An Overview of Disparities and Improving the Collection of Race, Ethnicity, and Language Data: the M

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An Overview of Disparities and Improving the
Collection of Race, Ethnicity, and Language Data
the MDPH ApproachNAPHSIS ANNUAL MEETING, 2007

• Bruce B. Cohen and Brunilda Torres
• Massachusetts Department of Public Health
• June 2007

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Overview Improving Data Collection

• Historical Context
• History of MDPH efforts
• Need for more detailed data
• Defining principles
• Proposed questions

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Historical Context
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OMB Standards

• Office of Management and Budget Directive 15
  issued in 1977 set standards
• revised in 1997
• sets minimum standards for the collection of race
  and ethnicity data for all federal data sets
• all current surveys should have complied with the
  1997 revision by January 1, 2003

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OMB 1997 revision

• Major changes
• when self identification is used,
• a method for reporting more than one race should
  be adopted
• this method should NOT be a multiracial
  category, but rather a multiple response to a
  single question
• a two question format should be used, with the
  Hispanic origin question preceding the race
  question

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OMB 1997 revision

• Major changes (continued)
• when self identification is NOT used (ie.
  observer, proxy or record based)
• a method for reporting more than one race should
  be adopted
• this method should NOT be a multiracial
  category, but rather a multiple response to a
  single question
• a two question format should be used, with the
  Hispanic origin question preceding the race
  question
• a one question format may be used, with
  Hispanic as a race category

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OMB Revised Race Categories

• 1997
• white
• black or African American
• American Indian or Alaska Native
• Asian
• Native Hawaiian or Other Pacific Islander
• NOTE Only the US Census Bureau for the purpose
  of the Census 2000 and NCHS for the revised
  standard certificates of birth and death have
  been granted variances to include an other
  category

• 1977
• white
• black
• American Indian
• Asian or Pacific Islander

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Census 2000 Ethnicity Question(ADOPTED by NCHS
in Revised Certificate)

• Is person 1 Spanish/Hispanic/Latino? Mark x in
  the No box if not 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.

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Census 2000 Race questionAdopted by NCHS

• What is Person 1s race? Mark x in one or more
  races
• White
• Black, African American or Negro
• American Indian or Alaskan 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 Some other race- print race
• Vietnamese
• Other Asian- print race

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OMB 15 in historical context
OMB in Historical Context

• Lessons for states in implementing OMB 15
• race categories changed regularly over time
• race categories determined by social and cultural
  context
• race categories will continue to be determined by
  and reflect social and cultural context
• ethnicity and national origin categories
• more stable over time
• change to reflect changing demographics, not
  social and cultural context
• highly salient to state and local public health
  practice

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Impact of OMB and Federal and State Public Health
Practice

• Purpose of data collection
• state and federal similar ongoing monitoring to
  identify priorities, program evaluation, and high
  need areas
• state and federal differ
• state needs for service targeting to high risk
  individuals
• state needs for service targeting to high risk
  communities

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History of Massachusetts Efforts
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DPH efforts to date

• 1980-90s Special reports on disparities, e.g.
  Black Men Endangered, Disparities Commission
  testimony, ongoing surveillance reports, detailed
  ethnicity perinatal reports
• 2000 Efforts to identify R/E/L methods in MDPH
  databases
• 2001 Collection of race/ethnicity and language
  required in hospital acute care settings as
  result of Interpreters Services Regulations
• 2002 Internal meetings to develop MDPH
  standards
• 2003 MDPH data standards committee review
• 2005 Collaboration with Boston Public Health
  Commission for consistent standards
• 2006 Joined with Division of Health Care
  Finance and Policy to promulgate case-mix data
  regulations implement 1/2007 for hospital
  discharge and emergency department data
• 2007 February, MDPH issues new standards

