Addressing Racial Disparities in Maternal and Child Health

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Addressing Racial Disparities in Maternal and
Child Health

• JudyAnn Bigby
• Barbara Ferrer
• Dianna Christmas

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Session Objectives

• Describe racial and ethnic disparities in
  maternal and child health indicators in Boston
• Discuss factors that may contribute to health
  disparities
• Discuss challenges in identifying and using race
  and ethnicity data for maternal child health
  assessment
• Describe one project in Boston to address
  disparities in infant mortality and low birth
  weight births

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Health Disparities in Boston
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Infant Mortality in Boston by Race and Ethnicity
Data source Mass Dept of Public Health Data
analysis Boston Public Health Commission
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Boston Fetal and Infant Mortality 1992-96 (Data
and analysis Boston Public Health Commission)
Maternal Health 6.2
Maternal Care 3.2
Newborn Care 1.0
Infant Care 1.8
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Excess Fetal and Infant Mortality Rate1992-96
Data and analysis Boston Public Health Commission
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LBW in Boston,1991-1999
DATA SOURCE Boston resident live births,
Massachusetts Department of Public Health DATA
ANALYSIS Boston Public Health Commission,
Research and Technology Services
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What accounts for racial and ethnic disparities?
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What accounts for racial disparities?

• Biology
• Social factors
• Racism
• Personal beliefs
• Provider behavior
• Institutional polices and procedures

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Definitions of Race

• A vague, unscientific term referring to a group
  of genetically related individuals who share
  certain physical characteristics
• Biologic distinctiveness does not determine race
• Race is a social construct
• Racial designations are most often important in
  societies with a history of oppressing some
  racial/ethnic groups
• Race has no meaning to many groups

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Definition of Ethnicity
A subgroup that shares a common ancestry,
history, or culture

• Geographic origins
• Family patterns
• Language
• Values
• Cultural norms
• Religion

• Literature
• Music
• Dietary patterns
• Gender roles
• Employment patterns

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Biology Genetics not the answer

• Increasing evidence that the gene pool is the
  same across racial and ethnic groups
• Paradoxical observations of apparent biologic
  difference
• Response to antihypertensives by race
• Antidepressants
• Metabolism of nicotine, alcohol

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Social Factors

• Poverty
• Blacks, Latinos, American Indians and some Asians
  are 3 times more likely to be poor than are
  whites
• Education
• Immigration status
• Employment
• Housing
• Geographic location

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Racisms impact on health status

• Social outcomes
• Racial bias in medical care
• Stress of experience of discrimination (micro
  aggressions, MEES)
• e.g. hypertension, prematurity, depression
• Acceptance of social stigmata of inferiority
  (internalized racism)

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Personal Beliefs

• Reject certain treatment or preventive
  interventions
• Health seeking behavior
• Interpersonal interactions with physicians
• Withholding information
• Belief about control of health status
• Use of non-traditional or non-Western medicine

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Provider Behavior

• Provider perceptions of symptoms and presenting
  complaints
• Provider perception of worthiness of patient
• Provider misunderstanding of racial and ethnic
  differences

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Institutional Policies and Procedures

• Policies dictating insurance coverage
• Implications for formularies, assessment of
  compliance, public health education
• Hours of operation, location of services
• Provider profiles
• Resources to support care of non-majority
  populations
• Content of medical education

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Contributions to Health Outcomes
gender
RACISM
BIOLOGY/GENETICS
sexuality
ethnicity
ENVIRONMENT
HEALTH OUTCOMES
R A C E
CULTURE
POLICIES
SOCIAL RESOURCES
SOCIOECONOMICS
HEALTH CARE RESOURCES
PERSONAL PRACTICE
E.G. INSURANCE PHYSICIANS HOSPITAL
SYSTEMS RELATIONSHIPS W/PROVIDERS QUALITY OF CARE
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Factors Influencing Health Status
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Challenges in Identifying and Using Race and
Ethnicity Data for Maternal and Child Health
Assessment
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Public Health Perspective

• Within public health, the classification of
  groups of people into racial groups is meaningful
  only if this classification leads to a better
  understanding of the factors that have led to
  disparity in disease treatment and health outcome
• Identification and monitoring of racial and
  ethnic disparities in maternal and child health
  outcomes requires the ability to measure race and
  ethnicity
• Design of effective, targeted interventions and
  strategies to address poor birth outcomes varies
  by race and ethnicity

