Racial and Ethnic Data Issues for Epidemiologic Studies

Olivia Carter-Pokras, Ph.D.University of Maryland School

of Medicine

What is Epidemiology? It is the science of public health or the

study of the distribution and determinants of disease risk in human populations.

Epidemiologists study a diverse range of health conditions as well as the impact that various exposures have on the manifestation of disease.

Epidemiologists come from a variety of backgrounds and influence health from academic, governmental, and private industry positions.

How and Why do Epidemiologists Use Race/Ethnicity?

Study disease and mortality patterns and how they affect racial and ethnic groups differently.

Examine how health risks and behaviors are different between different communities.

Use data to target resources where they’ll have the most impact.

“Race is a social construct (in other words, a social invention that changes as political, economic and historical contexts change), it has real consequences across a wide range of social and economic institutions.”

SOURCE: American Sociological Association. Statement on the ImportanceOf Collecting Data and Doing Social Scientific Research on Race. 2003.

What is Race?

What is Race?

a group, especially of people, with particular similar physical characteristics, who are considered as belonging to the same type, or the fact of belonging to such a group

a group of people who share the same language, history, characteristics

SOURCE: Cambridge Advanced Learner's Dictionary

Medical Dictionary Definitions The On-line Medical Dictionary: The

descendants of a common ancestor; a family, tribe, people, or nation, believed or presumed to belong to the same stock; a lineage; a breed

Dorland’s Medical Dictionary: 1. an ethnic stock, or division of humankind; in a narrower sense, a national or tribal stock; in a still narrower sense, a genealogic line of descent; a class of persons of a common lineage. In genetics, races are considered as populations having different distributions of gene frequencies.  2. a class or breed of animals; a group of individuals having certain characteristics in common, owing to a common inheritance; a subspecies.

“…present-day inequalities between so-called "racial" groups are not consequences of their biological inheritance but products of historical and contemporary social, economic, educational, and political circumstances.”

American Anthropological Association. Statement on “Race”. 1998.

Answer: Census Bureau complies with the Office of Management and Budget's standards for maintaining, collecting, and presenting data on race, which were revised in October 1997. They generally reflect a social definition of race recognized in this country. They do not conform to any biological, anthropological or genetic criteria.

SOURCE: Questions and Answers for Census 2000 Data on Race March 14, 2001. Available at: http://www.census.gov/Press-Release/www/2001/raceqandas.html

Question: How does the Census Bureau define race and ethnicity?

Debunking the Myths: the Standards There is a standard for racial and ethnic

data which is to be used by Federal agencies

“NIH Policy On Reporting Race And Ethnicity Data: Subjects In Clinical Research” requires the Federal standard for extramural research

The categories used by the Census are NOT the Federal standards, but do comply with the Federal standards

1997 Federal Standards (Self-Identification) Race

American Indian or Alaska Native Asian Black or African American Native Hawaiian or Other Pacific Islander White

Ethnicity Hispanic or Latino Not Hispanic or Latino

Census 2000 Question on Ethnicity

Are you Spanish/Hispanic/Latino? No, not Spanish/Hispanic/Latino Yes, Mexican, Mexican Am, Chicano Yes, Puerto Rican Yes, Cuban Yes, other Spanish/Hispanic/Latino—

Print group

Census 2000 Race Question What is your race? Mark one or more races to indicate

what you consider yourself to be. White Black, African Am., or Negro American Indian or Alaska Native—Print name of

enrolled or principal tribe. Asian Indian --Native Hawaiian Chinese --Guamanian or Chamorro Filipino --Samoan Japanese --Other Pacific Islander—

print race Korean Vietnamese Other Asian—Print race Some other race—Print race

1997 Federal Standards (May be Used for Observer Identification)

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

Islander White

Debunking the Myths: Legal Issues No general requirement to collect

racial/ethnic data There is no Federal law which prohibits

the collection of racial/ethnic data The vast majority of states do not have

laws which prohibit health insurers or health plans from collecting racial/ethnic data at the time of enrollment or eligibility determination

“Hispanics are asked to indicate their origin in the question on Hispanic origin, not in the question on race, because in the federal statistical system ethnic origin is considered to be a separate concept from race.”

