November 2005

Strengthening Data on Race,

Ethnicity, and Primary Language in

the United States 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 
Strengthening Data on Race, Ethnicity, and Primary Language iii CONTENTS

Contents

CONTENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .iii

NATIONAL COMMITTEE ON VITAL AND 

HEALTH STATISTICS, 2005 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .iv

ACKNOWLEDGMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii

EXECUTIVE SUMMARY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . x

NCVHS ONLINE RESOURCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiii

BACKGROUND . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

RECOMMENDATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

RECOMMENDATION 1. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

RECOMMENDATION 2. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

APPENDICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

APPENDIX A: ONLINE RESOURCES AVAILABLE FROM THE NCVHS . . . . . 39

APPENDIX B: HEARINGS HELD BY THE NCVHS SUBCOMMITTEE ON

POPULATIONS, 2001–2003 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS, 2005

National Committee on Vital and 

Health Statistics, 2005 

SIMON P. COHN, M.D., M.P.H., Chair 

The Permanente Federation, Kaiser Permanente, Oakland, California 

JAMES SCANLON, Executive Staff Director 

Office of the Assistant Secretary for Planning and Evaluation, Department of Health and 

Human Services, Washington, DC 

MARJORIE S. GREENBERG, Executive Secretary 

Office of the Director, National Center for Health Statistics, Centers for Disease Control and 

Prevention, Hyattsville, Maryland 

Members 

JEFFREY S. BLAIR, M.B.A. 

Medical Records Institute, Albuquerque, New Mexico 

JUSTINE M. CARR, M.D.* 

Beth Israel Deaconess Medical Center, Boston, Massachusetts 

RICHARD K. HARDING, M.D. 

University of South Carolina School of Medicine, Columbia, South Carolina 

JOHN P. HOUSTON, J.D. 

University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania 

STANLEY M. HUFF, M.D. 

University of Utah College of Medicine, Intermountain Health Care, Salt Lake City, Utah 

ROBERT W. HUNGATE 

Physician Patient Partnerships for Health, Wellesley, Massachusetts 

A. RUSSELL LOCALIO, J.D, Ph.D.* 

University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania 

CAROL J. MC CALL, F.S.A, M.A.A.A.* 

Humana, Louisville, Kentucky 

iv Eliminating Health Disparities 
HARRY REYNOLDS 

Blue Cross Blue Shield of North Carolina, Durham, North Carolina 

MARK A. ROTHSTEIN, J.D. 

University of Louisville School of Medicine, Louisville, Kentucky 

WILLIAM J. SCANLON, Ph.D.* 

Health Policy Research and Development, Washington, DC 

DONALD M. STEINWACHS, Ph.D.** 

The Johns Hopkins University, Bloomberg School of Public Health, Baltimore, Maryland 

C. EUGENE STEUERLE, Ph.D.* 

The Urban Institute, Washington, DC 

PAUL TANG, M.D. 

Palo Alto Medical Foundation, Palo Alto, California 

KEVIN C. VIGILANTE, M.D., M.P.H.* 

Booz Allen Hamilton, Rockville, Maryland 

JUDITH WARREN, Ph.D., R.N. 

School of Nursing, University of Kansas, Kansas City, Kansas 

Consultant to the Report: 

VICKIE M. MAYS, PH.D., M.S.P.H.*** 

Departments of Psychology and Health Services, University of California at Los Angeles, 

Los Angeles, California 

Report Editor: 

ANNE RODGERS 

Falls Church, Virginia 

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS, 2005

*Members of the Subcommittee on Populations.

**Chair, Subcommittee on Populations.

***Previous Member and Chair of the Subcommittee on Populations.

Strengthening Data on Race, Ethnicity, and Primary Language v 
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS, 2005

Staff to the Subcommittee on Populations, 2005 

AUDREY L. BURWELL, M.S.* 

Office of Minority Health, Department of Health and Human Services, Washington, DC 

DALE C. HITCHCOCK* 

Office of Science and Data Policy, Office of the Assistant Secretary for Planning and Evaluation, 

Department of Health and Human Services, Washington, DC 

LOU BELMONTE 

Office of Indian Affairs, Office of the Secretary of Public Health Science, Department of Health and 

Human Services, Philadelphia, Pennsylvania 

NANCY BREEN, Ph.D. 

National Cancer Institute, National Institutes of Health, Bethesda, Maryland 

VIRGINIA S. CAIN, Ph.D. 

Office of Behavioral and Social Sciences Research, National Institutes of Health, Bethesda, Maryland 

LESLIE COOPER, Ph.D., M.P.H., B.S.N., R.N. 

Center to Reduce Cancer Health Disparities, National Cancer Institute, National Institutes of Health, 

Bethesda, Maryland 

BRENDA EVELYN 

Office of Special Health Issues, Food and Drug Administration, Rockville, Maryland 

MIRYAM GRANTHON, M.P.H. 

Office of the Director, Office of Minority Health, Department of Health and Human Services, 

Washington, DC 

NILSA GUTIERREZ, M.D., M.P.H. 

Office of the Medical Director, Centers for Medicare & Medicaid Services, Region II, New York, 

New York 

vi Eliminating Health Disparities 
SUZANNE HAYES, Ph.D. 

Office of Women’s Health, Office of the Associate Director, Department of Health and Human 

Services, Washington, DC 

SUZANNE HEURTIN-ROBERTS, Ph.D., M.S. 

Center on Health Disparities, Office of the Director, National Cancer Institute, National Institutes of 

Health, Bethesda, Maryland 

CILLE KENNEDY, Ph.D. 

Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human 

Services, Washington, DC 

JACQUELINE LUCAS, M.P.H. 

Division of Health Interview Statistics, National Center for Health Statistics, Centers for Disease 

Control and Prevention, Hyattsville, Maryland 

EDNA L. PAISANO 

Office of Public Health, Indian Health Service, Rockville, Maryland 

SUSAN G. QUEEN, Ph.D. 

Office of Planning, Evaluation and Legislation, Health Resources and Services Administration, 

Rockville, Maryland 

HARVEY SCHWARTZ, Ph.D. 

Office of Extramural Research, Education and Priority Populations, Agency for Healthcare Research 

and Quality, Rockville, Maryland 

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS, 2005

* Lead Staff 

Strengthening Data on Race, Ethnicity, and Primary Language vii 
ACKNOWLEDGMENTS

Acknowledgments 

We would like to acknowledge the contributions of several individuals, some of whom 

were previous committee members of the NCVHS Subcommittee on Populations. 

Barbara Starfield, M.D., M.P.H.; Daniel J. Friedman, Ph.D.; Paul Newacheck, Ph.D.; 

Kathryn Coltin; Eugene Lengerich, V.M.D., MS; and Peggy Handrich were all previous 

members of the subcommittee and participated in hearings, or subcommittee breakouts 

dedicated to the content of this report. Vickie Mays, Ph.D., MSPH, former Chair of the 

subcommittee, was instrumental in writing the report and leading the series of hearings 

held on the topic. 

A number of staff and consultants provided excellent guidance and contributions. In 

particular, Dale Hitchcock and Susan Queen, Ph.D., served as lead staff for the February 2002 hearing on Federal population-based health surveys, which serves as the core 

material for this report. As current lead staff, Audrey Burwell and Dale Hitchcock were 

instrumental in setting up other hearings, with support from Gracie White. 

Several staff assisted throughout the process of the hearings and the development of the 

report. Jennifer Madans, Ph.D., and Jacqueline Lucas, M.P.H., National Center for Health 

Statistics (NCHS); Nancy Breen, Ph.D., National Cancer Institute (NCI), provided 

invaluable background, technical assistance, and reviews of the report; and Miryam 

Granthon Office of Minority Health(OMH) provided administrative support and 

technical assistance. Thanks also to Debbie Jackson (NCHS) for her administrative 

assistance in shepherding the report through to completion. 

Thanks to Virginia S. Cain, Ph.D., Office of Behavioral and Social Sciences Reserach 

(OBSSR) and Suzanne Heurtin-Roberts, Ph.D. (NCI) for presentations that served as 

technical assistance for the writing of the report. We also are grateful to Leslie 

Cooper, Ph.D. (NCI); Brenda Evelyn, Food and Drug Administration (FDA); Nilsa 

Gutierrez, M.D., M.P.H., Centers for Medicare & Medicaid Serivces (CMS); 

Marjorie Greenberg, (NCHS); Suzanne Haynes, Ph.D. (OWH); Edna Paisano, Indian 

Health Service (IHS) (a special thanks for her assistance with the American Indian hearing in Denver); Harvey Schwartz, Ph.D., and Stanley Edinger, Ph.D., Agency for Healthcare Research and Quality (AHRQ); and James Scanlon, Office of the Assistant Secretary 

viii Eliminating Health Disparities 
for Planning and Evaluation (OASPE) for their participation in the subcommittee activities that serve as the foundation for the report. We also thank John Lumpkin, M.D., 

M.P.H., past Committee chair, for his assistance and leadership. The report benefited 

from early contributions from Olivia Pokras-Carter, Ph.D., University of Maryland, 

Sheree Crute (New York), and Susan Kanaan (California), and from Anne Rodgers, who 

served as the consulting editor for the report. 

Of course, we thank all who gave generously of their time to present at the hearings, 

recommend presenters, and attend the sessions. Our hearings would not have been 

as successful without the help of several Federal, State, and community agencies and 

individuals who helped in identifying key experts: The Asian Pacific Islander American 

Health Forum, Association of Asian Pacific Community Health Organizations, Samoan 

Nurses, California Pan Ethnic Health Network, PACE Kamehameha School, Alvin 

Onaka, Ph.D., of the Association of State and Territorial Health Officials (ASTHO), 

and HHS regional representatives Christina Perez, M.P.H. (Region IX), Mildred Hunter, 

MSW, M.P.H. (Region V), and Dorothy Kelly (Region III—a special thanks for her help 

with the Philadelphia hearing). We also thank Paul Ong, Ph.D., the Ralph and Goldy 

Lewis Center, University of California at Los Angeles (UCLA), and Marjorie 

Kagawa-Singer, Ph.D., UCLA School of Public Health. 

ACKNOWLEDGMENTS

Strengthening Data on Race, Ethnicity, and Primary Language ix 
Executive Summary

EXECUTIVE SUMMARY

Compelling evidence exists that differences in health status, access to care, and the 

provision of physical and mental health services are significantly related to race, ethnicity, primary language, geography, and various measures of socioeconomic position, such 

as educational status, income, wealth, and conditions in childhood. Efforts to improve 

health care and eliminate health disparities in the United States are an important element of the Secretary of Health and Human Services 500 Day Plan: Longer, Healthier, 

and Better Lives (www.os.dhhs.gov/500DayPlan/500DayPlan.pdf). These efforts can succeed only when researchers, policy-makers, health care professionals, and community 

groups are equipped with complete and accurate data on the differences in health status, 

access to care, and the provision of services experienced by specific population groups 

in the United States. This essential prerequisite for progress has been the focus of hearings and a lengthy review of available information conducted by the National Committee 

on Vital and Health Statistics (NCVHS) Subcommittee on Populations. The NCVHS is 

the statutory public advisory body that advises the U.S. Department of Health and Human Services (HHS) on information needs underlying national health policy. 

The Committee offers this summary of its findings and recommendations so that the 

strategies outlined can provide an effective and useful roadmap for future action by HHS 

and its partnering agencies and organizations within and outside of the Federal government. The recommendations serve as a starting point for productive consultation and 

discussion in which all stakeholders are engaged in determining the next best steps 

forward. In summary, these recommendations address four major components of the 

collection of data on race, ethnicity, and primary language in racial and ethnic minority 

populations: how to obtain, collect, and store health data in ways that are usable, properly interpreted, and adequately protected. 

The Committee presents its findings under two major recommendations. Each recommendation contains several component parts, which have one or more specific strategies for action. At the same time, the Committee recognizes that considerable overlap 

exists between the two recommendations. Efforts to carry out the strategies proposed 

in one recommendation will almost certainly help to achieve the goals of the other recommendation. These recommendations and their components are: 

x Eliminating Health Disparities 
HHS is urged to enhance the quality, reliability, and completeness of its data 

collection and data integration on racial, ethnic, and linguistic subpopulations in the United States and U.S. territories. This recommendation focuses on 

ways that HHS can improve its overall data collection effort through exhibiting national 

leadership, enhancing efforts to coordinate with other agencies and organizations, and 

fostering partnerships among stakeholders. The multiplicity of factors that contribute 

to health disparities requires enhanced availability of data on diverse subpopulations and 

collection of data on a broad array of variables beyond race and ethnicity. The recommendation indicates the importance of collecting data down to the lowest possible level 

of geography and on socioeconomic position. Critically important is improving and 

broadening technical assistance to the states in their data collection and dissemination 

efforts. This collaboration and guidance is key to Federal efforts to understand and 

ameliorate disparities when health datasets used by the Federal government are collected through states. Finally, HHS is urged to use its own health programs, such as 

Medicare and Federal employee health plans, to improve data collection on race, ethnicity, and language. 

HHS is urged to increase and strengthen the capacity of its health statistics 

infrastructure to analyze, report, and disseminate data on the various ethnic, 

racial, and linguistic subpopulations in the United States and U.S. territories. This recommendation focuses on practical issues that are essential to improving 

data collection efforts. Among these are supporting methodological research (such as 

best practices for handling the definitions of race and ethnicity as they are understood 

by various subpopulations) and providing technical assistance. One essential recommendation to improve the health statistics infrastructure is to facilitate access to data by 

increasing the number of, and resources within, secure data centers, including enhancing data users’ opportunities for training. Another infrastructure issue is the need for 

technical assistance to help agencies “bridge” data collected before and after the Office 

of Management and Budget’s (OMB) 1997 revised standards for the classification of 

race and ethnicity in Federal data systems. Finally, further development of policies and 

procedures is needed to ensure wider, but secure, access to micro-data (i.e., nonaggregated data containing variables that make respondents potentially identifiable) for use in 

EXECUTIVE SUMMARY

Strengthening Data on Race, Ethnicity, and Primary Language xi 
EXECUTIVE SUMMARY

IRB-approved research. Policies and procedures also are needed to expand access to 

public-use data to increase dissemination of data and facilitate much-needed research 

about race, ethnicity, language, and other characteristics of specific subpopulations. 

xii Eliminating Health Disparities 
NCVHS ONLINE RESOURCES 

Summary of Strategies in Recommendation 1 

Enhance Quality, Reliability, and Completeness of Data Collection and 

Integration 

A. Advance HHS Leadership, Coordination, and Partnerships 

1. Hold conferences that focus on identifying best practices for data collection 

2. Fund mechanisms to support research and training for collecting, classifying, 

analyzing, and disseminating data on racial and ethnic subpopulations 

3. Develop goals for the HHS Data Council Integration Group to increase linkages 

among surveys 

4. Develop mechanisms for working with Federal and other agencies to transfer 

best practices for collecting, classifying, and linking race, ethnicity, and primary 

language data 

5. Conduct a study to determine how well racial and ethnic subpopulations are 

represented in HHS surveys and what benefits can be derived from additional 

survey integration 

6. Examine race and ethnicity coding categories and instructions to enhance quality of 

data received from states 

7. Collaborate with U.S. Census Bureau to conduct methodological work on post/ 

intercensal estimates for racial, ethnic, and linguistic subpopulations 

8. Continue providing technical assistance to state surveys, such as the New York 

Health and Nutrition Examination Survey and the California Health Interview Survey 

NCVHS ONLINE RESOURCES

Strengthening Data on Race, Ethnicity, and Primary Language xiii 
NCVHS ONLINE RESOURCES

B. Increase Availability of Data on Diverse Subpopulations 

1. Develop plan for conducting targeted surveys on specific racial and ethnic 

subpopulations at least once every 10 years 

2. Provide technical assistance on methods of aggregating small sample data across 

surveys and administrative data 

3. Fund research in survey methodology on how to reach and recruit difficult-to-access 

subpopulations, such as immigrants and the homeless 

4. Explore ways to increase self-reporting of race, ethnicity, and language designations 

by subpopulations 

5. Design and carry out an education campaign to improve participation in surveys by 

racial, ethnic, and linguistic subpopulations 

6. Explore feasibility and utility of expanding survey translation to languages other 

than Spanish 

7. Fund research on best practices for multiple race allocation, bridging, and 

classification definitions 

C. Improve the Collection of Data on Geography and Socioeconomic Position (SEP) 

1 Improve methods for capturing and using geocoding data 

2. Convene a group to assess what SEP measures are available in Federal data, what 

linkages are possible, and disseminate this information through the HHS Gateway 

3. Evaluate how best to collect socioeconomic information in electronic health records 

and encourage best practices in public and private health record systems 

xiv Eliminating Health Disparities 
D. Enhance Data Collection in Federal Programs 

1. Ensure that Medicaid captures race and ethnicity information that can be linked to 

administrative data 

Summary of Strategies in Recommendation 2 

Increase Capacity of Health Statistics Infrastructure to Collect, Integrate, 

Analyze, Report, and Disseminate Data 

A. Expand Access to Data on Subpopulations 

1. Work with the Census Bureau to place or share additional secure data centers in 

academic and community settings 

2. Consider options for and research on protecting identifiable data 

B. Improve Data User Training 

1. Support initiatives to enhance capacity of researchers to use race, ethnicity, and 

primary language data 

2. Expand grant programs to train researchers with an interest in health disparities and 

health statistics 

3. Support efforts to develop programs to train American Indians/Alaska Natives 

(AI/AN) to work with AI/AN data 

C. Link Data Systems and Dissemination Methods to Bridge Old and New Data 

1. Provide technical assistance by developing analytic guidelines on bridging data and 

disseminate widely 

NCVHS ONLINE RESOURCES

Strengthening Data on Race, Ethnicity, and Primary Language xv 
NCVHS ONLINE RESOURCES

D. Improve Data Quality 

1. Examine how to give states flexibility in collecting and reporting subgroup 

classification so that they can work within Federal data reporting requirements 

2. Conduct methodological research in issues related to reporting of race and ethnicity 

3. Identify ways to simultaneously analyze multiple socioeconomic measures 

E. Increase Dissemination of Health Statistics and Research Findings 

1. Continue and further develop aggressive public-use data release programs for racial 

and ethnic subgroup data 

2. Identify ways to improve the accessibility of data on racial, ethnic, and linguistic 

subpopulations (e.g., Internet, data query systems, CD-ROMs) 

NCVHS Letters and Reports Recommending Strategies for 

Increasing the Quantity and Quality of Data on Racial, Ethnic, 

and Linguistic Subpopulations in the United States and U.S. 

