Collecting Race and Ethnicity Data: Barriers and Solutions

Romana Hasnain-Wynia, PhDHealth Research and Educational Trust/AHA

November 3, 2006

Questions

• WHY and HOW disparities occur• Which interventions are effective at

reducing or eliminating disparities• What proportion of observed

disparities are amenable to improvements in health care

• HOW to collect relevant data

Race/Ethnicity Data

• Why Collect It

• Current Practices

• Barriers

Nuts and Bolts of Data Collection

• Addressing Discomfort

• Categories

• Staff training

• Start the dialogue with the community before implementing systematic data collection on race/ethnicity/language

White Non-Hispanic 2.4

Black Non-Hispanic 21.7

Hispanic 14.8

Asian 33.2

Foreign-born 25.1

Source: Centers for Disease Control, National Center for HIV, STD, and TB Prevention

2000 Tuberculosis Rates per 100,000 population, by Race/Ethnicity and Foreign

Born-Status (Newark, NJ)

White Non-Hispanic 3.6

Black Non-Hispanic 19.8

Hispanic 12

Asian 57.3

Foreign-born 29.8

Source: Centers for Disease Control, National Center for HIV, STD, and TB Prevention

2000 Tuberculosis Rates per 100,000 population, by Race/Ethnicity and Foreign

Born-Status (Jersey City, NJ)

Common Barriers To Collecting Data

• Validity and reliability of data

• Legal concerns

• System/organizational barriers

• Appropriate categories

• Patients’ perceptions/language and culture

• Staff discomfort in explicitly asking patients to provide this information. *

Current Practices:National Survey of Hospitals

0

20

40

60

80

R/E Data Clerk Eyeballs

Primary language Drawbacks to data coll

Use data for QI

Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals, 2004 CMWF

Recommendations For Standardization

• Who provides the information—should always be patients or their caretakers. Should never be done by observation alone

• When to collect—upon admission or patient registration to ensure appropriate fields are completed when patient begins treatment

• What racial and ethnic categories should be used---start with the U.S. Census categories. Hospitals can provide more”fine-grained”categories if needed

• Where should data be stored—in a standard format for easy linking to clinical data

• Patient Concerns—should be addressed upfront and clearly prior to obtaining information

• Staff training---need to provide on-going training and evaluation

Barriers to Obtaining Race/Ethnicity Data

• Concern that this will alienate patients– “Profiling”– Self-categorization (“Pick a box…”)– Use of “other” or “multiracial” categories.

• Time consuming (expensive)

Most Patients Agreed That it was Important to Collect Race/Ethnicity Data

“It is important for hospital and clinics to collect information from patients about their race or ethnic background?

Strongly Agree 43%Somewhat Agree 37%Unsure 6%Somewhat Disagree 10%Strongly Disagree 4%

Source: Baker, DW et al. “Patients Attitudes Toward Health CareProviders Collecting Information About Their Race and Ethnicity.” Journal of General Internal Medicine. 2005.

Even Stronger Support That Hospitals Should Examine

Differences in Quality of Care

“It is important for hospitals & clinics to conduct studies to make sure that all patients get the same high quality care regardless of their race or ethnic background.” Would you say that you:

Strongly Agree 93%

Somewhat Agree 4%

Unsure 2%

Somewhat Disagree 1%

Significant Concerns About How This Data Might Be Used

How concerned would you be that this data could be used to discriminate against patients?

Not concerned at all 34%A little concerned 15%Somewhat concerned 20%

Very concerned 31%

Can we decrease patients’ concerns about collecting this information

by providing a rationale?

Four possible rationales for collecting race/ethnicity.

#1 – Monitoring quality of care (“monitoring”)

#2 – Mandate to collect information (“mandate”)

#3 – Staff training and hiring (“needs assessment”)

#4 – Possible benefits for one’s care (“personal gain”)

.

Found that the “Monitoring”rationale helps

patients feel the most comfortable

Found that the “Monitoring”rationale helps

patients feel the most comfortable

“We want to make sure that all our patients get the best care possible, regardless of their race or ethnic background. We would like you to tell us your race or ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care.”

