/default.htm. [Last accessed on 

January 21, 2004.] 

8. LaVeist TA, Nickerson KJ, and Bowie JV. 

Attitudes about racism, medical mistrust, and 

satisfaction with care among African American 

and white cardiac patients. Medical Care 

Research and Review 2000;57 (Supplement 

1):146-161. 

9. Thorpe KE and Howard D. Health Insurance 

and Spending among Cancer Patients. Health 

Affairs Web Exclusive. April 2003. 

Available at http://content.healthaffairs.org/ 

cgi/reprint/hlthaff.w3.189v1.pdf. [Last 

accessed on January 21, 2004.] 

10. Robinson K, Ricca L. AAKP Reviews 30 

Years of the Medicare ESRD Program. 

aakpRENALIFE, Vol. 17, No. 6. May 2002. 

11. Ayanian JZ, Kohler BA, Abe T, and Epstein 

AM. The relation between health insurance 

coverage and clinical outcomes among women 

with breast cancer. N Engl J Med. 1993 Jul 

29;329(5):326-31. 

12. McDavid K, Tucker TC, Sloggett A, and 

Coleman MP. Cancer survival in Kentucky and 

health insurance coverage. Arch Intern Med. 

2003 Oct 13;163(18):2135-44. 

13. Roetzheim RG, Pal N, Tennant C, Voti L, 

Ayanian JZ, Schwabe A, and Krischer JP. 

Effects of health insurance and race on early 

detection of cancer. J Natl Cancer Inst. 1999 

Aug 18;91(16):1409-15. 

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14. Healthy People 2010: Understanding and Office, November 2000. Available at 

Improving Health. 2nd ed. U.S. Department of http://www.healthypeople.gov/ Document. 

Health and Human Services. 2000. [Last accessed on January 21, 2004.] 

Washington, DC: U.S. Government Printing 

Literature Cited 19 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Appendix A 

Reports of the Roundtable Breakout Groups

Table of Contents 

Methods, Measurement, and Reporting ....................................................................................................A-3

Enhancing the Level and Quality of Health Disparities Research............................................................A-7

Research Policy.........................................................................................................................................A-9

Access to Quality Cancer Services .........................................................................................................A-15

Culturally Competent Health Care Systems ...........................................................................................A-21

Facilitating Partnerships for Action ........................................................................................................A-25

Implementing Evidence-Based Programs to Reduce Cancer Health Disparities....................................A-29

Culturally and Linguistically Competent Education and Training .........................................................A-33

Inequity and Social Injustice...................................................................................................................A-37

Changes and Implementation of Public Policy .......................................................................................A-39 

Bibliography ...........................................................................................................................................A-45 

Appendix A – Reports of the Roundtable Breakout Groups A-1 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

METHODS, MEASUREMENT, AND REPORTING 

Co-Chairs: 

• Robert A. Hiatt 

• Marjorie Kagawa-Singer 

Participants: 

• Nancy E. Adler 

• Peter B. Bach 

• Gayle Clutter 

• Kaytura Felix-Aaron 

• Nancy Krieger 

• Thomas A. LaVeist 

• Michelle B. Marrs 

• Vickie M. Mays 

• Suzanne Heurtin-Roberts 

• Ninez Ponce 

• David Takeuchi 

• Emmanuel A. Taylor 

• Bailus Walker, Jr. 

• Richard Warnecke 

Introduction 

An effective program to reduce inequities in cancer outcomes among different subpopulations 

within the United States requires a foundation of 

rigorous methods, appropriate measurement, and 

informative reporting. The Trans-HHS Cancer 

Health Disparities Progress Review Group provides the opportunity to consider the current status 

of methods, measurement, and reporting relative to 

cancer health disparities and to offer recommendations for improvement. 

Clear descriptions of disparities and the major 

factors believed to be responsible for them are 

essential. Standardized definitions and means of 

characterizing subpopulations are needed to 

identify those that sustain the adverse effects of 

disparities, facilitate comparisons in research 

findings across and among subpopulations, and 

assess progress over time. A national consensus 

on core measures of inequity and its determinants 

is critical. Definitions and measures must be 

constructed emphasizing applicability and utility 

in both research and programmatic settings. 

Efforts to establish and consistently support 

mechanisms and procedures for the routine 

collection of appropriate measures and the generation of regular periodic reports that monitor the 

cancer burden, the magnitude of disparities in 

cancer outcomes, and trends in these measures 

over time are crucial elements for eliminating 

cancer health disparities. 

Characterizations of populations at the national 

and state level, where racial/ethnic groups are 

usually defined by Directive 15 from the Office of 

Management and Budget (OMB), need to be 

disaggregated into more homogeneous population 

groups. This is needed to provide a more accurate 

picture of disparities at a local level, identify 

where the largest inequities occur, and target 

effective interventions to alleviate them. While 

reduction in mortality remains the ultimate outcome and goal for actions to reduce cancer health 

disparities, the full spectrum of outcomes must be 

included, from prevention through early detection 

and treatment to life after cancer and its impact on 

emotional health and quality of life along the 

entire cancer care continuum. 

A federally led program to reduce cancer health 

disparities will be challenging to implement. One 

vital methodologic approach to facilitate its realization is transdisciplinary research that synergistically combines expertise across a wide range of 

disciplines, including (but not limited to) biology, 

pharmacogenetics, and the behavioral and social 

sciences. Focused on common health issues, 

transdisciplinary research methods and teams are 

uniquely able to develop or refine conceptual 

models that incorporate multiple perspectives and 

more effectively capture the inherent complexity 

of health disparities. Methodologies developed in 

such cooperative settings help disentangle the 

relative contributions of cultural, behavioral, and 

biological factors and physical and social environments to observed disparities, as well as the 

dynamic, synergistic relationship that exists 

among these domains. Integration of all these 

levels in research designs is a vital step for understanding cancer health disparities as well as in 

designing interventions effective in reducing or 

eliminating them. 

A number of transdisciplinary research efforts 

have recently received Federal support, among 

Appendix A – Reports of the Roundtable Breakout Groups A-3 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

them the National Cancer Institute’s Transdisciplinary Tobacco Use Research Centers, the Centers for Population Health and Health Disparities, 

the National Center for Minority Health and 

Disparities, and other centers supported by institutes at the National Institutes of Health. The 

Trans-HHS Cancer Health Disparities Roundtable 

itself is a prime example of such a transdisciplinary effort in a programmatic setting. The support of the Federal government for these and like 

endeavors needs to be reaffirmed, expanded, and 

continued over the long term. 

The policies and practices of Federal agencies 

have a substantial impact on efforts to reduce 

cancer morbidity and mortality. Many of the 

elements of programs effective in attacking cancer 

health disparities are appropriately developed, 

promulgated, regulated, and reported at a national 

level. However, the impact of Federal policies 

can be a double-edged sword as illustrated by 

OMB Directive 15 and its definitions of race and 

ethnicity. On the one hand, the OMB categories 

are widely accepted as standard, perhaps most 

significantly in the U.S. Census. It is by using 

these standard definitions that we have described 

and monitored cancer health disparities in the first 

place. On the other hand, these categories follow 

sociopolitical realities rather than more scientificcally derived designations that take into account 

the complex interaction of culture, life experiences, and biology. From a scientific perspective, 

the standardization provided by the OMB classification is unfortunate, as it tends to confound or 

disguise underlying factors and to inhibit the 

ability to examine the effects of race or ethnicity 

as opposed to race or ethnicity as risk factors in 

and of themselves. 

We recognize the unique opportunity afforded by 

the Trans-HHS Cancer Health Disparities Roundtable to make a substantial long-term nationwide 

impact on cancer care and outcomes by promoting 

changes in Federal policies and practices. Our 

consensus recommendations focus on the social, 

contextual nature of the challenge and emphasize 

what can be accomplished within the resources of 

the Department of Health and Human Services 

(HHS). Two priority recommendations are process-oriented, recommending means to establish 

workable and scientifically productive standards 

in key areas. The third priority recommendation 

specifically proposes to include geographical 

location of residence as a data category routinely 

collected by health agencies, promoting a major 

increase in the scope of potential scientific investigations at minimal cost. 

Priority Recommendation 1. 

HHS should require Federal agencies and strongly 

encourage state, local, and nongovernmental agencies 

to use a standardized minimum core set of measures of 

“race and ethnicity” and socioeconomic status in the 

collection and reporting of data. 

Rationale 

Only coordinated, standardized, and continuous 

collection of high-quality data will allow HHS to 

accurately describe cancer health disparities and 

monitor progress in removing them. Only 

Federal-level leadership can establish consistent 

data formats and categories for comparability 

across data sets (see Priority Recommendation 2). 

Such leadership on this central issue by HHS, 

perhaps working through a congressional mandate, 

would emphasize the fundamental need for collection of data on “race and ethnicity.” Establishing a 

“core” set of measures serves the purpose of 

providing comparability across population groups 

while acknowledging that regional and local 

settings will have needs for unique measures to 

reflect distinct cultural and other aspects of local 

populations. A set of core measures is a “floor,” 

not a “ceiling,” for state and local jurisdictions. 

Standardized core measures of the more dynamic, 

cultural, and socioeconomic factors that may 

affect behavior are missed in the terms “race” and 

“ethnicity.” Capturing such changes may require 

expansion of OMB Directive 15. 

Issues of Importance 

• Consensus on definitions and categories is 

required. 

• Existing standards to characterize populations 

that provide denominators for critical rates 

(e.g., U.S. Census), although imperfect, 

should be linkable to new HHS data collection 

efforts. 

• Additional research is required to address the 

need to continually develop and modify core 

measures. 

A-4 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Priority Recommendation 2. 

HHS should commission a National Academy of 

Sciences committee to assess and monitor crosscultural equivalence of theoretical models, methods, 

measures, and modes of administration underlying data 

collection with diverse populations. 

Rationale 

Current theories, measures, and modes of administration have been developed and standardized 

primarily within the majority population of 

peoples of European origin and assumed to be 

generalizable and appropriate for diverse populations. Evidence exists that the assumption of 

universal validity is not accurate. 

Issues of Importance 

• Measures to define and quantify health 

disparities that would facilitate the identification and monitoring of critical inequities 

need to be considered. 

• There should be broad participation by groups 

concerned about cancer health disparities 

(e.g., departments and centers) in meetings 

convened to work concurrently on defining 

these concepts and identifying promising 

factors that impact health disparities. 

• Ongoing development and monitoring are 

needed; this cannot be a one-time effort. 

Priority Recommendation 3. 

HHS should require geocoding of all health records to 

latitude and longitude or to census tract to facilitate 

linkage to other geo-referenced data. 

Rationale 

Geocoding facilitates linkage to other geo-referenced data (e.g., area-based socioeconomic data, 

other social characteristics, and environmental 

data) that would expand the scope of studies by 

including social and contextual level variables 

(e.g., community resources, hospitals, clinics, and 

physical environmental data). This would enable 

the analysis and monitoring of cancer health 

disparities and facilitate the use of geocoded data 

in state and local health department reports. 

Issues of importance 

• Current software permits rapid, inexpensive 

geocoding as address data are entered at the 

first point of contact with the health care 

system. 

• Nationwide standardization is essential. 

Additional Recommendations 

Other suggestions for HHS action are to: 

• 

• 

• 

• 

• 

• 

• 

• 

• 

Develop procedures and funding allocations 

to permit field testing of methodological 

questions pertaining to cancer health disparities within a wide range of studies. 

Mandate multilingual surveys in areas with 

linguistic minorities so that more representative samples of the various ethnic groups are 

included. 

Increase funding of cancer registries to promote more complete collection of data that 

help define and monitor disparities. 

Involve regional and local community groups 

in identifying specific mechanisms for interpreting and disseminating research results to 

communities through collaborative efforts 

utilizing a Participatory Action research model. 

Include time variables in analysis of health 

status. 

Expand the use of intra-group research to identify subpopulations within the broad OMB 

Directive 15 racial/ethnic groups to identify the 

various barriers to standard cancer screening 

and treatment, the causes of such barriers, and 

the policies needed to remove them. 

Focus reporting on targeting areas for improvement rather than on aggregate burden, 

including reporting of disease- and agespecific statistics. 

Promote the use of mixed quantitative and 

qualitative research methods to investigate 

health disparities. 

Encourage, through policies and funding, 

research to clarify the role of gene-environment interactions in cancer health disparities. 

Appendix A – Reports of the Roundtable Breakout Groups A-5 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Conclusion 

An effective program to reduce cancer health 

disparities requires a foundation of rigorous 

methods, appropriate measurement, and informative reporting. 

Appropriate methods for investigating health disparities minimize cultural bias and insensitivity 

that hinder attempts to develop representative 

samples of subpopulations. Such methods efficiently obtain information from representative 

samples of relevant subpopulations. They coordinate synergistic efforts of researchers from fields 

as wide ranging as biology, genetics, and the 

behavioral and social sciences. Measurements 

appropriate to productive methods of investigation 

focus on observable quantities and qualities likely 

to elucidate key determining factors in health 

disparities. These are characterized in standard, 

comparable terms applicable in both research and 

programmatic settings. Informative reporting 

assembles, analyzes, and processes data regularly 

and routinely collected on appropriate measures. 

Results are presented in terms of important outcomes in sufficient detail to gauge status and 

progress and to direct interventions at remaining 

inequities. 

The Methods, Measurement, and Reporting 

Breakout Group recognizes the Federal government’s unique ability to establish and promote 

standards for nation-wide use and has proposed a 

set of priority recommendations for applying it in 

ways of value to scientific inquiry and program 

development. 

A-6 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

ENHANCING THE LEVEL AND QUALITY OF HEALTH DISPARITIES RESEARCH 

Co-Chairs: 

• John E. Maupin, Jr. 

• Claudia R. Baquet 

Participants: 

• Nancy Breen 

• William A. Darity 

• Robert Dittus 

• Jennie R. Joe 

• Paul D. Juarez 

• Mireille B. Kanda 

• Vickie M. Mays 

• Edith P. Mitchell 

• Augusto C. Ochoa 

• Edward Trapido 

• Reuben Warren 

Introduction 

While racial, ethnic, and other types of disparities 

in health have been documented for decades, 

“health disparity research” has not been adequately described or defined. [1] Research on cancer 

health disparities is a complex undertaking that 

requires multifaceted, multidisciplinary, and 

interdisciplinary research. 

Community resistance and distrust of research and 

researchers are significant barriers. There is a 

need to expand the capacity and cadre of investigators trained and committed to health disparities 

research. There are also inequities in the distribution of research funding targeted to health 

disparities. 

Therefore, enhancing the level and quality of 

cancer health disparities research is highly dependent upon significant advances in the structure 

(research infrastructure), process (funding mechanisms), and content (research focus) relating to 

such efforts. 

Priority Recommendation 1. 

HHS should provide the funds necessary to fully develop and sustain community-based participatory research 

resource support networks that focus exclusively on 

multidisciplinary cancer health disparities research, 

independent of individual project funding. 

Rationale 

• Engagement of the affected communities in 

research enhances the likelihood of the adoption of beneficial and relevant research results 

at the individual and community level. 

• This recommendation is specifically designed 

not only to increase community participation 

to translate the research into action, but also to 

create a sustainable structure for the efficient 

and effective conduct of research on other 

disease/conditions where disparities exist. 

• Historically, grant funding for cancer disparities research has been inadequate to fully 

support the infrastructure requirements for the 

conduct of high-quality population-based research. Specifically, more support is needed 

for technology, training, scientific oversight, 

patient care related to research, and outreach 

efforts related to increasing disparity population participation. 

• A collaborative process of conducting research of value to a community involves 

investigators working with the community in 

all phases of the research—defining the problem, developing hypotheses to guide action, 

deriving specific aims, designing approaches, 

implementing methods, analyzing and disseminating results, and developing courses of 

action. 

Issues of Importance 

• Developmental funding support must be for a 

minimum period of 7 to 10 years. 

• Sustainability funding should be provided in 

the later years at some lesser percentage. 

• Adequate rigor and high scientific standards 

must be maintained. 

• Legitimate and documentable community 

participation in networks must be ensured. 

• It is important to have an academic institutional link with each network. 

• Funding should be directed to entities within 

the community that are impacted by health 

disparities. 

• Geographic dispersion of funded networks 

and diversity of population should be 

emphasized. 

Appendix A – Reports of the Roundtable Breakout Groups A-7 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Priority Recommendation 2. 

Establish specific peer review grant and contract 

entities and processes that have the necessary 

expertise, knowledge, and experience to fairly and 

equitably evaluate health disparities research proposals 

and/or projects. 

Rationale 

• The current peer review process is limited and 

inadequately constituted to enable the fair 

evaluation of the quality of health disparities 

research, which is often multidisciplinary. 

• There is a need to enhance the cultural competence and composition of peer review 

panels. 

Issues of Importance 

• New structures are needed that enable transagency health disparities research. 

• The inflexibility and lack of necessary expertise in the existing peer review system are 

often addressed by the establishment of ad 

hoc and/or special review panels. 

• Consumers should be represented on Institutional Review Boards. 

Priority Recommendation 3. 

Significantly increase the proportion of funding within 

each agency of HHS targeted to prevention, health 

promotion, and translational cancer health disparities 

research with an emphasis on efficacy, effectiveness, 

and cost effectiveness. 

Rationale 

• Over the next several years, the biggest impact on morbidity and mortality will come 

from advancements in prevention, early detection, timely treatment, and health promotion. 

• A disconnect exists between the health care 

system’s emphasis on treatment, and the need 

for more disease prevention and health 

promotion. Health promotion and disease 

prevention research are underfunded, and 

reimbursement mechanisms are inadequate to 

support the full implementation of culturally 

relevant and effective health promotion and 

disease prevention strategies. 

• Little is known about what prevention and 

health promotion strategies work in different 

populations. 

• There is a gap in behavioral knowledge of 

why different people accept or reject appropriate health behaviors or take advantage of 

health services. 

Issues of Importance 

• The deficit research model must be challenged. 

• Research efforts must be considered in a contextual perspective, viewing issues from the 

context of neighborhoods and where people 

live. 

• In designing research efforts, consideration 

should be given to relevant intergenerational 

influences that can be translated and widely 

disseminated to the broader populations. 

• Disease prevention and health promotion 

research must also include scientific inquiry 

from a lifespan, mental health, and emotional 

well-being perspective. 

• Greater focus should be placed on the acceptance and implementation of relevant translational research results, including resource 

adjudication, cost-benefit, and feasibility 

analyses. 

• Culturally, linguistically, and literacy appropriate consent forms are necessary to allow true 

informed consent for disparity populations. 

Conclusion 

Health disparities research is an important tool for 

eliminating disproportionate disease burden in a 

variety of populations including racial and ethnic 

groups. Well-designed disparities research should 

be the foundation for clinical practice and behavioral interventions as well as for policy formulation on health disparities. 

Literature Cited 

1. Baquet CR, Hammond C, Commiskey P, 

Brooks S, and Mullins D. Health disparities 

research—A model for conducting research 

on cancer disparities: Characterization and 

reduction. Journal of the Association for 

Academic Minority Physicians 13(2):33-40, 

April 2002. 

A-8 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

RESEARCH POLICY 

Co-Chairs: 

• Fatimah L. C. Jackson 

• Eduardo M. Sotomayor 

Participants: 

• Lawrence Agodoa 

• Kenneth A. Bertram 

• Linda Brown 

• Thomas J. Glynn 

• JoAnn M. Minor 

• Jose Russo 

• Kevin U. Stephens, Sr. 

• Edward Trapido 

• Barbara K. Wingrove 

Introduction 

The traditional model of population-based research incorporates a cyclical process wherein 

agencies fund a scientist who then seeks the target 

population in which to test the research hypothesis. In places where the researcher is not a 

member of the community, contacts or liaisons 

within that community are often enlisted to help 

recruit participants for the research trial. When 

the trial is completed, the researcher analyzes the 

data and presents findings to the scientific community. Successful research results in more funds 

to continue the cycle. 

This model has been successful for many diseases 

and in many populations; however, significant 

barriers of this model limit the effectiveness in 

certain populations. These barriers include 

(1) inadequate dialogue with a community to 

design studies that the community is most interested in pursuing; (2) inadequate feedback to the 

community about results of trials and discussion 

of potential outcomes; (3) inadequate delivery of 

tangible results to the community; (4) slow recruitment of participants; (5) attrition of participants leading to insignificant results; and (6) lack 

of support for young, minority researchers with 

well-designed proposals to reach communities in 

which they may be accepted as research 

investigators. 

Such barriers and other cultural and societal factors have influenced certain communities to 

distrust clinical scientists and to perpetuate an 

anti-participatory sentiment. These attitudes may 

extend beyond a distrust of the scientist, to 

encompass distrust of contacts/liaisons in the 

community, resulting in difficulties in recruiting 

and retaining patients. 

One successful model of clinical research has 

been that of international community-based 

research programs (e.g., the investigation in 

Shandong Province, China for treatment of gastric 

lesions). [1] Researchers enlisted physicians and 

community leaders in those countries to help 

educate both the researchers and the participants 

about each other’s needs and expectations. As a 

result, researchers were more culturally aware, 

and local physicians and leaders participated in 

the research design. Tangible benefits for those 

communities were also arranged in advance (e.g., 

providing a supply of the interventions being 

tested to that community following the study). 