Territories 

1. August 23, 2004, Letter to the Secretary on Recommendations on Populations 

Based Data Collection. www.ncvhs.hhs.gov/040823lt.htm 

2. September 26, 2003, Letter to the Secretary on Recommendations for Targeted 

Data Collection. www.ncvhs.hhs.gov/030926lt.htm 

3. September 26, 2003, Letter to the Secretary on Collection of Racial and Ethnic Data 

by Health Plans. www.ncvhs.hhs.gov/030926ltb.htm 

4. March 27, 2003, Letter to the Secretary on Populations-based Data for Racial and 

Ethnic Minorities. www.ncvhs.hhs.gov/030327lt.htm 

xvi Eliminating Health Disparities 
5. October 19, 2001, Letter to CMS on Racial and Ethnic Data Collection. 

www.ncvhs.hhs.gov/011019lt.htm 

6. July 6, 2001, Recommendations to Health Care Financing Administration on SCHIP 

Data Collection. www.ncvhs.hhs.gov/011019lt.htm 

7. March 14, 2001, Letter to Katherine Wallman, Chief Statistician, Office of 

Management and Budget regarding Provisional Guidance on the Implementation of 

the 1997 Standards for Federal Data on Race and Ethnicity (December 15, 2000). 

www.ncvhs.hhs.gov/010314lt.htm 

8. December 1999 Report on Medicaid Managed Care Data Collection and Reporting. 

www.ncvhs.hhs.gov/managedcare.pdf 

9. December 1999 Report on Health Data Needs of the Pacific Insular Areas, Puerto 

Rico, and the U.S. Virgin Islands. www.ncvhs.hhs.gov/9912islandreport.pdf 

NCVHS ONLINE RESOURCES

Strengthening Data on Race, Ethnicity, and Primary Language xvii 
NCVHS ONLINE RESOURCES

Other Resources Available on the NCVHS Web site 

Agendas, Transcripts, and Summaries of Meetings and Hearings Held by the 

Subcommittee on Populations 

June 27, 2001 

Subcommittee on Populations Breakout Session During Full Committee Meeting, Mr. 

Roderick Harrison, Joint Center for Political and Economic Studies. Discussion of 

Implementation of the Collection of Data on Race and Ethnicity, Washington, DC. 

www.ncvhs.hhs.gov/010627a3.htm 

August 15, 2001 

Meeting on Future Directions for Work in the Implementation of OMB Standards for 

the Collection of Data on Race and Ethnicity, Rosemont, IL. 

www.ncvhs.dhhs.gov/010815ag.htm 

February 11–12, 2002 

Hearing on Measurement of Health Disparities in Racial and Ethnic Groups in Federal 

Surveys, Washington, DC. www.ncvhs.hhs.gov/020211ag.htm 

February 26–27, 2002 

Subcommittee on Populations Breakout Session During Full Committee Meeting, Review of February 11–12, Hearing on Measurements of Health Disparities in Racial/Ethnic 

Groups, Washington, DC. www.ncvhs.hhs.gov/020226a2.htm 

February 26, 2002 

Subcommittee on Populations Workgroup on Quality-Breakout Session, Washington, 

DC. www.ncvhs.hhs.gov/020226a3.htm 

September 27, 2002 

Hearing on Health Data Needs for American Indians, Denver, CO. 

www.ncvhs.hhs.gov/020927ag.htm 

November 8, 2002 

Hearing on Health Data Needs for States, Vital Statistics, and Geocoding in Eliminating 

xviii Eliminating Health Disparities 
Health Disparities in Racial and Ethnic Subpopulations Philadelphia, PA. 

www.ncvhs.hhs.gov/021108ag.htm 

May 22–23, 2003 

Hearing on Health Data Needs for Asian, Native Hawaiian and Other Pacific Islander 

Populations, Los Angeles, CA . www.ncvhs.hhs.gov/030522ag.htm 

July 24, 2003 

Planning meeting and discussion of Small Area/Geographic Area Studies, Washington, 

DC. www.ncvhs.hhs.gov/030724ag.htm 

November 13–14, 2003 

Hearing on Health Data Needs for Asian, Native Hawaiian and Other Pacific Islander 

Populations, San Francisco, CA. www.ncvhs.hhs.gov/031113ag.htm 

NCVHS ONLINE RESOURCES

NOTE: These links take users to the Web pages for the hearings or meetings. You will find additional 

links to summaries and individual testimonies by clicking on “Transcripts and Minutes” (http://www.ncvhs. 

hhs.gov/lastmntr.htm.) 

Testimony at Hearing on Measurement of Health Disparities in Racial and 

Ethnic Groups in Federal Surveys, Washington DC, February 11–12, 2002 

z Medical Expenditure Panel Survey: 

• Steve Machlin, AHRQ. www.ncvhs.hhs.gov/020211tr.htm#machlin 

• Marsha Lillie-Blanton, Ph.D., User, Kaiser Family Foundation. 

www.ncvhs.hhs.gov/020211tr.htm#lillie-blanon 

z Consumer Assessment of Health Plans User, Judy Sangl, Sc.D., AHRQ. 

www.ncvhs.hhs.gov/020211tr.htm#sangl 

z Consumer Assessment of Health Plans User, James Moser, Ph.D., Brens Group of 

KPMG Consulting. www.ncvhs.hhs.gov/020211tr.htm#moser 

z Medicare Current Beneficiary Survey User, Dan Waldo, M.A., Centers for Medicare 

& Medicaid Services. www.ncvhs.hhs.gov/020211tr.htm#medicare 

Strengthening Data on Race, Ethnicity, and Primary Language xix 
NCVHS ONLINE RESOURCES

z Medicare Current Beneficiary Survey User, Joan DaVanzo, MSW, Ph.D., Lewin 

Group. www.ncvhs.hhs.gov/020211tr.htm#medicarebeneficiary 

z Policy Perspectives, Carolyn Clancy, M.D., AHRQ. 

www.ncvhs.hhs.gov/020211tr.htm#policyperspectives 

z Socioeconomic Status, Patricia O’Campo, Ph.D., Johns Hopkins University. 

www.ncvhs.hhs.gov/020211tr.htm#socioeconomic 

z National Survey of Family Growth, Joyce Abma, Ph.D., NCHS. 

www.ncvhs.hhs.gov/020211tr.htm#growth 

z Behavioral Risk Factor Surveillance, Peter Mariolis, Ph.D., CDC. 

www.ncvhs.hhs.gov/020211tr.htm#behavioral 

Testimony at Hearing on Health Data Needs for States, Vital Statistics, and 

Geocoding in Eliminating Health Disparities in Racial and Ethnic Subpopulations, Philadelphia, PA, November 8, 2002 

z Massachusetts Department of Health, Bruce Cohen, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#massachusetts 

z California Department of Health, Peter Abbott, M.D. 

www.ncvhs.hhs.gov/021108tr.htm#california 

z Hawaii Department of Health, Alvin Onaka, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#hawaii 

z California Department of Health, Jane McKendry, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#california2 

z Vital Statistics Re-engineering Project, Delton Atkinson, M.S.P.H., M.S.P. 

www.ncvhs.hhs.gov/021108tr.htm#reengineering 

z Healthy Women: State Trends in Health and Mortality, Kate Brett, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#healthywomen 

z National Women’s and Minority Indicators Database Project, Alfred Meltzer. 

www.ncvhs.hhs.gov/021108tr.htm#database 

xx Eliminating Health Disparities 
z Geocoding State Data and Establishing Collaborations, Nancy Krieger, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#geocoding 

z Alabama Department of Public Health, Dorothy Harshberger. 

www.ncvhs.hhs.gov/021108tr.htm#alabama 

z Tennessee Department of Health, Richard Urbano, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#tennessee 

z Commentary, Daniel Friedman, Ph.D. www.ncvhs.hhs.gov/021108tr.htm#commentary 

Testimony at the Hearing on Health Data Needs for Asian, Native Hawaiian, 

and Other Pacific Islander Populations, Los Angeles, CA , May 22–23, 2003 

z Hawaiian Matters: Data Considerations for Native Hawaiian and Pacific Islander 

Populations, Nolan Malone, Ph.D., PACE Kamehameha School. 

www.ncvhs.hhs.gov/030522p1.pdf 

z Comments on AAPI Data to Subcommittee on Populations, Paul Ong Ph.D., 

Ralph and Goldy Lewis Center for Regional Policy Studies, UCLA. 

www.ncvhs.hhs.gov/030522p2.pdf 

z Use of Census Data in Health Planning and Community Development in Support of 

Community Services, Bong Vergara M.A., M.S.W., and Malany Dela Cruz, Census 

Information Center. www.ncvhs.hhs.gov/030522p3.pdf 

z Ethnicity, Culture, and Pharmacogenetics. Keh-Ming Lin M.D., Harbor-UCLA Medical 

Center. www.ncvhs.hhs.gov/030522p4.pdf 

z Small AA/NHOPI Populations, Marjorie Kagawa-Singer Ph.D., R.N., UCLA School of 

Public Health and Asian American Studies Center. www.ncvhs.hhs.gov/030523p1.pdf 

Testimony at the Hearing on Health Data Needs for Asian, Native Hawaiian, 

and Other Pacific Islander Populations, San Francisco, CA, 

November 13–14, 2003

z Overview of Pacific Island Health Data Issues, Christina Perez M.P.H., Regional 

Minority Health Coordinator, Region X. www.ncvhs.hhs.gov/031113tr.htm#perez 

NCVHS ONLINE RESOURCES

Strengthening Data on Race, Ethnicity, and Primary Language xxi 
NCVHS ONLINE RESOURCES

z Health Data Needs for the Elimination of Health Disparities for Asian, Native 

Hawaiian, and Other Pacific Islander Populations. Ho Tran, M.D., Asian and Pacific 

Islander American Health Forum. 

www.ncvhs.hhs.gov/031113p1a.pdf and www.ncvhs.hhs.gov/031113tr.htm#tran 

• Policy Brief: Data Gaps and Health Disparities for Asians and Pacific Islanders 

Highlighted in the Healthy People 2010 Initiative. Ho Tran, M.D., Asian and 

Pacific Islander American Health Forum. www.ncvhs.hhs.gov/031113p1b.pdf 

z Accessing Census Data on Asians, Native Hawaiians, and Other Pacific Islander 

Populations: The Role of Census Information Centers. Gem Daus M.P.H., Asian and 

Pacific Islander American Health Forum. 

www.ncvhs.hhs.gov/031113p2a.pdf and www.ncvhs.hhs.gov/031113tr.htm#daus 

• Census Data: Top 10 States, Population by Asian (Alone) Ethnicity. 

www.ncvhs.hhs.gov/031113p2b.pdf 

z ANHOPI Measurement and Classification Issues, Elena Yu, PH.D., Johns Hopkins 

University. www.ncvhs.hhs.gov/031113tr.htm#yu 

z Healthcare Quality Indicators for ANHOPI Populations, Ellen Wu, M.P.H., 

California Pan Ethnic Health Network. www.ncvhs.hhs.gov/031114tr.htm#wu 

z Asian Americans and Cancer, Scarlett Lin Gomez, Ph.D., Northern California 

Cancer Center. www.ncvhs.hhs.gov/031114tr.htm#gomez 

z Data Challenges in the Western Pacific, Greg Dever, M.D., Palau Ministry of Health. 

www.ncvhs.hhs.gov/031114p1.pdf and www.ncvhs.hhs.gov/031114tr.htm#devor 

z Data Challenges in Hawaii, Catherine Sorenson, Ph.D., Hawaii Department of 

Health. www.ncvhs.hhs.gov/031114tr.htm#sorenson 

z Health Disparities Data Issues: Listening to the Voices. Carol Murray, Ph.D., 

University of Hawaii at Manoa. 

www.ncvhs.hhs.gov/031114p2.pdf and www.ncvhs.hhs.gov/031114tr.htm#murry 

xxii Eliminating Health Disparities 
Background

Compelling evidence exists that differences in health status, access to care, and the 

provision of physical and mental health services are significantly related to race, ethnicity, primary language, geography, and various measures of socioeconomic position, 

such as educational status, wealth, and conditions beginning in childhood (1–6). Disparities across subpopulations are reflected as deficiencies in the health of the population 

as a whole. This report from the National Committee on Vital and Health Statistics 

(NCVHS) comes at a time of increasing attention to these health disparities and their 

costs for the Nation (7–12). Although there has been debate and at times a lack of 

consensus on how to define health disparities (13–16), we have chosen in forwarding recommendations to the U.S. Department of Health and Human Services (HHS) to 

adopt as a minimum the National Institutes of Health (NIH) Health Disparities working 

group definition. This definition states that health disparities are “the difference in the 

incidence, prevalence, morbidity, mortality, and burden of diseases and other adverse 

health conditions that exist among specific population groups (17).” 

Federal efforts to eliminate health disparities and improve the health of all Americans 

depend on the ability to target those at high risk and with great need. This requires 

detailed information on the diverse array of subpopulation groups within the United 

States. Subgroups may be characterized by country of origin, tribe, location in the 

United States, dialect, or socioeconomic position. In its collection of racial, ethnic, and 

tribal classification, the U.S. Bureau of the Census lists 132 race groups, 78 American 

Indian and Alaska Native tribes, and 39 Hispanic (18) groups for a total of 249 subpopulation groups (www.census.gov/prod/cen2000/doc/sf2.pdf).* An example of the importance 

of subpopulation diversity is illustrated by work using the NCHS Hispanic Health and 

Nutrition Examination Survey (HHANES). Investigators using these data have produced 

a number of revealing studies highlighting differences in health disparities and health risks 

BACKGROUND

*

 The minimum categories for data on race and ethnicity for Federal statistics, program administrative reporting, and civil rights compliance reporting are defined in the Office of Management and Budget (OMB) 

Revised Standards for the Classification of Federal Data on Race and Ethnicity. The categories are: American 

Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, Native Hawaiian and Other 

Pacific Islander, and White. For simplicity, this report uses the term Black to refer to Black or African 

American and the term Hispanic to refer to Hispanic or Latino. 

