Collecting Race and Ethnicity Data: Barriers and Solutions

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Collecting Race and Ethnicity Data Barriers and
Solutions

• Romana Hasnain-Wynia, PhD
• Health Research and Educational Trust/AHA
• November 3, 2006

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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

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Race/Ethnicity Data

• Why Collect It
• Current Practices
• Barriers

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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

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2000 Tuberculosis Rates per 100,000 population,
by Race/Ethnicity and Foreign Born-Status
(Newark, NJ)
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
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2000 Tuberculosis Rates per 100,000 population,
by Race/Ethnicity and Foreign Born-Status (Jersey
City, 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
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Common Barriers To Collecting Data

• Appropriate categories
• Patients perceptions/language and culture
• Staff discomfort in explicitly asking patients to
  provide this information.

• Validity and reliability of data
• Legal concerns
• System/organizational barriers

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Current PracticesNational Survey of Hospitals
Who, When, and How The Current State of Race,
Ethnicity, and Primary Language Data Collection
in Hospitals, 2004 CMWF
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Recommendations For Standardization

• Who provides the informationshould always be
  patients or their caretakers. Should never be
  done by observation alone
• When to collectupon 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 morefine-grainedcategories
  if needed
• Where should data be storedin a standard format
  for easy linking to clinical data
• Patient Concernsshould be addressed upfront and
  clearly prior to obtaining information
• Staff training---need to provide on-going
  training and evaluation

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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)

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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 Care Providers Collecting
Information About Their Race and Ethnicity.
Journal of General Internal Medicine. 2005.
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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

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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

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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 ones care (personal
  gain)
• .

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Found that the Monitoringrationale 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.

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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.

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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

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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

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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

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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

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Problems with Splitting Race and EthnicityOMB
Categories
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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

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Fields and Categories

• 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

• Process
• Required fields
• Ethnicity first
• Ethnicity
• Hispanic or Latino
• Not Hispanic or Latino
• Declined
• Patient unavailable
• Preferred language
• Numerous
• Declined
• Other
• Patient unavailable

Source Rohit Bhalla, MD, MPH Montefiore Medical
Center Bronx, NY, Expecting Success Site
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Systematic Implementation

• 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

• Conduct education and feedback sessions with
  leadership and staff
• Define issues and concerns and identify how you
  will respond to them

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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!

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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).

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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.expectingsu
  ccess.org/