SOURCE: Bureau of the Census. Racial and Ethnic Classifications Used in Census 2000 and Beyond. Available at: http://www.census.gov/population/www/socdemo/race/racefactcb.html

Multiple Options for Data Presentation

Combine all who report multiple race Use a follow-up question on “best”

or “preferred“ to recode those who report more than one race

Present data for most commonly reported multiple race combinations

Ignore those who report more than one race

1 American Indian or Alaska Native2 Asian3 Black or African American4 Native Hawaiian or Other Pacific Islander5 White6 American Indian or Alaska Native and White7 Asian and White8 Black or African American and White9 American Indian or Alaska Native and Black or African

American10 > 1 percent: Fill in if applicable_____________________11 > 1 percent: Fill in if applicable______________________12 Balance of individuals reporting more than one race13 Total

Guidance on Aggregation and Allocation of Data on Race for Use in  Civil Rights Monitoring and Enforcement

SOURCE: OMB BULLETIN NO. 00-02; March 9, 2000

Minimum Template for Healthy People 2010

Race:          American Indian or Alaska Native          Asian or Pacific Islander          Asian          Native Hawaiian or Other Pacific Islander          Black or African American          White

Hispanic origin and race:          Hispanic or Latino          Not Hispanic or Latino          Black or African American          White

Minimum Presentation of Data on Race: Washington State DOH

Total AIAN Asian Black NHOPI Other White More than one race Race Not Reported

Percent Uninsured, 0-64 years, California, 2000

0

5

10

15

20

25

30

% Uninsured

White

Latino

Asian American

Native Hawaiian orOther Pacific Islander

African American

American Indian orAlaska Native

Other and MultipleRace

Lifetime Alcohol Drinking Status, Adults >=18 years: 1997-98

0 20 40 60 80

LifetimeAbstainer

FormerInfrequent

FormerRegular

Current

NonHispanic Asian orPacific Islander

NonHispanic Black

NonHispanic White

Hispanic

SOURCE: Advance Data No. 324, Revised April 18, 2002.

Perspective from Project RACE “Will the federal agencies be able to "play

with the numbers" because of this? A. Of course they will. Resources will be directed

whichever way they want by manipulating the racial numbers. In a March 14 story in The New York Times, officials at the Health and Human Services Department said they don't know whether they should plan to care for the 2.6 million people who identified themselves exclusively as American Indians or the 4.1 million people who said they were at least part Native American. Government agencies will misuse the multiracial numbers to their benefit. “

Use of Stand-Alone Multiracial Category Ohio, Illinois, Georgia, Indiana, Michigan,

Maryland have enacted legislation requiring use of stand-alone multiracial category

North Carolina and Florida Boards of Education have adopted the Multiracial Classification by Administrative Mandate

Head Start's new Program Information Report (PIR) software will include an "ethnicity" category of "Biracial/Multiracial" and staff will be instructed to "report the category of ethnicity designated by the family."

Using Multiple Race Responses If don’t need to bridge data, leave multiple

racial responses as separate categories; avoid reallocating back to single racial categories.

If multiple responses could make an important difference in measuring such disparities, it would be important to use methods that more closely assign people who report more than one race to the single group they would otherwise report before the multiple-response option became available. (Joint Center for Political and Economic Studies)

% No Health Insurance for Bridge Tabulation: NHIS 1993-5

White 13.4% (13.4%-13.5%) Black 18.1% (18%) AIAN 32.2% (26.7%-32.3%) API 18.9% (18.2%-18.9%)

SOURCE: Office of Management and Budget. The Bridge Report: Tabulation options for trend analysis. In: Provisional guidance on the implementation of the 1997 standards for Federal data on race and ethnicity. December 15, 2000.

Strategies for Users Who Need to Bridge Plurality method or one of the Fractional

Allocation methods provided the closest approximations to a past distribution.

If interested in numerically small population and want to maximize numbers for analysis, Smallest Group method and Largest Group Other than White method would yield larger counts for the category--this could raise problems of misclassification of race for a certain proportion of responses.

SOURCE: Sharon M. Lee, Using the New Racial Categories in the 2000 Census, Prepared for the Anne E. Casey Foundation. March 2001.

Jones CP, LaVeiwt TA, Lillie-Blanton M. Race in the Epidemiologic Literature: An Examination of the American Journal of Epidemiology, 1921-1990. Am J Epidemiol. 1991 Nov 15;134(10):1079-84.