Strengthening Data on Race, Ethnicity, and Primary Language 1 
BACKGROUND

among participating Mexican Americans, Cubans, and Puerto Ricans (19–21). Despite 

their commonality as Hispanics, the subpopulations in the studies did not share the same 

health outcomes or even the same risks of chronic diseases. Although some broad 

similarities exist among Hispanic subgroups as a whole, such as language (Spanish) and 

religion (Christian), significant differences in cultural background and life experiences 

are nonetheless known to be critical factors in health status and health outcomes. We 

know that the U.S. Hispanic population is a heterogeneous mixture of subgroups in 

terms of cultures, ethnicities, and origins. Hispanic diversity covers a broad racial spectrum: Hispanics can be White, Black, Native Hawaiian or Pacific Islander, Asian, or Native American or Alaska Native. This diversity can even extend to nationality, customs, 

heritage, lifestyle, and socioeconomic status. 

Similar concerns exist for all of the other major population groups. American Indians 

and Alaska Natives encompass a vast number of tribes and residence in urban as well as 

rural areas. Native Hawaiians and Other Pacific Islanders (which consist of individuals of 

Polynesian, Micronesian, and Melanesian ancestry) include more than 25 diverse groups 

with various historical backgrounds, languages, and cultural traditions (22,23). In many 

data collection efforts, they are grouped with Asians (e.g., Chinese, Japanese, Korean, 

Taiwanese, Mongolian, Indonesian), a very different population group whose ancestry, 

cultures, traditions, and languages are themselves highly diverse. 

The diversity within major population groups and the growing body of research indicating differences in the health risks and health status within groups strongly indicate that 

effective strategies for eliminating health disparities rely on classification designations 

that break populations into their smaller subgroups. Throughout this report, the Committee calls for efforts to determine the subpopulation levels at which data for all of the 

racial ethnic groups (Black, Hispanic, American Indian or Alaska Native, Asian, and Native Hawaiian or Other Pacific Islanders) are important in addressing health disparities. 

The Committee calls for their acquisition and use. 

Recently, several landmark reports from the public and private sectors, which have 

focused the Nation’s attention on health disparities, have highlighted the need for better 

2 Eliminating Health Disparities 
data on racial, ethnic, and linguistic subpopulations (24–29). Two reports—Eliminating 

Health Disparities: Measurement and Data Needs (National Research Council) and Unequal 

Treatment: Confronting Racial and Ethnic Disparities in Healthcare (Institute of Medicine)— 

have helped to create a new sense of urgency about the need for guidance, coordination, monitoring, funding, research, and partnerships to achieve the goal of healthier 

Americans. The Robert Wood Johnson Foundation’s report, Tracking Health Plan Enrollees’ Race and Ethnicity, describes the pivotal role of private health insurance plans in assessing the quality of health care received by different racial and ethnic groups (30). The 

Agency for Healthcare Research and Quality’s (AHRQ) National Healthcare Disparities 

Report (31) clearly demonstrates the persistence of inequalities in health status, health 

care, and health information across populations in the United States. Eliminating health 

disparities among population groups is at the heart of Healthy People 2010, the Nation’s 

premier statement of national health objectives (32). 

To help meet the NCVHS’ responsibilities as the statutory public advisory body on the 

information needs underlying health policy, the NCVHS Subcommittee on Populations 

focuses on data concerns for both the entire U.S. population and for its vulnerable 

subgroups. Over the past 3 years, the Subcommittee convened hearings to investigate 

issues surrounding the paucity of data on racial, ethnic, and linguistic subpopulations and, 

more broadly, the collection and classification of data on race and ethnicity (Appendix 

B provides agendas and other information about these hearings; transcripts and minutes 

are available at www.ncvhs.hhs.gov). In its initial hearing (February 2002), the Subcommittee was particularly interested in learning about variables other than race and ethnicity 

that are available in HHS data systems to measure health disparities, what additional 

variables are needed, and how data systems across HHS and across other Federal 

agencies can be effectively linked to provide useful information about specific subpopulations and health disparities. Presenters included representatives from HHS’s population-based surveys, provider-based surveys, and administrative data systems. Other 

presenters and audience members included data users from foundations, universities, 

and organizations, and representatives from community-based organizations and other 

groups interested in the issues of health disparities and data collection. 

BACKGROUND

Strengthening Data on Race, Ethnicity, and Primary Language 3 
BACKGROUND

The Subcommittee used the information gained from its hearings and the findings of 

relevant recent reports to prepare this report, Eliminating Health Disparities: Strengthening Data on Race, Ethnicity, and Primary Language in the United States. Two major recommendations and a series of specific strategies are presented (a) enhance the quality, 

reliability, and completeness of HHS’s data collection and reporting on racial, ethnic, and 

linguistic populations and subpopulations, and (b) identify ways that HHS can increase 

and strengthen the capacity of its health statistics infrastructure for collecting, reporting, 

and disseminating data on racial, ethnic, and linguistic populations and subpopulations. 

Each recommendation begins with a brief overview followed by specific strategies. Although the Committee has articulated two separate recommendations and presented 

specific strategies for each, it recognizes that considerable overlap exists between the 

two recommendations. Efforts to carry out the strategies proposed in one recommendation will almost certainly help to achieve the goals of the other recommendation. The 

report notes those instances in which action on a particular strategy will help to achieve 

both recommendations. 

In the face of the clear costs to the Nation of health disparities, the Committee views 

its recommendations as a plan for enhancing the data collection process. Better data will 

move the United States closer to recognizing, monitoring, and eliminating health disparities, thereby ensuring quality health care and improved health status for all Americans. 

4 Eliminating Health Disparities 
RECOMMENDATIONS 

RECOMMENDATION 1 

HHS is urged to enhance the quality, reliability, and completeness 

of its data collection and integration on racial, ethnic, and linguistic 

subpopulations in the United States and U.S. territories. 

The U.S. Department of Health and Human Services has outlined as a priority for its 

agencies the reduction of health disparities in the United States, particularly among 

racial, ethnic, and linguistic subpopulations (33–35). This bold step was taken because 

of the increasing identification of disparities in health status, health outcomes, access to 

care, and health care treatments. In its 2004 report, Eliminating Health Disparities: Measurement and Data Needs, the National Research Council underscored the importance 

of collecting data on race, ethnicity, socioeconomic position, acculturation, and language 

use as a way to understand and eliminate health and health care disparities in the United 

States (36). National population-based surveys are essential sources of estimates on 

the health of the U.S. population. However, some of the groups at risk for ill health and 

poor health care are those about whom we have the most limited health statistics and 

contextual data. Although both the Office of Management and Budget (OMB) and HHS 

strongly encourage the collection of data on racial and ethnic subgroups, few Federal 

data systems report data at the level of subgroups, particularly subgroups within Blacks, 

Asians, Hawaiians or Other Pacific Islanders, and American Indians or Alaska Natives. 

The Office of the Assistant Secretary for Planning and Evaluation (ASPE), HHS, has developed a report assessing the analyses of Hispanic and Asian or Other Pacific Islanders 

and Native Americans subgroups that can best be conducted using the major Federal datasets (http://aspe.hhs.gov/hsp/minority-db00/task3/index.htm) (37). A number of subgroups 

are not covered in this report and even for those that are included, the report cautions 

about the extent to which the surveys provide sufficient precision for sophisticated 

subgroup analyses. 

Research has long demonstrated that for some racial and ethnic populations (e.g., Blacks 

and Hispanics), important socioeconomic and health differences within the populations 

RECOMMENDATION 1

Strengthening Data on Race, Ethnicity, and Primary Language 5 
RECOMMENDATION 1

are missed by not collecting or using subgroup data (e.g., differences in birth outcomes 

based on whether Blacks are foreign-born or American-born) (38–40). Just as compelling is evidence of the importance of differences within these populations by immigrant 

status and place of residence (41–43). For example, Cuban Americans living in Dade 

County, Florida, are a subgroup distinct from Puerto Ricans living in Manhattan, though 

both groups would classify as Hispanics. 

Leadership at the level of the Secretary’s office is necessary to foster a broad discussion of enhanced standards for collecting data on race, ethnicity, and primary language 

in survey and administrative data formats, with a goal to develop linkages across data 

sources. A coordinated action plan and partnerships within HHS agencies, such as the 

Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid 

Services (CMS), Health Resources and Services Administration (HRSA), Substance 

Abuse and Mental Health Services Administration (SAMHSA), Food and Drug Administration (FDA), and the National Institutes of Health (NIH), and with other Federal agencies, such as the U.S. Bureau of the Census (Census), the Social Security Administration 

(SSA), the U.S. Department of Veterans Affairs (VA), and the U.S. Departments of Labor 

(DOL), Education (DOE), Housing and Urban Development (HUD), Commerce (DOC), 

Homeland Security (DHS) and Interior (DOI), will improve methods of data collection. 

One of the most useful actions that can be taken under the Secretary’s leadership is 

to explore ways to improve linkages across Departmental agencies and their datasets 

and also to improve linkages between health and non-health datasets, such as those 

containing information on socioeconomic position, geographic location, and education. 

A growing body of literature indicates that these factors can have a distinct impact on 

health status. As an example, one of the best predictors of the health status of a population subgroup is its highest level of educational attainment, on average. Some policy 

experts have suggested that based on the strong association between education and 

health, one way to increase overall health in the population is to actually just increase, 

not the health interventions, but the population’s level of educational attainment. To 

the extent that health data can be linked with educational data, we can learn of better 

ways to reduce or eliminate factors associated with health disparities that are outside 

6 Eliminating Health Disparities 
health. Our ability to predict and correct health disparities may be enhanced by knowledge of other factors affecting respondents. 

Enhancing health survey data through linkages between health datasets 

The National Health Interview Survey (NHIS) and the National Health and Nutrition Examination Survey (NHANES) routinely link to mortality and Medicare data 

to enrich the health information available for selected racial and ethnic populations 

and for populations defined by socioeconomic status. These surveys, along with the 

National Survey of Family Growth (NSFG), also link to contextual measures of socioeconomic position at various levels of geography and from a variety of sources. 

RECOMMENDATION 1

Although the HHS Gateway (www.hhs-stat.net/) lists existing links between some of the 

HHS surveys, more linkages between the HHS surveys and those of agencies outside 

HHS, such as surveys conducted by SSA, DOE, HUD, and others would help to increase 

available information on contextual factors that critically shape health disparities. Agencies also should pay attention to fostering methodological and outcomes research on 

the health of racial, ethnic, and linguistic subpopulations. In recent reports, the National 

Research Council (NRC) and the Institute of Medicine (IOM) have noted that efforts 

to identify and alleviate health disparities would benefit from incorporating information 

on income, wealth, acculturation, and geocoded place so that researchers, health care 

providers, and community groups engaged in health care policy reform can more 

effectively get the information they need to answer questions related to the causes of 

and contributors to health disparities. 

The NCVHS also recognizes the potentially important contribution of administrative 

data, such as health services claims, in identifying and clarifying disparities (44). 

However, this contribution exists only if administrative health data systems include 

reliable, accurate, and complete racial and ethnic information. HHS can play an 

Strengthening Data on Race, Ethnicity, and Primary Language 7 
RECOMMENDATION 1

important leadership role in identifying the most effective means to achieve the inclusion 

of these data in both public and private sector administrative data systems. HHS’s leadership will be critical in helping respondents understand why data on race, ethnicity, and 

primary language are necessary and how the data can be beneficial and useful to their 

own health care delivery and outcomes. Federal leadership, coordination, and technical 

assistance also can help to dispel longstanding concerns of racial and ethnic populations, 

whose history is rich with instances of discrimination based on race and ethnicity. 

Inclusion of race and ethnicity data in administrative systems will provide valuable 

information, but NCVHS recognizes that such data will not capture all service utilization, 

particularly information on the uninsured. HHS should consider approaches for 

addressing this deficiency. 

The impact of HHS’s leadership, particularly through AHRQ’s call to action to private sector health plans to collect complete and accurate data on race, ethnicity, and 

primary language, has been extremely beneficial to several activities underway in this 

arena (45,46). NCVHS appreciates HHS’s response to its letter of September 26, 

2003, requesting attention to the role that HHS could play through a partnership with 

the private sector health plans to investigate the feasibility of collecting such data. The 

letter also suggested an analysis of when and where to capture the data on racial/ethnic 

classification and how and when these data should be linked, particularly if self-reported 

designations are fluid. Indeed, several important feasibility studies are currently underway that can inform these efforts (47–49). The Health Research and Educational Trust 

(HRET), an arm of the American Hospital Association (AHA), also has developed an 

initiative to create and test a uniform framework for collecting hospital data on race, 

ethnicity, and primary language. This framework will be linked with AHA’s information 

systems to assess quality and identify disparities in care (50). AHRQ, along with the 

Robert Wood Johnson Foundation and 10 major health plans have formed the National 

Health Plan Learning Collaborative to Reduce Disparities and Improve Quality (51,52). 

HHS is urged to pursue the following strategies that will help enhance the quality, reliability, completeness, and integration of data collected on racial, ethnic, and linguistic 

subpopulations. 

8 Eliminating Health Disparities 
A. Advance HHS Leadership, Coordination, and Partnerships 

Currently, some Federal agencies have considerable experience and expertise in collecting data on race and ethnicity in surveys, translating instruments, and conducting analytic 

procedures. This experience and expertise is not shared consistently or equally across 

Federal agencies. The result is databases and data across Federal agencies that often are 

not comparable and that cannot be easily linked. Moreover, data collection overall does 

not adequately benefit from the state-of-the-art expertise within particular Federal agencies. Although agencies should have flexibility in the way they collect data, some pay too 

little attention to the transfer of knowledge, possible linkages, and cross-agency coordination that would enhance HHS’s efforts to address health disparities. HHS leadership 

in this arena is critical. 

Federal agencies often work with states in data collection efforts, and state databases 

are, in many ways, key to Federal efforts to reduce and eliminate health disparities. Many 

public health datasets used by Federal agencies to assess health disparities, such as those 

for births, deaths, AIDS surveillance, sexually transmitted disease incidence, and cancer, 

are collected through states (53,54). A critical role that states can play is to provide 

geographically-specific population estimates for the subgroups for whom national data 

are limited or nonexistent in Federal population health data collection efforts. The Subcommittee learned, however, in a hearing (Philadelphia, November 2002), that states are 

already burdened with a number of under- or unfunded data activities. They vary greatly in their capacity to collect, analyze, and interpret data on racial and ethnic groups. 

Moreover, state and vital statistics representatives also indicated that at the state and 

local levels, public health data needs often require race and ethnicity classifications in 

substantially greater detail than the minimum mandated in reporting to Federal agencies 

(55). States described the burden involved in collecting data for state and local levels, 

public health needs, and aggregating data to the minimum set of categories most often 

employed in reporting to Federal agencies as presenting a burden that exceeds state 

capacity. Racially and ethnically heterogeneous states also commented on the dilemmas 

they face in assigning nationalities and ethnic designations to aggregated categories that 

do not necessarily include these nationalities and designations in their definitions. 

RECOMMENDATION 1

Strengthening Data on Race, Ethnicity, and Primary Language 9 
RECOMMENDATION 1

States also require denominator-level data at the sub-state levels in order to target local 

or population-specific interventions to reduce health disparities. This requires use of 

inter-censal population denominators by race, ethnicity, age, gender, county, city, and 

town (56). States need Federal assistance on how to handle missing race and ethnicity data and they need guidance on how to aggregate race categories for small areas in 

which small denominators may result in suppressed data because of privacy and confidentiality concerns. As states find themselves responsible for more and more of the 

health interventions needed to eliminate health disparities, accurate data—and guidance 

on how to collect and classify them—become ever more critical. 

1. HHS should encourage its own agencies such as the National Center for Health 

Statistics (NCHS), NIH, SAMHSA, HRSA, and CMS, and other Federal agencies 

to hold national, state, and racial/ethnic subgroup-specific conferences that focus 

on improved methods for collecting data on health disparities in racial and ethnic 

subgroup populations and building strategies for closing the gap in those disparities. 

These conferences will enhance coordination among Federal agencies and promote 

sharing of expertise among Federal, academic, and private sector groups (e.g., health 

plans, hospitals) in ways to collect, classify, and aggregate for analyses data on racial and ethnic subpopulations. They also will contribute to improvements in the 

Nation’s data collection infrastructure (Recommendation 2). These conferences 

also may be useful in broadening the discussion to include the importance of and 

methods for collecting other variables such as nativity, country of origin, educational 

attainment, socioeconoic position, place of residence, and primary language. 

