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Racial and Ethnic Data Issues for Epidemiologic Studies

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Title: Racial and Ethnic Data Issues for Epidemiologic Studies


1
Racial and Ethnic Data Issues for Epidemiologic
Studies
  • Olivia Carter-Pokras, Ph.D.
  • University of Maryland School of Medicine

2
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.

3
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 theyll have
    the most impact.

4
What is Race?
  • 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 Importance Of Collecting Data
and Doing Social Scientific Research on Race.
2003.
5
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
6
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
  • Dorlands 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.

7
…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.
8
Question How does the Census Bureau define race
and ethnicity?
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/race
qandas.html
9
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

10
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

11
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/LatinoPrint group

12
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 NativePrint name of
    enrolled or principal tribe.
  • Asian Indian --Native Hawaiian
  • Chinese --Guamanian or Chamorro
  • Filipino --Samoan
  • Japanese --Other Pacific Islanderprint race
  • Korean
  • Vietnamese
  • Other AsianPrint race
  • Some other racePrint race

13
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

14
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

15
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/ww
w/socdemo/race/racefactcb.html
16
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

17
Guidance on Aggregation and Allocation of Data on
Race for Use in   Civil Rights Monitoring and
Enforcement
1 American Indian or Alaska Native 2 Asian 3 Black
or African American 4 Native Hawaiian or Other
Pacific Islander 5 White 6 American Indian or
Alaska Native and White 7 Asian and White 8 Black
or African American and White 9 American Indian
or Alaska Native and Black or African
American 10 1 percent Fill in if
applicable_____________________ 11 1 percent
Fill in if applicable______________________ 12 Bal
ance of individuals reporting more than one
race 13 Total
SOURCE OMB BULLETIN NO. 00-02 March 9, 2000
18
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

19
Minimum Presentation of Data on Race Washington
State DOH
  • Total
  • AIAN
  • Asian
  • Black
  • NHOPI
  • Other White
  • More than one race
  • Race Not Reported

20
Percent Uninsured, 0-64 years, California, 2000
21
Lifetime Alcohol Drinking Status, Adults 18
years 1997-98
SOURCE Advance Data No. 324, Revised April 18,
2002.
22
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.

23
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."

24
Using Multiple Race Responses
  • If dont 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)

25
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.
26
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.
27
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 15134(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.

28
Williams DR. The concept of race in Health
Services Research 1966 to 1990. Health Serv Res.
1994 Aug29(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.

29
Bennett T, Bhopal R. US health journal editors'
opinions and policies on research in race,
ethnicity, and health. J Natl Med Assoc. 1998
Jul90(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.

30
…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. Uniform Requirements for
Manuscripts Submitted to Biomedical
Journals Updated October 2001
31
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
32
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

33
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

34
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

35
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

36
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.

37
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.

38
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)

39
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
40
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

41
Primer on Measuring Disparities in Health
  • Being prepared by NCHS. Contact Ken Keppel
    Kkeppel_at_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

42
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.

43
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.

44
Use of term Disparity (Cont.)
  • What should be agreed upon is that a disparity
    acts as a signpostindicating 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.

45
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)
46
Classification by Race, Ethnicity, Color and
National Origin Initiative (CRECNO)
  • Often referred to as the Racial Privacy
    Initiative
  • Will be on Californias March 2004 ballot to be
    effective January 1, 2005
  • Will likely impact health research, data and
    statisticsthe 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

47
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.shtml
  • 1611 Telegraph Ave, Suite 317
  • Oakland, CA 94612
  • Phone 510 452-2728
  • Fax 510 452-3552

48
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_at_nas.edu
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