An alternative model for conducting domestic 

epidemiology and intervention clinical trials on 

some populations should be considered. In this 

model, researchers should become more integrated with the community and should have 

greater cultural sensitivity to the populations 

being studied. Potential participants may require 

incentives, education, and dialogue to be comfortable with the process and their role in the process. 

Some tangible benefit should be delivered to 

research trial groups, and possibly the larger 

community, that experience a high burden of the 

targeted disease. 

Priority Recommendation 1. 

Establish a trans-HHS database that centralizes and 

standardizes cancer and cancer-related data. 

Rationale 

Currently multiple agencies across the Department of Health and Human Services (HHS) 

(including Centers for Medicare & Medicaid 

Services [CMS], Centers for Disease Control and 

Appendix A – Reports of the Roundtable Breakout Groups A-9 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Prevention, and National Cancer Institute [NCI]) 

collect, store, and analyze information about 

health trends (including incidence and mortality 

due to specific cancers) in various populations; 

however, the data collected are not standardized, 

nor are the different databases compatible. In 

addition, redundancies exist in data collected by 

different agencies. These redundancies in collection and difficulties sharing the data maintained in 

different agencies contribute to inefficient data 

collection, maintenance, analysis, and dissemination. The incompatibility of databases limits 

researchers to using only one database for studies, 

which is an impediment to more comprehensive 

examinations needed to identify communities with 

health disparities and attempts to conduct research 

within those populations. In addition to HHS 

epidemiological databases, databases exist at the 

Federal, state, and local government levels and at 

non-governmental and private organizations that 

are not compatible. 

Issues of Importance 

The Secretary of HHS can mandate that agencies 

develop standards, timelines, personnel, infrastructure, and funding to set up a centralized, 

accessible database. In an initial phase, all 

epidemiological databases across HHS could be 

centralized into a single, standardized database. 

All new data would be imported into the single 

database that would be fully accessible across 

agencies and to the research community. By 

maintaining a single database with standardized 

data reporting, HHS could facilitate rapid analysis 

of gaps in data, trends in data, and opportunities to 

target populations more rapidly than could be 

done with the current system of multiple sets of 

incompatible data. In the long term, a universal 

epidemiologic database will save money by reducing redundancy of data collection and reducing 

the maintenance of multiple database systems. 

The mandate would also require the adoption of 

standard measures for population data collection 

by HHS agencies. For entities not explicitly part 

of HHS, including non-Federal government 

agencies and non-governmental organizations, 

HHS would provide incentives to adopt the same 

data standards and shared database collection. 

Another short-term opportunity that would stimulate health disparities research is an examination 

of the current databases to identify consistent 

examples of regional/local health disparities. 

Research on particular populations would refine 

the scope of health disparities, as well as evaluate 

the impacts of specific behavioral and medical 

interventions on those communities. These data 

could be used to identify early trends in cancer 

incidence and mortality as well as co-morbid 

conditions in those populations. 

Creating a single, unified epidemiologic database 

will enable rapid analyses of health disparities. 

These analyses will enable public health researchers to deliver results to health care professionals in 

communities that have a high burden of selected 

diseases and to accelerate the identification of 

vulnerable populations for early screening and 

treatment modalities. By finding populations with 

high burdens of specific diseases, tailored education to those communities may be used to 

influence preventive behaviors and medical 

decisions to reduce disparities. 

Priority Recommendation 2. 

Establish, recruit, fund, and evaluate community research infrastructures (units), in areas of large cancer 

disparities, to collaborate in all stages of the research 

process. 

Rationale 

Among the different communities at high risk for 

specific cancers are distinct populations that are 

also indifferent to requests for participation in research trials or are outright anti-participatory. The 

reasons for these responses vary but may include 

one or more of the following: (1) a general distrust of the biomedical research and medical 

service enterprises, (2) a perceived history of condescending attitudes and even unethical behavior 

by researchers toward subjects, (3) inadequate 

knowledge about the scientific method by participants, (4) a lack of tailored education and discussions with communities to alleviate concerns 

about the process, and (5) inadequate cultural 

awareness of different communities on the part of 

researchers. 

Negative community attitudes about biomedical 

studies result in poor recruitment and poor retention of research subjects. Failure to complete 

clinical trials is expensive and leads to further 

resentment in communities that had hoped to 

A-10 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

benefit from the new results and interventions. 

Trials that are prolonged and extended become 

burdensome on participants, which in turn can 

lead to higher attrition rates. Additionally, the 

lack of community engagement in the research 

process is perceived as a lack of compassion and 

interest in the community, and this perpetuates the 

sense of distrust of any research program. 

Issues of Importance 

Infrastructures (“units”) that work within a community to facilitate clinical research investigations 

can be established in areas of large health disparities. These research mediators would be 

independent from researchers, universities, and 

other research entities. The units would be fully 

integrated within a community, and they would 

educate the community, encourage community 

members to participate in research, and advocate 

for tangible outcomes for the community following the completion of research trials. The units 

would also (1) assist researchers who seek a 

population to study, (2) encourage collaborations 

with researchers from underrepresented populations, and (3) facilitate the recruitment and 

planning processes for conducting trials. The 

composition of personnel in these units would 

vary according to their need, but would likely 

include a sociologist, a grants/contracts specialist, 

an epidemiologist, and a clinical trials nurse. 

Recent examples of community research centers 

(e.g., Community Clinical Oncology Programs) 

and networks have shown promise for a future of 

research units maintained at the community level. 

Established centers or networks may be modified 

to develop these units, or units may be newly 

created. 

The initiation of this program would require the 

identification of health disparities in communities 

and the examination of the health structure of such 

communities to evaluate potential locations for 

units. Individual units would recruit leaders in 

those communities. Research planning seed 

grants would be provided to initially fund these 

units, and as units are developed, funding 

mechanisms would be incorporated to sustain 

successful units. The units would facilitate and 

promote partnerships with experienced researchers and help recruit new investigators from underrepresented groups to study health disparities. 

Programs to recruit students and interns to learn 

about the scientific method and to assist with 

these programs would be encouraged. 

Potential impacts of these units would benefit 

both the community and researchers. Information 

on simple, preventive behaviors and tangible medical service would be provided to the community. 

Additionally, education of these communities in 

medical science would improve the recruitment 

and retention of research participants and would 

lead to more trials that are of greater importance 

to the community. Real dialogue between clinical 

researchers and the community would enable the 

latter to participate in the planning of trials to the 

extent that health issues critical to them are 

considered. These units would be able to act as 

brokers of the community looking for researchers 

who are studying diseases of great importance to 

that community, in addition to their role as 

brokers for researchers seeking participants in 

trials. 

Priority Recommendation 3. 

Establish an HHS center to evaluate and translate cancer disparities research and coordinate implementation 

of the findings. 

Rationale 

Cancer health disparities research will achieve 

optimal impacts in society when there are institutional mechanisms to accelerate and coordinate 

(1) the development phase of clinical research, 

(2) the transition from development to delivery, 

and (3) the adoption of new standards of care in 

those communities with greatest need. HHS requires a comprehensive overview and centralized 

authority to accelerate research and enable the 

transition from development to delivery for the 

most vulnerable populations. Likewise, no 

mechanism exists that supports the delivery of 

research advances back into the communities who 

participated in trials. 

Issues of Importance 

The current model of clinical research focuses on 

the results of the trial and the basic safety of the 

participants; however, this model is not designed 

to address other needs of individuals recruited to 

participate in the trial and their immediate community. Participants in clinical trials for screening 

and treatment interventions are typically only 

Appendix A – Reports of the Roundtable Breakout Groups A-11 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

involved as research subjects in the project for the 

duration of the trial. Often following a trial, 

participants and their communities do not receive 

responses from the research team describing the 

results and potential impacts of the investigation. 

In many clinical trials of screening techniques, 

subjects who have cancers detected and who are 

either underinsured or uninsured do not receive 

adequate treatment for their disease. Likewise, in 

higher risk communities from which subjects in 

research trials were recruited, there is no mechanism to deliver affordable screening and treatment 

to the entire community. 

Barriers to the goal of universal delivery of 

screening and treatment practices to all Americans exist. Offering standards of practice to all 

high-risk, uninsured, and underinsured Americans 

living in communities where clinical trials are 

conducted would be a prohibitive financial burden. Clinical trial investigators are not experts in 

community dynamics or policies to benefit communities and may not realize the expectations of 

the community. Investigators are not required to 

report the results and the potential impacts of the 

research to participating communities following 

the completion of clinical trials. 

HHS, National Institutes of Health, and NCI do 

not have adequate mechanisms for the seamless 

transition of new interventions from development 

to delivery. The transfer process is unguided and 

can result in delays in delivering new interventions and practices. Likewise, no mechanisms 

like the CMS support for interventions-based 

clinical trials exist that ensure appropriate treatment for those underinsured and uninsured 

patients in whom cancers are detected in 

screening trials. 

HHS can create a national center that has authority and accountability for the seamless transfer of 

research findings from development to delivery, 

ensuring greater care for people at higher risk for 

specific diseases. This organization should be a 

central authority that receives results from clinical 

trials, evaluates the findings for potential delivery, 

and guides the transfer of new interventions from 

development to be delivered to physicians and the 

communities with the greatest need. This center 

should engage in reciprocal communication with 

community centers, networks, and other units of 

clinical research, as well as linking researchers 

with research units. A challenge for this center 

will be the adoption of practices that encourage 

clinical researchers to more fully integrate with 

participants and their communities as well as to 

find mechanisms for the delivery of beneficial 

knowledge, practices, and interventions to those 

communities from which trial participants were 

recruited. Finally a central agency can work with 

other agencies to ensure that practices and interventions are disseminated to populations with 

greatest need. 

The impact of this center on specific communities 

with higher incidence of disease should be felt at 

both the development and delivery phases. Building goodwill between the community and the research community, and improving communication 

between these groups could lead to additional 

trials being conducted within the community with 

more rapid recruitment and completion. Improving the perception of research programs and 

medical professionals might also improve the 

acceptance of behaviors suggested by medical 

professionals to reduce individual risks of 

diseases. Guidelines for behaviors and practices 

of care will be better evaluated, established, and 

disseminated to these communities with heightened need. These guidelines will enable the 

delivery of equal care across diverse and vulnerable communities to eliminate cancer health 

disparities. This center will accelerate the flow of 

research on cancer health disparities from discovery through development and into delivery. 

Conclusion 

The model proposed here is to introduce a community-based component to the general model of 

clinical research. Community research units 

could be established in communities at higher risk 

for certain diseases and could build a relationship 

with those communities. These units could become immersed in the culture and learn about the 

needs of the community. These units would be 

expected to identify and hold dialogues with 

community and advocate leaders and to educate 

physicians and the broader community. These 

units could help communicate the plans of the 

researchers to the community and the needs and 

expectations of the community to the researchers. 

The benefits of implementing a new model of 

clinical trials outreach wherein researchers are 

A-12 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

better integrated with the community, are antici- Literature Cited

pated to be an improvement in the relationship 1. Gail MH, et al. Factorial trial of three between the researchers and participants, im- interventions to reduce the progression of provement in the recruitment of participants 

for clinical research, and delivery of a tangible precancerous gastric lesions in Shandong, 

benefit to those communities. China: Design issues and initial data. 

Controlled Clinical Trials 1998;19:352-369. 

Appendix A – Reports of the Roundtable Breakout Groups A-13 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

ACCESS TO QUALITY CANCER SERVICES 

Co-Chairs: 

• Linda Burhansstipanov 

• Momi Kaanoi 

Participants: 

• Duiona R. Baker 

• Suzanne Feetham 

• Angel Rubio 

• E. Richard Brown 

• M. Carolina Hinestrosa 

• Edward Trimble 

• Elizabeth K. Cooke 

• Mildred Hunter 

• James E. Williams, Jr. 

• Paula Espinosa 

Introduction 

Within the next year, it is expected that over 

550,000 Americans will die from cancer, equivalent to three jumbo jets going down every day 

with no survivors. While it is widely acknowledged that all Americans should have access to 

quality cancer care, funding to provide comprehensive high-quality cancer services lacks political support. Insurance coverage is also lacking. 

Currently, 44 million Americans have no health 

insurance. [1] Uninsured rates are as high as 25% 

of the nonelderly in some sites, with much higher 

rates in some rural and frontier regions. In addition, at least 31 million non-elderly insured 

Americans are underinsured for cancer care costs. 

[2] Primary care providers and specialists should 

be permitted to refer patients to oncologic health 

care professionals or facilities outside the payer’s 

network if medically necessary services are not 

available with the plan. Payers must provide 

ready access to pediatric oncologists, recognizing 

that childhood cancers are biologically distinct. 

Payers should provide patient access to and coverage of the patient care costs associated with 

participating in government-approved clinical 

trials. 

Increased education of caregivers and consumers 

is needed. Health professionals often lack knowledge of how cultural and social factors influence 

health care. Many primary care providers, especially in rural and remote areas, lack information 

about cancer and current practices in cancer care. 

Not knowing how to get needed care within the 

health system is a barrier to obtaining quality 

cancer care. Information regarding health risks 

associated with increased cancer risk needs to be 

taught in the education system. Patients should be 

full participants in all decisions regarding care, 

have a clear understanding of their diagnosis, and 

have an awareness of all treatment options and the 

risks and benefits associated with each option. 

Comprehensive and integrated services are needed. Fragmented cancer care systems do not ensure 

access to care, lack coordination, and contribute to 

inefficient use of resources. Partnerships between 

community-based organizations and care providers need to be promoted and funded. Public health 

care payers such as Medicaid should strive to help 

beneficiaries access the same health care products 

as privately insured patients. Cancer care requires 

that the patient have access to a multidisciplinary 

team of cancer providers across the full continuum 

of care and coordination of services. Timely 

referral for end-of-life care should be provided 

so that terminal cancer patients do not suffer 

needlessly. 

Priority Recommendation 1. 

Assure access to comprehensive (prevention, screening, diagnosis, treatment, quality of life, palliative, end 

of life), continuously funded, integrated health care for 

all people, including insurance coverage. 

Rationale 

Comprehensive Health Care 

A holistic approach to health care and health promotion is needed (i.e., prevention, screening, 

diagnosis, treatment, quality of life, palliative, and 

end of life). When someone is diagnosed with 

cancer, the patient should be provided with the 

best possible care. They need a health care 

system where the provider has appropriate knowledge and experience regarding the particular 

cancer treatment needed. 

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Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Integrated Health Care Priority Recommendation 2. 

Cancer care should be integrated so that the interrelated issues of different types of disease that 

may impact cancer (e.g., stroke and diabetes) are 

addressed appropriately. The health care providers should know what other care the patient is 

receiving. Providers often have little to no information regarding related co-morbidities and 

psychosocial health issues. For some cancers, 

(e.g., myeloma, brain, or advanced stages of 

cancer), there are limited or no places for people 

to go for appropriate health care. There is limited 

or no access to palliative care for medically underserved populations. There are insufficient reimbursement systems, generating insufficient 

incentives for care. Increased integration of 

health insurance and health care systems under 

public oversight is needed to reduce the proportion of health expenditures consumed by administrative costs (including administrative expenses 

at the levels of Federal and state health care programs, health plans, hospitals, physicians’ offices, 

and clinics). States need to be encouraged to 

integrate Medicaid and State Children’s Health 

Insurance Program eligibility categories and 

programs to decrease administrative complexity, 

fragmentation, and to make them user-friendly 

and provide continuous coverage. Pediatric cancer care (e.g., St. Jude Children’s Hospital) is a 

good model of well-coordinated multiple services. 

Insurance Coverage 

Increased insurance coverage will enable people 

who are presently unable to participate in screening, diagnosis, treatment, and other health services 

to obtain needed health care. Those that are presently medically underserved are being diagnosed 

with cancer at an advanced stage of development. 

Increased insurance coverage will enable earlier 

detection. 

Issues of Importance 

• Comprehensive services should include traditional and healing/alternative medicine. 

• Sustained funding is needed. 

• Public and private insurances need to be 

amended to provide full coverage for cancer 

screening, diagnosis, treatment, and 

medication. 

Provide and sustain funding for coalitions, partnerships, 

and community-based quality cancer services, education, and prevention programs. 

Rationale 

Community-driven initiatives and partnerships are 

fundamental to decreasing disparities in access to 

health care. A more informed population will 

drive increased quality as people and communities 

demand quality care. Adequate and sufficient 

continued funding is needed for coalitions and 

committed partnerships, not “faux” partnerships. 

Issues of Importance 

To improve access to health care, and thus to decrease cancer health disparities, initiatives and 

partnerships need to be based in and include 

communities where these disparities occur. Community involvement should occur from the start 

and throughout all aspects of programs. Hard-toreach populations need to be involved. Emphasis 

on men’s health issues and access to clinical trials 

is needed. The Department of Health and Human 

Services (HHS) should: (1) create a system 

whereby all patients have a better opportunity to 

increase their knowledge and understanding of 

treatment choices, efficacy, and pros and cons; 

(2) ensure that communities and the public have 

full information that is relevant to prevention and 

treatment; (3) address mental health issues and 

disease impact on psychosocial issues in order to 

increase accessibility of services; and (4) emphasize strategies that focus on government, communities and individual families’ empowerment. 

Community partners need to be educated and 

given the tools to participate and partner with 

patients, providers, hospitals, universities, and 

organizations to build capacity and infrastructure 

to impact health and wellness in their communities. Federal leadership is necessary to build a 

strong community capacity and infrastructure 

through partnerships at the Federal, state, tribal, 

and local levels that will improve utilization of 

services, improve access to information and treatment, and therefore, improve disparate health 

outcomes. Partnerships that promote education 

and include, support, and sustain community 

advocacy organizations and individual patient 

navigator systems in discovery, development, and 

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Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

delivery of health care will ensure patient access 

to and involvement with quality health care. A 

more informed population will drive increased 

quality as people and communities demand quality care. Examples of successful partnership 

programs include National Institutes of Healthfunded Special Populations Networks and Health 

Resources and Services Administration-funded 

Community Health Centers. These programs and 

other partnerships like them need continued and 

sustained funding, as they work closely with 

communities. 

Efforts are needed to increase men’s awareness of 

behavior modification for cancer prevention, 

cancer screening, and cancer treatment options to 

promote increased participation of men in cancer 

care. Minorities, the medically underserved, and 

rural cancer patients need to be informed of the 

availability of clinical trials and need to be recruited into cancer care clinical trials. Education is 

needed to eliminate the common misconception 

that participation in clinical trials is more costly 

than “standard” cancer care. 

Cancer care is multifactorial, multidisciplinary, 

and multileveled. Once diagnosed with cancer, 

many are lost in the system or do not understand 

their options for the best quality and comprehensive care available. In the process of one person 

being educated about cancer prevention, receiving 

the diagnosis of cancer, obtaining treatment or 

entering a clinical trial, and living with cancer, 

there are many people and steps involved in the 

process. Inevitably, all these factors put in place a 

setup for failure unless communication, coordination of care, and education are all in place. Support of community infrastructure and prevention 

programs also needs to be in place. Community 

advocates provide an invaluable resource to 

patients on individual and community levels. 

HHS should incorporate, support, and sustain 

community advocates in discovery, development, 

and delivery of cancer care. Community advocates and patient navigators should be trained and 

culturally competent to know what the system 

provides (including clinical trials), to provide case 

management throughout the continuum of care, 

and to aid individuals in obtaining maximal access 

to quality care services. Providers and consumers 

need to be educated on communicating their needs 

and intentions and to be continuously informed of 

the process of care. Communities, patients, providers, hospitals, and universities need to know 

their role in the care process. 

Priority Recommendation 3. 

Promote interventions and ensure accountability for 

culturally competent, quality cancer care addressing 

the unequal burden of disease. 

Rationale 

Evidence-Based Medicine 

Evidence-based medicine is a conundrum until 

interventions have been successfully implemented 

within medically underserved communities. 

Science-based medicine must be effectively and 

respectfully implemented within all major ethnic 

groups; elderly populations; people who live in 

poverty; people who live in frontier, rural, or 

small urban communities; both genders; people 

who have physical or mental disabilities; and 

homosexuals. Although evidence-based medicine 

or interventions exist for the non-Hispanic white, 

middle class population, it cannot be assumed that 

these interventions are equally efficient within 

underserved communities. This is in part due to 

the lack of infrastructure, fragmentation of health 

and cancer care, and cultural differences. Evidence-based interventions need to be available to 

community organizations that can partner with 

scientists to adapt these interventions to be acceptable to the local communities. Evidence-based 

interventions will promote quality and save 

money. In the meantime, underserved communities cannot be denied funding for other cancer care 

interventions that appear to be effective, but have 

not yet met the criteria of science-based medicine. 

Clinical Trials 

Adequate funding and insurance coverage are 

critical to access quality cancer care (e.g., brachytherapy for early-stage prostate or breast cancer). 

At the present, very few medically underserved 

patients have access to such care. One of several 

strategies to obtaining quality cancer treatment 

may be through increased access to cancer clinical 

trials. There is very low participation in clinical 

trials (prevention, early detection, treatment, and 

quality of life) in medically underserved communities. The current literature cites numerous barriers for the recruitment and retention of women, 

Appendix A – Reports of the Roundtable Breakout Groups A-17 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

minorities, and the medically underrepresented to 

cancer care trials. [3-20] These barriers may be 

related to the type of cancer under study (the cancer may be less common in women or in a specific 

minority group), the site for the conduct of the 

study (e.g., a rural community hospital or clinic), 

or economics of protocol compliance (inability to 

travel or to pay for accommodations or medications). In addition, there is a common misconception that participation in clinical trials is more 

costly than is “standard” cancer care. 