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Underlying Assumptions

• Race and ethnicity categories and specific racial
  and ethnic group designations are consistently
  defined and determined
• The categories and designations are understood by
  the populations questioned
• Survey enumeration, participation, and response
  rates are high and similar for all populations
• The responses of persons are consistent in
  different data sources and at different times

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Challenges

• 1. Differences in terminology used to categorize
  race and ethnicity
• Confusion regarding definitions of race,
  ethnicity and ancestry
• Definition of Hispanic is often unclear and
  inconsistent across and within data sources (race
  vs. ethnicity)
• Use of other category, without defining this
  population group

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Challenges

• 2. Differences in data collection procedures
• Racial data based on self identification by
  respondents vs. perceptions of observers
• Missing or incomplete reporting of race/ethnicity

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Challenges

• 3. Differences in perceptions of group identity
• Numerous studies show that race/ethnicity
  identification is fluid and self-perceptions
  change over time and across circumstances,
  especially among individuals with heterogeneous
  ancestries
• Increased population of multi-racial and
  multi-ethnic persons

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Challenges

• 4. Changing demographics
• Difficulty capturing the increasingly more
  racially and ethnically diverse US population
• Exclusion of racial/ethnic subgroups precludes
  understanding the distribution of disease in
  certain populations

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Challenges

• 5. Incomplete collection of measures of social
  and economic conditions that may confound an
  association between race/ethnicity and health
  outcomes
• Health data often doesnt contain information on
  SES status (income, education)

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Selected Data Sources

• Issues and Limitations

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Census Data

• 1. Most rates for birth, death and morbidity are
  calculated with census population estimates as
  the denominator misreporting occurred in 1990
  Census with undercounting of Blacks, American
  Indians and Alaskan Natives, Asian and Pacific
  Islanders, and Hispanics at higher rates than
  Whites
• Any rate that uses an undercounted denominator is
  overestimated in proportion to the undercount in
  the denominator unfortunately, estimates of
  undercount are generally only available at the
  national level

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Birth Certificate Data

• 1. Changing reporting standards create
  difficulties for data analysis
• Prior to 1989, the race/ethnicity of infant was
  assigned by complex formula based on
  race/ethnicity of mother and father
• Beginning in 1989, the self-reported
  race/ethnicity of infants mother was adopted as
  race/ethnicity of infant
• Changes in ethnicity categories were made
  starting in 1996 with sub-population ethnic
  categories varying year to year all variations
  on other therefore also differ from year to
  year

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Death Certificate Data

• 1. Only race of descendents is collected data is
  not collected on race of parents
• 2. Racial status is typically based on observer
  identification may lead to undercount problem in
  the numerator of mortality for some minority
  populations
• 3. Death rates by race and Hispanic ethnicity may
  be biased from misreporting of race and Hispanic
  origin in the numerator of rates and misreporting
  and underrepresented in the denominator of rates
• 4. Very little racial/ethnic subgroup data is
  available for adult mortality, masking important
  patterns of variation (identifier for Hispanic
  ethnicity was added in 1989)

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Patient Record Data

• 1. Variability in coding method for
  race/ethnicity(observation/proxy report/patient)
• 2. Hospital Discharge Data
• Race not reported in 18 of NHDS records
  Hispanic origin not reported for 85 of NHDS
  records
• Form UP-92, which is used by many hospitals with
  automated systems, doesnt require the reporting
  of race

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Patient Record Data

• 3. Surveillance System Data
• Race/ethnicity information varies by disease and
  state for the 36 noticeable diseases reported to
  the NNDSS, with as many as 35 of reports for
  measles, salmonellosis, and shigellosis not
  including race/ethnicity information
• 4. Immunization Registry Data
• Race/ethnicity may or may not be collected as
  part of demographic profile
• Boston Immunization Information System does not
  include race/ethnicity in its core required data
  elements and site participants do not voluntarily
  provide that information

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Recommendation for Federal Action

• 1. Racial/Ethnic categories should be clearly
  defined, standardized and operationalized across
  all federal agencies so that researchers and
  respondents know what the categories mean and the
  information is compatible from source to source