The overall aim of these conferences would be to develop an action plan for: 

z identifying beneficial partnerships and data linkages across Federal agencies; 

z identifying constituency user groups at the academic, state, and community levels 

who could contribute expertise about integrating subpopulation racial and ethnic 

classification and data capture issues in Federal surveys and administrative data; 

z determining operability and best practices mechanisms to transfer data between 

Federal and state and local agencies; and 

z identifying the training needed to collect such data. 

10 Eliminating Health Disparities 
Establishing a system to track the outcomes of these conferences (i.e., the improvement 

in available data on racial, ethnic, and linguistic populations and transfer of knowledge 

within Federal agencies) also is needed. 

The Early Childhood Longitudinal Study (ECLS): An excellent example of 

enhancing data linkage through a partnership between the National Center for 

Education Statistics, National Institutes of Health, and the National Center for 

Health Statistics 

The ECLS provides national data on children’s status at birth and at various points thereafter. ECLS also provides data to test hypotheses about the effects of a wide range of family, 

school, community and individual variables on children’s development, early learning, and 

early performance in school. 

The ECLS-B is a multisource multimethod study focusing on the home and educational 

experiences of children during their first 6 years. ECLS-B’s goal is to provide reliable and 

comprehensive data that may be used to describe and understand children’s: 

• early development; 

• health care, nutrition and physical well-being; 

• preparation for school; 

• experiences in early care and education programs, kindergarten, and first grade; and 

• how early experiences relate to later development, learning, and experiences in school. 

To achieve this goal, the ECLS-B is following a nationally representative cohort of children 

born in 2001 from birth through first grade. The parents of 10,688 children participated in 

the first wave of the study when the children were approximately 9 months old. 

This study illustrates how complex data can be gathered when three agencies such as NIH, 

NCHS, and NCES partner. NIH provided some funding and also was instrumental in the 

design and instrument development for the birth cohort. NCHS facilitated the sample design. We encourage HHS to identify and adopt those opportunities for partnerships with 

non-health agencies that can provide data into how contextual variables such as education, 

position in society, and place of residence play a role in health and illness. 

RECOMMENDATION 1

Strengthening Data on Race, Ethnicity, and Primary Language 11 
RECOMMENDATION 1

2. HHS is urged to use existing structures to develop and fund mechanisms that can 

support a research, training, and policy agenda for collecting, classifying, analyzing, 

and disseminating racial, ethnic and linguistic subpopulation data. This agenda would 

be invaluable for private data users, academic researchers, state and local health 

departments, and collectors of Federally-mandated data (e.g., funeral directors, hospitals, nursing homes). It will require an examination of policies and procedures that 

ensure both privacy and confidentiality of data and accessibility of data for analyses. 

It also will require an examination of how well HHS’s data-sharing and data-linkage 

activities (linkage both within and outside of HHS) are progressing. In addition, this 

agenda will require a mechanism to monitor on a biennial basis whether subpopulation data for each of the various racial, ethnic, and linguistic subpopulations are being 

collected, released, and made available for public use. 

3. HHS is urged to develop a set of specific goals for its Data Council Integration 

Group (http://aspe.hhs.gov/datacncl/index.shtml) that would result in actions to increase linkages among Federal surveys; highlight these linkages on HHS’s Gateway; 

and establish conceptual equivalency across surveys for already used variables such 

as income, education, and geographic location. All these actions will highlight the 

fact that disparities in these non-health variables often go hand-in-hand with health 

disparities. They will help increase data available for rigorous and complex analyses 

on the Nation’s diverse racial, ethnic, and linguistic subpopulations. Finally, they 

will contribute to improving the Nation’s data collection infrastructure 

(Recommendation 2). 

4. HHS is urged to develop a mechanism by which it will work on an ongoing basis 

with other Federal agencies, such as the Census, DOL, DOE, DOC, and DOI, to 

transfer best practices knowledge on methods for collecting, classifying, and linking 

complete and accurate data on subpopulation race and ethnicities, as well as primary 

language, and income and develop policies and procedures that can increase linkages 

of health and non-health data to survey and administrative data held by other 

Federal agencies. 

12 Eliminating Health Disparities 
5. HHS should undertake a study to determine how well racial and ethnic subpopulations are represented in HHS surveys, and where data collection for these groups 

would benefit from survey integration. HHS began such an assessment in a report 

received by ASPE (57), but this report was limited to a few racial and ethnic subpopulations and only to surveys. HHS should undertake a similar examination but 

with attention to levels of participation by smaller racial and ethnic subpopulations 

to determine whether the surveys are collecting detailed racial and ethnic classifications and what data benefits might accrue from survey integration. The question is 

whether, with coordination and preplanning, data from disparate sources can be collected or integrated based on consistency in measurement to facilitate sophisticated 

analyses based on the aggregation of data on small racial and ethnic subpopulations. 

6. HHS is urged to examine the race, ethnicity, and nationality coding categories and 

instructions used by states in vital statistics and other sources of data reported to 

HHS to determine what steps can be taken to develop accuracy, ensure consistency, and enhance the quality of data received from the states. HHS should provide 

resources and technical assistance during this reengineering process to ensure that 

states have enough personnel who are trained sufficiently in collecting and classifying data on race, ethnicity, and nationality, and to ensure that they are able to fulfill 

Federal data reporting requirements without undue reporting burden. 

7. NCHS and other private and academic partners, whenever feasible, should collaborate with Census to conduct methodologic work on and carry out post- and 

inter-censal estimates by race and ethnicity of the population by age and gender 

(state-level and below, including tribes and tribal land areas) and socioeconomic and 

contextual characteristics (national, state-level, and below). Progress on this 

strategy also will contribute to improving infrastructure under Recommendation 2. 

One promising approach to increase racial and ethnic subpopulations data may be 

through the American Community Survey (ACS), which is Census’ reengineered approach to Census 2010. Data from the ACS will be released every year. The ACS 

replaces the decennial collection and estimation of detailed physical characteristics 

(long form), including race and ethnicity, with a data collection process lasting a 

RECOMMENDATION 1

Strengthening Data on Race, Ethnicity, and Primary Language 13 
RECOMMENDATION 1

decade (58,59). This change from the once-every-10-years approach to an ongoing 

collection of data not only allows for more current data within specific geographic 

regions but could be a useful vehicle for states to obtain detailed subpopulation data. 

The Committee urges HHS to determine through its Data Council whether partnerships or coordinated field efforts with the ACS could provide a better economy 

of subpopulation data on race, ethnicity, and primary language groups. The ACS 

has already demonstrated its ability to get more complete and accurate data on 

ancestry (June 2004). The HHS investigation will need to examine the strict privacy 

and confidentiality rules maintained by Census to determine how states, NCHS, or 

others could conduct supplemental modules, add supplemental questions, or recruit 

particular subpopulations for survey participation. 

8. NCHS is urged to continue providing technical assistance (e.g., similar to NCHS efforts in the New York City National Health and Nutrition Examination Survey or in 

the California Health Interview Survey) to facilitate increases in the number of data 

collection efforts targeted to particular subpopulations at the state, city, or county 

level. NCHS is urged to communicate with HHS and the Committee if such activities 

require budget enhancements, as it is critical that NCHS not undertake this process 

if its cost will lead to reductions in any of its current activities. 

B. Increase the Availability of Data on Diverse Subpopulations 

The ability to identify disparities and improve the health and health care of racial, ethnic, 

and linguistic subpopulations is directly tied to the availability of accurate health statistics 

specific to the various subpopulations as they vary in age, life-course, gender, language, 

geographic location, socioeconomic position, and access to and participation in health 

plans and health care. Currently, the quantity and quality of Federal data on these attributes of specific subpopulations of Black, Asian, Native Hawaiian and Other Pacific 

Islanders, and some Hispanic groups are nonexistent or suffer from insufficient sample 

sizes, very limited accessibility for public use as a result of few secure data centers, use 

of minimum race categories, and questionable accuracy based on observational versus 

self-report of racial and ethnic classification. 

14 Eliminating Health Disparities 
The National Research Council’s Eliminating Health Disparities report (60), the AHRQ 

Report Card on Health Disparities, and a series of previous letters from this 

Committee* have recommended various strategies for increasing the quantity and improving the quality of data on diverse racial, ethnic, and linguistic subpopulations in the 

United States and U.S. territories. We offer several of those recommendations again, 

with the most compelling being the development and implementation of a plan for collecting data on a periodic basis, which will result in available data on all subpopulations 

residing in the United States. 

1. HHS is urged to develop a plan and criteria for conducting targeted surveys for 

those racial, ethnic, and linguistic populations whose numbers are so small or geographically disbursed that, because of privacy and confidentiality concerns, data on 

them are not available in current public-use data files or for whom their small occurrence in population-based surveys precludes accurate subgroup analyses. These 

surveys should be repeated at least once every 10 years. HHS should ensure that 

new funding is available to support the development and implementation of this plan. 

Publication of a schedule for the collection, reporting, and public use of this data 

would be useful. 

2. To derive enhanced benefit from currently available data on those racial, ethnic, 

and linguistic populations whose occurrence in Federal population surveys is small, 

the Committee asks that HHS provide technical assistance. This technical assistance 

should include but not be limited to the publication and wide dissemination of guidance on the methods of aggregating small sample data across Federal surveys and, 

where possible, administrative data. HHS currently has a number of existing mechaRECOMMENDATION 1

* NCVHS letters: August 23, 2004, Letter to the Secretary on Recommendations on Populations Based Data Collection; September 26, 2003, Letter to the Secretary on Recommendations for Targeted Data Collection; September 26, 

2003, Letter to the Secretary on Collection of Racial and Ethnic Data by Health Plans; March 27, 2003, Letter to the 

Secretary on Populations-based Data for Racial and Ethnic Minorities; October 19, 2001, Letter to CMS on Racial and 

Ethnic Data Collection; July 6, 2001, Recommendations to HCFA on SCHIP Data Collection; March 14, 2001, Letter 

to Katherine Wallman, Chief Statistician, Office of Management and Budget regarding Provisional Guidance on the 

Implementation of the 1997 Standards for Federal Data on Race and Ethnicity (December 15, 2000); December 1999 

Medicaid Managed Care Data Collection and Reporting; December 1999 Health Data Needs of the Pacific Insular 

Areas, Puerto Rico, and the U.S. Virgin Islands. 

Strengthening Data on Race, Ethnicity, and Primary Language 15 
RECOMMENDATION 1

nisms, such as conferences and data user meetings, advanced statistical reports, Web 

site postings, and technical notes that accompany surveys, which can be employed to 

disseminate this technical assistance. 

3. HHS should fund additional basic research in survey methodology on how to reach 

and successfully recruit difficult-to-access subpopulations, such as migrant workers, 

homeless persons, persons in institutions, and persons who are only loosely connected to households. 

4. Agencies such as NIH, NCHS, AHRQ, HRSA, SAMHSA, and the Indian Health Service (IHS) should explore incentives to increase the participation of racial, ethnic, 

and linguistic subpopulations in surveys and other types of health research. Cultural 

sensitivity, confidentiality, and incentives were identified by the Committee as key to 

increasing participation of subpopulations. Agencies are urged to investigate religious and cultural principles that influence the donation of tissue, organs, or biological specimens that may be used in research, as well as identify procedures that will 

address and reduce racial, ethnic, and immigrant group concerns about privacy and 

confidentiality of data that may be reported, used, or linked to non-health agencies. 

HHS also is urged to explore incentives, such as payment for participation in data 

collection, which can serve as encouragements while not violating Federal, state, 

or local regulations. For example, because of local reporting requirements, study 

participants who receive cash for participating in data collection efforts may find that 

their other Federal, state, or local assistance payments can be reduced. 

5. HHS is urged to implement an education campaign using media similar to “Take A 

Loved One For a Check-Up Day” (www.healthgap.omhrc.gov/2005factsheetdrday.htm) 

to inform racial, ethnic, and linguistic subpopulations of the benefits of reporting 

their racial, ethnic, and primary language designations. HHS should consider consulting and partnering with community-based agencies and with private sector health 

plans currently engaged in similar efforts to determine how best to carry out such a 

campaign. The Bureau of the Census, which conducted a similar campaign to ensure 

participation by diverse subpopulations in the 2000 Census, could provide valuable 

guidance to HHS. 

16 Eliminating Health Disparities 
A necessary component of this effort is a thorough understanding of why people are 

reluctant to report their racial, ethnic, and primary language information. A number 

of studies have documented a variety of factors, such as fear of being treated differently or receiving substandard care, that help to explain the reluctance of individuals to report this information in health care encounters (61). However, if we are to 

reduce these fears, it is necessary to document any such violations and develop adequate mechanisms to investigate and address them. Federal, state, and local Offices 

of Civil Rights could be useful in monitoring these violations. We are encouraged 

by the feasibility studies that have been conducted on ways to reduce reluctance to 

provide this information. Their results will help to inform the education campaign 

recommended here. 

6. HHS should examine the feasibility of expanding translating surveys into more 

languages; the latest research suggests that conceptual equivalency in translation is 

the gold standard. In other words translation methods must move beyond such 

techniques as back translation to ensure semantic, content, technical, construct and 

criterion equivalency across cultural groups. At present, most Federal populationbased surveys and HHS’s health information provided on the Internet are translated 

only into Spanish. As HHS increases the participation of subpopulations, particularly 

from Asian and Other Pacific Islander groups, whose languages may include as many 

as 32 linguistic groups (62,63), translation of instruments and health information into 

additional languages will be necessary. Developing methods for training, accessing, 

maintaining, and expanding a pool of interviewers fluent in various languages also will 

be necessary. 

7. NIH, NCHS, and AHRQ should use Requests for Applications (RFAs), Requests for 

Proposals (RFPs), and other mechanisms to fund methodologic and empirical studies 

on best practices for multiple race allocation, bridging of multiple race, definitions 

of race, ethnicity, and nationality as understood by racial and ethnic subpopulations. 

These studies should highlight immigrants and circumstances that surround the fluidity of ethnic and race identification. 

RECOMMENDATION 1

Strengthening Data on Race, Ethnicity, and Primary Language 17 
RECOMMENDATION 1

C. Improve the Collection of Data on Geography and Socioeconomic Position 

Reporting data on geographic location, along with age, language, race, ethnicity, and socioeconomic position, when possible, helps investigators identify environmental factors 

that contribute to health disparities. Including variables beyond an individual’s demographic variables is also important in determining targets for interventions outside of the 

behavior of the individual. 

At one of its hearings, the Population Subcommittee heard calls for measuring socioeconomic status beyond assessing income, assets, or education. The Committee recommends that HHS’s efforts to collect data on socioeconomic information should be 

directed to understanding and using socioeconomic position (64–66). 

In the United States, socioeconomic status has traditionally been measured by education 

and income. These variables as well as other possible indicators of socioeconomic status are found in the Census, the American Community Survey, the Current Population 

Survey, and other leading population-based surveys that do not collect health information. Federal population-based health surveys, on the other hand, tend to examine 

socioeconomic status more broadly by also including proxy variables, such as health 

insurance coverage, employment status, and detailed occupation (e.g., worker, manager, 

supervisor), as well as by educational attainment, income, and occasionally wealth. Thus, 

if the information from these two different types of surveys could be linked, it could 

create opportunities to better assess the relationship of these socioeconomic factors in 

health status, health behaviors, access to health care, and treatment of physical and mental health. Surveys also should capture information about a range of contextual variables 

that have been found to be explanatory in health differences such as social support, 

social networks, family supports, social cohesion, community involvement, perceived 

financial burdens and differences in the health status of foreign-born versus U.S.-born 

individuals, which at times are also linked to socioeconomic status. 

Administrative data, such as that captured from an individual’s medical encounters, 

bills,or claims, is often not likely to have detailed socioeconomic data associated with it, 

18 Eliminating Health Disparities 
although health insurance information usually is available from administrative records. 

If address information is available, administrative data can be geocoded and linked with 

socioeconomic variables available from the Census (at the block, tract, or county level). 

This procedure is routinely used to enhance SEER-Medicare administrative data, 

for example.* 

Improving the capacity to geocode administrative data and link them with data on socioeconomic position also is critical. Administrative data as well as survey data would 

benefit from linkages to contextual data. Hearing participants recommended that the 

Social Security Administration and CMS, the agencies that generate the two largest administrative datasets in the nation, collect socioeconomic data for individual beneficiaries 

and their spouses and make it available for research purchases. Participants in several of 

the Subcommittee’s hearings suggested that HHS work with states to improve the accuracy and coverage of vital statistics and to increase response rates in the behavioral risk 

factor surveys (BRFSS and YBRFSS) to ensure that geographic measures will be available 

for data collection efforts, especially at the state level. 

