Collecting RaceEthnicity Data

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Collecting Race/Ethnicity Data In Wisconsin
Healthcare Facilities Presentation to Wisconsin
Healthcare Facilities February 28, 2007 10 am to
12 noon
Debbie Pierce Health Research and Educational
Trust www.hret.org

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The Health Research and Educational Trust
(www.hret.org)
HRET Vision People, communities and those who
serve them working together to improve
health HRET Mission Transforming Health Care
Through Research and Education www.hretdisparities
.org (Toolkit)


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Todays Agenda

• Brief Background on Disparities
• Overview of Data Collection Process
• Patient Question Matrix
• How Data Can be Used/Summary
• Questions/Answers

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Purpose of this Training

• To provide education on why this data collection
  is required
• To systematically collect data on patient race
  and ethnicity
• To provide tools and information to reduce
  patient and staff discomfort with process

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Program Sponsors
Wisconsin Cancer Council www.wicancer.org Wiscon
sin Cancer Reporting System (WCRS) http//www.
dhfs.wisconsin.gov/wcrs/ Wisconsin Department of
Health and Family Services http//www.dhfs.wiscon
sin.gov Wisconsin Hospital Association
Information Center (WHAIC) www.whainfocenter.com

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Wisconsin Cancer Reporting System (WCRS)

• The only state-wide registry under statutory
  mandate to collect and analyze Wisconsin resident
  cancer data
• Reports the new cancer occurrence, death rates
  and cancer stage
• Information is provided by race and ethnicity to
  better target cancer surveillance efforts in
  Wisconsin

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• Wisconsin Cancer Council
• Coalition of 40 statewide and regional
  organizations
• Oversight body for State Comprehensive Cancer
  Control (CCC) Plan
• Focus on entire cancer continuum
• Prevention-screening-treatment-survivorship-pallia
  tive care-date collection and reporting

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• Wisconsins Comprehensive Cancer Control Plan
• Priority Improve Racial Ethnic Cancer Data
  Collection
• Chapter focus on Data Collection and Reporting
• Addresses cancer health disparities

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Wisconsin Hospital Association Information Center
(WHAIC)

• A wholly owned subsidiary of the Wisconsin
  Hospital Association
• Data collection began January 2004 under a
  contract with the Wisconsin Department of
  Administration
• Collects and reports charge and service data
  about Wisconsin hospitals and ambulatory surgery
  centers

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Admitting/Registration Role

• Admitting/Registration the key is to collect
  data
• Consistently
• Accurately
• Professionally
• Completely

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Example of Hospital Registration Data Flows
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Background in Disparities

• Section I

Break For Brief Question And Answer Session
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Questions

• WHY and HOW do disparities occur in healthcare?
• HOW can facilities collect relevant data

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A National Problem

• African Americans are
• Less likely to have a kidney transplant, surgery
  for lung cancer, bypass surgery.
• More likely to have a foot amputation.
• More likely to die prematurely
• Latinos/Hispanics are
• Less likely to receive pain medications
• What about other groups? Chinese? Vietnamese
  Pakistanis? Nigerian? Somali? Haitian, etc.

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A State Problem

• African-American women in Wisconsin are more
  likely to die from breast cancer than white
  women
• African-American mortality rates are 77 higher
  for prostate cancer than white rates
• African-American mortality rates are 60 higher
  for lung cancer than white rates

Source American Cancer Society, Wisconsin Facts
and Figures, 2007
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Evidence of Racial and Ethnic Disparities in
Healthcare

• Disparities consistently found across a wide
  range of disease areas and clinical services
• Disparities are found even when clinical factors,
  are taken into account

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..Continued

• Disparities are found across a range of clinical
  settings, including public and private hospitals,
  teaching and non-teaching hospitals, ambulatory
  care settings, etc.
• Disparities in care are associated with higher
  mortality among minorities (e.g., Bach et al.,
  1999 Peterson et al., 1997 Bennett et al.,
  1995)

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Wisconsins Changing Demographics,Changing Needs

• African-Americans are the largest racial/ethnic
  minority population in the state, represent 5.6
  of WI population and increased 24 from 1990 to
  2000.
• In 2000, there was a 68 increase in the Asian
  population from the 1990 Census.
• The Hmong comprised 38 of the Asian population,
  the largest Asian population in the state.
• The Hispanic/Latino population in Wisconsin
  increased by 107 between 1990 and 2000.
• Source The Health of Racial and Ethnic
  Populations in Wisconsin 1996-2000, Minority
  Health Program, Division of Public Health, WI
  Department of Health and Family Services.