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Recommendation for Federal Action

• Undertake validation of categories of race based
  perhaps on anthropological, archeological,
  linguistic, migration and self-perception
  evidence
• Undertake validation of categories of ethnicity
  based perhaps on concepts of social identity and
  changes in social identity, assessment of
  membership identification and group boundaries
• Include identifiers for subgroups on all
  government surveys and forms
• Racial/ethnic data should be routinely utilized
  in the design, implementation and evaluation of
  health studies and health programs

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Recommendation for Federal Action

• 2. Routinely monitor and update current measures
  of race and ethnicity
• Flexibility of the system may require compromises
  in the consistency of categories
• 3. Build and sustain communication mechanisms
  with racial/ethnic communities to ensure that
  they assist in defining racial/ethnic categories,
  receive findings from current studies, and
  participate in designing future research and
  interventions

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Local Response

• 1. Establish and articulate clearly the reason
  why measures of race ethnicity are used
• 2. Assess the reliability, validity,
  generalizability and applicability of each data
  set
• Determine presence of ethnicity and national
  origin fields, who obtains this information, when
  and how, and assess its completeness and probable
  reliability

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Local Response

• Determine size of samples in each data set and
  the probable representativeness of the sample
• Determine usefulness of each data set for
  research and planning purposes and the specific
  kinds of questions it may answer
• Note any limitations of racial/ethnic data

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Local Response

• 3. Support, advocate and work for improvements in
  existing data systems and collection of
  additional needed data
• Assess the way in which different segments of the
  population identify themselves by
  race/ethnicity
• Identify gaps and inconsistencies in available
  data and set priorities for correcting them
• Work collaboratively to promote awareness of the
  importance of distinguishing among national
  origin groups, reliable methods of determining
  national origin and ethnic identity in data
  systems, and improvements in sampling and
  interviewing methods

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Local Response

• 4. Attempt to design studies that identify the
  specific factors linked to race that affect
  health (acculturation, economic, and non-economic
  aspects of discrimination)
• Design a construct which can measure and/or
  reflect racism--capturing the experience of
  racial discrimination at both the individual and
  institutional level
• 5. Involve racial/ethnic communities in the
  design, implementation and evaluation of all
  efforts to assess and address racial/ethnic
  disparities in health outcomes

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Current Projects to Reduce Racial Disparities in
Health Outcomes

• Womens Health Demonstration Project
• REACH 2010 Eliminating Racial Disparities in
  Breast and Cervical Cancer Among Women of African
  Descent
• Latino Health Needs Assessment

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Bostons Womens Health Demonstration Project

• A Collaboration of the
• Health of Women and Infants
• Working Group
• Boston Public Health Commission

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Health of Women and Infants Working Group (HWIWG)

• Convened in June of 1998 to guide the Boston
  Public Health Commissions efforts at improving
  birth outcomes.
• HWIWG represents state and city agencies, the
  Boston Healthy Start Initiative, community health
  centers, public health schools, and hospitals and
  includes providers of all types, policy makers,
  researchers, and women from the community.

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Boston Womens Health Demonstration Project -
Rationale

• Continuing disparities in infant mortality rates,
  low birth weight, and adequacy of prenatal care
• Infant deaths attributable to poor health of
  women prior to conception
• Womens reports of fragmentation of services and
  dissatisfaction with care

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Boston Infant Mortality Review
1990-93(McCloskey L, et.al. Public Health
Reports 1999114165)

• Women experiencing an infant death were more
  likely than other women to
• Be homeless or near homeless (30 vs 11)
• Be abused by partner (25 vs 6)
• Have an unintended pregnancy (63 vs 41)
• Have used alcohol (23 vs 8)

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Boston Infant Mortality Review 1990-93
(McCloskey L, et.al. Public Health Reports
1999114165)

• Themes from review panel findings
• Women experience fragmentation and discontinuity
  of care (73)
• Severe social risk is unrecognized and/or
  unmatched by needed services in the health care
  setting (50)
• Recurring UTIs, genital infections, and STIs
  (44)
• Repeat unintended pregnancies closely spaced
  pregnancies (40)
• Low satisfaction with interpersonal aspects of
  care (38)

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Recommendations from IMR

• Comprehensive care for women regardless of
  pregnancy status.
• Multi-disciplinary team of providers to address
  needs of women from low-income communities in
  context of primary clinical care.
• Improved interpersonal patient/provider
  relationships.
• Integration between clinical and social services
  in primary care setting.
• Systematic approach to reducing barriers to care
  for women.
• Source McCloskey L, Bigby J, Brand A. for the
  Working Group on Case Management, Outreach, and
  Community Partnerships, Beyond Prenatal Care
  Improving Birth Outcomes in Low-Income
  Communities Through Enhancements to Clinical
  Services for Women, 1997.