RECOMMENDATION 1

*

 SEER is NCI’s Surveillance, Epidemiology, and End Results program of cancer registries. SEER-Medicare 

data reflect the linkage of two large population-based sources of data that provide detailed information 

about elderly persons with cancer. For more information about SEER, visit http://seer.cancer.gov/. For 

more information about SEER-Medicare data, visit http://healthservices.cancer.gov/seermedicare/. 

Strengthening Data on Race, Ethnicity, and Primary Language 19 
RECOMMENDATION 1

Enhancing data through linkage to place: geographic location and its context 

have an important impact on the health status of individuals and their access to 

health care 

In its hearings, the Population Subcommittee heard testimony about the essential value 

of area-based measures, such as the proportion in a specific area with and without college degrees (educational structure), with defined levels of income or wealth (economic 

structure), and with professional jobs (occupational structure). Location does matter, and 

geocoding offers the potential of accurate and inexpensive data on location. 

Precise information about location and its context (e.g., location and characteristics of residence, school, employment, and health care provider) is essential not only for the analysis 

of single sources of information but also for linkage to other datasets that are similarly 

geocoded. This is particularly important for tribes of American Indians, urban American 

Indians or Alaska Natives, and Native Hawaiians and Other Pacific Islanders, whose health 

may be affected by their place of residence. Geocoding and subsequent linkage of datasets 

increase the potential to understand the impact of location on health and health status of 

racial, ethnic, and linguistic subpopulations. 

As discussed by Dr. Nancy Krieger in the subcommittee’s November 2002 hearing, the precision of geocoding can range from very low (e.g., state of residence) to very high (e.g., latitude 

and longitude coordinates obtained from satellite systems). Though geocoded data with high 

precision and accuracy are useful for explaining the impact of location on the health of specific populations, they also must be used with caution because they can increase the risk that 

individual respondents will be identified. 

1. HHS is urged to improve methods for capturing and using accurate geocoding data 

while maintaining the highest standard of privacy and confidentiality protections. 

2. HHS is urged to convene a group across Federal agencies to assess what measures 

of socioeconomic position are currently available in the Federal data collections 

effort, and what linkages are possible between health and non-health sources for 

socioeconomic data, and disseminate this information through HHS’s Gateway. It 

will be necessary to follow up to determine whether the recommended linkages occur and evaluate whether they result in increased data on socioeconomic position in 

health disparities of racial, ethnic, or linguistic subpopulations. 

20 Eliminating Health Disparities 
Investigating health through linkages with non-health datasets: an example of 

what can be done now 

It is now possible to match Medicare records to lifetime earnings records in Social Security, and in turn, match these data with survey records, such as those from the Survey of 

Income and Program Participation (SIPP). SIPP provides information on socioeconomic 

status, the Social Security records give a way of measuring longer-term and lifetime income, 

as well as mortality, and the Medicare records provide information on the actual use of 

medical care, at least among the disabled on Disability Insurance and the elderly on Old 

Age and Survivors Insurance. 

Because access to such records is often limited, creating such linkages requires that agencies give attention to developing mechanisms to facilitate use of these data by researchers. 

Cooperative agreements, in which a government agency performs the statistical work in 

cooperation with non-government researchers, is one such mechanism. HHS is requested 

to encourage agencies to increase both linkages across datasets as well as develop mechanism that facilitate the use of such linked data for non-government researchers. 

RECOMMENDATION 1

3. HHS should evaluate how best to collect socioeconomic information in electronic 

health records and encourage best practices in public and private health record 

systems. 

D. Enhance the Collection of Data on Race, Ethnicity, and Primary Language in Federal 

Health Programs 

HHS is urged to examine its own health programs to determine whether they can 

improve the collection of data on race, ethnicity, and primary language from individuals 

who receive care through Federal health programs (67,68). Currently, more than half of 

the health care received by racial and ethnic populations in the United States is provided 

through Federally-funded programs (e.g., Medicare, Medicaid, VA, the Department of 

Defense, or Federal employee health plans). By mandating the collection of data on 

race, ethnicity, and primary language, HHS could determine and measure disparities in 

quality of care received by the users of its own systems (69). This mandate would focus 

Strengthening Data on Race, Ethnicity, and Primary Language 21 
RECOMMENDATION 1

on improving collection of data on race, ethnicity, and primary language across a range 

of initiatives, including the Medicare Hospital Quality Initiative, CMS Abstraction and Reporting Tool (CART), all Medicare billing operations, Medicaid, State Children’s Health 

Insurance Program (SCHIP), and the Health Insurance Portability and Accountability Act 

(HIPAA). Progress in this area also will benefit the data collection infrastructure strategies described under Recommendation 2. 

1. The Committee recommends that HHS take steps to ensure that Medicaid administrative systems include race and ethnicity information that can be linked to encounter or claims data. Performance of these linkages should be required. The Committee requests that HHS track and report the extent to which this goal is met. 

22 Eliminating Health Disparities 
RECOMMENDATION 2 

HHS is urged to increase and strengthen the capacity of its health 

statistics infrastructure to analyze, report, and disseminate data on the 

various ethnic, racial, and linguistic subpopulations in the United States 

and territories. 

To eliminate health disparities, HHS must ensure that the nation has a strong and effective health statistics infrastructure for analyzing, reporting, and disseminating high-quality, complete, and reliable data and information on health and health disparities across 

subpopulations. Such an infrastructure requires well-trained investigators with ready access to the data of the highest quality and completeness on subpopulations and who are 

equipped with content expertise, cutting edge methodology, and statistical techniques. 

Researchers with the necessary background, skill, and interest are needed to shape and 

influence the health disparities research agenda, including identifying the variables on 

which interventions are most likely to eliminate health disparities (70). In addition, researchers must be trained to analyze the data so they can help answer questions about 

the extent to which racial and ethnic groups vary in health care use and their access to 

and satisfaction with care. At present, there is a shortage of researchers in this area 

who are themselves members of racial and ethnic subpopulations. HHS should increase 

ease of access to the data (e.g., increased remote and secure data access) for both 

intramural and extramural researchers of all racial and ethnic backgrounds to use HHS 

data to answer questions related to health status, health outcomes, use of health care 

services, and access to care for small racial and ethnic populations. 

Researchers also must have access to data on the racial, ethnic, and linguistic subpopulations that most often face disparities in their health status, health outcomes, access 

to care, and health care treatment. Easier access to Federal data collected on these 

diverse subpopulations can be achieved through increasing the number of secure data 

RECOMMENDATION 2

Strengthening Data on Race, Ethnicity, and Primary Language 23 
RECOMMENDATION 2

centers placed strategically throughout the country and revising procedures for access 

to microdata (non-aggregated data containing variables that may make respondents identifiable) used for research and statistical purposes outside of these data centers. 

A strong commitment to disseminating data and facilitating its use by all interested parties also is essential to the success of this endeavor. 

HHS is urged to identify the data tools necessary to track progress toward eliminating health disparities. Progress includes using best practice solutions and improving 

the dissemination of data collected on racial, ethnic, and linguistic subpopulations. The 

following strategies will strengthen HHS’s health statistics dissemination infrastructure, 

thereby helping HHS to achieve these objectives. Progress in many of the strategies 

below also will help improve the overall data collection efforts discussed for 

Recommendation 1. 

A. Expand Access to Data on Subpopulations 

Although HHS collects a great deal of data on some racial, ethnic, and linguistic populations, particularly in population-based surveys, these data are often not available for use 

outside a secure-data-center because of the small numbers represented in these datasets and the consequent need to protect the privacy and confidentiality of the respondents. The risk to privacy arises from the technical problem of “identifiability.” This situation occurs when an individual can be identified by the values associated with variables 

in the health dataset or interview, even in the absence of direct identifiers. Identifiability 

is an especially acute problem with small populations, whether they are small in terms 

of absolute size or in terms of limited time of data collection or regional coverage. As 

hearing participants made clear, the very limited numbers of secure data centers that 

exist currently do not provide adequate access to this type of data by potential users. 

The Subcommittee urges that any approach to enabling greater access to these data 

should strike a balance between individual privacy and confidentiality and society’s 

needs for data. Access to health information involves balancing an individual’s expecta24 Eliminating Health Disparities 
tion of privacy of personal and health information against society’s need for information 

to monitor and improve the health and health care of all individuals (71). This balance 

must be achieved to ensure the success of Federal data collection efforts. On the one 

hand, if individuals have few assurances of privacy, or if they lose trust in the promise of 

confidentiality, they will not consent to be interviewed or will not provide accurate data. 

Low response and participation rates lead to bias in the samples and loss of efficiency 

of the survey design. On the other hand, if data are not accessible by the research and 

public health communities because of restrictions to preserve privacy, then little benefit accrues to the respondents who volunteer their time or to the public who fund the 

programs and expect results. The tradeoff and the controversies are especially acute 

in the study of racial, ethnic, and linguistic subpopulations, whose health status, health 

outcomes, and receipt of health care and treatment are often distinctly worse than that 

of other populations. 

1. HHS should work with Census to place or share additional secure data centers in 

academic and community settings. Funding should ensure that all centers are 

adequately staffed and supplied with current hardware and all necessary software so 

that interested users will have ready access to data needed to assess the health of 

subpopulations. Options for remote access to data also should be expanded. 

2. HHS should consider additional options, including disseminating and providing technical support for synthetic microdata, and promoting research on other forms of 

protecting identifiable data on subpopulations. These and other emerging methods 

can increase access to data on subpopulations for research and statistical purposes 

in a manner consistent with existing statutes and regulations and in alignment with 

the expectations of privacy of potential respondents. 

B. Improve Data User Training 

Several reports have noted the limited diversity of the U.S. health care professional 

workforce. The Sullivan Commission report Missing Person: Minorities in the Health 

RECOMMENDATION 2

Strengthening Data on Race, Ethnicity, and Primary Language 25 
RECOMMENDATION 2

Professions, the IOM’s Unequal Treatment, and the NRC’s Eliminating Health Disparities all 

have acknowledged the critical shortage of health professionals of diverse backgrounds 

and those with training in health problems and health care of diverse populations. The 

W.K. Kellogg Foundation, the Robert Wood Johnson Foundation, and a number of 

professional organizations have echoed these findings. NCVHS acknowledges the long 

history of HHS in preparing a well-trained and diverse health care and scientific workforce, particularly through its training mechanisms at NIH, its establishment of training 

as a priority for the NIH National Center for Minority Health and Health Disparities, 

and the minority health statistics program at NCHS. However, it appears that in a time 

of shrinking resources and flat budgets, some of these programs and awards mechanisms 

have been cut back, become inactive, or been dropped due to a lack of funds. At this 

critical juncture, when HHS is calling for action to eliminate health disparities, a welltrained health care and scientific workforce with expertise in health disparities issues 

is essential. 

1. HHS should support and fund initiatives directed to enhancing the capacity of health 

care professionals and researchers to use HHS data to address questions in the 

areas of health status, health outcomes, access to care and disparities in health care 

in racial, ethnic, and linguistic subpopulations. 

2. NIH, HRSA, SAMHSA, and NCHS should renew and expand existing grant programs to train researchers with interests in health disparities and health statistics. 

In particular, these agencies should support programs that develop the expertise 

of researchers from racial and ethnic subpopulations. Programs such as minority 

supplements to existing awards, career development awards (K awards) in the area 

of minority health statistics, RFAs or RFPs to conduct methodological work in this 

area, calls for Centers on Minority Health Statistics, and other mechanisms used by 

NCHS, HRSA, SAMHSA or NIH, can be employed to train these researchers. A 

reporting system should be established to track progress in meeting this goal. 

3. The Federal government has specific treaty requirements with American Indian 

tribes. These create a special relationship as a function of sovereignty that governs 

data ownership and data collection. HHS should support existing efforts and de26 Eliminating Health Disparities 
velop new programs that will train American Indians and Alaska Natives and their 

community-based organizations and tribal governments to use and analyze American 

Indian and Alaska Native health statistics. A reporting system should be established 

to track progress in meeting this goal. 

C. Link Data Systems and Dissemination Methods to Bridge Old with New Data 

HHS is continually collecting and publishing new data on population groups. As agencies 

have adopted OMB’s 1997 guidelines, the ways in which race and ethnicity have been 

reported have gradually changed. For example, data on Native Hawaiian and at times 

Other Pacific Islanders were previously nested in the larger category of Asian and in 

some instances “Other.” Now they are being reported separately. These shifts from 

one race group to another will likely be seen when analysts and other users cannot 

directly compare new data to data collected under the old standard. Monitoring 

health outcomes for new groups also will require changes from the old presentation 

style of data. 

As a result, new methods for making old and new data comparable (bridging) will need 

to be noted in data publications. For example, age distributions of multiracial populations will appear much younger, because the groups being displayed are sometimes 

younger in comparison to the White population. Estimates on health and access to 

health care for multiracial persons will be highly variable due to relatively small sample 

sizes for these groups. Monitoring of the potential impact of the new Federal standards, 

with periodic reports to the Secretary through the HHS Data Council, would be both 

useful and important in ensuring both appropriate comparisons and ongoing trend 

analysis. 

1. NCHS is urged to provide technical assistance around bridging by developing 

easily available analytic guidelines for recoding, tabulating, and bridging racial and 

ethnic data under the OMB guidelines of 1997. These should be summarized and 

placed on the NCHS and the HHS Web sites and included in other analytic guideline 

RECOMMENDATION 2

Strengthening Data on Race, Ethnicity, and Primary Language 27 
RECOMMENDATION 2

documents. This guidance should emphasize that collecting data on race and ethnicity is legal and appropriate and should present the potential beneficial for health 

planning and quality improvements in health services. NCHS also is encouraged 

to explain in those guidelines the implications and potential impact of various race 

allocations methods selected and their advantages and disadvantages for racial and 

ethnic subpopulations (72). 

D. Improve Data Quality 

Incentives to improve the collection of data on subpopulations will only be frustrated if 

they lead to missing or inaccurate data. Missing or incorrect data lead to both biased 

estimates and/or to estimates with unnecessarily high variability. Efforts to increase the 

volume of data should not occur at the expense of procedures and incentives to ensure 

the accuracy and completeness of the data. 

For example, in an attempt to reduce missing data and limit the use of “Other Race” as 

a response option, the new OMB standards requires that Federal survey instruments list 

the ethnicity question before the race question (73–76). Even with this design, approximately 25 percent of respondents, most of them Hispanic, do not answer the race question. Approximately 40 percent of Hispanics select “Other Race,” and approximately 

90 percent of those who select “Other Race” are Hispanic. These response patterns 

are very similar to those seen in surveys taken before the change in Federal standards. 

Clearly, research is needed to understand how Hispanics interpret questions on race 

and ethnicity and what factors influence their reporting. Without such an understanding, it is unlikely that Federal agencies will be able to reduce the amount of missing data 

on this essential question. 

States also need guidance in collecting and reporting subgroup classifications. In their 

study of racial and ethnic classification in the New England region, Laws and Heckscher 

(77) report the confusion among various states on how to classify some individuals. For 

example, in recording vital statistics, one state followed the Federal guidance and classi28 Eliminating Health Disparities 
fied the racially diverse populations of Bolivians, Colombians, Cubans, Brazilians, Mexicans, South Americans, and people from the Middle East and North Africa as Whites. 

Those with the religious labels of Muslim or Islamic also were registered as White. In 

the United States, Creole is a designation for a person of mixed African and European 

heritage. In Mexico, a Creole is a person of Spanish descent. In one New England state, 

persons with Creole written on the death certificates were classified as White, while in 

areas of the South, persons with this designation would be classified as Black. States are 

struggling with whether the classifications are appropriate and meaningful when a single 

category can include great within-group diversity. 

1. HHS should provide leadership to identify how to give states needed flexibility in 

collecting and reporting racial and ethnic subgroup classifications so that they can 

work efficiently with Federal data reporting requirements. 

2. NCHS is urged to conduct methodological research in several key areas: 

a. Determine the degree and scope of racial and ethnic misreporting on death certificates and how multiracial reporting can be facilitated on birth and death statistics. 

b. Identify ways to improve the frequency and accuracy of reporting of race and 

ethnicity for administrative and medical records. 

c. Improve statistical methods and techniques to deal with missing or miscoded data 

on race, ethnicity, socioeconomic position, and place. 