“We want to make sure that all our patients get the best care possible, regardless of their race or ethnic background. We would like you to tell us your race or ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care.”

Short/Simple Version

Now I would like you to tell me your Race and Ethnic Background. We use this to review the treatment patients receive and make sure everyone gets the highest quality of care.

Do Patients Like to Describe Their Race/Ethnicity in Their Own Words?

• Patients asked to state race/ethnicity in terms of their choice.

• Asked standard 2-part R/E questions. (OMB Categories)– Latino/Hispanic?– What is your race? (7 options read)

• Asked preference between two methods

Wide Variation in Preferences for Using Own Words vs. Choosing from a List of Categories

Which approach do you like better, telling your race or

ethnic background using your own words or choosing

from a list of categories?” Would you say that you:

Strongly prefer own words 27%

Somewhat prefer own words 11%

Think they are about the same 30%

Somewhat prefer choosing from the list 15%

Strongly prefer choosing from the list 17%

Multiracial/Ethnic Individuals Strongly Preferred Using Own Words

“Which approach do you like better, telling your

race or ethnic background using your own words

or choosing from a list of categories?” Would

you say that you:

Strongly prefer own words 56%

Somewhat prefer own words 6%

Think they are about the same 17%

Somewhat prefer choosing from the list 11%

OMB Categories

RACE QUESTION:Which category best describes

your race?• American Indian/Alaska Native• Asian• Black or African American• Native Hawaiian/Other Pacific

Islander• White• Multiracial• Declined• Unavailable/Unknown

ETHNICITY QUESTION:• Do you consider yourself

Hispanic/Latino?• Yes• No• Declined• Unavailable/Unknown

Problems with Splitting Race and Ethnicity—OMB Categories

Using OMB Categories Without Splitting Race/Ethnicity

-African American/ Black-Asian-Caucasian/White-Hispanic/Latino/White-Hispanic/Latino/Black-Hispanic/Latino/Declined-Native American-Native Hawaiian/Pacific Islander-Multiracial-Declined-Unavailable/Unknown

Fields and Categories• Process

– Required fields– Ethnicity first

• Ethnicity– Hispanic or Latino– Not Hispanic or Latino– Declined– Patient unavailable

• Preferred language– [Numerous]– Declined– Other– Patient unavailable

• Race– American Indian or Alaskan Native– Asian– Black or African American– Native Hawaiian or Other Pacific Islander– White– Multiracial: Asian/Black-African American– Multiracial: Asian/White– Multiracial: Black-African American/White– Multiracial: Other combination– Declined– Patient unavailable

Source: Rohit Bhalla, MD, MPHMontefiore Medical CenterBronx, NY, Expecting Success Site

Code Description Racial Category ADDED

 

 

CURRENTLY IN SYSTEM  

NA American Indian/Alaska NativeNative American/Alaska Native x  

AS Asian Asian x  

BL Black/African American Black/African American x  

CO Columbian Hispanic (All Races) x  

CU Cuban Hispanic (All Races) x  

HI Hispanic other Hispanic (All Races) x  

ME Mexican Hispanic (All Races) x  

NH Native Hawaiian Pacific Islander x  

OPI Other Pacific Islander Pacific Islander x  

PU Puerto Rican Hispanic (All Races) x  

UN Unknown/Unreported Unreported/Unknown x  

WH White White (non-Hispanic) x  

 

Code Description MegaWest UDS Racial CategoryIn MegaWest BEFORE ADDED

CAI Central American Indian Native American/Alaska Native XMXI Mexican American Indian Native American/Alaska Native xSAI South American Indian Native American/Alaska Native x

CAM Cambodian Asian XCHN Chinese Asian XTWN Taiwanese Asian xFLP Filipino Asian xIDO Indonesian Asian xJPN Japanese Asian xKOR Korean Asian xLAO Laotian Asian xMLY Malaysian Asian xPAK Pakistani Asian xSRI Sri Lankan Asian xTHA Thai Asian xVIE Vietnamese Asian x