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Why do we need more detailed information?
15
Mothers Race Births 2004
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Mothers Ancestry Births 2004
17
Breastfeeding among Mothers by Race
Massachusetts 2000-2004
Non-Hispanic
Source Massachusetts Births 2002-20044
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Breastfeeding among Mothers by Ethnicity,
MA2000-2004
Source MDPH, Center for Health Information,
Statistics, Research Evaluation, Research
Epidemiology Program
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Cesarean Section Deliveries among Mothers by
Race, MA2000-2004
Non-Hispanic
Source Massachusetts Births 2002-20044
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Mothers Ethnicity and Cesarean Rates All
Deliveries MA 2004
A delivery of multiples is counted once
Source Massachusetts Births 2004
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Defining Principles
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MDPH Proposal

• Collect Hispanic ancestry and race categories
  consistent with Federal OMB standards
• Expand collection to include detailed ethnicity
  data
• Collect language data consistent with LEP
  (Limited English Proficiency) guidance issued by
  DHSS in 2002

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Principles for Data Collection

• Encourage client self-report
• Allow for the selection of multiple categories
• Collect information on detailed ethnicity groups
  as well as broad race categories
• Incorporate language preference as basic
  sociodemographic characteristic
• Maintain consistency with Federal OMB standards

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Basic concepts

• Race group or groups that an individual
  
  identifies with because they share similar
  physical characteristics or social and
  geographic origins.
• Ethnicity a persons background, heritage,
  culture, ancestry, country of birth

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Added Value

• OF ETHNICITY
• better understood
• less context dependent
• more useful for program targeting and development
• improved sensitivity to linguistic needs
• added insight into acculturation

• OF RACE
• monitors discrimination,
• yields more stable rates
• Follows OMB standard
• more routinely collected

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Concerns

• WITH RACE
• changing over time
• not clearly understood conceptually
• context dependent
• heterogeneity within groups
• used as proxy

• WITH ETHNICITY
• lack of denominators for population based rates
• small numbers for analysis
• requires more complex data collection
• more variable by geography

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Collecting Both

• Advantages
• client centered care
• target interventions
• monitor demographic change
• health status monitoring

• Disadvantages
• expanded IT efforts
• moves beyond Federal minimum standards
• lack of denominator data for calculating rates
• increases data collector and respondent burden

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Proposed Questions
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Proposed New Questions

• 5-Question Format
• Define a Minimum set of categories
• Allow for expansion to meet local needs
• Allows for free text
• Maintain consistency with Federal standards

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Question 1

• 1. Are you Hispanic/Latino/Spanish?
• ? Yes
• ? No

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Question 2
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Question 3, Race

• What is your race? (You can specify one or more)
• ? American Indian/Alaska Native
  (specify tribal nation___________________)
• ? Asian
• ? Black
• ? Native Hawaiian or other Pacific Islander
  (specify)
• ? White
• ? Other (specify ___________________)
• ? Unknown/not specified

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Questions 4 and 5 Language Preference

• 4. In what language do you prefer to discuss
  health-related concerns?
• ? Albanian ? Portuguese
• ? Arabic ? Russian
• ? Cape Verdean Creole ? Somali
• ? Chinese (specify) ? Spanish
• ? English ? Vietnamese
• ? Haitian Creole ? Other (specify)
• ? Khmer
• 5. In what language do you prefer to read
  health-related materials?_____________

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Implementation
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Keys to successful implementation

• Making the data collector comfortable
• Making the respondent comfortable
• Helping the respondent understand the importance
  of the information

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Field Testing and Training

• 9000 patients
• 1,200 WIC participants
• Four statewide Train the Trainer training
  sessions for 200 hospital personnel

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Current Status

• DHCFP -- Implementation 1/2007
• BPHC --Implementation 7/2007
• MDPH Implementation ongoing
• Support via BPHC, DHCFP, MHA Ongoing
  http//www.mhalink.org/

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Lessons learned

• Overall, data collectors and program participants
  feel very favorably about this process.
• Training of data collectors is crucial
• Purpose and importance of data
• Strategies for using new data
• Strategies for answering common questions
• Need to reach out to our community partners
• Need to bring IT into this process