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

NAPHSIS ANNUAL MEETING, 2007

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

June 2007

Overview: Improving Data Collection

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

Historical Context

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

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

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

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

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.

Census 2000: Race questionAdopted by NCHS

What is Person 1’s 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

OMB 15 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

OMB in Historical Context

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

Impact of OMB and Federal and State Public Health Practice

History of Massachusetts Efforts

DPH efforts to date

1980-90’s: 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

Why do we need more detailed information?

Mother’s Race – Births 2004

White Non-Hispanic

70%

Black non-Hispanic

8%

American Indian/Other

2%

Asian7%

Hispanic13%

Mother’s Ancestry – Births 2004

American

European

Asian Indian

African-American

Haitian

Other African

Salvadoran

Puerto Rican

Other Portuguese

Cape Verdean

Chinese

VietnameseOther and Missing

Cambodian

MexicanBrazilian

Other South AmericanOther Central

American

Breastfeeding among Mothers by Race Massachusetts: 2000-2004

76.5 79.073.4

79.974.8

0

20

40

60

80

100

Blacks* Hispanics Whites* Asians* MA TOTAL

% B

rea

st

fee

din

g

*Non-HispanicSource: Massachusetts Births 2002-20044

50%

92%93%93%93%

96%97%

71%

0% 20% 40% 60% 80% 100%

CambodianLaotian

VietnamesePuerto Rican

African AmericanNative American

MA TOTALCape Verdean

CubanChinese

BarbadianThai

JamaicanOther West

HaitianDominican

Other Asian/PIFilipino

MexicanOther African

KoreanNigerian

PakistaniColombianSalvadoran

Asian IndianJapanese

Breastfeeding among Mothers by Ethnicity, MA:2000-2004

Blacks

Hispanics

Asians

Source: MDPH, Center for Health Information, Statistics, Research & Evaluation, Research & Epidemiology Program

Cesarean Section Deliveries among Mothers by Race, MA:2000-2004

29.1

23.9

28.1

24.0

27.4

0

10

20

30

Blacks* Hispanics Whites* Asians* MA TOTAL

% B

rea

st

fee

din

g

*Non-HispanicSource: Massachusetts Births 2002-20044

40%37%

35%

27%

15%

0% 5% 10% 15% 20% 25% 30% 35% 40% 45%

BrazilianAfricanHaitian

Asian IndianWest Indian/Caribean

EuropeanDominican

All OtherOth Port

African AmerNative AmerVietnameseOther Asian

Middle EasternOth Hispanic

ChinesePuerto Rican

Oth Central AmerCape Verdean

SalvadoranCambodian

Source: Massachusetts Births 2004

Mother’s Ethnicity and Cesarean Rates

All Deliveries* MA 2004

* A delivery of multiples is counted once

Defining Principles

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

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

Basic concepts

Race: group or groups that an individual identifies with because they share similar physical characteristics or social and geographic origins.

Ethnicity: a person’s background, heritage, culture,

ancestry, country of birth

Added Value

OF RACE

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

OF ETHNICITY

• better understood • less context dependent• more useful for program

targeting and development

• improved sensitivity to linguistic needs

• added insight into acculturation

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

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

Proposed Questions

Proposed New Questions

1. 5-Question Format

2. Define a Minimum set of categories

3. Allow for expansion to meet local needs

4. Allows for free text

5. Maintain consistency with Federal standards

Question 1

1. Are you Hispanic/Latino/Spanish? ❑ Yes

❑ No

Question 2

2. What is your ethnicity? (You can specify one or more)

❑ African (specify) ❑ African American ❑ American ❑ Asian Indian ❑ Brazilian ❑ Cambodian ❑ Cape Verdean ❑ Caribbean Islander (specify) ❑ Chinese ❑ Colombian ❑ Cuban ❑ Dominican ❑ European ❑ Filipino ❑ Guatemalan

❑ Haitian ❑ Honduran ❑ Japanese ❑ Korean ❑ Laotian ❑ Mexican, Mexican American, Chicano ❑ Middle Eastern (specify) ❑ Portuguese ❑ Puerto Rican ❑ Russian ❑ Salvadoran ❑ Vietnamese ❑ Other (specify) ❑ Unknown/not specified

Question 3, Race

3. 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

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?_____________

Implementation

Keys to successful implementation

• Making the data collector comfortable

• Making the respondent comfortable

• Helping the respondent understand the importance of the information

Field Testing and Training

• ~ 9000 patients

• ~1,200 WIC participants

• Four statewide “Train the Trainer” training sessions for 200 hospital personnel

Current Status

• DHCFP -- Implementation 1/2007

• BPHC --Implementation 7/2007

• MDPH – Implementation ongoing

• Support via BPHC, DHCFP, MHA – Ongoing http://www.mhalink.org/

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