Navigators and Lay Health Advisors 

We need to learn more about how to best utilize 

and train navigators. Culturally competent cancer 

care appears to be feasible through the paid support and training of Navigators/Lay Health Advisors from the respective medically underserved 

communities. [21] Likewise, these trained, salaried liaisons can also provide patient education to 

improve the patients’ skills and knowledge. [22] 

Although these programs differ significantly 

among ethnicities, geographic regions, and health 

care systems, the overall outcomes appear to be 

improved access to quality cancer care, including 

outreach to initial screening and education 

services, throughout palliative and end-of-life 

care. [23] 

Issues of Importance 

• There is a need to improve access to state-ofthe-art cancer treatments for all patients with 

cancer (e.g., clinical trials). 

• Culturally competent recruitment and retention intervention methodologies are needed. 

• Evidence-based research is also highly regarded as being “accountable.” 

Conclusion 

Federal publications have documented insufficient 

and inappropriate care for medically underserved 

communities. There are documented case studies 

of patients waiting more than 6 months from the 

time of biopsy for cancer diagnosis and receipt of 

cancer care. Patients with stage 2 cancer are more 

likely to have progressed to stage 3; this stage is 

significantly more difficult to treat, requires more 

invasive cancer treatments, and results in poorer 

quality of life for both the cancer patient and the 

family. [24] 

The United States is the richest country in the 

world and it is inexcusable to deny poor and medically underserved people access to quality and 

timely cancer services. A lack of adequate private 

insurance should not result in poorer quality of 

life or an inability to access state-of-the-art comprehensive cancer care (i.e., prevention, early 

detection, treatment, quality of life, and palliative 

care interventions). 

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2001;22:91-113. 

Appendix A – Reports of the Roundtable Breakout Groups A-19 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

CULTURALLY COMPETENT HEALTH CARE SYSTEMS 

Co-Chairs: 

• Judith S. Kaur 

• Ho Luong Tran 

Participants: 

• Yvonne Bronner 

• Zora Brown 

• James Hampton 

• Elmer E. Huerta 

• Lovell Jones 

• Amanullah Khan 

• Gena Love 

• Worta McCaskill-Stevens 

• Nelson Robles 

• Walter W. Williams 

Introduction 

In an era of unprecedented privilege and advances 

in medicine, health disparities in minority populations (such as African American, Native American, Asian American/Pacific Islander, Hispanic/ 

Latinos) are increasing rather than decreasing over 

the past decade (Center to Reduce Cancer Health 

Disparities). As documented by a blue ribbon 

panel convened by the Institute of Medicine 

(IOM) in a report entitled Unequal Treatment: 

Confronting Racial and Ethnic Disparities in 

Healthcare [1], these disparities cannot be 

explained away by access-related factors, patients 

turning down care, or appropriateness of 

intervention. Moreover, these disparities occur 

over a wide range of illnesses and diseases and 

remain even after adjusting for socioeconomic 

status. [1] Because they are associated with worse 

outcomes, they are unacceptable. 

Evidence exists of persistent racial and ethnic 

discrimination in most sectors of American life 

including health care. This pattern occurs in the 

context of broader historic and contemporary 

social and economic inequality. [1] As a result, 

minority patients receive a lower quality and 

intensity of health care across a wide range of 

procedures, treatment options, and disease areas, 

cancer included. Studies of the common cancers 

have shown a pattern of persistent under-treatment, [2] late diagnosis, [3] and inattention to 

late-stage issues such as pain control. [4] 

Correcting this pattern will require systemic 

change. 

The rich cultural landscape in the United States, 

which includes varied traditions, attitudes, and 

practices, influences the doctor-patient relationship. The Department of Health and Human Services (HHS) has already established that culture 

and language have considerable impact on how 

patients access and respond to health care services. That premise serves as the basis for a 

report and standards entitled “Assuring Cultural 

Competence in Health Care.” Studies suggest that 

a range of patient-level, provider-level, and 

system-level factors are involved in racial and 

ethnic health care disparities over and above 

access-related factors. 

The culture of medicine and the disease-based 

paradigm can often be incompatible with traditional or cultural beliefs about health and 

wellness. Without communication, respect, and 

understanding of these differences, patients often 

experience a western medical model and system 

that is hostile to traditional ways of dealing with 

health complaints and the promotion of wellness. 

Language incompatibilities significantly compound the difficulties ethnic minorities face when 

attempting to utilize an unfamiliar health care system. It is impossible to receive adequate health 

care when the patient cannot communicate with 

his/her health care provider, rendering health care 

on a par with veterinary care. This makes competent health interpreters and translators a critical 

need for eliminating documented disparities. 

Discrimination and racism within the health care 

system exacerbate disparities. As a result, these 

racial minorities are less likely to receive appropriate diagnostic tests, therapies, and surveillance. 

Therefore, they experience worse outcomes. Until 

the health care system addresses racism at all 

levels within the system, significant gains in 

reducing disparities remain unlikely. 

As a result of important and extensive work by 

blue ribbon panels and working groups, strategies 

for developing a culturally competent health care 

system already exist. HHS and IOM have each 

Appendix A – Reports of the Roundtable Breakout Groups A-21 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

developed recommendations for addressing the Issues of Importance 

systemic problems that result in health care • To achieve cultural competency, health care 

disparities. While not perfect, both sets of providers and institutions must be required to

recommendations represent good first steps for adopt these standards achieving a culturally competent health care 

system. It is time to move from philosophy to • A monitoring system will assess compliance 

commitment to actions. and provide consequences for noncompliance. 

Priority Recommendation 1. Priority Recommendation 3. 

Implement recommendations regarding cancer care 

from the Institute of Medicine Report entitled Unequal 

Treatment: onfronting Racial and Ethnic Disparities in 

Healthcare. 

C

Rationale 

This report addresses many of the broad societal 

issues, documents the problem associated with 

cancer care disparities, and offers practical and 

specific solutions. 

Issues of Importance 

• Because inequities have been demonstrated, 

there is a need to develop tools to verify that 

cancer patients are receiving equal treatment. 

This effort will address racism and other 

barriers to quality health care. 

• Strong community partnerships are vital to 

designing and transforming the continuum of 

cancer care from prevention to detection to 

treatment to survivorship. 

• Developing a culturally competent health care 

workforce includes increasing recruitment and 

retention of minority groups. 

Priority Recommendation 2. 

Update HHS Cultural Competency Standards and mandate compliance with these standards to qualify for 

Federal funding. 

Rationale 

These 14 standards have been published and 

adopted by HHS and serve as a good initial effort 

at creating culturally competent institutions and 

individuals. Updating these recommendations 

will reflect the linguistic needs of special populations. Specific efforts toward implementation are 

required. 

Require all health care professionals on all levels 

(Federal, academic, community, etc.) to have cultural 

competency training. 

Rationale 

Without training, a culturally competent health 

care system cannot become a reality. 

Issues of Importance 

• Appropriate monitoring is needed to ensure 

compliance, document infractions, and levy 

penalties for noncompliance. 

• Specific continuing medical education courses 

dealing with cultural competency need to be 

developed. 

• Participation in cultural competency training 

and cultural competency infractions will be 

documented in Human Resources files. 

• Training in and compliance with cultural 

competency standards should be tied to Joint 

Commission on Accreditation of Healthcare 

Organizations certification and professional 

licensing, relicensing, and reviews. 

Conclusion 

Culturally competent health care systems will be 

able to reduce health care disparities. HHS must 

use its resources and authority to implement these 

much needed reforms. Department-level action is 

required to achieve this end. Because people and 

institutions act out of self interest, HHS should 

employ incentives and disincentives to achieve 

these goals. 

Many national leaders and organizations have 

sacrificed time, effort, and talent. They have 

cajoled and cried for reform. In response, HHS 

and IOM have taken the first steps by eliciting 

recommendations to create a blueprint. Now, it is 

time to build a culturally competent health care 

system. 

A-22 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

“Knowing is not enough; we must apply. 

Willing is not enough; we must do.” 

--Goethe 

Literature Cited 

1. Unequal Treatment: Confronting Racial and 

Ethnic Disparities in Healthcare. Committee 

on Understanding and Eliminating Racial and 

Ethnic Disparities in Health Care, Board on 

Health Sciences Policy, Institute of Medicine. 

The National Academies Press, Washington, 

DC, 2003. Available at http://www.nap.edu/ 

books/030908265X/html. [Last accessed on 

January 21, 2004.] 

2. Imperato PJ, Nenner RP, and Will TO. 

Radical prostatectomy: Lower rates among 

African-American men. J Natl Med Assoc. 

1996 Sep;88(9):589-94. 

3. McMahon LF, Wolfe RA, Huang S, Tedeschi 

P, Manning W, and Edlund MJ. Racial and 

gender variation in use of diagnostic colonic 

procedures in the Michigan Medicare 

population. Medical Care 1999;37(7):712-

717. 

4. Bernabei R, Gambassi G, Lapane K, Landi F, 

Gatsonis C, Dunlop R, Lipstiz L, Steel K, and 

Mor V. Management of pain in elderly 

patients with cancer. SAGE Study Group 

Systemic assessment of geriatric drug use via 

epidemiology. Journal of the American 

Medical Association 1998;279:1877-1882. 

Bibliography 

Ball JD and Elixhauser A. Treatment differences 

between blacks and whites with colorectal cancer. 

Medical Care 1996;34:970-984 

Center to Reduce Cancer Health Disparities, National Cancer Institute, http://crchd.nci.nih.gov/chd/ 

Cleeland CS, Gonin R, Baez L, Loehrer P, and 

Pandya KJ. Pain and treatment of pain in minority 

patients with cancer: The Eastern Cooperative 

Oncology Group Minority Outpatient Pain Study. 

Annals of Internal Medicine 1997;127(9):813-816. 

Dominitz JA, Maynard C, Billingsley KG, and 

Boyko EJ. Race, Treatment, and Survival of 

Veterans with Cancer of the Distal Esophagus and 

Gastric Cardia. Medical Care 2002;40(1 

Supp):14-26. 

Elston Lafata J, Cole Johnson C, Ben-Menachem 

T, and Morlock RJ. Sociodemographic 

differences in the receipt of colorectal cancer 

surveillance care following treatment with 

curative intent. Medical Care 2001;39(4):361-72. 

Harlan L, Brawley O, Pommerenke F, Wali P, and 

Kramer B. Geographic, age, and racial variation 

in the treatment of local/regional carcinoma of the 

prostate. Journal of Clinical Oncology 

1995;13:93-100. 

Merrill RM, Merrill AV, and Mayer LS. Factors 

associated with no surgery or radiation therapy for 

invasive cervical cancer in black and white 

women. Ethnicity and Disease 2000;10:248-256. 

Mitchell JB and McCormack LA. Time trends in 

late-stage diagnosis of cervical cancer: Differences by race/ethnicity and income. Medical 

Care 1997;35(12):1220-1224. 

Optenberg SA, Thompson IM, Friedrichs P, 

Wojcik B, Stein CR, and Kramer B. Race, treatment, and long-term survival from prostate cancer 

in an equal access medical care delivery system. 

Journal of the American Medical Association 

1995;274:1599-1606. 

Appendix A – Reports of the Roundtable Breakout Groups A-23 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

FACILITATING PARTNERSHIPS FOR ACTION 

Co-Chairs: 

• Grazell R. Howard 

• Amelie G. Ramirez 

Participants: 

• Nelvis Castro 

• Kevin Nash 

• Yolanda Partida 

• Bobbie J. Primus-Cotton 

• Angel Rubio 

• Stacy Scott 

• Carlos A. Ugarte 

• Fay H. Williams 

Introduction 

To effectively address the unequal burden of cancer experienced by underserved populations, we 

need to develop novel strategies that leverage 

partnerships among community, governmental, 

and academic segments of society, and that take 

into account the diversity of these population 

groups. Clearly, tailored approaches are needed. 

The communities that suffer disparities in health 

include African Americans, Hispanics/Latinos, 

Asian Americans and Pacific Islanders, and 

American Indians and Alaska Natives, as well as 

those who live in rural areas or impoverished 

elements within inner cities. For each of these 

population groups, unique cultures, needs, and 

burdens pose unique challenges for medical 

providers and governmental agencies. It is difficult for those outside the individual population to 

effect behavior change in the face of such differences. Those in the health care delivery field 

must develop cultural competencies that will help 

them meet the needs of these populations in a 

meaningful way. 

We propose that the most effective route to gaining the required knowledge and trust of these 

populations and making a positive impact on their 

health status is by partnering with groups that are 

an integral part of the community and that advocate for these constituencies. Partnering will 

require carefully planned cooperation that emphasizes mutual trust, respect, and reciprocity. 

The literature on government/community partnerships indicates that entities as varied as state 

governments and the World Health Organization 

have reached the conclusion that health goals can 

be met more effectively by working with existing 

community groups. [1, 2, 3] It is critical that 

community members be involved in the earliest 

stages of planning as well as during implementation. [4] Collaborative relationships that effect 

change require commitment, time, thoughtful 

cultivation, and development to implement strategies tailored to the culture, literacy level, and 

language of the underserved groups. [2, 5] 

Most partnering arrangements cited in literature 

are in their early stages, and their effectiveness 

has yet to be measured. However, some have 

shown results. For example, among women in 

migrant farm-working families, academic/community partnering has made a positive impact on 

breast health. [4] Clearly, accurate and sciencebased information, materials, and resources of the 

Cancer Information Service have proven highly 

valuable for local partner groups. [6] 

In our personal experiences with developing 

community partnerships, we have seen the 

positive impact of collaborative relationships in 

addressing health disparity issues. A partnership 

of three African American women’s groups – the 

National Coalition of 100 Black Women, the 

Women in the NAACP and Alpha Kappa Alpha 

Sorority, Inc. – worked at the grass roots level 

with evidence-based behavior modification techniques to reduce Sudden Infant Death Syndrome 

among African American families as part of the 

“Save our Babies” initiative. Not only had their 

group been one of the first lay groups to be heard 

by an National Institutes of Health council, but 

they also were able to report on their considerable 

success. Another example can be found in collaborative efforts fostered by Redes En Acción, the 

National Hispanic/Latino Cancer Network. Over 

the past 3 years, this National Cancer Institutefunded Special Populations Networks initiative 

has successfully united academic and community 

groups to achieve the common goal of promoting 

cancer research, training, and public education 

opportunities benefiting the Hispanic/Latino 

population. 

Appendix A – Reports of the Roundtable Breakout Groups A-25 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

This breakout group found that opportunities exist 

to make significantly more effective and efficient 

use of partnerships between the Department of 

Health and Human Services (HHS) and community groups in addressing cancer health disparities 

among underserved populations. It is the primary 

aim of this group to identify programs and actions 

that promote awareness of the importance and the 

benefit of partnering among public and private 

organizations. Consequently, it is vital that programs be fostered that increase commitment to the 

cultivation of collaborative relationships. In addition, it will be extremely important to nurture 

healthy community infrastructures and environments conducive to the elimination of cancer 

health disparities. 

Several factors are vital for any action toward the 

development of partnerships among Federal, state, 

local, and community groups. Among them are 

diverse representation of community groups; 

ascertaining the best practices available for partnering; and providing accurate, evidence-based 

material for the partnerships to use to encourage 

health practices. 

Diverse Representation 

To effectively address and eliminate disparities, 

diversity of representation is critical among 

decision makers, policy makers, and researchers 

involved in the partnership, and all partners must 

understand the needs, relevant characteristics, and 

influences in the communities being served. 

Moreover, it is essential that these communities be 

represented among decision, policy, and research 

leadership. Since communities are not static and 

indeed are in a state of constant dynamic flux, it is 

important that senior leadership be kept abreast of 

demographic changes, particularly those that may 

affect the goals and activities of the partnership. 

Throughout the course of the partnership, it will 

be necessary to recruit and retain individuals in 

leadership roles that reflect the diversity of the 

community and to support this leadership in 

understanding the populations that are being 

served. 

Best Practices 

There are successful community/government 

health partnerships. HHS must identify those that 

have proven effective, ascertain their best practices, and investigate how these practices work for 

specific underserved populations. Underserved 

communities may differ in significant ways; 

indeed, their primary commonality may be the 

fact that they experience disparities in health and 

health care. To effectively identify and define the 

best practices, investigators will need to learn 

more about these diverse populations: What 

makes them unique? What makes them different? 

What makes them similar? 

In the end, such a review will help define the best 

practices for each of the underserved communities. The partnerships that work must be identified and analyzed so that they may be replicated 

for various other populations when appropriate. 

To ensure the incorporation of best practices we 

must increase the visibility of these partnerships 

among public and private citizen organizations as 

well as government agencies. The place to begin 

would be with modeling intra-HHS 

collaborations. 

Evidence-Based Programs 

If they are to be effective, programs that are 

evidence-based and sound should be tailored for 

diverse populations. To develop such evidencebased programs, it is urgent to increase research 

conducted by minority researchers and in community-based programs. Also, we must develop 

effective data in the tumor registries for all populations. In addition, the benefits of input from 

community groups to research and government 

organizations must be clearly stated, and open 

lines of two-way communication between the 

community and the research/health agency must 

be maintained. It is vital that accountability be 

ensured at all levels of the partnership. It is 

equally important that partnerships value nontraditional data and that funding be provided to 

support data collection. Similarly, we should 

promote investment in market research to better 

understand behaviors and practices of diverse 

populations. 

Guiding Principles 

In general, the guiding principles for developing 

effective community partnerships include: 

• Communications that build trust 

• Equity among all of the partners 

• Appropriate representation at all levels 

A-26 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

• Mutual benefits and commitment by all 

principals involved in the partnership 

• Accountability and realistic expectations at all 

levels 

Breakout Group Priorities 

The goal of this breakout group is to focus attention on the need to foster, encourage, and develop 

partnerships among government, local agencies, 

and community groups. Such partnerships are 

vital in the ongoing commitment to provide 

underserved populations with an effective continuum of cancer care–the full range including 

prevention, early detection, diagnosis, treatment, 

and survivorship. Equal access for all within our 

health care system is the key to elimination of 

disparities. 

With this goal in mind, the group offers the 

following priority recommendations: 

Priority Recommendation 1. 

Establish a National Informed Health Choices Program 

to educate communities about the known risk reduction 

measures that are effective in reducing cancer. 

Rationale 

Although risk-reduction information exists, it has 

not been effectively disseminated to the many 

communities that are impacted by cancer health 

disparities. We know that if the public has equal 

access to available information and applies this 

knowledge in their lives, the risk of cancer for all 

Americans can be reduced substantially. According to the Institute of Medicine, if known riskreduction behaviors were promoted and maintained, a 19% decline in the rate of new cancers and a 

29% decline in the rate of cancer deaths could 

potentially be achieved by 2015. For specific 

individual cancers, the potential reductions are 

even more dramatic: the number of smokingrelated cancers such as lung cancer could be cut in 

half and colorectal cancer by up to one third 

(Cancer Prevention and Early Detection, 

2003). [7] 

Issues of Importance 

• It is vital to have an entity addressing cancer 

health disparities that can appropriately provide funding for collaborative partnerships, 

including public, private, and government 

sources. 

• Impressive progress is available for underserved communities by making effective use 

of already known risk-reduction measures. 

• To demonstrate the efficacy of programs, we 

need to develop comprehensive evaluation 

and assessment tools. 

• If efforts are to improve effectively the health 

of communities suffering health disparities, 

the community must be consulted in all 

phases of planning and implementation. 

Priority Recommendation 2. 

HHS should identify and work with other public and 

private organizations to develop and implement a 

national “CALL TO ACTION” agenda to eliminate 

cancer health disparities. 

Rationale 

A participatory approach is needed to create an 

agenda for closing the current void in the participation and involvement of communities affected 

by cancer health disparities. This “Call to Action” 

will create effective opportunities that do not 

currently exist. 

Issues of Importance 

• Leadership must understand the importance of 

community involvement and be ready to 

solicit and act upon recommendations initiated by the community. 

• Likewise, the community must understand its 

role and take action in reducing cancer health 

disparities. 

• Measurable goals, timetables, and outcomes 

should be part of this agenda. 

Priority Recommendation 3. 

HHS leadership must articulate an entity within the 

Department that will have responsibility and resources 

to establish effective partnerships necessary to eliminate health disparities in cancer. 

Rationale 

This entity will be the vehicle to spearhead the 

effort within HHS. 

Appendix A – Reports of the Roundtable Breakout Groups A-27 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Issues of Importance 

• The entity will have the ability to link, create, 

and facilitate partnerships at all levels. 

• The entity should have funding authority to 

establish partnerships and create a think tank 

of representatives from the communities, 

research organizations, universities, government, and corporate/nonprofit organizations to 

assist in reducing cancer health disparities. 

Conclusion 

We need to develop novel and effective approaches in our efforts to combat and ultimately eliminate cancer disparities among underserved 

population groups. Collaborative relationships, 

involving government agencies, academic institutions, community groups, and the public offer an 

optimal opportunity to achieve this goal. Through 

properly planned and administered partnerships, 

programs can effect changes to ensure that all 

segments of society achieve equality in the continuum of cancer care, from prevention and early 

detection to diagnosis, treatment, and survivorship. Moreover, through adherence to specific 

guiding principles, such partnership strategies can 

effectively address the issues of cultural diversity 

in guaranteeing the rights of all Americans to 

equal access for every aspect of cancer care. 