Proportion of papers containing a reference to race rose steadily from 1975

Proportion of papers reporting inclusion of “nonwhite” populations did not show a parallel increase.

Exclusion of “nonwhite” subjects and description of predominantly “white” study populations increased.

Williams DR. The concept of race in Health Services Research: 1966 to 1990. Health Serv Res. 1994 Aug;29(3):261-74.

Race/ethnicity is widely used in the health services literature to stratify or adjust results and to describe the sample or population of the study.

Terms used for race are seldom defined and race is frequently employed in a routine and uncritical manner to represent ill-defined social and cultural factors.

Bennett T, Bhopal R. US health journal editors' opinions and policies on research in race, ethnicity, and health. J Natl Med Assoc. 1998 Jul;90(7):401-8.

Twenty-nine editors of health journals with impact factors of > or = 1 (based on citation ratings) were sent a questionnaire including four key problems identified in research literature and recommendations from federal agencies; 23 (79%) responded.

Seven editors had relevant policies. Two had read the federal directive on racial and

ethnic classification; one was aware of its current review. Most perceived the four key problems as uncommon.

Approximately 20% had discussed issues with co-editors, editorial boards, or reviewers. About 40% saw further discussion as beneficial; four planned to draft guidelines.

“…Identify the age, sex, and other important characteristics of the subjects. Because the relevance of such variables as age, sex, and ethnicity to the object of research is not always clear, authors should explicitly justify them when they are included in a study report. The guiding principle should be clarity about how and why a study was done in a particular way. .. Authors should avoid terms such as "race," which lacks precise biological meaning, and use alternative descriptors such as "ethnicity" or "ethnic group" instead. Authors should specify carefully what the descriptors mean, and tell exactly how the data were collected (for example, what terms were used in survey forms, whether the data were self-reported or assigned by others, etc.)..”

SOURCE: International Committee of Medical Journal Editors. UniformRequirements for Manuscripts Submitted to Biomedical JournalsUpdated October 2001

NIH POLICY AND GUIDELINES ON THE INCLUSION OF WOMEN AND MINORITIES AS SUBJECTS IN CLINICAL RESEARCH

“…members of minority groups and their subpopulations must be included in all NIH-funded clinical research, unless a clear and compelling rationale and justification establishes to the satisfaction of the relevant Institute/Center Director that inclusion is inappropriate with respect to the health of the subjects or the purpose of the research…Cost is not an acceptable reason for exclusion except when the study would duplicate data from other sources.”

Clinical research includes: Patient-oriented research, Epidemiologic and behavioral studies, Outcomes research and health services research

SOURCE: Federal Register, March 28, 1994, 59: 14508-14513; Revised October 2001

NIH POLICY ON REPORTING RACE AND ETHNICITY DATA: SUBJECTS IN CLINICAL RESEARCH: August 8, 2001

1997 OMB Standards have been adopted for “maintaining, collecting, and presenting data on race and ethnicity for all grant applications, contract and intramural proposals and for all active research grants, cooperative agreements, contract and intramural projects.”

“Collection of this information and use of these categories is required for research that meets the NIH definition of clinical research”

Effective January 10, 2002

Public Health Service Grants (PHS 398/2590 Rev. 5/01)

Targeted/Planned Enrollment Table does not include a More than One Race or Unknown or Not Reported categories but the Inclusion Enrollment Report Table does

Principal Investigator Personal Data Form allows individuals to report more than one race

Acceptable Minority Inclusion: NIH Review Criteria

Included in scientifically appropriate numbers and recruitment/retention has been realistically addressed

Some or all minority groups are excluded because: Inclusion would be inappropriate with respect to their

health The research question addressed is relevant to only

one racial or ethnic group Evidence from prior research strongly demonstrates

no differences between racial or ethnic groups on the outcome variables

A single minority group study is proposed to fill a research gap

Sufficient data already exists with regard to the outcome of comparable studies in the excluded racial or ethic groups and duplication is not needed in this study

Acceptable--II Some minority groups are excluded or

poorly represented because geographical location of study has only limited numbers of these minority groups who would be eligible for the study AND the investigator has satisfactorily addressed this issue in terms of:

size of the study relevant characteristics of the disease,

disorder or condition feasibility of making a collaboration or

consortium or other arrangements to include representation

Acceptable--III

Racial or ethnic origin of specimens of existing datasets cannot be accurately determined AND this does not compromise the scientific objectives of the research.