PROPOSED

Code Description MegaWest UDS Racial CategoryIn MegaWest BEFORE ADDED

AAM African American Black/African American xAFR African Black/African American xETH Ethiopian Black/African American XLIB Liberian Black/African American XNGE Nigerian Black/African American XZAI Zairian Black/African American XBAH Bahamian Black/African American XHAI Haitian Black/African American XJAM Jamaican Black/African American XTOB Tobagoan Black/African American XTRN Trinidadian Black/African American XWIN West Indian Black/African American X

ENG English White (non-Hispanic) XFRN French White (non-Hispanic) XGER German White (non-Hispanic) XIRL Irish White (non-Hispanic) XITL Italian White (non-Hispanic) XPOL Polish White (non-Hispanic) X

PROPOSED

Code Description MegaWest UDS Racial CategoryIn MegaWest BEFORE ADDED

IRN Iranian Asian XIRQ Iraqi Asian XLEB Lebanese Asian XPAL Palestinian Asian XSYR Syrian Asian XAFG Afghani Asian xISR Israeli Asian X

ARB Arab Asian X

ME Mexican Hispanic (All Races) xMXA Mexican American Hispanic (All Races) XCEN Central American Hispanic (All Races) XGUA Guatemalan Hispanic (All Races) XHON Honduran Hispanic (All Races) XNIC Nicaraguan Hispanic (All Races) XPAN Panamanian Hispanic (All Races) XSLV Salvadoran Hispanic (All Races) X

PROPOSED

Code Description MegaWest UDS Racial CategoryIn MegaWest BEFORE ADDED

BOL Bolivian Hispanic (All Races) XCHL Chilean Hispanic (All Races) XCO Colombian Hispanic (All Races) xECU Ecuadoran Hispanic (All Races) XPRG Paraguayan Hispanic (All Races) XPRU Peruvian Hispanic (All Races) XURU Uruguayan Hispanic (All Races) XVNZ Venezuelan Hispanic (All Races) X

LAM Latin American Hispanic (All Races) XPU Puerto Rican Hispanic (All Races) xCU Cuban Hispanic (All Races) xDOM Dominican Black/African American X

PROPOSED

Systematic Implementation

• Conduct education and feedback sessions with leadership and staff

• Define issues and concerns and identify how you will respond to them

• Training and education components should include– Policy context– Revised policies– New fields– Screens– Leadership-staff materials– Staff scripts– FAQs and potential answers– Specific scenarios– Staff questions– Monitoring

In Summary

• If you are just getting started, start with the basics

• Collect more granular level data but

develop an approach for “rolling up” granular responses to the OMB categories for analytical and reporting purposes

• It can be done!

Related Publications• Hasnain-Wynia, R., Pierce, D. and Pittman, M. “Who, When and

How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals.” May, 2004. The Commonwealth Fund.

• Baker DW, Cameron KA, Feinglass J, Georgas P, Foster S, Pierce D, Thompson J., Hasnain-Wynia R. “Patients’ Attitudes Toward Health Care Providers Collecting Information About Their Race And Ethnicity.” J Gen Intern Med. Vol 20 (10). October 2005.

• Baker DW, Cameron KA, Feinglass J, Georgas P, Foster S, Pierce D, Thompson J, Hasnain-Wynia R. “Development and Testing of a System to Rapidly and Accurately Collecting Patients’ Race And Ethnicity.” Am J Public Health.Vol 96. no 3.

• Hasnain-Wynia, R and Baker D.W. “Obtaining Data on Patient Race, Ethnicity, and Primary Language in Health Care Organizations: Current Challenges and Proposed Solutions.”Health Services Research (August, 2006).

Next Steps

•Need to spread a clear message that providers have a key role in improving quality of care and reducing disparities

•HRET is working with hospitals and ambulatory care clinics to improve race/ethnicity data collection (toolkit: www.hretdisparities.org)

•HRET has trained staff at 10 hospitals to systematically collect data and link information to quality measures as part of the Robert Wood Johnson National Initiative, Expecting Success: Excellence in Cardiac Care. http://www.expectingsuccess.org/