Literature Cited 

1. Yach Derek. World Health Report ‘02 Makes 

Prevention Top Global Priority. Global 

Health and Environment Monitor. 2002;(10): 

1, 4. 

2. LaMarca K, Wiese KR, Pete JE, and Carbone 

PP. A progress report of cancer centers and 

tribal communities. Building a partnership 

based on trust. Cancer. 1996 Oct 1;78(7 

Suppl):1633-7. 

3. Earp JA, Viadro CI, Vincus AA, Altpeter M, 

Flax V, Mayne L, and Eng E. Lay health 

advisors: A strategy for getting the word out 

about breast cancer. Health Educ Behav. 

1977 Aug;24(4)432-51. 

4. Meade CD and Calvo A. Developing 

community-academic partnerships to enhance 

breast health among rural and Hispanic 

migrant and seasonal farmworker women. 

Oncol Nurs Forum. 2001 NovDec;28(10):1577-84. 

5. Meade CD, Calvo A, and Rivera MJ. 

Screening and community outreach programs 

for priority populations: considerations for 

oncology managers. Onco Manag. 2002 SepOct;11(5):20-8. 

6. Fleisher L, Kornfeld J, Ter Maat J, Davis SW, 

Laepke K, and Bradley AJ. Building effective 

partnerships: A national evaluation of the 

Cancer Information Service outreach 

program. Part 2. Health Commun. 1998;3 

Suppl:21 35. 

7. Fulfilling the Potential of Cancer Prevention 

and Early Detection. National Cancer Policy 

Board, Institute of Medicine and National 

Research Council. The National Academies 

Press, Washington, DC, 2003. Available at 

http://www.nap.edu/books/0309082544/html. 

[Last accessed on January 21, 2004.] 

A-28 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

IMPLEMENTING EVIDENCE-BASED PROGRAMS TO REDUCE CANCER HEALTH 

DISPARITIES 

Co-Chairs: 

• Mark Clanton 

• Tim Byers 

Participants: 

• Joan Bloom 

• Judy Ford 

• Elmer Huerta 

• Marguerite Johnson 

• Rena Pasick 

• Kathryn Taylor 

• Cynthia Vinson 

• Nadarajen Vydelingum 

Introduction 

In this report, we do not interpret “evidencebased” to imply that only randomized controlled 

trials are informative. Instead, we considered 

evidence from a broader range of studies. This 

is important because for many issues, such as 

community-based policy interventions or communication interventions aimed at long-term 

outcomes across cultures, it is not realistic to 

expect that randomized controlled trials can ever 

be done. Therefore, where evidence from 

randomized controlled trials was available, we 

considered it, but for other important interventions, we also considered a wide range of other 

types of evidence. The priorities addressed in the 

recommendations that follow reflect major health 

disparities and issues for which evidence of intervention effect is unequivocal. These priorities 

also address critical health disparity gaps for 

which more evidence must be generated. 

Our first priority recommendation focuses on 

tobacco, which is the single most important cause 

of cancer in the United States. [1] Growing disparities by socioeconomic status in tobacco use in 

the United States will inevitably lead to increasing 

future disparities by social class in cancer. [2,3] 

Increasing the price of tobacco is the single most 

effective way to reduce tobacco consumption in 

the population, especially among youth. [4] Substantial variations between states in the price of 

tobacco will undoubtedly result in substantial 

disparities between states in tobacco use and in 

the future cancer burden from tobacco. Therefore, 

Federal initiatives to increase tobacco prices could 

prevent increases in future disparities between 

states. In addition to price effects on tobacco use, 

mass-media and community-based initiatives have 

been shown to be effective in reducing the uptake 

of tobacco by youth. [5,6] Finally, randomized 

trials have shown that both counseling and 

pharmacological aids to cessation (nicotine 

replacement and/or other medication use) are 

effective adjuncts in assisting people to quit 

smoking. [7,8] 

Randomized controlled trials have shown substantial benefit from screening programs that lead to 

early detection of cancers of the breast and colon, 

and strong historical trends make it certain that 

screening for cervical cancer also reduces mortality. [9] Mortality rates from these three cancers 

are decreasing in the United States, in part due to 

screening efforts. [10] However, a socioeconomic 

and racial/ethnic gap remains in screening rates 

that will contribute to a continuing gap in mortality from these three cancers. [11] The Centers for 

Disease Control and Prevention (CDC)-supported 

National Breast and Cervical Cancer Early Detection Program, which offers breast and cervical 

cancer screening to the uninsured, is effective for 

the women it reaches, but this program currently 

serves only 15% of eligible women due to limited 

financial support. [2] Because the program is 

designed to directly reach underserved women of 

racial, ethnic, and socioeconomically disadvantaged groups, an opportunity currently exists to 

reduce these disparities by expanding this program. [2] Screening for colorectal cancer is also a 

proven strategy for reducing cancer mortality and 

incidence [9], but both the number and size of 

programs are insufficient to offer colorectal cancer screening to more than a very small proportion 

of the underinsured. It has also been established 

that efforts to promote screening by eliminating 

cost barriers must be accompanied by culturally 

appropriate promotion and education strategies. 

[12] It is important to offer effective treatment for 

anyone found to have cancer by screening, as it is 

the treatment that leads to reduced mortality. 

Appendix A – Reports of the Roundtable Breakout Groups A-29 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Screening programs should therefore be coupled 

with access to appropriate treatment. 

Gaps also exist between discovery and practice 

for evidence-based interventions that could reduce 

cancer health disparities. After effective interventions are discovered (typically by studies supported by the National Institutes of Health), these 

interventions are rarely implemented. A need 

exists to specifically support the implementation 

phase of research that is intended to understand 

how effective programs can be established in 

diverse communities and populations. Research 

in program implementation should be seen as a 

valid public health research and development 

activity to improve our understanding of mechanisms that result in the success or failure of 

evidence-based program implementation. 

Priority Recommendation 1. 

Broadly implement interventions that have been proven 

to reduce tobacco use, including: 

• A Federal excise tax, as recommended by the 

Subcommittee on Cessation of the Interagency 

Committee on Smoking and Health [13] 

• Comprehensive community-based prevention 

programs targeted to adolescents 

• Cessation services, including pharmacotherapy and 

counseling 

Rationale 

Tobacco smoking is a major cause of cancer health 

disparities and a strong evidence base supports the 

effectiveness of interventions to reduce tobacco 

use through both prevention and cessation. 

Priority Recommendation 2. 

Fund screening for breast, cervical, and colorectal 

cancer for all age-appropriate populations in the United 

States that do not now have health insurance, in 

combination with culturally appropriate outreach and 

education addressing routine, repeat screening, and 

provide cancer treatment for anyone who would qualify 

for these programs. 

Specifically, the funding should be provided to: 

• Fully fund the National Breast and Cervical 

Cancer Early Detection Program to reach all 

eligible women. 

• Add colorectal screening to the National 

Breast and Cervical Cancer Early Detection 

Program framework for both men and women. 

• Fund treatment for anyone diagnosed with 

breast, cervical, or colorectal cancers who 

would have been eligible for these screening 

programs. 

Rationale 

Solid and ample evidence demonstrates that appropriate screening with follow-up treatment will 

significantly reduce mortality from these cancers. 

Issues of Importance 

• Develop evidence for use of comprehensive 

wellness programs instead of focusing on 

organ/disease-specific programs. 

• Explore ways to expand the National Breast 

and Cervical Cancer Early Detection Program 

that do not depend entirely on public health 

agencies, but also include community-based 

organizations. 

• As additional cancer screening techniques are 

recognized by the U.S. Preventive Services 

Task Force to reduce cancer-related mortality, 

these should be added. 

Literature Cited 

1. American Cancer Society. Cancer Prevention 

and Early Detection Facts and Figures 2002. 

Atlanta: American Cancer Society, 2002. 

2. Institute of Medicine. Fulfilling the Potential 

of Cancer Prevention and Early Detection. 

Washington, DC: The National Academies 

Press, 2001. 

3. Tobacco Use among U.S. Racial/Ethnic 

Minority Groups: African Americans, 

American Indians and Alaska Natives, Asian 

Americans and Pacific Islanders, and 

Hispanics. A Report of the Surgeon General. 

Washington, DC: U.S. Department of Health 

and Human Services, 1998. 

4. Reducing Tobacco Use: A Report of the 

Surgeon General. Atlanta: U.S. Department 

of Health and Human Services, Centers for 

Disease Control and Prevention, National 

Center for Chronic Disease Prevention and 

Health Promotion, Office of Smoking and 

Health, 2000. 

A-30 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

5. Task Force on Community Preventive 

Services. Recommendations regarding 

interventions to reduce tobacco use and 

exposure to environmental tobacco smoke. 

Am J Prev Med 2001;20:10-5. 

6. Hopkins DP, Husten CG, Fielding JE, 

Rosenquist JN, and Westphal LL. Evidence 

reviews and recommendations on 

interventions to reduce tobacco use and 

exposure to environmental tobacco smoke: a 

summary of selected guidelines. Am J Prev 

Med 2001;20: 67-87. 

7. Fiore M, Bailey W, Cohen SJ, Dorfman SF, 

Goldstein MG, Gritz E, et al. U.S. 

Department of Health and Human Services. 

Treating Tobacco Use and Dependence. 

Rockville, MD: U.S. Department of Health 

and Human Services, U.S. Public Health 

Service, 2000. 

8. Piasecki TM and Baker TB. Any further 

progress in smoking cessation treatment? 

Nicotine Tob Res 2001;3:1393-4. 

9. Guide to Clinical Preventive Services. 3rd 

Edition: Periodic Updates. U.S. Department 

of Health and Human Services, Agency for 

Healthcare Research and Quality, U.S. 

Preventive Services Task Force. Rockville, 

MD, 2002. 

10. Weir H, Thun M, Hankey B, Ries LAG, 

Howe HL, Wingo PA, et al. Annual report to 

the nation on the status of cancer, 1975-2000, 

featuring the uses of surveillance data for 

cancer prevention and control. J Natl Cancer 

Inst 2003;95:1276-99. 

11. Behavioral Risk Factor Surveillance System. 

CDC Website. Available at: http://www.cdc. 

gov/brfss. [Last accessed January 21, 2004.] 

12. Rimer B. Interventions to increase breast 

screening. Cancer 1994;74:323-8. 

13. Subcommittee on Cessation of the 

Interagency Committee on Smoking and 

Health. Final meeting summary. CDC 

Website. Available at: http://www.cdc.gov/ 

tobacco/ICSH/011603_summary.htm. [Last 

accessed January 21, 2004.] 

Appendix A – Reports of the Roundtable Breakout Groups A-31 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

CULTURALLY AND LINGUISTICALLY COMPETENT EDUCATION AND TRAINING 

Co-Chairs: 

• Venus Ginés 

• Cathy D. Meade 

Participants: 

• Pamela K. Brown 

• Janice A. Chilton 

• Katherine A. Flores 

• Dianne A. Freeman 

• James W. Hampton 

• Suzanne Heurtin-Roberts 

• Martha A. Medrano 

• James L. Phillips 

• Gregory A. Talavera 

• Sandra Millon-Underwood 

• Tony L. Whitehead 

Introduction 

The United States is more ethnically diverse today 

than at any time in its history; yet, this diversity is 

not proportionately reflected in the health 

professions. The inability of many health 

professionals to understand the language and 

cultural nuances of their diverse patients has 

contributed substantially to the well-documented 

disparities in cancer care outcomes. 

In this environment, language barriers, 

stereotypical assumptions, biases, and clinical 

uncertainty abound. Clinicians can misunderstand 

the patient’s description of symptoms; patients 

may not be able to read instructions; doctors and 

other health providers may fail to appreciate the 

significance of traditional remedies or customs; 

and barriers in the current health care system 

arguably affect certain segments of the 

populations. 

The scarcity of culturally competent health care 

workers erodes the quality of care, contributes to 

poor health outcomes, and increases health care 

costs. [1] Indeed, evidence suggests that lack of 

culturally competent health-related workers 

discourages some individuals from seeking health 

care at all. 

Also, the proportionately small number of 

culturally diverse health care workers sends a 

negative message regarding opportunities to 

youth. The educational system (K-16) does not 

sufficiently encourage and prepare 

underrepresented students to pursue health-related 

careers. Community-based partnerships that 

might help address this problem are not fully 

utilized; all too often, participation of 

underrepresented groups in diversity planning and 

training is, at a “token” level, essentially window 

dressing. 

Despite decades of affirmative action and 

thousands of programs targeting diverse and 

disadvantaged Americans at various points in the 

educational process, the proportion of racial and 

ethnic groups in many health care professionals 

actually fell in the 1990s. This is especially 

unfortunate since “best practices” and models for 

culturally and linguistically competent education 

and training exist. Such education and training 

can improve cancer care and outcomes directly, 

by promoting entry of more racial and ethnic 

groups into the health professions. Training can 

also enhance the responsiveness of health workers 

of whatever race and ethnicity and socioeconomic 

status to patients whose characteristics and 

background differ from their own. Likewise, 

strong community partnerships, which draw upon 

collective knowledge and wisdom can enrich and 

strengthen culturally and linguistically competent 

education and training. 

The following three recommendations provide a 

concrete mechanism that will transform cultural 

and linguistic competency training and education 

throughout the health care system and build on 

existing strengths and knowledge. 

Priority Recommendation 1. 

Require that all health care institutions and organizations receiving Federal funds demonstrate cultural and 

linguistic competency, as defined by HHS’s Office of 

Minority Health Culturally and Linguistically Appropriate 

Services (CLAS). 

“Cultural and linguistic competence is a set of 

congruent behaviors, attitudes, and policies that 

come together in a system, agency, or among 

professionals that enables work in cross-cultural 

situations. ‘Culture’ refers to integrated patterns 

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Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

of human behavior that include the language, 

thoughts, communications, actions, customs, 

beliefs, values, and institutions of racial, ethnic, 

religious, or social groups. ‘Competence’ implies 

having the capacity to function effectively as an 

individual and an organization within the context 

of the cultural beliefs, behaviors, and needs 

presented by consumers and communities.” 

The 14 CLAS standards have been implemented 

around six general competencies: 

• Patient Care—compassionate, appropriate, 

effective; culturally and linguistically 

sensitive and competent 

• Medical Knowledge—biomedical, clinical, 

social sciences-based; conscious avoidance of 

diagnoses or recommendations based on 

cultural stereotypes or bias 

• Practice-Based Learning and Improvement— 

open decision making, constant review of 

practice based on new research and models, 

self-improvement based on feedback 

• Interpersonal and Communication Skills— 

effective listening, nonverbal, questioning, 

and narrative skills; linguistic competency 

through knowledge of patients’ languages 

or qualified interpreters 

• Professionalism—patients’ interests first; 

sensitivity, care, and respect for patients, 

families, and colleagues of all backgrounds, 

ethnicities, and lifestyles; ethical and 

professional conduct in all situations 

• Systems-Based Practice—awareness of 

systemic resources and possible barriers; 

collaboration with colleagues and payers to 

ensure cost-effective care with no slippage in 

quality for all patients 

Rationale 

This policy would immediately raise the level of 

cultural and linguistic competency throughout the 

health care industry. It would spark development 

and implementation of a wide variety of mechanisms and strategies to strengthen cultural and 

linguistic competency education and training. 

This includes incorporation of cultural and linguistic competency into certification and licensure 

and re-licensure examinations and requirements; 

and employee/staff training programs for the 

broad range of paraprofessional and 

administrative personnel who interact with 

patients. This might also include adding foreign 

language requirements in medical education 

programs. 

Issues of Importance 

• A national policy tying system-wide cultural 

and linguistic competency (similar to the current “drug-free” policy) to receipt of Federal 

dollars would raise the level of cultural and 

linguistic competency throughout the health 

care industry in a relatively short period of 

time. 

• Educational programs, professional 

associations, and licensure bodies would work 

to incorporate cultural and linguistic 

competency as a core requirement into their 

standards, examinations, and programs. 

• The efficacy of this recommendation depends 

on a broader definition of health-related 

professionals, to include promotoras 

(community lay workers), certified medical 

interpreters, and patient navigators. 

Priority Recommendation 2. 

Fund the development of innovative education and 

training programs to create a diverse and culturally 

competent health care workforce that is representative 

of the communities it serves. e programs would 

target education and training programs for K-16+ 

ethnic/racial groups and non-traditional students. 

Thes

Rationale 

Increased funding for science-related education 

and training programs for ethnic and racial 

minorities across the pipeline will make our health 

care system representative of our population and 

create a cadre of culturally and linguistically 

competent health professionals of all ethnicities 

and backgrounds. 

Issues of Importance 

• Department of Health and Human Services 

(HHS) should partner with the U.S. Department of Education and other Federal/state/ 

private agencies and communities to leverage 

resources and increase the number of diverse 

and nontraditional students in health-related 

professions. 

A-34 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

• HHS should fund local cultural and linguistic 

competency training for all health-related 

workers. Such programs should be planned 

and implemented through local community 

organizations that include ethnic/racial 

minority representation and partners. 

• The wealth of workers in paraprofessional and 

administrative roles within the health care 

system provides an untapped reservoir of 

talent for planning and delivering cultural and 

linguistic diversity training. 

Priority Recommendation 3. 

HHS should fund development, identification, dissemination, and delivery of “best practices,” model approaches, and outreach strategies for culturally, 

linguistically, and literacy specific cancer communications and health promotions, in partnership with cancer 

survivors, caregivers, and community advocacy

organizations. 

Rationale 

Cancer interventions and communications that are 

culturally, linguistically, and literacy appropriate 

contribute extensively to quality cancer care and 

enhance health outcomes. You can have a great 

outreach strategy or best practice, but if you don't 

promote it in a culturally and linguistically 

appropriate manner, you miss the mark. Health 

promotions should be developed, reviewed, and 

disseminated by community advocacy groups and 

survivors who work with the specific community, 

with HHS funding. Too much of our current 

health promotions are literal translations and not 

cultural translations. 

Recognizing that linguistic diversity is an integral 

part of American culture is essential for eliminating cancer health disparities and the need to tailor 

health promotions more regionally rather than 

centrally. An example of the latter is the National 

Cancer Institute’s Spanish call lines where 

linguistic diversity within the Spanish speaking 

community requires considerable sensitivity. 

Awareness about the effectiveness of model 

programs, which address such elements at the 

national and local level is often lacking. A greater 

knowledge of program efficacy is needed for 

replication and dissemination. Furthermore, the 

involvement of cancer survivors, caregivers, and 

community advocates in the process of evaluating 

programs and strategies is important to the 

identification and usability of best models. 

Issues of Importance 

• HHS can develop a mechanism for peer 

review of “best practices,” model approaches, 

and outreach strategies that include 

community input. An ongoing process for 

peer-reviewed evaluation is essential. 

• The peer review process should include 

substantial input from cancer caregivers, 

survivors, community advocates, and diverse 

health care workers at all levels. 

• To ensure that the information is not buried or 

lost, the HHS could establish a clearinghouse 

for the dissemination of user-friendly cancer 

education materials, “best practices,” model 

approaches, and outreach strategies. 

• The information could be easily searchable 

and accessible on line. HHS regional offices 

can be charged with publicizing the clearinghouse and providing technical support. 

Conclusion 

Nearly half a century of affirmative action and 

laissez faire policies have failed to produce a 

health care system that is responsive to patients of 

diverse languages and cultures. In an increasingly 

diverse society, it is imperative that HHS take 

steps to guarantee cultural and linguistic 

competency in health care workers at all levels— 

from administrators and their staff, physicians, 

researchers, practical and licensed nurses, 

physicians’ assistants, aides, dentists, pharmacists, 

optometrists, technicians, promotoras, clergy, and 

lay workers. 

The three strategies described above would change 

the dynamics of the current situation. Requiring 

linguistic and cultural competency education and/or 

training for licensure, certification/recertification, 

and employment in any federally funded program 

would effectively reach all current medical students 

and researchers, and virtually all health care 

facilities. This mandate would immediately improve 

the quality of care provided to many of the nation’s 

medically underserved populations. 

The second and third recommendations increase 

the feasibility of the first recommendation by 

Appendix A – Reports of the Roundtable Breakout Groups A-35 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

providing mechanisms to support its genuine 

implementation. By combining forces with the 

educational establishment to strengthen science 

training (K-16), we will increase the proportion of 

underrepresented health care workers at all levels. 

This would directly improve the pool of culturally 

competent health care workers, and provide more 

role models for youth who may wish to pursue 

health-related careers. 

More racial and ethnic minorities in health care 

will have a synergistic effect and add to the pool 

of planners and trainers for ongoing cultural and 

linguistic competency training. Likewise, the 

strengthening of community participation in 

community-based planning will illuminate local 

needs and facilitate cross-cultural strategies and 

programs. 

As our nation grows and evolves in this key health 

care area, HHS should take the lead in testing, 

evaluating, and disseminating best practices in 

cultural and linguistic competency training. Given 

the substantial work in this area, HHS will perform 

a tremendous service by establishing a peer review 

process to identify current best practices in cultural 

and linguistic competency education and training. 

Creation of user-friendly databases and technical 

support mechanisms will help local health care 

systems respond to the health care needs of a 

growing diverse population. 