Unacceptable Minority representation fails to conform

to NIH policy guidance Insufficient information is provided Application does not adequately justify

limited representation of minority groups or subgroups

The application does not adequately address recruitment/retention of some or all minority groups or subgroups.

Other Inclusion Policies

CDC and ATSDR Policy on the Inclusion of Women and Racial and Ethnic Minorities in Externally Awarded Research (September 15, 1995)

AHRQ Policy On The Inclusion Of Priority Populations In Research (February 27, 2003)

Kaplan and Bennett Guidelines for Use of Race and Ethnicity in Biomedical Publication

Give reason for use of race/ethnicity Describe the way individuals were

assigned racial/ethnic categories and whether list of fixed categories used

Do not use race/ethnicity as proxy for genetic variation

Distinguish between race/ethnicity as risk factor and risk marker

SOURCE: JAMA, May 28, 2003, No. 20, pg 2710-2714

Kaplan and Bennett Guidelines--II Consider all conceptually relevant

factors in interpretation of racial/ethnic differences

Make every effort to adjust for conceptually relevant measures of SES or social class when comparing racial/ethnic groups

Use terminology that is not stigmatizing

Primer on Measuring Disparities in Health Being prepared by NCHS. Contact Ken

Keppel: Kkeppel@cdc.gov Discusses issues that arise in

measuring differences among rates and in measuring changes in disparity over time

Discusses strengths and limitations of specific statistics based on the purpose of the analysis and the number of groups to be compared

Disparity Dictionary Definitions Most dictionary definitions define disparity as

inequality; difference in age, rank, condition or excellence; or dissimilitude

Inequality is defined as condition of being unequal, or lack of equality as of opportunity, treatment or status

Inequity signifies an ethical judgment: an instance of unjustness or unfairness.

More recent dictionaries include this ethical judgment in definitions of disparity: a lack of equality and similarity, esp. in a way that is not fair.

Use of term Disparity in U.S. Although the term “disparity” is widely used

in public health in the United States, there is a difference of opinion about what is meant by disparity.

These differing opinions are based on dictionary definitions as well as personal beliefs of what is avoidable & what is unfair.

Confusion can arise from different operational definitions adopted by various health organizations.

Use of term Disparity (Cont.) What should be agreed upon is that a disparity

acts as a signpost—indicating that something is wrong.

To make progress in reducing and ultimately eliminating disparities in health, policy makers should go beyond discussion of inequality and consider what is inequitable.

Research priorities should focus on what we do not know regarding how to avoid a given disparity, what determinants are amenable to intervention, and how to make changes based on what we do know.

THE CONFLICT: RACIAL PRIVACY (5/2002)

“Ward Connerly, famous for his opposition of affirmative action, is now championing a ballot initiative that would strip all references to race and ethnicity from government forms with a few exceptions. He argues that the government has no need to collect such information on race. His opponents believe the measure would make it impossible to fight discrimination. “

SOURCE: California Connected (a weekly television news program)

Classification by Race, Ethnicity, Color and National Origin Initiative (CRECNO)

Often referred to as the “Racial Privacy Initiative”

Will be on California’s March 2004 ballot to be effective January 1, 2005

Will likely impact health research, data and statistics—the exception for “Otherwise lawful classification of medical research subjects and patients” is open to legal interpretation in future

Now has support of the California Republican Party

Concerned about this Initiative? Need to hear from providers and advocates regarding

successful programs that use race/ethnicity data to address needs of particular populations.

Need to hear from researchers regarding the various types of data that would be impacted by the initiative.

Donations as well as letters of support are also needed Contact the Coalition for an Informed California:

http://www.informedcalifornia.org/index.shtml1611 Telegraph Ave, Suite 317Oakland, CA 94612Phone: 510 452-2728Fax: 510 452-3552

NAS Study of DHHS Collection of Race & Ethnicity Data: 2001-3 Examine the adequacy of race and ethnicity

data collected or used by the Department of Health and Human Services program.

Will review current policies and practices, examine data requirements and limitations, and suggest improved methods.

To hear more about their findings: American Public Health Association presentation Future reports Contact: Dr. Michele Ver Ploeg, Study Director,

202-334-3481, sverploe@nas.edu