3. HHS is asked to take the lead in identifying and developing statistical methods and 

techniques to simultaneously analyze multiple socioeconomic measures so as to 

overcome problems related to redundancy or multiway correlations across measures (data collinearity). 

RECOMMENDATION 2

Strengthening Data on Race, Ethnicity, and Primary Language 29 
RECOMMENDATION 2

E. Increase Dissemination of Health Statistics and Research Findings 

For agencies and organizations to take steps to reduce health disparities, they need 

access to data on racial, ethnic, and linguistic subpopulations. A key issue in ensuring 

access is determining the best ways to broadly disseminate information resulting from 

studies. Dissemination applies not just to the scientific community but also to decision-makers responsible for planning and providing health care and for developing health 

policy, as well as health advocates committed to changing health outcomes in their 

communities, and those who plan and carry out health promotion and disease prevention interventions, the media, and even the public. Moreover, information that reaches 

policy- and decision-makers several years after it is collected is not current enough; they 

need to know what is happening in the environment at present to make the right policy 

decision or appropriately pursue research questions. HHS has increased its partnerships with minority media to successfully develop chronic disease education and prevention campaigns. HHS’s efforts in this regard could benefit from the development of 

a process or infrastructure whereby information derived from its health statistics and 

funded research and prevention efforts could be rapidly disseminated and translated to 

help in chronic disease prevention in racial, ethnic, and linguistic subpopulations. 

Infrastructure and available funding are needed to ensure that all groups can benefit 

equally from HHS health statistics. As the Subcommittee learned in its hearings, for 

example not all racial, ethnic, or linguistic subgroups across the country routinely use 

or have access to the Internet. Studies consistently have shown that differences in age, 

race and ethnicity, and even geographic location (rural vs. urban) must be considered in 

selecting the best methods for disseminating information to diverse groups. 

1. In conjunction with its largest agencies, NIH and CDC, HHS should continue and 

further develop aggressive public-use data release programs, with appropriate 

confidentiality controls, to promote wider use and analysis of racial and ethnic 

health data that can be used to further improve health care quality and ameliorate 

disparities. This effort should include grant and contract support for data analysis 

and periodic data user conferences that focus on the methodology of using, 

30 Eliminating Health Disparities 
analyzing, and disseminating small datasets on racial, ethnic, and linguistic subpopulations. A reporting system should be established to track progress in meeting 

this goal. 

HHS is urged to consider methods for improving the accessibility of data on 

racial, ethnic, and linguistic subpopulations. These methods, which include CD-ROM 

versions of data or data query systems that can provide area-specific data, can be 

used by community-based organizations, health departments, and local entities to 

further improve the quality of care and reduce or eliminate health disparities for 

these groups. HHS is urged to develop an assessment to determine whether its 

current mechanisms for ensuring accessibility of data, which relies heavily on Internet technology and English (and some limited Spanish), can be enhanced for wider 

distribution to a greater diversity of audiences. Possible enhancements could include 

a variety of dissemination mechanisms (e.g., minority radio stations and newspapers, 

printed copy, community-based agencies who can act as disseminators), and increased availability in other languages. 

RECOMMENDATION 2

Strengthening Data on Race, Ethnicity, and Primary Language 31 
Conclusion

CONCLUSION

As this report has shown, efforts to improve health care and eliminate health disparities in the United States can succeed only when researchers, policy-makers, health care 

professionals, and community groups are equipped with complete and accurate data on 

the differences in health status, access to care, and the provision of services experienced 

by specific subpopulation groups in the United States. 

In the face of the clear costs to the nation of health disparities, the Committee views its 

recommendations as a starting point for productive consultation and discussion in which 

all stakeholders are engaged in determining the best steps forward. Better data and a 

strengthened ability to collect and use the data will move the United States closer to 

documenting, monitoring, and eliminating health disparities. In this way, improving data 

systems will ensure improvements in health status and quality of health care for 

all Americans. 

32 Eliminating Health Disparities 
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and Nutrition Examination Survey. Public Health Rep 111(2):7–10. 1996. 

20. Khan LK, Sobal J, Martorell R. Acculturation, socioeconomic status, and obesity in Mexican 

Americans, Cuban Americans, and Puerto Ricans. Int J Obes Relat Metab Disord 21(2):91–6. 

1997. 

21. Rodriquez RA, Hernandez GT, O’Hare AM, Glidden DV, Perez-Stable EJ. Creatinine levels 

among Mexican Americans, Puerto Ricans, and Cuban Americans in the Hispanic Health and 

Nutrition Examination Survey. Kidney Int 66(6):2368–78. 2004. 

22. Bau I. Testimony presented at: National Committee on Vital and Health Statistics, 

Subcommittee on Populations. The California Endowment, Los Angeles, CA. 2003. 

23. Yu ESH, Liu WT. U.S. national health data on Asian Americans and Pacific Islanders: A 

research agenda for the 1990’s. Am J Public Health 82(12):1645–52. 1992. 

24. Agency for Healthcare Research and Quality (AHRQ). 2004. 

25. National Research Council (NRC). 2004. 

26. Ver Ploeg M, Perrin E. Eliminating health disparities: Measurement and data needs. 

Washington, DC: National Academies Press. 2004. 

27. Nerenz DR, Darling D. Addressing racial and ethnic disparities in the context of Medicaid 

managed care: A six-state demonstration project. In: Final report for Project 250–02–0010. 

Rockville, MD: Bureau of Primary Health Care, HRSA. 2004. 

28. Moy E, Dayton E, Clancy CM. P 376–8. 2005. 

34 Eliminating Health Disparities 
29. Hasnain-Wynia T, Pierce D, Pittman MA. Who, when, and how: The current state of race, 

ethnicity, and primary language data collection in hospitals. New York, NY: Commonwealth 

Fund. 2004. 

30. American Health Insurance Plan. Collection of racial and ethnic data by health plans to 

address disparities. Final Summary Report to the Robert Wood Johnson Foundation 

[online]. 2004. Available from: www.rwjf.org/files/research/080504AHIPFinalSummary.pdf. 

31. Agency for Healthcare Research and Quality (AHRQ). National healthcare disparities 

report. Pub. No. 05–0014. Rockville, MD: ARHQ. 2004. 

32. U.S. Department of Health and Human Services. Healthy People 2010: Understanding and 

improving health. 2d ed. Washington, DC: U.S. Government Printing Office. 2000. 

33. Agency for Healthcare Research and Quality (AHRQ). AHRQ policy on the inclusion of 

priority populations in research. 2003. Available from: http://grants1.nih.gov/grants/guide/noticefiles/NOT-HS-03-010.html. 

34. U.S. Department of Health and Human Services. Healthy People 2010: Understanding and 

improving health. 2d ed. Washington, DC: U.S. Government Printing Office. 2000. 

35. Lurie N, Jung M, Lavizzo-Mourey R. Disparities and quality improvement: Federal policy 

levers. Health Aff 24(2):354–65. 2005. 

36. National Research Council (NRC). Panel on HHS collection of race and ethnic data, 

eliminating health disparities: measurement and data needs. Washington, DC: National 

Academies Press. 2004. 

37. Waksberg J, Levine D, Marker D. Assessment of major federal data sets for analyses of 

Hispanic and Asian or Pacific Islander subgroups and Native Americans. Submitted to ASPE, 

HHS. 2000. Available from: http://aspe.hhs.gov/hsp/minority-db00/task3/index.htm. 

38. Lucas JW, Barr-Anderson DJ, Kington RS. Health status, health insurance, and health care 

utilization patterns of immigrant black men. Am J Public Health 93(10):1740–7. 2003. 

39. Snipp CM. Racial measurement in the American census: Past practices and implications for 

the future. Annu Rev Sociology 29:563–88. 2003. 

40. Zambrana RE, Carter-Pokras O. Health data issues for Hispanics: Implications for public 

health research. J Health Care Poor Underserved 12(1):20–34. 2001. 

41. Borak J, Fiellin M, Chemerynski S. Who is Hispanic? Implications for epidemiologic research 

in the United States. Epidemiology and Society 15(2):240–44. 2004. 

REFERENCES

Strengthening Data on Race, Ethnicity, and Primary Language 35 
REFERENCES

42. Ku L, Matani S. Left out: Immigrants’ access to health care and insurance. Health Aff 

20(1):247–56. 2001. 

43. Ku L, Waidmann T. How race/ethnicity, immigration status, and language affect health 

insurance coverage, access to care and quality of care among the low-income population. 

2003. Available from: www.kff.org/uninsured/kcmu4132report.cfm. 

44. Nerenz DR, Darling D. Addressing racial and ethnic disparities. 2004. 

45. Lurie N, Jung M, Lavizzo-Mourey R. 2005. 

46. Nerenz DR. Health care organizations’ use of race/ethnicity data to address quality 

disparities. Health Aff 24(2):409–17. 2005. 

47. American Health Insurance Plan. 2004. 

48. Nerenz DR. Health care organizations. 2005. 

49. Lurie N, Jung M, Lavizzo-Mourey R. 2005. 

50. American Health Insurance Plan. 2004. 

51. Moy E, Dayton E, Clancy CM. 2005. 

52. Agency for Healthcare Research and Quality (AHRQ). 2004. 

53. Friedman DJ, Cohen BB, Averbach AR, Norton JM. Race/ethnicity and OMB Directive 15: 

Implications for state public health practice. Am J Public Health 90(11):1714–9. 2000. 

54. Laws MB, Heckscher RA. Racial and ethnic identification practices in public health data 

systems in New England. Public Health Rep 117(1):50–61. 2002. 

55. Friedman DJ, Cohen BB, Averbach AR, Norton JM. 2002. 

56. Ibid. 

57. Waksberg J, Levine D, Marker D. 2000. 

58. U.S. Bureau of the Census. Meeting 21st century demographic data needs—Implementing 

the American Community Survey: Report 10: comparing selected physical and financial 

characteristics of housing with Census 2000. Washington, DC: U.S. Department of 

Commerce, Economics and Statistics Administration. 2004. 

59. Ibid. 

36 Eliminating Health Disparities 
60. National Research Council (NRC). 2004. 

61. Laskey SL, Williams J, Pierre-Louis J, O’Riordan M, Matthews A, Robin NH. Attitudes of 

African American premedical students toward genetic testing and screening. Genetics and 

Medicine 5(1):49–54. 2003. 

62. Bau I. Testimony presented at: National Committee on Vital and Health Statistics, 

Subcommittee on Populations. Los Angeles, CA. 2003. 

63. Yu ESH, Liu WT. 1992. 

64. Halfon N, Hochstein M. 2002. 

65. Lynch JW, Kaplan GA, Salonen JT. Why do poor people behave poorly? Variation in adult 

health behaviours and psychosocial characteristics by stages of the socioeconomic lifecourse. 

Soc Sci Med 44(6):809–19. 1997. 

66. Karlamangla AS, Singer BH, Williams DR, Schwartz JE, Matthews KA, Kiefe CI, et al. Impact 

of socioeconomic status on longitudinal accumulation of cardiovascular risk in young adults: 

The CARDIA study (USA). Soc Sci Med 60(5):999–1015. 2005. 

67. Ibid. 

68. Lurie N, Jung M, Lavizzo-Mourey R. 2005. 

69. Ibid. 

70. Sullivan Commission Missing person: Minorities in the health professions. Battle Creek (MI): 

WK Kellogg Foundation. 2004. 

71. Gostin LO, Hodge JG Balancing individual privacy and communal uses of health information. 

Available from: www.cdc.gov/nchs/otheract/Ph.D.sc/presenters/gostin.htm. 

72. Parker JD, Schenker N, Ingram DD, Weed JA, Heck KE, Madans JE. Bridging between two 

standards for collecting information on race and ethnicity: An application to Census 2000 

and vital rates. Public Health Rep 119(2):192–205. 2004. 

73. Amaro H, Zambrana RE. Criollo, mestizo, mulatto, latinegro, indigena, white, or black? The 

U.S. Hispanic/Latino population and multiple responses in the 2000 Census. Am J Public 

Health 90(11):1724–27. 2000. 

74. Snipp CM. 2003. 

75. Mays VM, Ponce NA, Washington DL, Cochran SD. Classification of race and ethnicity: 

Implications for public health. Annu Rev Public Health 24:83–110. 2003. 

REFERENCES

Strengthening Data on Race, Ethnicity, and Primary Language 37 
REFERENCES

76. Zambrana RE, Carter-Pokras O. 2001. 

77. Laws MB, Heckscher RA. 2002. 

38 Eliminating Health Disparities 
AppendiCes 

APPENDIX A: ONLINE RESOURCES AVAILABLE 

FROM THE NCVHS 

NCVHS Letters and Reports Recommending Strategies for 

Increasing the Quantity and Quality of Data on Racial, Ethnic, 

and Linguistic Subpopulations in the United States and U.S. 

Territories 

z August 23, 2004, Letter to the Secretary on Recommendations on PopulationsBased Data Collection. www.ncvhs.hhs.gov/040823lt.htm 

z September 26, 2003, Letter to the Secretary on Recommendations for Targeted 

Data Collection. www.ncvhs.hhs.gov/030926lt.htm 

z September 26, 2003, Letter to the Secretary on Collection of Racial and Ethnic 

Data by Health Plans. www.ncvhs.hhs.gov/030926ltb.htm 

z March 27, 2003, Letter to the Secretary on Populations-based Data for Racial 

and Ethnic Minorities. www.ncvhs.hhs.gov/030327lt.htm 

z October 19, 2001, Letter to CMS on Racial and Ethnic Data Collection. 

ncvhs.hhs.gov/011019lt.htm 

z July 6, 2001, Recommendations to HCFA on SCHIP Data Collection. 

www.ncvhs.hhs.gov/011019lt.htm 

z March 14, 2001, Letter to Katherine Wallman, Chief Statistician, Office of 

Management and Budget regarding Provisional Guidance on the Implementation 

of the 1997 Standards for Federal Data on Race and Ethnicity (December 15, 2000). 

www.ncvhs.hhs.gov/010314lt.htm 

z December 1999 Report on Medicaid Managed Care Data Collection and Reporting. 

www.ncvhs.hhs.gov/managedcare.pdf 

z December 1999 Report on Health Data Needs of the Pacific Insular Areas, Puerto 

Rico, and the U.S. Virgin Islands. www.ncvhs.hhs.gov/9912islandreport.pdf 

APPENDIX A

Strengthening Data on Race, Ethnicity, and Primary Language 39 
APPENDIX A

Other Resources Available on the NCVHS Web site 

Agendas, Transcripts, and Summaries of Meetings and Hearings held by the 

Subcommittee on Populations 

z June 27, 2001, Subcommittee on Populations Breakout Session During Full Committee Meeting, Mr. Roderick Harrison, Joint Center for Political and Economic Studies. Discussion of Implementation of the Collection of Data on Race and Ethnicity, 

Washington, DC. www.ncvhs.hhs.gov/010627a3.htm 

z August 15, 2001, Meeting on Future Directions for Work in the Implementation of 

OMB Standards for the Collection of Data on Race and Ethnicity, Rosemont, Illinois. 

www.ncvhs.dhhs.gov/010815ag.htm 

z February 11-12, 2002, Hearing on Measurement of Health Disparities in Racial and 

Ethnic Groups in Federal Surveys, Washington, DC. www.ncvhs.hhs.gov/020211ag.htm 

z February 26-27, 2002, Subcommittee on Populations Breakout Session During Full 

Committee Meeting, Review of February 11-12, Hearing on Measurements of Health 

Disparities in Racial/Ethnic Groups, Washington, DC. www.ncvhs.hhs.gov/020226a2.htm 

z February 26, 2002, Subcommittee on Populations Workgroup on Quality—Breakout 

Session, Washington, DC. www.ncvhs.hhs.gov/020226a3.htm 

z September 27, 2002, Hearing on Health Data Needs for American Indians, Denver, 

Colorado. www.ncvhs.hhs.gov/020927ag.htm 

z November 8, 2002, Hearing on Health Data Needs for States, Vital Statistics, and 

Geocoding in Eliminating Health Disparities in Racial and Ethnic Subpopulations, 

Philadelphia, Pennsylvania. www.ncvhs.hhs.gov/021108ag.htm 

z May 22-23, 2003, Hearing on Health Data Needs for Asian, Native Hawaiian and 

Other Pacific Islander Populations, Los Angeles, California. 

www.ncvhs.hhs.gov/030522ag.htm 

z July 24, 2003, Planning Meeting and Discussion of Small Area/Geographic Area Studies, Washington, DC. www.ncvhs.hhs.gov/030724ag.htm 

40 Eliminating Health Disparities 
z November 13-14, 2003, Hearing on Health Data Needs for Asian, Native Hawaiian 

and Other Pacific Islander Populations, San Francisco, California. 

www.ncvhs.hhs.gov/031113ag.htm 

NOTE: These links take users to the web pages for the hearings or meetings. Additional links to summaries and individual testimonies can be found by clicking on Meeting Minutes and Transcripts. 