“If you want to move people, it has to be toward a 

vision that’s positive for them, that taps important 

values, that gets them something they desire, and it 

has to be presented in a compelling way that they 

feel inspired to follow.” – Martin Luther King, Jr. 

Literature Cited 

1. Unequal Treatment: Confronting Racial and 

Ethnic Disparities in Healthcare. Committee 

on Understanding and Eliminating Racial and 

Ethnic Disparities in Health Care, Board on 

Health Sciences Policy, Institute of Medicine. 

The National Academies Press, Washington, 

DC, 2003. Available at http://www.nap.edu/ 

books/030908265X/html. [Last accessed on 

January 21, 2004.] 

A-36 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

INEQUITY AND SOCIAL INJUSTICE 

Co-Chairs: 

• Harold Freeman 

• Ruth Lin 

• Camara Jones 

Participants: 

• Dileep Bal 

• Estevan Flores 

• Frank Govern 

• Jaci Holland 

• M. June Horner 

• Lovell Jones 

• Nancy Krieger 

• Barbara Krimgold 

• Gena Love 

• Ben Muneta 

• Louis Sullivan 

Introduction 

Disparities in health and health care occur in the 

context of societal inequities and injustice, which 

have developed throughout the history of this 

nation and now define our society. Health disparities cannot be resolved without explicitly 

addressing these societal causes. 

Differences and diversity form the crux of this 

nation, yet our treatment of women, minorities, 

and other disadvantaged groups is far from equitable. Over the course of our nation’s development, equitable treatment has become codified in 

law; however, due to incomplete enforcement and 

implementation of these laws, inequities still exist. 

These inequities permeate the nation’s health care 

system so that people with insurance and the same 

socioeconomic status receive different treatment 

for small cell lung cancer, according to a study 

conducted at Memorial Sloan-Kettering Cancer 

Center. [1] Similarly, researchers found in 1999 

that race matters in renal transplant referrals. [2] 

A 2000 New England Journal of Medicine study 

of prescription opioid drug availability in New 

York City found that only 25% of pharmacies in 

nonwhite neighborhoods carried sufficient 

amounts of drug for treatment of severe pain. 

In stark contrast, 72% of pharmacies in white 

neighborhoods carried sufficient opioids for 

severe pain. [3] These and other examples 

demonstrate that race still matters in our society. 

From cancer biology research to cancer control and 

outcomes, what has been developed is not reaching 

all cancer patients, and health disparities result. 

This begs the question of whether disease differences would disappear if all patients were given 

equal treatment. Unfortunately, we return to the 

realization that disease occurs within a context of 

human circumstances, with numerous contributors, 

including social position, economic status, culture, 

and environment. These come together as critical 

determinants of who 

• is born healthy 

• grows up healthy 

• sustains health throughout his or her life span 

• survives disease 

• maintains a good quality of life after diagnosis 

and treatment 

As a first step, a solution must be found that eliminates unequal health care treatment so that cancer 

health disparities can be eliminated. We must 

also attend to the factors that cause differential 

exposures to adverse environments by race. 

Priority Recommendation 1. 

Establish a Leadership Council on Health, Inequity, and 

Social Justice convened by the Secretary of the Department of Health and Human Services in partnership with 

the Secretaries of the other Federal departments. 

Council will mobilize and direct national resources in a 

comprehensive national effort to improve the health of 

the American people, including the elimination of health 

disparities. 

This 

Rationale 

Cancer health disparities occur within the broad 

context of human circumstances, including substandard housing, poor educational opportunities, 

adverse environmental exposures, and limited 

access to quality health care. Therefore, the 

solutions are beyond the scope of the health care 

system alone and necessitate the development of a 

comprehensive approach. 

Appendix A – Reports of the Roundtable Breakout Groups A-37 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Issues of Importance 

• Obtain endorsement from the White House. 

• Establish goals and targets with monitoring 

and accountability. 

• Assess how the various departmental policies 

and programs affect health and health 

disparities. 

• Provide an explicit reference to a human 

rights framework. 

• Explore the legal and civil rights implications 

of health disparities. 

• Use this opportunity to discuss the impacts of 

racism and the other fundamental causes of 

disparities. 

Priority Recommendation 2. 

Eliminate inequity and social injustice in the delivery of 

what we currently know to be effective in cancer prevention and care. ecifically, no person with cancer 

should go untreated. 

Sp

Rationale 

This is in keeping with the “Discovery to Delivery” continuum and is critical for attaining the 

National Cancer Institute’s 2015 goal. 

Issues of Importance 

• Define and disseminate standards of care and 

monitor their implementation. 

• Increase emphasis on prevention, especially 

for populations with the greatest burden of 

cancer. 

Priority Recommendation 3. 

Target special resources to geographic areas of excess 

cancer mortality and work toward universal access to 

health care. 

Rationale 

Eliminating health disparities requires providing 

resources to areas and people with the highest 

mortality. Additionally, people without health 

insurance are diagnosed at later stages and die at 

higher rates. 

Issues of Importance 

• High cancer rates are often indicators of other 

health disparities. 

• Access to high-quality services should be 

timely and equitable, and include outreach, 

prevention, and treatment. 

• Health care as a right is being widely discussed by many stakeholders in this country. 

Conclusion 

Viewing health disparities through the historic and 

present-day lens of inequity and social injustice 

reveals a complex problem whose core lies in the 

health care system and whose solution requires a 

comprehensive approach to human circumstance 

determinants. 

Effective strategies within the health care system 

include targeting geographic regions with excessive cancer mortality and delivering state-of-the-art 

therapy to all patients. Additionally, universal 

health care would provide a common structure under which these recommendations could flourish. 

Unfortunately, implementing these recommendations alone will never overcome health disparities; 

the solution involves more than the health care 

system alone and will encompass contributors to 

the human and societal circumstances that breed 

and foster disparities. The establishment of a Leadership Council that comprises the Secretaries of 

Federal departments would help focus resources 

on a national effort to eliminate cancer health disparities and improve the health of all Americans. 

Literature Cited 

1. Bach PB, Cramer LD, Warren JL, and Begg 

CB. Racial differences in the treatment of 

early-stage lung cancer. N Engl J Med. 1999 

Oct 14;341(16):1198-205. 

2. Ayanian JZ, Cleary PD, Weissman JS, and 

Epstein AM. The effect of patients’ preferences on racial differences in access to renal 

transplantation. N Engl J Med. 1999 

Nov;25;341(22):1661-9. 

3. Morrison RS, Wallenstein S, Natale DK, 

Senzel RS, and Huang LL. We don’t carry 

that—Failure of pharmacies in predominantly 

nonwhite neighborhoods to stock opioid 

analgesics. N Engl J Med. 2000 Apr. 

342:1023-1026. 

A-38 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

CHANGES AND IMPLEMENTATION OF PUBLIC POLICY 

Co-Chairs: 

• Armin Weinberg 

• Shalini Vallabhan 

Participants: 

• Bruce Behringer 

• Sarita Bhalotra 

• Jean Chabut 

• Jennie Cook 

• Jane Daye 

• Lloyd Everson 

• Ellen Heier 

• Sandral Hullett 

• Wanda Jones 

• Cheryl Kidd 

• Paul Nusbaum 

• Gary Reedy 

• Elena Rios 

Introduction 

Cancer health disparities represent a major health 

problem in the United States, threatening ongoing 

efforts to achieve the Healthy People 2010 goals 

and the National Cancer Institute’s (NCI’s) 2015 

goals set for the nation. Policy and decisionmakers can help eliminate cancer health disparities through legislation, regulation, and the development and implementation of public policy to 

increase access to care and improve the system of 

health care delivery. Within the Department of 

Health and Human Services (HHS), there are 

numerous opportunities to initiate and implement 

policy change that will improve the transfer of 

knowledge gained from cancer research to the 

actual application and delivery of that knowledge, 

resulting in improved access to quality health 

care. Because of its financial and political 

strength and programs, HHS has tremendous 

potential to make an impact on reducing cancer 

health disparities. 

The current, unstable economic climate poses a 

challenge for policy makers at the state and 

Federal levels. Perhaps the greatest public policy 

challenge is securing sufficient funding to not 

only implement new policies and programs but to 

improve and effectively implement existing ones. 

Economic incentives for providers as well as patients are key to effecting change, as payoffs from 

cancer-related investments, both financial and 

policy-based, can take years to materialize. Lack 

of funding and resources, in addition to increased 

scrutiny of the effectiveness of Federal government programs, has heightened the need for 

consistent policies and increased coordination and 

communication among HHS agencies and programs. Further, any cost-saving efforts initiated at 

this time could have far reaching implications 

with potentially negative impacts on access to 

care that would in fact be exacerbated in underserved populations. 

It is clear that the disparities that exist do so at the 

local community level. Policy change must therefore also provide an opportunity for the solutions 

to be found and shared at the community level. It 

is our belief that national policy should be framed 

with input from the communities in which disparities exist and utilize partnerships among the public, 

private, and nonprofit sectors at the community 

level whenever possible. 

Another significant policy challenge concerns the 

state of our health care financing system. The 

current insurance system is broken; attempts to 

“band-aid” the system have led to quick fixes that 

address one small part of the equation, often without relating it back to the whole. It is also important to note that a large percentage of health 

policy is formulated from a highly technologic 

and/or treatment-based majority perspective. The 

populations with the greatest disparities may be 

operating from a wholly different cultural health 

perspective that affects everything from their adherence to screening to completion of treatment. 

The following statements illustrate this group’s 

beliefs regarding changing and implementing public policy to eliminate cancer health disparities: 

• We can reduce disparities if we target our 

policy actions. 

• “Good health for everybody in the country is 

good for everybody in the country.” The 

elimination of health disparities should be a 

national public policy priority. 

Appendix A – Reports of the Roundtable Breakout Groups A-39 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

• To eliminate health disparities, we need policies that facilitate solutions in the populations 

suffering disparities, in the communities 

where there are disparities, and in the entities/ 

institutions that can make a difference in eliminating disparities. 

• Public policy cannot accomplish everything– 

there are limitations. Multiple strategies can 

work, and we need to be creative in identifying policy levers that influence and enable 

change. 

• We recognize that there are tradeoffs between 

personal behaviors versus policy changes. 

• Instituting significant policy changes takes 

courage and commitment. 

• There are successful models that have been 

utilized in the past that could provide a framework for the future. 

• Comprehensive information and surveillance 

systems that utilize systematic data collection, 

reporting, and usage at HHS are crucial to 

understand disparities and to better target 

where investments should be made. 

Priority Recommendation 1. 

Review of HHS programs for realignment of funds. 

Rationale 

HHS should conduct a Secretary-led, rapid programmatic and budgetary review of all HHS programs with the intent to shift and realign funding 

to evidence-based programs, where possible, that 

are effective in addressing cancer health disparities. The Secretary should also issue a report to 

Congress, making recommendations to fully fund 

HHS programs that are proven effective in 

reducing cancer health disparities. 

In this current economic environment, the reality 

is that no additional funds may be available to 

implement or improve existing policies or programs. There is a responsibility on the behalf of 

HHS leadership to identify efficiencies and inefficiencies within the agencies’ programs to better 

realign and reallocate funding more effectively. A 

serious internal review of how dollars are allocated with regard to discovery, development, and 

delivery of services is required. There are many 

examples of duplication of services and programs 

within HHS; in addition, questions have been 

raised regarding the efficacy of some federally 

funded cancer programs while other programs are 

thought to be grossly underfunded. Examples of 

programs considered underfunded include the 

following: 

• State tobacco programs, which are known to 

be efficacious. In addition, additional funding 

for HHS programs emphasizing prevention 

should be secured. 

• The NCI’s Center to Reduce Cancer Health 

Disparities, which should receive an increase 

in funding levels. 

• Colorectal cancer screening programs, which 

are funded on a demonstration basis only in a 

limited number of states. 

• The Centers for Disease Control and Prevention’s (CDC’s) National Breast and Cervical 

Cancer Early Detection Program, which is 

very effective, but with limited funding levels, 

is only able to serve 15%-18% of the eligible 

population. The funding needs to be expanded to cover 100% of women eligible for 

screening services. 

• CDC’s National Program of Cancer Registries 

and NCI’s Surveillance, Epidemiology, and 

End Results registries, which are essential to 

state cancer planning and identification of 

cancer disparity populations. 

• Health Resources and Services Administration community health centers, which need 

adequate funding to enable the adoption of 

proven, effective cancer collaborative models/ 

guidelines. 

Issues of Importance 

• A realignment of funding is the initial goal of 

this recommendation; the long-term goal is 

full funding of programs proven to be essential to the elimination of cancer health 

disparities. 

• A comprehensive internal review of HHS 

programs could potentially be a lengthy and 

administratively laborious process. 

• To ensure objectivity, an independent reviewer/party is necessary to conduct such a review. 

• Input from community representatives (e.g., 

Progress Review Group and Roundtable 

Members) is advised. 

A-40 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

• This endeavor requires the commitment of 

HHS leadership and staff to complete and 

follow through. 

Priority Recommendation 2. 

Comprehensive trans-HHS plan to reduce cancer 

health disparities. 

Rationale 

HHS should develop and implement a Secretaryled, trans-HHS plan to reduce cancer health disparities through a comprehensive and coordinated 

“business like” approach where all agencies work 

together to advance cancer control and treatment 

along the continuum of “discovery, development, 

and delivery” in the community, where all agencies are held accountable, and incentives are 

aligned to optimize appropriateness, efficiency, 

and effectiveness. 

Currently no such plan to coordinate the cancerrelated activities of HHS exists. While HHS 

agencies administer and operate numerous innovative and effective programs, duplication, overlaps, and gaps in service exist. A trans-HHS plan 

would provide the mechanism for coordination 

and management across the agencies, taking into 

account metrics, timelines, and decision points. 

Issues of Importance 

• To develop, plan, and implement a trans-HHS 

plan requires solid commitment from, and 

assignment of accountability within, the HHS 

leadership and agencies. 

• In addition to the Secretary’s leadership, there 

needs to be an appointed committee that will 

provide oversight for the entire process from 

“discovery to development to delivery.” 

• This endeavor involves a major culture 

change for the government. 

• This plan provides for an internal self-elimination/realignment of dollars/review of 

allocations in programs across HHS. 

Priority Recommendation 3. 

Communities Empowered to Eliminate Disparities. 

Rationale 

HHS should institute a new trans-HHS initiative 

to invite communities to designate geographic 

areas as “Communities Empowered to Eliminate 

Disparities” or CEEDs, in which improvements in 

a continuum of cancer care would effectively 

produce outcomes to reduce specific cancer 

disparities for an identifiable cancer disparity 

population (e.g., race, ethnicity, and geographic 

location). 

Healthy People 2010 goals cannot be met without 

direct intervention from communities that serve 

health disparity populations. Recognizing that 

cancer care and cancer health disparities are local, 

solutions and interventions must come from the 

community. Such actions taken at the local level 

can have a tremendous impact on eliminating cancer health disparities. This approach empowers 

communities to be responsible for their own 

health care, and this method of engaging HHS 

programs at the community level is required to 

address access, financing, and research issues 

faced by disparity populations. Such an approach 

will spur public/private partnerships, which will 

aid in sustaining effective initiatives and programs. There is evidence that this type of 

approach has been very successful in some areas. 

Issues of Importance 

• Funding would be provided through a transHHS program tap at a minimum of 1%. 

• Substantial funds should be awarded through 

block grants of 10 years based on strategic 

plans developed by the communities. The 

plan should be based on service gap analysis; 

assessment of related community knowledge, 

beliefs, and behaviors; evaluation of strengths 

and weaknesses of executing targeted programs of service, financing, and research; 

potential use of Department programs (e.g., 

NCI, CDC, Community Health Center, and 

Centers for Medicare & Medicaid Services 

[CMS]); demonstrating a timeline and integration; formation of new partnerships; and 

establishment of multiyear outputs (services), 

outcomes (health indicators), and impacts 

(system change). 

• Approved CEEDs would be given priority in 

departmental funding through competitive 

grants, programs of research, and regulation 

waivers (e.g., CMS service eligibility and 

benefits). CEED status should be reviewed 

Appendix A – Reports of the Roundtable Breakout Groups A-41 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

annually to ensure progress on the strategic 

plan and reduction of disparities. 

• All plans would focus on accountable 

methods and outcomes that lead to the 

elimination of a cancer health disparity 

within that community. 

• The program would have national scope 

including different types of cancers and 

different underserved populations. 

• The program will lend itself to innovative 

integration with other government programs 

such as economic incentives for establishing a 

cancer center in a high disparities area made 

available through the Department of Housing 

and Urban Development or school lunch programs that follow healthy dietary guidelines 

supported in the CEEDs by the Department of 

Agriculture. 

• It will be important to: (1) reach out to communities with disparity populations to raise 

awareness that such a block grant process is 

available, and (2) craft a win-win argument so 

that communities of disparity populations 

understand the benefits of undertaking such a 

process. 

Additional CIPP Group Recommendations 

The following are additional recommendations the 

Changes and Implementation of Public Policy 

Breakout (CIPP) Group participants believe need 

to be considered by the Department. These 

recommendations came from both CIPP Breakout 

Group discussions, and a concept mapping 

exercise conducted with Roundtable member 

participation from all groups. The CIPP Breakout 

Group participants believe that this input should 

not go unmentioned, as it consolidates the opinions of an even greater selection of cancer health 

experts than simply those of the CIPP Breakout 

Group. 

• Amend Medicare and Medicaid authorization 

legislation to include the word “prevention” 

in statutory authority, so that the CMS can 

legally fund evidence-based cancer 

prevention without special legislation. 

• Develop sustainable health insurance programs for the economically and socially 

disadvantaged that ensure equal access to 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

cost-effective cancer treatments and support 

services. 

Pass legislation providing universal basic 

health coverage for all U.S. citizens and 

permanent residents. 

Ensure, by legislative and regulatory means, 

that people who are either at high risk for 

cancer, have been diagnosed with cancer, or 

treated for and survived cancer are not 

discriminated against in health insurance. 

Increase health insurance allowances for all 

cancer medications. 

Increase the Indian Health Service annual 

appropriation to allow all patients to receive 

recommended cancer screening. 

Provide Medicare coverage for all patients 

with a clinical or pathological diagnosis of 

cancer, for the duration of the cancer treatment and clinical follow-up. 

Promote and achieve environmental quality 

and equity by decreasing and eliminating 

environmental toxins in less affluent 

communities. 

Promote enrollment in public programs that 

might cover health-care costs, such as 

Medicaid, veterans’ benefits, Social Security 

Disability Insurance, and Child Health Plus 

(CHP). 

Increase the Federal excise tax on tobacco 

products and use the resources to fund health 

promotion programs focused on populations 

who bear the greatest disease burden. 

Collaborate with other agencies that are 

affected by health disparities, and have 

mechanisms for positively effecting change, 

such as the Department of Veterans Affairs, 

Department of Defense, Department of 

Treasury, and the Department of Housing and 

Urban Development. 

Provide funding for adequate mental health 

support to address the chaotic life issues that 

often undermine medical adherence in underserved populations. 

Expand tax incentive programs by cities/states 

to grocery stores that locate in minority and 

poor communities. 

A-42 Appendix A – Reports of the Roundtable Breakout Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Conclusion 

The solutions for eliminating cancer health disparities need to include the communities, at the 

local level. In order for policy makers and policy 

changes to be effective, communities must be 

engaged and empowered to make decisions about 

their health care. HHS will not reach its Healthy 

People 2010 and NCI’s 2015 Challenge Goal to 

eliminate the suffering and death due to cancer if 

it continues to operate in the mode of “business as 

usual”; nor will it effectively eliminate cancer 

health disparities. We further emphasize that any 

cost-saving efforts initiated at this time by HHS 

and CMS could have far reaching implications 

with potentially negative impact on access to care 

that would in fact be exacerbated in disparity 

populations. The agencies within HHS need to 

conduct an honest self-assessment of their cancerrelated programs’ appropriateness, efficiency, and 

effectiveness, and the Department as a whole 

needs to hold those agencies accountable for the 

results of those programs. Ineffective programs 

need to be revamped or eliminated, with their 

funding realigned to effective existing programs 

and new initiatives. Only then will entities such 

as the CEEDs be able to flourish and effectively 

reduce cancer health disparities for current and 

future generations. 

Appendix A – Reports of the Roundtable Breakout Groups A-43 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

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Appendix A – Reports of the Roundtable Breakout Groups A-53 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Appendix B 

About the Trans-HHS Cancer Health Disparities Progress Review Group 

Table of Contents 

Overview................................................................................................................................................... B-3

Progress Review Group Members ............................................................................................................ B-9

Federal Steering Committee Members ................................................................................................... B-11

Roundtable Participants .......................................................................................................................... B-13

Appendix B – About the Trans-HHS Cancer Health Disparities Progress Review Group B-1 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

OVERVIEW 

By planning and working together to address cancer health disparities, Department of Health and 

Human Services (HHS) offices and agencies 

strive to lead the Nation’s research, public health, 

and clinical delivery efforts to achieve a seamless 

and more assertive progression from scientific 

discovery to the development of evidence-based 

interventions and the delivery of those interventions. Toward this end, HHS established the 

Trans-HHS Cancer Health Disparities Progress 

Review Group (PRG) in early 2003 to identify 

new opportunities for HHS agencies to address 

cancer health disparities, implement new initiatives, and evaluate progress over time. 

