Collecting Race and Ethnicity Data: Barriers and Solutions Romana Hasnain-Wynia, PhD Health 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-Hispanic21.7 Hispanic 14.8 Asian33.2 Foreign-born25.1 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-Hispanic19.8 Hispanic 12 Asian57.3 Foreign-born29.8 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 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 Agree43% Somewhat Agree37% Unsure6% Somewhat Disagree10% Strongly Disagree4% Source: Baker, DW et al. “Patients Attitudes Toward Health Care Providers Collecting Information About Their Race and Ethnicity.” Journal of General Internal Medicine

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 Agree93% 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 all34% A little concerned 15% Somewhat concerned 20% Very concerned31%

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 “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 same30% 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, MPH Montefiore Medical Center Bronx, NY, Expecting Success Site

CodeDescriptionRacial CategoryADDED CURRENTLY IN SYSTEM NAAmerican Indian/Alaska Native Native American/Alaska Nativex ASAsian x BLBlack/African American x COColumbianHispanic (All Races)x CUCubanHispanic (All Races)x HIHispanic otherHispanic (All Races)x MEMexicanHispanic (All Races)x NHNative HawaiianPacific Islanderx OPIOther Pacific IslanderPacific Islanderx PUPuerto RicanHispanic (All Races)x UNUnknown/UnreportedUnreported/Unknownx WHWhiteWhite (non-Hispanic)x

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, 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 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: 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.