Testimony at Hearing on Measurement of Health Disparities in Racial and 

Ethnic Groups in Federal Surveys, Washington, DC, February 11-12, 2002 

z Medical Expenditure Panel Survey: 

• Steve Machlin, AHRQ. www.ncvhs.hhs.gov/020211tr.htm#machlin 

• Marsha Lillie-Blanton, Dr.P.H., Kaiser Family Foundation. www.ncvhs.hhs.gov/ 

020211tr.htm#lillie-blanon 

z Consumer Assessment of Health Plans, Judy Sangl, Sc.D., AHRQ. www.ncvhs.hhs. 

gov/020211tr.htm#sangl 

z Consumer Assessment of Health Plans User, James Moser, Ph.D., Brens Group of 

KPMG Consulting. www.ncvhs.hhs.gov/020211tr.htm#moser 

z Medicare Current Beneficiary Survey, Dan Waldo, M.A. Centers for Medicare & 

Medicaid Services. www.ncvhs.hhs.gov/020211tr.htm#medicare 

z Medicare Current Beneficiary Survey, Joan DaVanzo, MSW, Ph.D., Lewin Group. 

www.ncvhs.hhs.gov/020211tr.htm#medicarebeneficiary 

z Policy Perspectives, Carolyn Clancy, M.D., AHRQ. www.ncvhs.hhs.gov/020211tr. 

htm#policyperspectives 

z Socioeconomic Status, Patricia O’Campo, Ph.D., Johns Hopkins University. 

www.ncvhs.hhs.gov/020211tr.htm#socioeconomic 

z National Survey of Family Growth, Joyce Abma, Ph.D., NCHS. www.ncvhs.hhs.gov/ 

020211tr.htm#growth 

z Behavioral Risk Factor Surveillance, Peter Mariolis, Ph.D., CDC. www.ncvhs.hhs. 

gov/020211tr.htm#behavioral 

APPENDIX A

Strengthening Data on Race, Ethnicity, and Primary Language 41 
APPENDIX A

Testimony at Hearing on Health Data Needs for States, Vital Statistics, and 

Geocoding in Eliminating Health Disparities in Racial and Ethnic Subpopulations, Philadelphia, Pennsylvania, November 8, 2002 

z Massachusetts Department of Health, Bruce Cohen, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#massachusetts 

z California Department of Health, Peter Abbott, M.D. 

www.ncvhs.hhs.gov/021108tr.htm#california 

z Hawaii Department of Health, Alvin Onaka, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#hawaii 

z California Department of Health, Dr. Jane McKendry. 

www.ncvhs.hhs.gov/021108tr.htm#california2 

z Vital Statistics Re-engineering Project, Delton Atkinson, MSPH, MSP. 

www.ncvhs.hhs.gov/021108tr.htm#reengineering 

z Healthy Women: State Trends in Health and Mortality, Kate Brett, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#healthywomen 

z National Women’s and Minority Indicators Database Project, Alfred Meltzer. 

www.ncvhs.hhs.gov/021108tr.htm#database 

z Geocoding State Data and Establishing Collaborations, Nancy Krieger, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#geocoding 

z Alabama Department of Public Health, Dorothy Harshberger. 

www.ncvhs.hhs.gov/021108tr.htm#alabama 

z Tennessee Department of Health, Richard Urbano, Ph.D. 

www.ncvhs.hhs.gov/021108tr.htm#tennessee 

z Commentary, Daniel Friedman, Ph.D. www.ncvhs.hhs.gov/021108tr.htm#commentary 

42 Eliminating Health Disparities 
Testimony at the Hearing on Health Data Needs for Asian, Native Hawaiian, 

and Other Pacific Islander Populations, May 22-23, 2003, Los Angeles, 

California 

z Hawaiian Matters: Data Considerations for Native Hawaiian and Pacific Islander 

Populations, Nolan Malone, Ph.D., PACE Kamehameha School. 

www.ncvhs.hhs.gov/030522p1.pdf 

z Comments on AAPI Data to Subcommittee on Populations, Paul Ong Ph.D., Ralph 

and Goldy Lewis Center for Regional Policy Studies, UCLA. 

www.ncvhs.hhs.gov/030522p2.pdf 

z Use of Census Data in Health Planning and Community Development in Support of 

Community Services, Bong Vergara MA, MSW, and Melany Dela Cruz, Census Information Center. www.ncvhs.hhs.gov/030522p3.pdf 

z Ethnicity, Culture, and Pharmacogenetics, Keh-Ming Lin M.D., Harbor-UCLA Medical Center. www.ncvhs.hhs.gov/030522p4.pdf 

z Small AA/NHOPI Populations, Marjorie Kagawa-Singer Ph.D., RN, UCLA School of 

Public Health and Asian American Studies Center. www.ncvhs.hhs.gov/030523p1.pdf 

Testimony at the Hearing on Health Data Needs for Asian, Native Hawaiian, 

and Other Pacific Islander Populations, November 13-14, 2003, San Francisco, California 

z Overview of Pacific Island Health Data Issues, Christina Perez M.P.H., Regional Minority Health Coordinator, Region X. www.ncvhs.hhs.gov/031113tr.htm#perez 

z Health Data Needs for the Elimination of Health Disparities for Asian, Native Hawaiian, and Other Pacific Islander Populations. Ho Tran, M.D., Asian and Pacific Islander 

American Health Forum. www.ncvhs.hhs.gov/031113p1a.pdf and 

www.ncvhs.hhs.gov/031113tr.htm#tran 

• Policy Brief: Data Gaps and Health Disparities for Asians and Pacific Islanders 

Highlighted in the Healthy People 2010 Initiative. Ho Tran, M.D., Asian and Pacific Islander American Health Forum. www.ncvhs.hhs.gov/031113p1b.pdf 

APPENDIX A

Strengthening Data on Race, Ethnicity, and Primary Language 43 
APPENDIX A

z Accessing Census Data on Asians, Native Hawaiians, and Other Pacific Islander 

Populations: The Role of Census Information Centers. Gem Daus, M.P.H., Asian and 

Pacific Islander American Health Forum. www.ncvhs.hhs.gov/031113p2a.pdf and 

www.ncvhs.hhs.gov/031113tr.htm#daus 

• Census Data: Top 10 States, Population by Asian (Alone) Ethnicity. 

www.ncvhs.hhs.gov/031113p2b.pdf 

z ANHOPI Measurement and Classification Issues, Elena Yu, Ph.D., Johns Hopkins 

University. www.ncvhs.hhs.gov/031113tr.htm#yu 

z Healthcare Quality Indicators for ANHOPI Populations, Ellen Wu, M.P.H., 

California Pan Ethnic Health Network. www.ncvhs.hhs.gov/031114tr.htm#wu 

z Asian Americans and Cancer, Scarlett Lin Gomez, Ph.D., Northern California 

Cancer Center. www.ncvhs.hhs.gov/031114tr.htm#gomez 

z Data Challenges in the Western Pacific, Greg Dever, M.D., Palau Ministry of Health. 

www.ncvhs.hhs.gov/031114p1.pdf and www.ncvhs.hhs.gov/031114tr.htm#devor 

z Data Challenges in Hawaii, Catherine Sorenson, Ph.D., Hawaii Department of 

Health. www.ncvhs.hhs.gov/031114tr.htm#sorenson 

z Health Disparities Data Issues: Listening to the Voices. Carol Murray, Ph.D., 

University of Hawaii at Manoa. www.ncvhs.hhs.gov/031114p2.pdf and 

www.ncvhs.hhs.gov/031114tr.htm#murry 

44 Eliminating Health Disparities 
APPENDIX B: HEARINGS HELD BY THE NCVHS

SUBCOMMITTEE ON POPULATIONS, 2001–2003

February 2002 Hearing on Data Collection in 

Federal Surveys and Studies 

National Committee on Vital and Health Statistics 

Subcommittee on Populations 

Hearing on the Collection of Data on Race and Ethnicity in Federal 

Population-Based Data 

FEBRUARY 11-12, 2002 

Department of Health Human Services 

Hubert Humphrey Building, Room 800 

200 Independence Avenue, SW 

Washington, DC 20020 

Hearing Questions 

1. What contributions can be made to advance our knowledge of disparities in health 

and health care using your survey data? 

2. Do we need additional variables beyond race and ethnicity to begin to document 

health and health care disparities among racial and ethnic groups? For example, how 

important is confounding and interactions among the variables as we try and assess 

disparities? Have such analyses been conducted in your survey data? 

3. How can we best measure ethnic identity? 

4. Is it feasible to link the various datasets to other contextual data to really further 

understand some of the causes and consequences of disparities? For example, can 

these datasets be linked to tell us things such as physician supply, neighborhood 

characteristics? 

45 APPENDIX B 

Strengthening Data on Race, Ethnicity, and Primary Language 
46 APPENDIX B 

5. Is there an interest in identifying the cost of health disparities? Can some or all of 

these costs in some way be documented? For example, if health disparities continue, 

what is the cost to us, both as a society, as well as in terms of a cost in terms of the 

budget? 

6. Are survey instruments translated and interviews conducted in various languages, 

and if so, what are those languages? If not, do they plan to do this? Does the survey 

ask questions regarding language proficiency? 

7. Does the survey deal with the issue of undercount, and how does it handle it? Does 

the survey cover particular ethnic and racial groups in its current sampling frame? If 

so, what is the process? 

8. What guidance are you providing to analysts on how to use multirace responses? 

9. What kind of training are you providing to minority researchers so they can access 

and use your data? 

AGENDA 

MONDAY, FEBRUARY 11 

9:00-9:30 a.m. Call to Order, Introductions, Vickie M. Mays, Ph.D., MSPH, 

and Opening Remarks Chair 

Measurement of Health James Scanlon, Director Div. 

Disparities in Racial and Ethnic Data Policy, DHHS 

Groups in Federal Surveys 

9:30-9:50 a.m. Medical Expenditure Steve Machlin, AHRQ

 Panel Survey 

Eliminating Health Disparities 
9:55-10:15 a.m. Medical Expenditure Marsha Lillie-Blanton, Dr.P.H., 

Panel Survey Use Kaiser Family Foundation 

10:15-10:35 a.m. Questions and Answers (MEPS) 

10:35-10:45 a.m. Break 

10:45-11:05 a.m. Consumer Assessment of Judy Sangl, Sc.D., AHRQ 

Health Plans Chuck Darby, M.A., AHRQ 

11:10-11:30 a.m. Consumer Assessment of James Moser, Ph.D., Brens 

Health Plans User Group of KPMG Consulting Inc. 

11:30-11:50 a.m. Questions and Answers

 (CAHPS) 

11:50-12:45 p.m. Lunch 

12:45-1:00 p.m. Remarks Vickie M. Mays, Ph.D., 

MSPH, Chair 

1:00-1:20 p.m. Medicare Current Dan Waldo, M.A., CMS 

Beneficiary Survey (MCBS) 

1:25-1:45 p.m. Medicare Current Joan DaVanzo, M.S.W., Ph.D., 

Beneficiary Survey User Lewin Group 

1:45-2:05 p.m. Questions and Answers (MCBS) 

2:10-2:40 p.m. Policy Perspectives Carolyn Clancy, M.D., AHRQ 

2:40-3:00 p.m. Discussion 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 47 
APPENDIX B

3:00-3:10 p.m. Break 

3:10-3:40 p.m. Socioeconomic Status Patricia O’Campo, Ph.D., 

Johns Hopkins University 

3:40-4:00 p.m. Questions and Answers SES 

4:05-4:25 p.m. National Survey of 

Family Growth 

Joyce Abma, Ph.D., NCHS 

4:25-4:45 p.m. Behavioral Risk Factor 

 Surveillance Survey 

Peter Mariolis, Ph.D., CDC

4:45-5:05 p.m. Questions and Answers

 (NSFG/BRFSS) 

5:05-5:15 p.m. Wrap Up Chair 

5:15 p.m. Adjourn 

TUESDAY, FEBRUARY 12 

8:30-8:45 a.m. Call to Order and 

Introductions 

Vickie M. Mays, Ph.D., M.S.P.H., 

Chair 

8:45-9:05 a.m. National Health 

Interview Survey 

Jacqueline B. Lucas, M.P.H., 

NCHS 

9:10-9:30 a.m. National Health 

Interview Survey User 

Richard Hummer, Ph.D., 

University of Texas 

48 Eliminating Health Disparities 
9:30-9:50 a.m. Questions and Answers (NHIS) 

9:55-10:15 a.m. National Health and Nutrition Lester R. Curtin, Ph.D., NCHS 

Examination Survey 

10:15-10:35 a.m. National Health and Nutrition Christopher Sempos, Ph.D., 

Examination Survey User State University of 

New York at Buffalo 

10:35-10:55 a.m. Questions and Answers

 (NHANES) 

10:55-11:05 a.m. Break 

11:05-11:35 a.m. Multiple Race Data Use Tom Smith, Ph.D., NORC 

University of Chicago 

11:35-11:50 p.m. Questions and Answers

 Multiple Race 

11:50-12:20 p.m. Policy Discussion Raynard Kington, M.D., Ph.D., 

OBSSR/ NIAAA/ NIH 

12:20-12:35 p.m. Discussion 

12:35-12:45 p.m. Adjourn 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 49 
50 APPENDIX B

Additional Hearings and Breakout Sessions 

Used to Develop the Report 

National Committee on Vital and Health Statistics 

Subcommittee on Populations 

Break-out Session at NCVHS Full Committee Hearing 

JUNE 27, 2001 

Renaissance Hotel 

999 9th Street, NW 

Washington, DC 20001 

AGENDA 

2:00 p.m. Introductions 

 Review Agenda 

Vickie M. Mays, Ph.D., M.S.P.H.

2:15 p.m. Discussion of Implementation 

the Collection of Race 

and Ethnicity 

Mr. Roderick Harrison, Joint 

Center for Political and 

Economic Studies 

2:45 p.m. Future Directions for Further 

Work in the Area of Data on 

Race and Ethnicity 

Subcommittee 

Eliminating Health Disparities 
National Committee on Vital and Health Statistics 

Subcommittee on Populations 

Hearing on Health Data Needs for American Indians 

SEPTEMBER 27, 2002 

Adams Mark Hotel 

1550 Court Place 

Denver, CO 80202-5107 

Hearing Questions 

1. Please describe barriers to data collection, analysis, and disease surveillance for 

eliminating health disparities in American Indians and Alaska Natives. 

2. Please describe strategies that DHHS could use to remove those barriers. 

3. Please describe strategies that DHHS could use to increase the capacity for American Indian/Alaska Native researchers and organizations to conduct health disparities 

research, demonstrations, and evaluations. 

4. Please describe the strategies that DHHS could use to support relationships 

between tribal colleges and universities, academic researchers and State and local 

health entities. 

5. Please describe the accountability mechanisms that DHHS could institute to ensure 

the development and maturation of these partnerships. 

6. Please describe strategies that DHHS could use to support partnerships with American Indian/Alaska Native communities to improve safety and quality in health care. 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 51 
52 APPENDIX B 

AGENDA 

9:00 a.m. Call to Order and 

Introductions 

9:15 a.m. Background of Subcommittee 

and Overview of Meeting 

9:30 a.m. Opening Remarks: Eliminating 

Health Disparities in 

 Indian Country 

10:00 a.m. Identification of American 

Indian Alaska Native Health 

Disparity Issues 

11:15 a.m. Break 

11:30 a.m. Discussion 

Questions and Answers 

12:00 noon Lunch 

1:00 p.m. Health Disparity Issues from 

the Tribal Perspective 

Vickie Mays, Ph.D., Chair 

Chair 

Yvette Joseph Fox 

National Indian Health Board

Nashville Area Representative 

Jennie Joe, Ph.D., Univ. of 

Arizona 

Dorrie Rhoades, M.D., 

Univ. of Washington 

Sally Smith Bristol Bay Area 

Health Corp 

(Transitions Report) 

James Oliver, NWPAIHB 

Rick Havertake, Intertribal 

Council of Michigan 

Eliminating Health Disparities 
2:30 p.m. Urban/Rural Indian Issues Beverly Russell, National Council 

of Urban Indian Health 

Sally Smith, Tribal SelfGovernance Advisory 

Committee Rep. 