The three-phase PRG approach (see Figure B-1) 

has been used effectively by the National Cancer 

Institute (NCI) and the National Institute of 

Neurological Disorders and Stroke to develop 

national agendas for disease-specific research and 

promises to be equally valuable for assisting HHS 

in achieving its goals to: 

• Define and describe issues related to cancer 

health disparities. 

• Identify areas of strength, gaps, opportunities, 

and priorities to address cancer health disparities in research and intervention development. 

• Facilitate the adoption and implementation of 

cancer research, policy, community programs, 

and clinical interventions and evaluate their 

impact on specific cancer health disparities. 

• Ensure unbiased access to continuous quality 

preventive care, early detection, and treatment 

of cancer for every American. 

• The Trans-HHS Cancer Health Disparities 

PRG and Federal Steering Committee (FSC) 

met June 19-20, 2003, to review the process, 

resources, and tools and plan the overall 

effort. 

• The Trans-HHS Cancer Health Disparities 

PRG Roundtable met August 27-29, 2003, 

along with the PRG Membership, FSC, and 

additional experts, to review the range of 

cancer health disparities issues and develop 

specific recommendations for advancing HHS 

goals in this area. 

Figure B-2 shows the roles and responsibilities of 

the different groups of experts who participated in 

Phase I activities. Listings of the individual PRG 

Members, FSC Members, and Roundtable participants can be found at the end of this Appendix. 

Figure B-2. Organizational Structure for 

Phase I of the PRG Process 

The three members of the PRG leadership were 

selected for their combined expertise and diverse 

backgrounds, for their ability to work effectively 

as a team, and for their excellent communication, 

management, and facilitation skills. During Phase 

I, this PRG leadership team communicated by 

conference call on a weekly basis to oversee all 

aspects of PRG planning, the Roundtable 

Meeting, and final report preparation. 

The Cancer Health Disparities (CHD) PRG, in its 

Figure B-1. The Three Phases 

of the PRG Process 

Completion and presentation of this report marks 

the end of Phase I. Although continuous effort 

went into planning and executing Phase I activities, two pivotal events took place over the past 

year. 

entirety, is composed of 24 prominent members of 

scientific, medical, public health, and advocacy 

communities. The members were selected for their 

ability to collectively provide expertise in all areas 

critical to cancer health disparities and to commit 

time and serious thought to the PRG process. The 

PRG identified the topics that would be addressed 

during the Breakout Group sessions at the RoundAppendix B – About the Trans-HHS Cancer Health Disparities Progress Groups B-3 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

table Meeting, identified and assembled Roundtable participants, served as Co-Chairs of the 

Breakout Groups, worked with their Co-Chairs to 

prepare the Breakout Group reports, and developed 

the overall PRG priority recommendations. If 

requested by HHS, the PRG membership will 

participate in follow-up meetings during Phases II 

and III of the PRG process. 

The Cancer Health Disparities FSC, composed of 

key HHS agency representatives and led by NCI 

staff, was responsible for overseeing and coordinating Phase I and will continue to play a similar 

role in Phases II and III of the PRG process. The 

13 FSC members were selected for their expertise 

in cancer health disparities and program services 

and their ability to bring the issues and concerns 

of their agencies to the table. During Phase I, they 

assisted in the identification of potential PRG 

members, served in a consultative role at the 

Planning and Roundtable meetings, and provided 

insight and suggestions during report preparation. 

Roundtable participants were leading members of 

the relevant cancer research, medical, industry, 

public policy, and advocacy communities selected 

for their expertise and diverse perspectives. Each 

was invited to serve on one or two Breakout 

Group sessions. Co-Chair teams for Breakout 

Groups consisted of one PRG member teamed 

with a non-PRG member with expertise in the 

topic area. Co-Chairs identified and invited the 

other members of their groups to serve as Roundtable participants, prepared read-ahead materials 

for their Breakout Groups, prepared the Breakout 

Group reports, and assisted in developing PRG 

priority recommendations. 

Tools Used by the PRG 

Background Paper 

To assist the PRG and Roundtable participants in 

reviewing the current state of the field in cancer 

health disparities, the Health Disparities Working 

Group within the NCI Division of Cancer Control 

and Population Sciences (DCCPS) prepared a 

background paper that included a review of recent 

publications and reproducible, peer-reviewed 

findings concerning the nature and magnitude of 

cancer health disparities and their underlying 

correlates. 

Concept Mapping 

The NCI DCCPS also led a concept mapping effort that helped identify the priorities and specific 

subtopic areas considered important to cancer 

health disparities by the community of experts 

identified for participation in this effort. Experts 

from government, academia, and nonprofit organizations were asked to complete the sentence: 

Specific actions that should be taken to 

eliminate cancer health disparities in the 

United States are (fill in the blank) . 

By eliminating duplication and overlap, it was 

possible to cull down the 456 original responses 

received to a core set of 114 statements. By 

statistically analyzing the ways in which experts 

subdivided these statements into groups, based on 

similarity, nine clusters or related concepts were 

identified. These clusters plus one PRG-identified 

topic area formed the basis for the 10 Roundtable 

Breakout Groups. 

HHS Program and Project Database 

In partnership with the HHS Office of Minority 

Health, the NCI Center to Reduce Cancer Health 

Disparities developed a database to catalog and 

make available information on the major cancerand disparities-related programs supported by 

HHS Offices and agencies. Included in this 

project database are programs and projects from: 

• HHS Office on Women’s Health (OWH) 

• HHS Office of Minority Health (OMH) 

• Administration on Aging (AoA) 

• Agency for Healthcare Research and Quality 

(AHRQ) 

• Centers for Disease Control and Prevention 

(CDC) 

• Centers for Medicare and Medicaid Services 

(CMS) 

• Food and Drug Administration (FDA) 

• Health Resources and Services 

Administration (HRSA) 

• National Institutes of Health (NIH) 

– National Cancer Institute (NCI) 

– National Center on Minority Health and 

Health Disparities (NCMHD) 

– National Heart, Lung, and Blood Institute 

(NHLBI) 

B-4 Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

– National Human Genome Research Institute 

(NHGRI) 

– National Institute of Aging (NIA) 

– Substance Abuse and Mental Health 

Services Administration (SAMHSA) 

The database can be searched by factors such as 

race/ethnicity, gender, cancer site, geographic 

location, cancer care continuum, and service 

provided. 

Development of PRG Priority 

Recommendations 

The priority recommendations of the Trans-HHS 

Cancer Health Disparities PRG Call to Action 

were derived via a selection process that began 

with the 456 responses obtained in support of the 

concept mapping study (Figure B-3). Of paramount importance to selection of the final 14 PRG 

priority recommendations were the 29 priority 

recommendations developed by the 10 Roundtable Breakout Groups. As shown in Table B-1, 

each final PRG recommendation had its origins in 

one or more of the Roundtable recommendations. 

(The recommendations developed by each Breakout Group can be found in Appendix A, along 

with the rationales for their selection and issues of 

importance for their implementation.) 

An initial set of PRG priority recommendations 

was developed at the conclusion of the Roundtable Meeting. Through an iterative process 

involving the PRG and PRG leadership, these 

recommendations were refined into an integrated 

Call to Action – a plan that will allow HHS to 

advance in the areas of Planning and Coordination, Discovery, Development, and Delivery. 

During the refinement process, careful attention 

was paid to ensuring that each recommendation 

addressed actions that fall within the purview of 

HHS and its agencies. Although HHS retains 

Figure B-3. Development of the 14 PRG 

Priority Recommendations 

authority to implement the recommendations in 

ways deemed most fit by the Department’s leadership, suggestions have been provided for HHS 

consideration, including a phased plan for initiating efforts on the 14 priority recommendations. 

Preparation of This Final Report 

This final report was prepared in the 4-month period following the Roundtable Meeting. Through 

frequent interaction, the PRG and FSC leadership 

developed a vision for presenting the PRG’s findings and recommendations. The report attempts 

to address all of the important issues raised by 

PRG members and Roundtable participants and to 

communicate the passion that was displayed during the Roundtable Meeting. 

Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups B-5 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Table B-1. The PRG Priority Recommendations Derived from the 

Recommendations of the Roundtable Breakout Groups 

PRG Priority Recommendaton Roundtable Breakout Group Recommendation 

Planning and Coordination 

Conduct a program and budget 

review of all relevant HHS programs for the purpose of shifting 

and realigning support, where 

possible, to evidence-based 

programs that are effective in 

addressing cancer health 

disparities. 

Research Policy, Priority Recommendation 3 (page A-11) 

Establish an HHS center to evaluate and translate cancer disparities research and coordinate 

implementation of the findings. 

Changes and Implementation of Public Policy, Priority Recommendation 1 (page A-40) 

Review of HHS programs for realignment of funds. 

Changes and Implementation of Public Policy, Priority Recommendation 2 (page A-41) 

Comprehensive trans-HHS plan to reduce cancer health disparities. 

Assemble a Federal Leadership 

Council on Cancer Health Disparities led by the HHS Secretary in 

partnership with the Secretaries 

of other appropriate Federal departments to mobilize available 

resources in a comprehensive 

national effort to eliminate cancer 

health disparities. 

Facilitating Partnerships for Action Priority Recommendation 2 (page A-27) 

HHS should identify and work with other public and private organizations to develop and 

implement a national “CALL TO ACTION” agenda to eliminate cancer health disparities. 

Inequity and Social Injustice, Priority Recommendation 1 (page A-37) 

Establish a Leadership Council on Health, Inequity, and Social Justice convened by the 

Secretary of the Department of Health and Human Services in partnership with the Secretaries 

of the other Federal departments. This Council will mobilize and direct national resources in a 

comprehensive national effort to improve the health of the American people, including the 

elimination of health disparities. 

Implement, in all HHS health 

service and reimbursement agencies, recommendations from the 

Institute of Medicine Report 

entitled Unequal Treatment: 

Confronting Racial and Ethnic 

Disparities in Healthcare. 

Culturally Competent Health Care Systems, Priority Recommendation 1 (page A-22) 

Implement recommendations regarding cancer care from the Institute of Medicine Report 

entitled Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. 

Discovery 

Evaluate specific grant and contract processes to determine what 

additional steps are needed to 

enhance the cultural competence, 

representative composition, and 

methodological expertise of peer 

review panels for cancer health 

disparities research. 

Enhancing the Level and Quality of Health Disparities Research, Priority 

Recommendation 2 (page A-8) 

Establish specific peer review grant and contract entities and processes that have the 

necessary expertise, knowledge, and experience to fairly and equitably evaluate health 

disparities research proposals and/or projects. 

Establish new approaches for 

data and collection sharing to aid 

in the study of the effects of cancer and their relationship to variables such as race, ethnicity, and 

socioeconomic status. 

Methods, Measurement, and Reporting, Priority Recommendation 1 (page A-4) 

HHS should require Federal agencies and strongly encourage state, local, and 

nongovernmental agencies to use a standardized minimum core set of measures of “race and 

ethnicity” and socioeconomic status in the collection and reporting of data. 

Methods, Measurement, and Reporting, Priority Recommendation 2 (page A-5) 

HHS should commission a National Academy of Sciences committee to assess and monitor 

cross-cultural equivalence of theoretical models, methods, measures, and modes of 

administration underlying data collection with diverse populations. 

Methods, Measurement, and Reporting, Priority Recommendation 3 (page A-5) 

HHS should require geocoding of all health records to latitude and longitude or to census tract 

to facilitate linkage to other geo-referenced data. 

Research Policy, Priority Recommendation 1 (page A-9) 

Establish a trans-HHS database that centralizes and standardizes cancer and cancer-related 

data. 

B-6 Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Table B-1. The PRG Priority Recommendations Derived from the 

Recommendations of the Roundtable Breakout Groups (cont.) 

PRG Priority Recommendaton Roundtable Breakout Group Recommendation 

Discovery (cont.) 

Increase the proportion of HHS 

agency support targeted specifically to disease prevention, 

health promotion, evaluation, and 

translational research on cancer 

health disparities. 

Enhancing the Level and Quality of Health Disparities Research, Priority 

Recommendation 3 (page A-8) 

Significantly increase the proportion of funding within each agency of HHS targeted to 

prevention, health promotion, and translational cancer health disparities research with an 

emphasis on efficacy, effectiveness, and cost effectiveness. 

Establish partnerships for and 

support the development of 

sustainable community-based 

networks for participatory 

research in areas of high cancer 

disparities. 

Enhancing the Level and Quality of Health Disparities Research, Priority 

Recommendation 1 (page A-7) 

HHS should provide the funds necessary to fully develop and sustain community-based 

participatory research resource support networks that focus exclusively on multidisciplinary 

cancer health disparities research, independent of individual project funding. 

Facilitating Partnerships for Action, Priority Recommendation 3 (page A-27) 

HHS leadership must articulate an entity within the Department that will have responsibility 

and resources to establish effective partnerships necessary to eliminate health disparities in 

cancer. 

Research Policy, Priority Recommendation 2 (page A-10) 

Establish, recruit, fund, and evaluate community research infrastructures (units), in areas of 

large cancer disparities, to collaborate in all stages of the research process. 

Development 

Develop and implement a new 

trans-HHS initiative to qualify high 

disparity geographic areas for 

special program designation as 

Communities Empowered to 

Eliminate Disparities. Communities would qualify for the program 

by submitting strategic plans to 

reduce specific cancer disparities 

for identifiable populations. 

Facilitating Partnerships for Action, Priority Recommendation 1 (page A-27) 

Establish a National Informed Health Choices Program to educate communities about the 

known risk reduction measures that are effective in reducing cancer. 

Access to Quality Cancer Services, Priority Recommendation 2 (page A-16) 

Provide and sustain funding for coalitions, partnerships, and community-based quality cancer 

services, education, and prevention programs. 

Inequity and Social Injustice, Priority Recommendation 3 (page A-38) 

Target special resources to geographic areas of excess cancer mortality and work toward 

universal access to health care. 

Changes and Implementation of Public Policy, Priority Recommendation 3 (page A-41) 

Communities Empowered to Eliminate Disparities. 

Develop, implement, and 

evaluate education and training 

programs designed to create a 

diverse and culturally competent 

cancer care workforce. Apply 

standards to certify the cultural 

competence of health 

professionals who receive 

Federal support. 

Culturally and Linguistically Competent Education and Training, Priority 

Recommendation 1 (page A-33) 

Require that all health care institutions and organizations receiving Federal funds demonstrate 

cultural and linguistic competency, as defined by HHS ‘s Office of Minority Health Culturally 

and Linguistically Appropriate Services (CLAS). 

Culturally and Linguistically Competent Education and Training, Priority 

Recommendation 2 (page A-34) 

Fund the development of innovative education and training programs to create a diverse and 

culturally competent health care workforce that is representative of the communities it serves. 

These programs would target education and training programs for K-16+ ethnic/racial groups 

and nontraditional students. 

Culturally Competent Health Care Systems, Priority Recommendation 2 (page A-22) 

Update HHS Cultural Competency Standards and mandate compliance with these standards 

to qualify for Federal funding. 

Culturally Competent Health Care Systems, Priority Recommendation 3 (page A-22) 

Require all health care professionals on all levels (Federal, academic, community, etc.) to 

have cultural competency training. 

Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups B-7 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Table B-1. The PRG Priority Recommendations Derived from the 

Recommendations of the Roundtable Breakout Groups (cont.) 

PRG Priority Recommendaton Roundtable Breakout Group Recommendation 

Delivery 

Implement evidence-based 

tobacco control strategies, including those that create financial 

disincentives for tobacco consumption and those that provide 

social reinforcement for not 

smoking. 

Implementing Evidence-Based Programs to Reduce Cancer Health Disparities, Priority 

Recommendation 1 (page A-30) 

Broadly implement interventions that have been proven to reduce tobacco use, including: 

• A Federal excise tax, as recommended by the Subcommittee on Cessation of the 

Interagency Committee on Smoking and Health 

• Comprehensive community-based prevention programs targeted to adolescents 

• Cessation services, including pharmacotherapy and counseling 

Ensure that populations at highest risk have access to age- and 

gender-appropriate screening 

and follow-up services for breast, 

cervical, and colorectal cancer. 

Expand to include these services 

for other cancers (e.g., prostate 

and lung) when there is evidence 

that they are effective at improving survival. 

Implementing Evidence-Based Programs to Reduce Cancer Health Disparities, Priority 

Recommendation 2 (page A-30) 

Fund screening for breast, cervical, and colorectal cancer for all age-appropriate populations 

in the United States that do not now have health insurance, in combination with culturally 

appropriate outreach and education addressing routine, repeat screening, and provide cancer 

treatment for anyone who would qualify for these programs. 

Support culturally, linguistically, 

and literacy specific approaches 

for eliminating cancer health disparities. These should include 

evidence-based “best practices,” 

proven interventions, and outreach strategies. 

Access to Quality Cancer Services, Priority Recommendation 3 (page A-17) 

Promote interventions and ensure accountability for culturally competent, quality cancer care 

addressing the unequal burden of disease. 

Culturally and Linguistically Competent Education and Training, Priority 

Recommendation 3 (page A-35) 

HHS should fund development, identification, dissemination, and delivery of “best practices,” 

model approaches, and outreach strategies for culturally, linguistically, and literacy specific 

cancer communications and health promotions, in partnership with cancer survivors, 

caregivers, and community advocacy organizations. 

Ensure that every cancer patient 

has access to “state-of-thescience” care. 

Inequity and Social Injustice, Priority Recommendation 2 (page A-38) 

Eliminate inequity and social injustice in the delivery of what we currently know to be effective 

in cancer prevention and care. Specifically, no person with cancer should go untreated. 

Inequity and Social Injustice, Priority Recommendation 3 (page A-38) 

Target special resources to geographic areas of excess cancer mortality and work toward 

universal access to health care. 

Collaborate with the private and 

voluntary health sectors to assure 

that all Americans receive the full 

range of lifesaving information, 

services, and quality care from 

cancer prevention to screening to 

diagnosis to treatment. 

Facilitating Partnerships for Action, Priority Recommendation 2 (page A-27) 

HHS should identify and work with other public and private organizations to develop and 

implement a national “CALL TO ACTION” agenda to eliminate cancer health disparities. 

Access to Quality Cancer Services, Priority Recommendation 1 (page A-15) 

Assure access to comprehensive (prevention, screening, diagnosis, treatment, quality of life, 

palliative, end of life), continuously funded, integrated health care for all people, including 

insurance coverage. 

Inequity and Social Injustice, Priority Recommendation 3 (page A-38) 

Target special resources to geographic areas of excess cancer mortality and work toward 

universal access to health care. 

B-8 Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

PROGRESS REVIEW GROUP MEMBERS 

Moon S. Chen, Jr., Ph.D., M.P.H. 

PRG Co-Chair 

University of California, Davis 

Diana M. Lopez, Ph.D. 

PRG Co-Chair 

University of Miami 

School of Medicine 

Yvonne T. Maddox, Ph.D. 

PRG Executive Director 

National Institutes of Health

National Institute of Child Health and Human 

Development

Cheryl A. Boyce, M.S. 

Ohio Commission on Minority Health 

Linda Burhansstipanov, Dr.P.H., M.S.P.H. 

Native American Cancer Research Corp. 

Mark S. Clanton, M.D., M.P.H. 

American Cancer Society 

Harold P. Freeman, M.D. 

National Institutes of Health 

National Cancer Institute 

Venus Ginés, M.A. 

Dia de la Mujer Latina, Incorporated 

Robert A. Hiatt, M.D., Ph.D. 

University of California, San Francisco 

Grazell R. Howard, J.D. 

National Coalition of 100 Black Women 

Libra Group, Ltd. 

Fatimah L. C. Jackson, Ph.D. 

University of Maryland 

Judith S. Kaur, M.D. 

Mayo Clinic 

Amanullah Khan, M.D, Ph.D. 

Cancer Center Associates 

Ruth Zu-Kei C. Lin, R.N., M.S., A.O.C.N. 

Morristown Memorial Hospital 

John Maupin, Jr., D.D.S. 

Meharry Medical College 

Sandra Millon-Underwood, Ph.D., R.N., F.A.A.N. 

University of Wisconsin Milwaukee 

Augusto C. Ochoa, M.D. 

Louisiana State University 

Edward E. Partridge, M.D. 

University of Alabama at Birmingham 

Elena V. Rios, M.D., M.S.P.H. 

National Hispanic Medical Association 

José Russo, M.D. 

Fox Chase Cancer Center 

Nathan Stinson, Jr., M.D., Ph.D., M.P.H. 

Department of Health and Human Services 

Office of Minority Health 

Emmanuel A. Taylor, Dr.P.H., M.Sc. 

Health Information Management Associates 

Armin D. Weinberg, Ph.D. 

Baylor College of Medicine 

Intercultural Cancer Council 

COL (Ret) James E. Williams, Jr. 

Alliance for Prostate Cancer Prevention 

Intercultural Cancer Council 

Pennsylvania Prostate Cancer Coalition 

Appendix B – About the Tran-HHS Cancer Health Disparities Progress Review Group B-9 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

FEDERAL STEERING COMMITTEE MEMBERS 

Cherie Nichols, M.B.A. 

Chair, Federal Steering Committee 

National Institutes of Health 

National Cancer Institute 

Duiona Baker, M.P.H. 

Substance Abuse and Mental Health Services 

Administration 

Brenda Evelyn 

Food and Drug Administration 

Kaytura Felix-Aaron, M.D. 