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Boston Womens Health Demonstration Project -
Goals

• Reduce fragmentation and discontinuity in care
• Systematic identification of medical and social
  risks
• Comprehensive response to medical and social
  problems
• Improve patient satisfaction with care and with
  providers

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Boston Womens Health Demonstration Project

• Components of project
• Standardized risk assessment tool
• Focus groups with clients from health centers and
  Boston Healthy Start Initiative
• Review of assessment tool by HWIWG members
• Assessment results shared with women and
  providers
• Case management

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Boston Womens Health Demonstration Project

• Each site will identify 50 women aged 18-45 to
  participate in the pilot study
• Each site receives a case manager and necessary
  computer equipment
• Each site identifies target populations
• e.g. women with walk-in or ED visits, repeat
  pregnancy tests, women no longer coming in for
  care

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Boston Womens Health Demonstration Project

• Reduce fragmentation and discontinuity in care
• outreach to women who are not receiving regular
  care
• develop interdisciplinary teams with clear roles
  and strategies for communication
• share processes of care and outcomes

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Boston Womens Health Demonstration Project

• Systematic identification of medical and social
  risk
• 9 page Womens Health Questionnaire -
• Basic information
• Physical health (preventive habits pap smear and
  mammography use immunization FH heart disease,
  cancer, or SA medical problems and sxs,
  reproductive health, meds, health insurance)
• Social and emotional health (housing concerns,
  social support, mental health, work hx, home
  safety, domestic violence, and sources of stress)

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Boston Womens Health Demonstration Project

• Comprehensive response to medical and social
  problems
• WHQ results generate report to women and
  providers
• provider training
• recommendations to providers about clinical
  strategies
• on line resource directory to assist case
  managers
• track success of interventions, connection to
  community resources

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Boston Womens Health Demonstration Project

• Improve patient satisfaction with care and with
  providers
• meeting the identified needs of women
• provider training
• case managers as bridges between women and
  providers

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Boston Womens Health Demonstration Project
Provider visits
Women receive results
Providers, case managers, women devise strategies
to address problems
Women complete WHQ
Results scanned, report generated
Providers receive results
Case manager interactions
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Boston Womens Health Demonstration Project
Evaluation

• Satisfaction surveys
• assess womens experience with questionnaire
• provider satisfaction with questionnaire and
  assessment of impact on process
• Case manager logs
• Chart reviews of women in project and comparison
  group

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Boston Womens Health Demonstration Project
Evaluation

• Women asked to complete satisfaction survey
  following their provider appointment.
• How do women find the process of completing the
  questionnaire with the case manager?
• How do women perceive the questionnaires effect
  on their clinical encounters?

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Boston Womens Health Demonstration Project
Evaluation

• Provider questionnaire at 1 and 6 months
• Does process expand knowledge of patients lives,
  or change the kind of care that is delivered?
• How has questionnaire impacted encounters?
• How has patient flow been affected by the
  process?
• Monthly follow-up
• What do you like/not like about the
  questionnaire?
• Describe the communication and collaboration
  among primary care team members

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Boston Womens Health Demonstration Project
Evaluation

• Documentation in medical record and case manager
  log includes problem, type of service needed,
  referrals made, and referral outcome.
• Questions to answer
• Are project participants more likely than others
  to use primary and preventive health services?
• Measures include annual exam, number of no
  show visits, use of prenatal care if pregnant,
  and identification of a regular provider.
• To what extent are referrals completed among
  project participants?

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Boston Womens Health Demonstration Project

• Desired outcomes
• Women engaged in care
• Identify medical and social risks and high
  quality standard of care in response
• Improved provider/patient interactions
• Improved linkage of community resources to
  clinical settings
• Increased patient satisfaction and knowledge of
  own health