3:00 p.m. Break 

3:15 p.m. Discussion 

Questions and Answers 

3:45 p.m. Summary and Next Steps 

4:00 p.m. Adjourn 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 53 
APPENDIX B

National Committee on Vital and Health Statistics 

Subcommittee on Populations 

Hearing on Health Data Needs for States, Vital Statistics, and Geocoding in 

Eliminating Health Disparities in Racial and Ethnic Subpopulations 

NOVEMBER 8, 2002 

The Public Ledger Building 

150 S. Independence Mall West, Conference Room 415 

Philadelphia, PA 19106 

Hearing Questions 

1. To begin, would you please very briefly discuss the demographic composition of 

the State in terms of racial and ethnic subgroups and where these groups are 

concentrated? 

2. In addition to data on racial identities, does your state routinely collect detailed 

data on ethnicity and national origin in its ongoing surveillance datasets? Are these 

data collected only for Hispanics or for other groups as well? On what datasets are 

these data collected? Please provide examples. 

3. Will all ongoing datasets maintained by your State health department use the same 

race/ethnicity standards for data collection, tabulation, and reporting? If so, is this 

standard based on the 2000 Census standard, the OMB preferred standard, or some 

combination of both? 

4. Do you believe that there is a significant problem of misclassification into racial 

and ethnic categories in the state? For what datasets? For what racial and ethnic 

groups? What steps, such as possibly partnerships with advocacy groups, are in 

place for studying the issue and for making corrections? 

5. Does the state plan to adopt the race and ethnicity items on the new NCHS standard birth certificate? 

54 Eliminating Health Disparities 
6. Do the race and ethnic guidelines from OMB have adequate utility for the state or 

does the state frequently find the need to collect information using other or expanded categories? 

7. Are there any inconsistencies in ethnic and racial data collection methodologies 

between various instruments that the State uses to collect data either solely for 

state purposes or to provide to the Federal government? 

8. Does the state have adequate guidance to do the bridging and tabulation from the 

older standards on the collection of race to the newer standards of the collection 

of race? 

9. Does the state collect racial and ethnic data in their Medicaid managed care system? 

10. If there is a statewide hospital discharge data system, and if so, does it collect racial 

and ethnic data? 

11. Are racial and ethnic data routinely reported in the state’s health-related publications and reports? 

AGENDA 

8:30 a.m. Call to Order, Introductions, 

and Overview of Meeting 

Vickie Mays, Ph.D., M.S.P.H., 

Chair 

8:35 a.m. Background of Subcommittee Vickie Mays, Ph.D., M.S.P.H., 

Chair 

8:45 a.m. Welcoming Remarks Dalton Paxman, Ph.D., 

Regional Health Administrator, 

Region III, Dept. of Health and 

Human Services 

55 APPENDIX B 

Strengthening Data on Race, Ethnicity, and Primary Language 
APPENDIX B

8:50 a.m. Massachusetts Department 

of Health 

Bruce Cohen, Ph.D., 

Director, Division of Research 

and Epidemiology 

9:15 a.m. California Department of 

Health Services 

Jane McKendry, Chief, 

Vital Statistics Section 

Peter Abbott, M.D., 

Acting Deputy Director 

Health Information and 

Strategic Planning 

9:30 a.m. Hawaii Department of Health Alvin Onaka, Ph.D., Office of 

Health Status Monitoring 

10:10 a.m. Discussion 

10:40 a.m. Break 

11:05 a.m. Vital Statistics 

Re-engineering Project 

Delton Atkinson, MSPH, MSP 

Project Director, National 

Center for Health Statistics 

11:45 a.m. Discussion 

12:00 noon Lunch 

1:00 p.m. Healthy Women: State Trends 

in Health and Mortality 

Kate Brett, Ph.D., Office of 

Analysis and Epidemiology, 

National Center for 

Health Statistics 

56 Eliminating Health Disparities 
1:25 p.m. National Women’s and 

Minority Indicators 

Database Project 

Colleen Goodman 

Alfred Meltzer, 

Quality Resource Systems, Inc. 

1:55 p.m. Discussion 

2:10 p.m. 

2:35 p.m. 

Alabama Department of 

Public Health 

Tennessee Department 

of Health 

Dorothy Harshberger, 

State Registrar 

Richard Urbano, Ph.D., 

Assistant Commissioner, 

Bureau of Health Informatics 

3:00 p.m. Discussion 

3:20 p.m. Break 

3:40 p.m. Geocoding State Data and 

Establishing Collaborations 

Nancy Krieger, Ph.D., Associate 

Professor, Dept. of Health and 

Social Behavior, Harvard School 

of Public Health 

4:05 p.m. Discussion 

4:20 p.m. Commentary Daniel Friedman, Ph.D., 

Assistant Commissioner Bureau 

of Health Statistics, Research and 

Evaluation, Massachusetts Dept. 

of Public Health 

4:30 p.m. Summary and Next Steps Chair/Subcommittee 

5:00 p.m. Adjourn 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 57 
APPENDIX B

National Committee on Vital and Health Statistics 

Subcommittee on Populations 

Hearing on Health Data Needs for Asian, Native Hawaiian, and Other Pacific 

Islander Populations 

MAY 22–23, 2003 

J.D. Morgan Athletics Center 

The Press Room 

UCLA Athletics Bldg 

Hearing Questions 

1. For Pacific Island populations, what techniques are used to collect data on race and 

ethnicity? How does language, population size, or population geography impact the 

ability to gather data on the health status, health behaviors, and health experiences 

of these populations? What recommendations could you make to DHHS for addressing these issues? 

2. Do you believe that there is a significant problem of misclassification of racial and 

ethnic categories in existing datasets? For which datasets? For which categories? 

What steps, such as possible partnerships with advocacy groups, are in place for 

studying the issue and making corrections? 

3. Are data collected on ethnicity, language spoken, and national origin in ongoing 

surveillance datasets? On what datasets are these data collected? Please provide 

examples. 

4. What barriers exist to data collection, analysis, and disease surveillance for eliminating health disparities in ANHOPI populations? Describe strategies that DHHS could 

use to remove those barriers. 

58 Eliminating Health Disparities 
5. Are data collected on ethnicity, language spoken, and national origin in ongoing 

surveillance datasets? On what datasets are these data collected? Please provide 

examples. What types of health data would you recommend that DHHS collect? 

6. Current data collection methods emphasize the protection of the privacy and confidentiality of survey respondents and require a certain number of responses to report data. Given these considerations as applied to small populations, what number 

of responses would you feel are too low to report? 

7. What are some strategies that DHHS could use to increase the capacity for ANHOPI researchers and organizations to conduct health disparities research, demonstrations, and evaluations? 

8. Please describe the strategies that DHHS could use to support relationships among 

universities, academic researchers, communities, and State and local health entities. 

9. Are there any accountability mechanisms you recommend that DHHS could institute 

to ensure the development and maturation of these partnership relationships? 

10. How could DHHS support partnerships with ANHOPI communities to improve 

safety and quality in health care? 

11. Do the race and ethnic guidelines from OMB have adequate utility for the ANHOPI 

populations or is there a need to collect information using other or expanded categories? 

AGENDA 

THURSDAY, MAY 22 

9:00–9:15 a.m. Call to Order and Vickie Mays, Ph.D., M.S.P.H., 

Introductions Chair 

Review of Agenda 

 Meeting Process 

59 APPENDIX B 

Strengthening Data on Race, Ethnicity, and Primary Language 
APPENDIX B

9:15–9:35 a.m. Diversity of the Asian, 

Native Hawaiian, and Other 

Pacific Islander Populations 

Dennis Arguelles, M.A., 

Assistant Director, UCLA Asian 

American Studies Center 

9:35–9:50 a.m. Questions and Discussion 

9:50–10:20 a.m. Native Hawaiians and Mainland 

Hawaiians 

Nolan Malone, Ph.D. 

PACE Kamehameha School 

9:45–10:05 a.m. Questions and Discussion 

10:05–10:35 a.m. Data Issues in Asians, 

Native Hawaiians, and Other 

Pacific Islanders 

Paul Ong, Ph.D., 

UCLA, Director of the Ralph 

and Lewis Goldy Center 

10:35–10:55 a.m. Questions and Discussion 

10:55–11:40 a.m. Use of Census Data and Health Melany Dela Cruz 

Planning and Contextual Asian American Studies Center 

Community Development in UCLA, Census Information 

Support of Community Services Coordinator 

Bong Vergara, M.A., M.S.W., 

Special Services Group 

PowerPoint Presentation 

11:40–12:00 noon Questions and Discussion 

12:00–1:00 p.m. Lunch 

1:15–2:00 p.m. Pharmacologic Differences in 

Asian Populations 

Keh-Ming Lin, M.D., Director, 

Center on the Psychobiology of 

Ethnicity, Harbor-UCLA 

Medical Center 

60 Eliminating Health Disparities 
2:00–2:20 p.m. Questions and Discussion 

2:20–2:40 p.m. Break 

2:40–3:25 p.m. Language and Translation Ninez Ponce, Ph.D., UCLA 

Aggregation and Disaggregation School of Public Health and 

Co-Principal Investigator of the 

California Health Interview 

Survey 

3:25–4:00 p.m. Questions and Discussion 

4:45–5:00 p.m. General Discussion and Vickie M. Mays, Ph.D., M.S.P.H., 

Wrap Up Chair 

5:00 p.m. Adjourn 

FRIDAY, MAY 23 

8:50–9:00 a.m. Call to Order, Welcome, Vickie M. Mays, Ph.D., M.S.P.H., 

 Introductions, and Chair 

Summary of Previous Day 

9:00–9:30 a.m. Southeast Asians: Where’s Naleem Gupta, M.P.H., M.S.W., 

the Data and Why It is Needed Valley Care Community 

Consortium 

Pardeepta Upadhyah, 

Southeast Asian Network 

9:30–9:45 a.m. Questions and Discussion 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 61 
APPENDIX B

9:45–10:35 a.m. Small and Geographic Marjorie Kagawa-Singer, Ph.D., 

Populations Data Issues Hmong, R.N., M.N., UCLA School of 

Cambodian, and Vietnamese Public Health 

10:35–11:00 a.m. Questions and Discussion 

11:00–12:00 noon CRENCO/Policy Perspectives 

and Data Needs for Health 

Planning, Health Services 

Ignatius Bau, California 

Endowment 

12:00–12:20 p.m. Questions and Discussion 

12:30–1:30 p.m. Lunch 

1:30–2:30 p.m. Other Pacific Islanders 

Mainland and Non-Mainland 

Mae Cruz Guenther, R.N., 

Guam Communications 

Network (Chamorro) 

Kaiwi Victor Pang and 

Ka’ala Jane Pang, Native 

Hawaiian Civic Club (Native 

Hawaiians and Marshallese) 

2:30–4:00 p.m. Other Pacific Islanders (Cont.) Sala S. Mataalii, R.N., Chairman, 

Samoan National Nurses 

Association 

June Cruz Millington, Guam 

Communications Network 

4:00–4:15 p.m. Questions and Discussion 

4:15 p.m. Wrap Up and Adjourn 

62 Eliminating Health Disparities 
National Committee on Vital and Health Statistics 

Subcommittee on Populations 

Hearing on Health Data Needs for Asian, Native Hawaiian, and Other Pacific 

Islander Populations 

NOVEMBER 13–14, 2003 

The Palace Hotel 

2 New Montgomery Street 

San Francisco, CA 94105 

Hearing Questions 

1. For Pacific Island populations, what techniques are used to collect data on race and 

ethnicity? How does language, population size, or population geography impact the 

ability to gather data on the health status, health behaviors, and health experiences 

of these populations? What recommendations could you make to DHHS for addressing these issues? 

2. Do you believe that there is a significant problem of misclassification of racial and 

ethnic categories in existing datasets? For which datasets? For which categories? 

What steps, such as possibly partnerships with advocacy groups, are in place for 

studying the issue and making corrections? 

3. Are data collected on ethnicity, language spoken, and national origin in ongoing 

surveillance datasets? On what datasets are these data collected? Please provide 

examples. What types of health data would you recommend that DHHS collect? 

4. What barriers exist to data collection, analysis and disease surveillance for eliminating health disparities in ANHOPI populations? Describe strategies that DHHS could 

use to remove those barriers. 

5. Current data collection methods emphasize the protection of the privacy and confidentiality of survey respondents and require a certain number of responses to 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 63 
64 APPENDIX B 

report data. Given these considerations as applied to small populations, what number of responses would you feel are too low to report? 

6. What are some strategies that DHHS could use to increase the capacity for ANHOPI researchers and organizations to conduct health disparities research, demonstrations, and evaluations? 

7. Please describe the strategies that DHHS could use to support relationships among 

universities, academic researchers, communities, and state and local health entities. 

8. Are there any accountability mechanisms you recommend that DHHS could institute 

to ensure the development and maturation of these partnership relationships? 

9. How could DHHS support partnerships with ANHOPI communities to improve 

safety and quality in health care? 

10. Do the race and ethnic guidelines from OMB have adequate utility for the ANHOPI 

populations or is there a need to collect information using other or expanded categories? 

AGENDA 

THURSDAY, NOVEMBER 13 

9:00 a.m Welcome and Introductions Vickie Mays, Ph.D., M.S.P.H., 

Chair 

9:05 a.m. Overview of Subcommittee Vickie Mays, Ph.D., M.S.P.H., 

on Populations, NCVHS, Chair 

Purpose for Hearing and 

Review of the Agenda 

Eliminating Health Disparities 
9:20 a.m. A National Perspective on 

ANHOPI Health Data Needs 

Christina Perez M.P.H., 

Regional Minority Health 

Coordinator, Region IX 

9:30 a.m. Overview of Pacific Island 

Health Data Issues 

Christina Perez, M.P.H., 

Regional Minority Health 

Coordinator, Region IX 

9:50 a.m. Break 

10:00 a.m. The Need for Detailed 

ANHOPI for Health Policy 

Ho Tran, M.D., Asian Pacific 

Islander American Health Forum 

Policy Brief 

10:20 a.m. Accessing ANHOPI Data Gem Daus, Census Information 

Center, Asian Pacific Islander 

American Health Forum 

Census Data 

10:40 a.m. Questions and Discussion Members and Staff 

10:50 a.m. Break 

11:00 a.m. ANHOPI Measurement and 

Classification Issues 

Elena Yu, Ph.D., 

The Johns Hopkins University 

12:00 noon Questions and Discussion Members and Staff 

1:00–2:15 p.m. Lunch 

2:15 p.m. Questions and Discussion Members and Staff 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 65 
APPENDIX B

2:45 p.m. Subcommittee Deliberation on Members and Staff

 Testimony 

4:45–5:00 p.m. Adjourn and Closing Comments Chair 

FRIDAY, NOVEMBER 14, 2003 

9:00 a.m. Welcome and Introductions Vickie Mays, Ph.D., M.S.P.H., 

Chair 

9:15 a.m. Healthcare Quality Indicators 

For ANHOPI Populations 

Ellen Wu, California Pan Ethnic 

Health Network 

9:35 a.m. Asian Americans and Cancer Scarlett Lin Gomez, Ph.D., 

Northern California 

Cancer Center 

9:55 a.m. Questions and Discussion 

10:45 a.m. Health Data Needs for 

Pacific Islanders Palau: 

Telephone Conference 

Presentation 

Greg Dever, M.D., Director, 

Bureau of Hospital & 

Clinical Services 

Julie Tellei, Cultural Specialist, 

Palau Ministry of Health 

11:15 a.m. Questions and Discussion 

12:00 p.m. Lunch 

1:00 p.m. Hawaii Catherine Sorenson, Ph.D., 

Hawaii Department of Health 

66 Eliminating Health Disparities 
1:15 p.m. Qualitative Data Issues for 

Native Hawaiians and 

American Samoans 

Carol Murray, Dr. P.H., 

University of Hawaii at Manoa 

Hardy Spoerhr, Executive 

Director, Papa Ola Lokahi 

Gerald Ohta, Hawaii 

Department of Health 

1:45 p.m. Questions and Discussion Members and Staff 

2:15 p.m. Subcommittee Deliberation 

 of Testimony 

Members and Staff

3:30 p.m. Next Steps–Adjourn 

APPENDIX B

Strengthening Data on Race, Ethnicity, and Primary Language 67