Agency for Healthcare Research and Quality 

Dianne A. Freeman, M.A. 

Department of Health and Human Services 

Administration on Aging 

M. June Horner 

Department of Health and Human Services Office 

of Minority Health 

Wanda K. Jones, Dr.P.H. 

Department of Health and Human Services 

Office on Women’s Health 

Jon Kerner, Ph.D. 

National Institutes of Health 

National Cancer Institute 

Kevin Nash, M.A. 

Centers for Medicare and Medicaid Services 

John Ruffin, M.D. 

National Center on Minority Health and Health 

Disparities 

Nathan Stinson, Jr., M.D., Ph.D., M.P.H. 

Department of Health and Human Services 

Office of Minority Health 

William Vanderwagen, M.D. 

Indian Health Services 

Walter W. Williams, M.D., M.P.H. 

Centers for Disease Control and Prevention 

Appendix B – About the Tran-HHS Cancer Health Disparities Progress Review Group B-11 

Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

ROUNDTABLE PARTICIPANTS 

Nancy E. Adler, Ph.D. 

University of California, San Francisco 

Lawrence Agodoa, M.D. 

National Institutes of Health, National Institute of 

Diabetes and Digestive and Kidney Diseases 

Peter B. Bach, M.D., M.A.P.P. 

Memorial Sloan-Kettering Cancer Center 

Duiona Baker, M.P.H. 

Substance Abuse and Mental Health Services 

Administration 

Dileep G. Bal, M.D. 

California Department of Health Services 

Claudia R. Baquet, M.D., M.P.H. 

University of Maryland School of Medicine 

Bruce Behringer, M.P.H. 

East Tennessee State University 

COL Kenneth A. Bertram, M.D., Ph.D. 

Department of Defense, Congressionally Directed 

Medical Research Programs 

Sarita Bhalotra, M.D., Ph.D. 

Brandeis University 

Joan R. Bloom, Ph.D. 

University of California 

Nancy Breen, Ph.D. 

National Institutes of Health 

National Cancer Institute 

Yvonne Bronner, Sc.D., R.D., L.D. 

Morgan State University 

E. Richard Brown, Ph.D. 

UCLA Center for Health Policy Research 

Linda Brown, Dr.P.H. 

National Institutes of Health 

National Cancer Institute 

Pamela K. Brown, M.P.A. 

Mary Babb Randolph Cancer Center, School of 

Medicine, West Virginia University 

Zora Brown 

Cancer Awareness Program Services, Inc. 

Linda Burhansstipanov, Dr.P.H., M.S.P.H. 

Native American Cancer Research Corp. 

Tim Byers, M.D., M.P.H. 

University of Colorado School of Medicine 

Nelvis Castro 

National Institutes of Health, National Cancer 

Institute 

Jean Chabut, B.S.N., M.P.H. 

State of Michigan 

Moon S. Chen, Jr., Ph.D., M.P.H. 

University of California, Davis 

Janice A. Chilton, Dr.P.H., M.P.H., M.A. 

University of Texas M.D. Anderson Cancer 

Center 

Mark S. Clanton, M.D., M.P.H. 

American Cancer Society 

Gayle Clutter, R.T., CTR 

Centers for Disease Control and Prevention 

Jennie R. Cook 

Intercultural Cancer Council Caucus 

Elizabeth K. Cooke 

Health Choice Network, Inc. 

William A. Darity, Ph.D. 

University of Massachusetts-Amherst 

Jane L. Daye, M.A. 

National Institutes of Health 

National Cancer Institute 

Robert Dittus, M.D., M.P.H. 

Vanderbilt University Medical Center 

Paula Espinoza, Ph.D. 

University of Colorado at Denver 

Lloyd Everson, M.D. 

US Oncology 

Suzanne Feetham, Ph.D., R.N., F.A.A.N. 

Health Resources and Services Administration 

Kaytura Felix-Aaron, M.D. 

Agency for Healthcare Research and Quality 

Center for Primary Care Research 

Appendix B – About the Tran-HHS Cancer Health Disparities Progress Review Group B-13 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Estevan T. Flores, Ph.D. 

University of Colorado at Denver 

Katherine A. Flores, M.D. 

University of California, San Francisco School of 

Medicine 

Judy Ford, M.P.H., M.H.S. 

American Legacy Foundation 

Dianne A. Freeman, M.A. 

Department of Health and Human Services 

Administration on Aging 

Harold P. Freeman, M.D. 

National Institutes of Health 

National Cancer Institute 

Venus Ginés, M.A. 

Dia de la Mujer Latina, Incorporated 

Thomas J. Glynn, Ph.D. 

American Cancer Society 

Frank Govern, Ph.D. 

National Institutes of Health 

National Cancer Institute 

James W. Hampton, M.D. 

Troy and Dollie Smith Cancer Center 

Ellen J. Heier, M.H.S. 

American Cancer Society 

Suzanne Heurtin-Roberts, Ph.D., M.S.W. 

National Institutes of Health 

National Cancer Institute 

Robert A. Hiatt, M.D., Ph.D. 

University of California, San Francisco 

M. Carolina Hinestrosa, M.A., M.P.H. 

Nueva Vida 

M. June Horner 

Department of Health and Human Services, 

Office of Minority Health 

Grazell R. Howard, J.D. 

National Coalition of 100 Black Women 

Libra Group, Ltd. 

Elmer E. Huerta, M.D., M.P.H. 

Washington Hospital Center 

Sandral Hullett, M.D., M.P.H. 

Cooper Green Hospital 

Mildred C. Hunter, M.S.W., M.P.H 

Department of Health and Human Services 

Fatimah L. C. Jackson, Ph.D. 

University of Maryland 

Jennie R. Joe, Ph.D., M.P.H. 

University of Arizona 

Marguerite Johnson 

W. K. Kellogg Foundation 

Camara P. Jones, M.D., Ph.D., M.P.H. 

Centers for Disease Control and Prevention 

Lovell Jones, Ph.D. 

University of Texas M.D. 

Anderson Cancer Center 

Wanda K. Jones, Dr.P.H. 

Department of Health and Human Services 

Office on Women’s Health 

Paul D. Juarez, Ph.D. 

White Memorial Medical Center 

Momi Kaanoi, M.D. 

Imi Hale - Native Hawaiian Cancer Network 

Marjorie Kagawa-Singer, Ph.D., M.N., R.N. 

University of California Los Angeles 

Mireille B. Kanda, M.D., M.P.H. 

National Center on Minority Health and 

Health Disparities 

Judith S. Kaur, M.D. 

Mayo Clinic 

Amanullah Khan, M.D, Ph.D. 

Cancer Center Associates 

Cheryl Y. Kidd, M.P.H 

Susan G. Komen Breast Cancer Foundation 

Nancy Krieger, Ph.D. 

Harvard School of Public Health 

Barbara Krimgold 

Center for the Advancement of Health 

Thomas A. LaVeist, Ph.D. 

Johns Hopkins Bloomberg School of Public 

Health 

Ruth Zu-Kei C. Lin, R.N., M.S., A.O.C.N. 

Morristown Memorial Hospital 

B-14 Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Diana M. Lopez, Ph.D. 

University of Miami School of Medicine 

Gena Love 

New Mexico Department of Health 

Yvonne T. Maddox, Ph.D. 

National Institutes of Health

National Institute of Child Health and Human 

Development

Michelle B. Marrs, M.B.A., Ed.M., B.S. 

Mathew Walker Comprehensive Health Center, 

Inc. 

John Maupin, Jr., D.D.S. 

Meharry Medical College 

Vickie M. Mays, Ph.D., M.S.P.H. 

University of California, Los Angeles 

Worta McCaskill-Stevens, M.D. 

National Institutes of Health 

National Cancer Institute 

Cathy D. Meade, Ph.D., R.N., F.A.A.N. 

H. Lee Moffitt Cancer Center and Research 

Institute 

Martha A. Medrano, M.D., M.P.H. 

University of Texas Health Science Center at San 

Antonio 

Sandra Millon-Underwood, Ph.D., R.N., F.A.A.N. 

University of Wisconsin Milwaukee 

JoAnn M. Minor, M.S. 

Food and Drug Administration 

Edith P. Mitchell, M.D., F.A.C.P. 

Thomas Jefferson University 

Ben Muneta 

Indian Health Services 

Kevin Nash 

Centers for Medicare and Medicaid Services 

Cherie Nichols, M.B.A. 

National Institutes of Health 

National Cancer Institute 

Paul L. Nusbaum 

West Virginia Department of Health and Human 

Resources 

Augusto C. Ochoa, M.D. 

Louisiana State University 

Yolanda Partida, M.S.W., D.P.A. 

Hablamos Juntos 

Edward E. Partridge, M.D. 

University of Alabama at Birmingham 

Rena J. Pasick, Dr.P.H. 

University of California Comprehensive Cancer 

Center 

James L. Phillips, M.D. 

Baylor College of Medicine 

Ninez Ponce, Ph.D., M.P.P. 

UCLA School of Public Health 

Bobbie J. Primus-Cotton, Ed.D., M.P.H.,R.N. 

Professional Images 

Amelie G. Ramirez, Dr.P.H. 

Baylor College of Medicine 

Gary M. Reedy 

Johnson & Johnson 

Elena V. Rios, M.D., M.S.P.H. 

National Hispanic Medical Association 

Nelson Robles, M.D. 

Centro de Cancer de la Montana 

Angel Rubio, M.A. 

University of Kentucky, Appalachia Cancer 

Network 

José Russo, M.D. 

Fox Chase Cancer Center 

Stacy D. Scott, M.P.A., L.S.W. 

National Black Reproductive and Child Health 

Institute 

Maria L. Soto-Greene, M.D. 

New Jersey Medical School of the University of 

Medicine and Dentistry of New Jersey 

Eduardo M. Sotomayor, M.D. 

University of South Florida/H. Lee Moffitt Cancer 

Center & Research Institute 

Kevin U. Stephens, Sr., M.D., J.D. 

City of New Orleans 

Appendix B – About the Tran-HHS Cancer Health Disparities Progress Review Group B-15 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Nathan Stinson, Jr., M.D., Ph.D., M.P.H. 

Department of Health and Human Services 

Office of Minority Health 

Louis W. Sullivan, M.D. 

Morehouse School of Medicine 

David Takeuchi, Ph.D. 

University of Washington 

Gregory A. Talavera, M.D., M.P.H. 

San Diego State University 

Emmanuel A. Taylor, Dr.P.H., M.Sc. 

Health Information Management Associates 

Kathryn L. Taylor, Ph.D. 

Lombardi Cancer Center, Georgetown University 

Ho L. Tran, M.D., M.P.H. 

Asian & Pacific Islander American Health Forum 

Edward Trapido, Sc.D. 

National Institutes of Health 

National Cancer Institute 

Edward Trimble, M.D., M.P.H. 

National Institutes of Health 

National Cancer Institute 

Carlos A. Ugarte, M.S.P.H. 

National Council of La Raza 

Shalini Vallabhan, Ph.D. 

American Cancer Society 

Carmina Valle, M.P.H. 

National Institutes of Health 

National Cancer Institute 

Cynthia Vinson 

National Institutes of Health 

National Cancer Institute 

Nadarajen A. Vydelingum, Ph.D. 

National Institutes of Health 

National Cancer Institute 

Bailus Walker, Jr., Ph.D., M.P.H. 

Howard University Medical Center 

Richard Warnecke, Ph.D. 

University of Illinois 

Rueben Warren, D.D.S., Dr.P.H., M.P.H. 

Agency for Toxic Substances and Disease 

Registry 

Armin D. Weinberg, Ph.D. 

Baylor College of Medicine 

Intercultural Cancer Council 

Tony L. Whitehead, Ph.D., MsHyg. 

University of Maryland 

Fay H. Williams 

National Coalition of 100 Black Women 

COL (Ret) James E. Williams, Jr. 

Alliance for Prostate Cancer Prevention 

Intercultural Cancer Council 

Pennsylvania Prostate Cancer Coalition 

Walter W. Williams, M.D., M.P.H. 

Centers for Disease Control and Prevention 

B-16 Appendix B – About the Trans-HHS Cancer Health Disparities Progress Groups 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Appendix C 

Alignment of PRG Priority Recommendations with Goals, 

Objectives, and Recommendations of Importance to HHS 

Implementation of the Trans-HHS Cancer Health 

Disparities Progress Review Group (PRG) Call to 

Action will assist the Department of Health and 

Human Services (HHS) in meeting two of the four 

specific HHS goals for cancer health disparities, 

and the overarching goals of the Healthy People 

2010 [1] agenda to increase quality and years of 

healthy life and to eliminate health disparities. 

These actions will address many of the recommendations made by the following other expert 

panels that were recently convened to assess 

cancer and other health disparities: 

• Committee on Understanding and Eliminating 

Racial and Ethnic Disparities in Health 

Care [2] 

• National Cancer Policy Board [3] 

• Committee on Cancer Research among 

Minorities and the Medically Underserved [4] 

• President’s Cancer Panel [5] 

Table C-1 shows how the 14 individual PRG 

priority recommendations align with the goals, 

objectives, and recommendations of these other 

groups. Embedded within the table is a highlighted box listing the 21 recommendations 

deriving from the report Unequal Treatment: 

Confronting Racial and Ethnic Disparities in 

Healthcare. [2] These recommendations are 

incorporated into the PRG priority recommendations by specific reference. 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Planning and Coordination 

Conduct a program and 

budget review of all relevant 

HHS programs for the 

purpose of shifting and 

realigning support, where 

possible, to evidence-based 

programs that are effective 

in addressing cancer health 

disparities. (For Initiation 

within 1 Year) 

HHS Cancer Health Disparities Goals 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care 

Recommendations 

• Promote the consistency and equity of care through the use of evidence-based guidelines. 

• Conduct further research to identify sources of racial and ethnic disparities and assess promising 

intervention strategies. 

National Cancer Policy Board Recommendations 

• The U.S. Department of Health and Human Services should complete a comprehensive review to 

assess whether evidence-based prevention services are being offered and successfully delivered 

in Federal health programs. 

Assemble a Federal Leadership Council on Cancer 

Health Disparities led by the 

HHS Secretary in partnership with the Secretaries of 

other appropriate Federal 

departments to mobilize 

available resources in a 

comprehensive national 

effort to eliminate cancer 

health disparities. (For 

Initiation within 1 Year) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Appendix C– Alignment of PRG Priority Recommendations with Goals, C-1 

Objectives, and Recommendations of Importance to HHS 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Planning and Coordination (cont.) 

Implement, in all HHS 

health service and 

reimbursement agencies, 

recommendations from the 

Institute of Medicine Report 

entitled Unequal Treatment: 

Confronting Racial and 

Ethnic Disparities in 

Healthcare. (For Initiation 

within 3 Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care 

Recommendations 

• Increase awareness of racial and ethnic disparities in health care among the general public and 

key stakeholders. 

• Increase health care providers’ awareness of disparities. 

• Avoid fragmentation of health plans along socioeconomic lines. 

• Strengthen the stability of patient-provider relationships in publicly funded health plans 

• Increase the proportion of underrepresented U.S. racial and ethnic minorities among health 

professionals. 

• Apply the same managed care protections to publicly funded HMO enrollees that apply to private 

HMO enrollees. 

• Provide greater resources to the U.S. DHHS Office of Civil Rights to enforce civil rights laws. 

• Promote the consistency and equity of care through the use of evidence-based guidelines. 

• Structure payment systems to ensure an adequate supply of services to minority patients and 

limit provider incentives that may promote disparities. 

• Enhance patient-provided communication and trust by providing financial incentives for practices 

that reduce barriers and encourage evidence-based practice. 

• Support the use of interpretation services where community need exists. 

• Support the use of community health workers. 

• Implement multidisciplinary treatment and preventive care teams. 

• Implement patient education programs to increase patients’ knowledge of how to best access 

care and participate in treatment decisions. 

• Integrate cross-cultural education into the training of all current and future health professionals. 

• Collect and report data on health care access and utilization by patients’ race, ethnicity, 

socioeconomic status, and where possible, primary language. 

• Include measures of racial and ethnic disparities in performance measurement. 

• Monitor progress toward the elimination of health care disparities. 

• Report racial and ethnic data by OMB categories, but use subpopulation groups where possible. 

• Conduct further research to identify sources of racial and ethnic disparities and assess promising 

intervention strategies. 

• Conduct research on ethical issues and other barriers to eliminating disparities. 

C-2 Appendix C– Alignment of PRG Priority Recommendations with Goals, 

Objectives, and Recommendations of Importance to HHS 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Discovery 

Evaluate specific grant and 

contract processes to determine what additional steps 

are needed to enhance the 

cultural competence, representative composition, and 

methodological expertise of 

peer review panels for 

cancer health disparities 

research. (For Initiation 

within 1 Year) 

HHS Cancer Health Disparities Goals 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Committee on Cancer Research among Minorities and the Medically Underserved 

Recommendations 

• Research and research funding relevant to cancer among ethnic minority and medically 

underserved populations should be more adequately assessed and should be increased. 

• NIH should improve the accuracy of its assessment of research that is relevant to ethnic minority 

and medically underserved groups by replacing the current “percent relevancy” accounting 

method with one that identifies studies whose purpose is to address a priori research questions 

uniquely affecting ethnic minority and medically underserved groups. 

• NCI should develop a process to increase the representation of ethnically diverse researchers 

and public representatives serving on all advisory and program review committees so that the 

makeup of these committees reflects the changing diversity of the U.S. population. NCI should 

develop an evaluation plan to assess the effect of increased and more diversified ethnic minority 

community and researcher input on changes in NCI policies and priorities toward ethnic minority 

cancer issues. 

• The research needs of ethnic minority and medically underserved groups should be identified on 

the basis of the burden of cancer in these populations, with an assessment of the most 

appropriate areas of research (e.g., behavioral and social sciences, biology, epidemiology and 

genetics, prevention and control, and treatment). 

• For NCI to address the needs of ethnically diverse and medically underserved populations 

effectively, the Office of Special Populations Research (or some other designated entity or 

entities) must possess the authority to coordinate and leverage programs and resources across 

the divisions and branches of NCI to stimulate research on ethnic minority and medically 

underserved populations. This authority can be established by providing such an office with: 

– special resources to fund programs specifically targeted to these populations, or 

– accountability for the institution-wide allocation of program resources. 

• Investigator-initiated research must be supplemented to ensure that the cancer research needs of 

ethnic minority and medically underserved populations are addressed. 

Appendix C – Alignment of PRG Priority Recommendations with Goals, C-3 

Objectives, and Recommendations of Importance to HHS 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Discovery (cont.) 

Establish new approaches 

for data collection and sharing to aid in the study of the 

effects of cancer and their 

relationship to variables 

such as race, ethnicity, and 

socioeconomic status. (For 

Initiation within 2 Years) 

HHS Cancer Health Disparities Goals 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Healthy People 2010 Objectives 

• Increase the proportion of all major national, state, and local health data systems that use 

geocoding to promote nationwide use of geographic information systems at all levels. 

• Increase the proportion of population-based Healthy People 2010 objectives for which national 

data are available for all population groups identified for the objective. 

Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care 

Recommendations 

• Collect and report data on health care access and utilization by patients’ race, ethnicity, 

socioeconomic status, and where possible, primary language. 

• Include measures of racial and ethnic disparities in performance measurement. 

• Monitor progress toward the elimination of health care disparities. 

• Report racial and ethnic data by Office of Management and Budget (OMB) categories, but use 

subpopulation groups where possible. 

Committee on Cancer Research among Minorities and the Medically Underserved 

Recommendations 

• To further enhance the excellent data provided in the Surveillance, Epidemiology, and End 

Results (SEER) program database, adequate resources should be provided to expand SEER 

program coverage beyond the existing sites to include high-risk populations for which SEER 

program coverage is lacking. This expansion should address a wider range of demographic and 

social characteristics by using consistent nomenclature and a uniform data set and by reflecting 

the diverse characteristics of the current U.S. population. 

• NCI should continue to work with the North American Association of Central Cancer Registries 

and other organizations to expand the coverage and enhance the quality of the 45 non-SEER 

program state cancer registries, with the intent of ultimately achieving—together with the SEER 

program state registries—two goals: (1) a truly national data set obtained through a system of 

longitudinal population-based cancer registries covering the entire country, and (2) a reliable 

database for each state to serve as the basis for both the development and the evaluation of 

cancer control efforts in that state. 

• Annual reporting of cancer surveillance data and population-based research needs to be 

expanded to include survival data for all ethnic groups, as well as for medically underserved 

populations. 

• The committee recommends an emphasis on ethnic groups rather than on race in NIH’s cancer 

surveillance and other population research. This implies a conceptual shift away from the 

emphasis on fundamental biological differences among “racial” groups to an appreciation of the 

range of cultural and behavioral attitudes, beliefs, lifestyle patterns, diet, environmental living 

conditions, and other factors that may affect cancer risk. 

C-4 Appendix C– Alignment of PRG Priority Recommendations with Goals, 

Objectives, and Recommendations of Importance to HHS 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Discovery (cont.) 

Increase the proportion of 

HHS agency support targeted specifically to disease 

prevention, health promotion, evaluation, and translational research on cancer 

health disparities. (For 

Initiation within 2 Years) 

HHS Cancer Health Disparities Goals 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Committee on Cancer Research among Minorities and the Medically Underserved 

Recommendations 

• The newly established program of behavioral and social science research at NCI addresses an 

area of research that has been neglected in the past. The committee urges that this program of 

research identify as one of its highest priorities a focus on the cancer prevention, control, and 

treatment needs of ethnic minority and medically underserved groups. 

• Collaborations between NIH and research and medical institutions that serve ethnic minority and 

medically underserved populations should be increased to improve the study of cancers that 

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

research. 

Establish partnerships for 

and support the development of sustainable 

community-based networks 

for participatory research in 

areas of high cancer disparities. (For Initiation within 3 

Years) 

HHS Cancer Health Disparities Goals 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Healthy People 2010 Objectives 

• Increase the proportion of hospitals and managed care organizations that provide community 

disease prevention and health promotion activities that address the priority health needs identified 

by the community. 

• Increase the proportion of tribal and local health service areas or jurisdictions that have 

established a community health promotion program that addresses multiple Healthy People 2010 

focus areas. 

Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care 

Recommendations 

• Support the use of community health workers. 

National Cancer Policy Board Recommendations 

• The U.S. Congress should provide sufficient appropriations to the Centers for Disease Control 

and Prevention to support innovative public and private partnerships to develop, implement, and 

evaluate comprehensive community-based programs in cancer prevention and early detection. 

Every state should have and implement a comprehensive cancer control plan. 

President’s Cancer Panel Recommendations 

• Address patient and public needs for cancer information and for assistance in accessing services: 

– Provide funding to help communities coordinate, promote, and support community-based 

programs, including patient navigator programs, that help people obtain cancer information, 

screening, treatment, and supportive services. 

– Recognize that the services of non-physician personnel who are trained to conduct cancer 

screening, and provide cancer education and case management in varied settings are an 

important component of cancer care that should be reimbursed. 

Appendix C – Alignment of PRG Priority Recommendations with Goals, C-5 

Objectives, and Recommendations of Importance to HHS 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Development 

Develop and implement a 

new trans-HHS initiative to 

qualify high disparity geographic areas for special 

program designation as 

Communities Empowered to 

Eliminate Disparities. 

Communities would qualify 

for the program by 

submitting strategic plans to 

reduce specific cancer 

disparities for identifiable 

populations. (For Initiation 

within 2 Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Develop, implement, and 

carefully evaluate education 

and training programs designed to create a diverse 

and culturally competent 

cancer care workforce. 

Apply standards to certify 

the cultural competence of 

health professionals who 

receive Federal support. 

(For Initiation within 2 

Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Healthy People 2010 Objectives 

• In the health professions, allied and associated health profession fields, and the nursing field, 

increase the proportion of all degrees awarded to members of underrepresented racial and ethnic 

groups. 

• Increase the proportion of persons who report that their health care providers have satisfactory 

communication skills. 

• Increase the proportion of Federal, tribal state, and local public health agencies that provide 

continuing education to develop competency in essential public health services for their 

employees. 

• Increase the proportion of local health departments that have established culturally appropriate 

and linguistically competent community health promotion and disease prevention programs. 

Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care 

Recommendations 

• Increase health care providers’ awareness of disparities. 

• Enhance patient-provided communication and trust by providing financial incentives for practices 

that reduce barriers and encourage evidence-based practice. 

• Integrate cross-cultural education into the training of all current and future health professionals. 

President’s Cancer Panel Recommendations 

• Develop Federal policies to minimize bias in the provision of cancer care: 

– Raise awareness of unintended or overt bias through initial and continuing training of health 

care professionals at all levels, as well as administrators and others who make decisions 

affecting patient care. 

– Establish and implement systems for monitoring treatment equity. In addition, expand quality of 

care research to include issues of treatment equity. 

C-6 Appendix C– Alignment of PRG Priority Recommendations with Goals, 

Objectives, and Recommendations of Importance to HHS 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Delivery 

Implement evidence-based 

tobacco control strategies, 

including those that create 

financial disincentives for 

tobacco consumption and 

those that provide social 

reinforcement for not 

smoking. (For Initiation 

within 1 Year) 

HHS Cancer Health Disparities Goals 

• Facilitate the adoption and implementation of evidence-based policy, community programs, and 

clinical interventions and evaluate their impact on specific cancer health disparities. 

Healthy People 2010 Objectives 

• Reduce tobacco use by adults. 

• Reduce tobacco use by adolescents. 

• Increase smoking cessation attempts by adult smokers. 

• Increase tobacco use cessation attempts by adolescent smokers. 

National Cancer Policy Board Recommendations 

• The U.S. Congress and state legislatures should enact and provide funding for enforcement of 

laws to substantially reduce and ultimately eliminate the adverse public health consequences of 

tobacco use and exposure. 

• The U.S. Department of Health and Human Services should complete a comprehensive review to 

assess whether evidence-based prevention services are being offered and successfully delivered 

in Federal health programs. 

Ensure that populations at 

highest risk have access to 

age- and gender-appropriate screening and follow-up 

services for breast, cervical, 

and colorectal cancer. 

Expand to include these 

services for additional cancers (e.g., prostate, lung) 

when there is evidence that 

they are effective at improving survival. (For Initiation 

within 2 Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Healthy People 2010 Objectives 

• Reduce the breast cancer death rate. 

• Reduce the death rate from cancer of the uterine. 

• Reduce the colorectal cancer death rate. 

• Increase the proportion of women who receive a Pap test. 

• Increase the proportion of adults who receive a colorectal cancer screening examination. 

• Increase the proportion of women ages 40 years and older who have received a mammogram 

within the preceding 2 years. 

National Cancer Policy Board Recommendations 

• Public and private insurers and providers should consider evidence-based cancer prevention and 

early detection services to be essential benefits and should provide coverage for them. These 

services at a minimum should include interventions recommended in the 2000 U.S. Public Health 

Service’s clinical practice guideline on treating tobacco use and dependence, screening for breast 

cancer among women ages 50 and older, screening for cervical cancer among all sexually active 

women with an intact cervix, and screening for colorectal cancer among adults ages 50 and older. 

• The U.S. Congress should increase support for programs that provide primary care to uninsured 

and low-income people (e.g., Community and Migrant Health Centers and family planning 

programs of Title X of the Public Health Service Act). These programs increase the use of cancer 

prevention and early detection services among medically underserved populations. 

• Support for the Centers for Disease Control and Prevention’s National Breast and Cervical 

Cancer Early Detection Program should be increased so that the program can reach all uninsured 

women using innovative delivery strategies. Support is also needed for a similar program at the 

CDC to provide screening for colorectal cancer for uninsured and low-income men and women. 

Appendix C – Alignment of PRG Priority Recommendations with Goals, C-7 

Objectives, and Recommendations of Importance to HHS 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Delivery (cont.) 

Support culturally, linguistically, and literacy specific 

approaches for eliminating 

cancer health disparities. 

These should include 

evidence-based “best practices,” proven interventions, 

and outreach strategies. 

(For Initiation within 2 

Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Healthy People 2010 Objectives 

• Increase the proportion of local health departments that have established culturally appropriate 

and linguistically competent community health promotion and disease prevention programs. 

• Increase the proportion of persons who report that their health care providers have satisfactory 

communication skills. 

Committee on Cancer Research among Minorities and the Medically Underserved 

Recommendations 

• NCI should continue to work with other appropriate Federal agencies and institutional review 

boards to explore creative approaches to improving patients’ understanding of research and 

encouraging them to provide consent to participate in research. These approaches should 

address cultural bias, mistrust, literacy, and other issues that may pose barriers to the 

participation of ethnic minority and medically underserved groups. 

Ensure that every cancer 

patient has access to stateof-the-science care. (For 

Initiation within 3 Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Healthy People 2010 Objectives 

• Increase the proportion of persons who have a specific source of ongoing care. 

President’s Cancer Panel Recommendations 

• Extend state-of-the-art cancer care to rural, frontier, and other underserved areas by expanding 

the use of telemedicine and providing a reimbursement system that facilitates expansion of 

telemedicine to geographically underserved areas. 

Collaborate with the private 

and voluntary health sectors 

to ensure that all Americans 

receive the full range of 

lifesaving information, services, and quality care from 

cancer prevention to 

screening to diagnosis to 

treatment. (For Initiation 

within 3 Years) 

HHS Cancer Health Disparities Goals 

• Ensure unbiased access to continuous quality preventive care, early detection, and treatment of 

cancer for every American. 

Healthy People 2010 Objectives 

• Increase the proportion of persons with health insurance. 

• Increase the proportion of insured persons with coverage for clinical preventive services. 

• Increase the proportion of persons appropriately counseled about health behaviors. 

• Increase the proportion of persons who have a specific source of ongoing care. 

• Increase the proportion of persons with a usual primary care provider. 

• Reduce the proportion of families that experience difficulties or delays in obtaining health care or 

do not receive needed care for one or more family members. 

• Increase the proportion of health care organizations that provide patient and family education. 

• Increase the proportion of patients who report that they are satisfied with the patient education 

they receive from their health care organization. 

Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care 

Recommendations 

• Avoid fragmentation of health plans along socioeconomic lines. 

• Apply the same managed care protections to publicly funded HMO enrollees that apply to private 

HMO enrollees. 

• Structure payment systems to ensure an adequate supply of services to minority patients, and 

limit provider incentives that may promote disparities. 

C-8 Appendix C– Alignment of PRG Priority Recommendations with Goals, 

Objectives, and Recommendations of Importance to HHS 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Table C-1. Implementation of PRG Priority Recommendations Will Help Meet the Goals, 

Objectives, and Recommendations Set Forth by HHS and Previous Expert Panels (cont.) 

PRG Priority 

Recommendation 

Affected Goals, Objectives, and Recommendations 

Delivery (cont.) 

Collaborate with the 

private...(cont.) 

National Cancer Policy Board Recommendations 

• Public and private organizations (e.g., the National Cancer Institute and the American Cancer 

Society) should take steps to improve the public’s understanding of cancer prevention and early 

detection with a focus on promoting healthy lifestyles and informed decision making about health 

behaviors and cancer screening. 

• Public and private initiatives to reduce disparities in the cancer burden (e.g., initiatives of the 

National Cancer Institute and the American Cancer Society) should be supported. 

Committee on Cancer Research among Minorities and the Medically Underserved 

Recommendations 

• NIH and other Federal agencies (particularly the Health Care Financing Administration) should 

coordinate to address funding for clinical trials, particularly to address the additional diagnostic 

and therapeutic costs associated with prevention trials and third-party payment barriers 

associated with clinical treatment trials. 

• NCI should continue to assess its dissemination practices to identify effective cancer information 

delivery strategies among ethnic minority and medically underserved populations, revise and 

implement the strategic dissemination plan on the basis of the results of that research, and 

institute an ongoing system of monitoring to assess its effectiveness. 

President’s Cancer Panel Recommendations 

• Provide immediate medical coverage for the uninsured—84 percent of whom are workers and 

their dependents—upon a diagnosis of cancer to help ensure that no person with this disease 

goes untreated. 

• Address health coverage issues that contribute substantially to the financial devastation of people 

underinsured for cancer care costs: 

– Provide reimbursement for anti-cancer agents, supportive medications (e.g., antiemetics and 

pain medications), and proven chemopreventive agents regardless of method of 

administration. 

– Within 2 years, public and private payers should reach consensus on and implement a 

standard health benefit package for cancer care. This benefit package should be based on the 

best available medical evidence and should be updated regularly to reflect advances in the 

standard of care. The reports and deliberations of the Institute of Medicine, other groups, and 

consumers should be used to inform this effort. 

• Address patient and public needs for cancer information and for assistance in accessing services: 

– Provide funding to help communities coordinate, promote, and support community-based 

programs, including patient navigator programs, that help people obtain cancer information, 

screening, treatment, and supportive services. 

– Recognize that the services of non-physician personnel who are trained to conduct cancer 

screening, and provide cancer education and case management in varied settings are an 

important component of cancer care that should be reimbursed. 

• Sustain cancer care in the community by providing consistent and realistic health care provider 

reimbursement across states, and between urban and rural locations within states, for the cost of 

chemotherapy drugs and their administration. 

Appendix C – Alignment of PRG Priority Recommendations with Goals, C-9 

Objectives, and Recommendations of Importance to HHS 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

Literature Cited 

1. Healthy People 2010: Understanding and Press, Washington, DC, 2003. Available at 

Improving Health. 2nd ed. U.S. Department http://www.nap.edu/books/ 0309082544/html. 

of Health and Human Services. 2000. [Last accessed on January 21, 2004.]

Washington, DC: U.S. Government Printing 4. The Unequal Burden of Cancer: An Assess- Office, November 2000. Available at 

http://www.healthypeople.gov/Document. ment of NIH Research and Programs for 

[Last accessed on January 21, 2004.] Ethnic Minorities and the Medically Underserved. Committee on Cancer Research 

2. Unequal Treatment: Con-fronting Racial and among Minorities and the Medically Ethnic Disparities in Healthcare. Committee Underserved, Health Sciences Policy on Understanding and Eliminating Racial and Program, Health Sciences Section, Institute of 

Ethnic Disparities in Health Care, Board on Medicine. National Academy Press, Health Sciences Policy, Institute of Medicine. Washington, DC, 1999. Available at 

The National Academies Press, Washington, http://www.nap.edu/books/0309071542/html. DC, 2003. Available at http://www.nap.edu/ [Last accessed on January 21, 2004.] books/030908265X/html. [Last accessed on 

January 21, 2004.] 5. Voices of a Broken System: Real People, Real 

Problems. President’s Cancer Panel. Report 3. Fulfilling the Potential of Cancer Prevention of the Chairman, 2000-2001. Bethesda, MD. and Early Detection. National Cancer Policy 2003. Available at http://deainfo.nci.nih.gov/ Board, Institute of Medicine and, National ADVISORY/pcp/video-summary.htm. [Last 

Research Council. The National Academies accessed on January 21, 2004.] 

C-10 Appendix C– Alignment of PRG Priority Recommendations with Goals, 

Objectives, and Recommendations of Importance to HHS 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Appendix D 

Glossary of Terms and Acronyms 

AHRQ Agency for Healthcare Research and Quality (Department of Health and Human 

Services) 

AoA Administration on Aging (Department of Health and Human Services) 

Best Practices Strategies, activities, or approaches that are thought, by experts, to be most 

effective for achieving an intended goal. 

Cancer Care The medical and nonmedical services associated with cancer prevention, detection, 

Continuum diagnosis, treatment, and survivorship. 

CBPR Community-Based Participatory Research 

CDC Centers for Disease Control and Prevention (Department of Health and Human 

Services) 

CHP Child Health Plus 

CMS Centers for Medicare and Medicaid Services (Department of Health and Human 

Services) 

Consumers Individuals, including accompanying family members, guardians, or companions, 

seeking physical or mental health care services, or other health-related services.[1] 

CRCHD Center to Reduce Cancer Health Disparities (National Cancer Institute) 

Cultural and A set of congruent behaviors, attitudes, and policies that come together in a 

Linguistic system, agency, or among professionals that enables effective work in crossCompetence cultural situations. “Culture” refers to integrated patterns of human behavior that 

include the language, thoughts, communications, actions, customs, beliefs, values, 

and institutions of racial, ethnic, religious, or social groups. “Competence” 

implies having the capacity to function effectively as an individual and an 

organization within the context of the cultural beliefs, behaviors, and needs 

presented by consumers and their communities.[1] 

Culturally and Respectful of and responsive to cultural and linguistic needs.[1]

Linguistically 

Appropriate 

DCCPS Division of Cancer Control and Population Sciences (National Cancer Institute) 

Ethnicity A concept of shared origins and/or culture in which social, religious, linguistic, 

dietary, and other variables are common among individuals or populations. 

Evidence Tested in peer-reviewed research with findings published in a peer-reviewed 

journal. 

FDA Food and Drug Administration (Department of Health and Human Services) 

FSC Federal Steering Committee 

Health Services A multidisciplinary field of inquiry, both basic and applied, that examines the use, 

Research costs, quality, accessibility, delivery, organization, financing, and outcomes of 

health care services to increase knowledge and understand the structure, processes, 

and effects of health services for individuals and populations.[2] 

HHS Department of Health and Human Services 

Appendix D – Glossary of Terms and Acronyms D-1 
Report of the Trans-HHS Cancer Health Disparities Progress Review Group Making Cancer Health Disparities History 

HRSA Health Resources and Services Administration (Department of Health and Human 

Services) 

Incidence The number of new cases of a disease that occur in a population over a period of 

time. 

Medicaid A program that uses Federal and state funds to pay for medical services for lowincome individuals (Centers for Medicare and Medicaid Services). 

Medically Populations that have inadequate access to, or reduced utilization of, high-quality 

Underserved cancer prevention, screening and early detection, treatment, and/or rehabilitation 

services. Included are rural, low-literacy, and low-income populations. An effort to 

clarify and further define “medically underserved” is currently under way at NIH. 

(National Cancer Institute Center to Reduce Cancer Health Disparities). 

Medicare A Federal insurance program for people age 65 and older and certain disabled 

people (Centers for Medicare and Medicaid Services). 

Minority There are four minority racial groups: American Indian/Alaska Native; Asian; 

Native Hawaiian/Pacific Islander; and Black. Individuals of Hispanic origin are an 

ethnic minority and may be of any race. Caucasians, not of Hispanic origin, are 

generally considered the majority group. The minority group or subpopulation to 

which an individual belongs is determined by self-reporting.[3] 

NBCCEDP National Breast and Cervical Cancer Early Detection Program (Centers for 

Disease Control) 

NCI National Cancer Institute (National Institutes of Health) 

NCMHD National Center on Minority Health and Health Disparities (National Institutes of 

Health) 

NHGRI National Human Genome Research Institute (National Institutes of Health) 

NHLBI National Heart, Lung, and Blood Institute (National Institutes of Health) 

NIH National Institutes of Health (Department of Health and Human Services) 

NINDS National Institute of Neurological Disorders and Stroke (National Institutes of 

Health) 

OMB Office of Management and Budget (Executive Office of the President of the 

United States) 

OMH Office of Minority Health (Department of Health and Human Services) 

OWH Office on Women’s Health (Department of Health and Human Services) 

Peer Review A system for evaluating research applications that uses reviewers who are the 

professional equals of the applicant. 

Population A group of people that live in a given geographic area or share common 

characteristics. 

PRG Progress Review Group 

Promotoras Latina community outreach workers 

Quality of Life The overall enjoyment of life. Many clinical trials assess the effects of cancer and 

its treatment on the quality of life. These studies measure aspects of an 

individual’s sense of well-being and ability to carry out various tasks. 

D-2 Appendix D– Glossary of Terms and Acronyms 
Making Cancer Health Disparities History Report of the Trans-HHS Cancer Health Disparities Progress Review Group 

Race The concept of race as used by the Census Bureau reflects self-identification by 

people according to the race or races with which they most closely identify. These 

categories are sociopolitical constructs and should not be interpreted as being 

scientific or anthropological in nature. Furthermore, the race categories include 

both racial and national-origin groups. 

Randomized A prospective study in which participants are randomly assigned to one or more 

Controlled groups exposed to an experimental intervention and a control group that is not 

Trial exposed to the experimental intervention. 

SAMHSA Substance Abuse and Mental Health Services Administration (Department of 

Health and Human Services) 

SEER Surveillance, Epidemiology, and End Results Program (National Cancer Institute) 

SES Socioeconomic status. A measure of access to social and economic resources, 

most commonly indicated by income, level of education, or type of occupation. 

Special Those ethnic and racial minority groups designated by Office of Management and 

Populations Budget standards as well as elderly, low-income, low-literate, disabled, and rural 

populations. The National Cancer Institute’s working definition of “special 

populations” also includes medically underserved populations, such as rural, lowincome, and low-literate individuals. These groups are generally characterized as 

experiencing higher cancer incidence and/or mortality rates or are relatively 

underserved by cancer programs. 

Subpopulation A group within a larger racial or ethnic group that can be characterized by 

geographic origin, national origin and/or cultural differences. The subpopulation 

to which an individual belongs is determined by self-reporting. 

Translational Research that advances findings from research studies into general clinical 

Research practice. 

Tribal Recognized as eligible for the special programs and services provided by the 

Federal government to Indians because of their status as Indians. 

USPSTF U.S. Preventive Services Task Force (Department of Health and Human Services) 

Literature Cited 

1. National Standards for Culturally and 

Linguistically Appropriate Services in Health 

Care. U.S. Department of Health and Human 

Services. 2001. Office of Minority Health. 

Full Report and Commentary. 

http://www.omhrc.gov/clas/cultural1a.htm. 

[Last accessed on January 21, 2004.] 

2. Fulfilling the Potential of Cancer Prevention 

and Early Detection. National Cancer Policy 

Board, Institute of Medicine and National 

Research Council. The National Academies 

Press, Washington, DC. 2003. Available at 

http://www.nap.edu/books/ 0309082544/html. 

[Last accessed on January 21, 2004.] 

3. Recommendations from the Interagency 

Committee for the Review of the Racial and 

Ethnic Standards to the Office of Management and Budget Concerning Changes to the 

Standards for the Classification of Federal 

Data on Race and Ethnicity. Office of 

Management and Budget. 1997. Federal 

Register 7/9/97, Part II. Pages 36873-36946. 

Available at http://www.whitehouse.gov/omb/ 

fedreg/directive_15.html. [Last accessed on 

January 21, 2004.] 

Appendix D – Glossary of Terms and Acronyms D-3