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Wisconsin and USRacial/Ethnic Composition, 2005

• Population, 2005
• Population, percent change from 2000
• Whites, Non-Hispanic, percent
• Blacks, African-Americans, percent
• Asian, percent
• Am. Indian, Alaska Native, percent alone or in
  combination with other races
• Hispanic, percent

WI US 5,536,201
296,410,404 3.2 5.3 86.0
66.9 6.0 12.8 2.0
4.3 1.3 1.5 4.5
14.4

Source Tabulations based on 2000 data from U.S.
Census Bureau
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Hmong Population Top States in USA

Source US Census Bureau
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Research Findings on Equity

• Domain of Equity is not top of mind for
  senior administrative and clinical leaders.
• Disparities is not our issue. They happen
  before and after the hospital.
• Great concern that addressing disparities
  somehow acknowledges discrimination or otherwise
  bad behavior.

Outcomes are based on research study - 42 key
informant interviews Bruce Siegel, MD, MPH
Planning Grant for Robert Wood Johnson for
Expecting Success, 2004
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Research Findings on EquityClinical Leadership

• N. Lurie, et al. Circulation (2005)
• 344 Cardiologists
• -34 agree disparities exist overall
• -12 believe disparities exist in own hospital
• -5 believe disparities exist in own practice
• S. Taylor, et al. Annals of Thoracic Surgery
  (2005)
• 208 Cardiovascular Surgeons
• -13 believe disparities occur often or very
  often
• -3 believe disparities occur often or very often
  in own practice

Findings pulled from 2 research articles
referenced above.
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Section II
Race and Ethnicity Data Collection The Why?

• Break for Brief Question and Answer Session

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Race/Ethnicity Data Collection by Healthcare
Facilities

• Why Collect It
• Current Practices
• Barriers
• Race and Ethnicity Data Collection

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Why Collect Data On Patient Race/Ethnicity
Internal Factors

• Valid and reliable data are fundamental building
  blocks for identifying differences in care and
  developing targeted interventions
• Being responsive to communities Pressing
  community health problems such as disparities in
  care can be addressed more effectively if health
  care organizations and health professionals build
  the trust of the community by documenting
  accomplishments

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Why Collect Data On Patient Race/Ethnicity
Internal Factors

• Link race and ethnicity information to quality
  measures to examine disparities and undertake
  targeted interventions
• Ensure the adequacy of interpreter services,
  patient information materials, and cultural
  competency training for staff

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Why Collect Data Continued

• External Factors
• Reporting to the Joint Commission on
  Accreditation of Healthcare Organizations
• Reporting to CMS (payer, purchaser regulator,
  insurer, works through QIOs)
• State mandates (WI Cancer Registry, WHA
  Information Center)
• Additional federal requirements

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Wisconsins Different Reporting Requirements

• There are different reporting standards required
  by different healthcare data collection agencies
  in Wisconsin
• State standards are often driven by national data
  collection efforts
• OMB codes used as the basis for WHAIC standards
  are less detailed that CDC codes used by WCRS

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WCRS Race Category Rationale

• Because race has a significant association with
  cancer rates and treatment outcomes.
• The CDC race codes allow calculation of
  race-specific incidence rates.
• The full coding system should be used to allow
  accurate national comparison and collaboration.

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WCRS Ethnicity Category Rationale

• Ethnic origin has a significant association with
  cancer rates and outcomes.
• Hispanic populations have different patterns of
  occurrence of cancer from other populations.
• Persons of Spanish or Hispanic origin may be of
  any race.

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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.

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Race and Ethnicity Data CollectionWho, Where,
What and How

• Section III

Break For Brief Question And Answer Session
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Race and Ethnicity Data Collection

• Addressing Discomfort
• Categories
• Staff training

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Barriers to Obtaining Race/Ethnicity Information

• 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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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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Proposed HRET Race Definitions

• American Indian or Alaska Native A person
  having origins in any of the original peoples of
  North and South America (including Central
  America), and who maintains tribal affiliation or
  community attachment.
• Asian A person having origins in any of the
  original peoples of the Far East, Southeast Asia,
  or the Indian subcontinent, including, for
  example, Cambodia, China, India, Japan, Korea,
  Malaysia, Pakistan, the Philippine Islands,
  Thailand, and Vietnam. Also includes Hmong.
• Black or African American A person having
  origins in any of the black racial groups of
  Africa includes terms such as Haitian or
  Negro.
• Native Hawaiian or Other Pacific Islander A
  person having origins in any of the original
  peoples of Hawaii, Guam, Samoa, or other Pacific
  Islands.

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Proposed HRET Race Definitions

• White A person having origins in any of the
  original peoples of Europe, the Middle East, or
  North Africa.
• Multiracial A person having more than one or a
  combination of the above origins.
• Declined A person who is unwilling to
  choose/provide a race category or cannot identify
  him/herself with one of the list races.
• Unavailable Select this category if the patient
  is unable to physically respond, there is no
  available family member or caregiver to respond
  for the patient, or if for any reason, the
  demographic portion of the medical record cannot
  be completed. Hospital systems may call this
  field Unknown, Unable to Complete, or Other.

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Race Translation Table WCRS to WHAIC Codes
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Proposed HRET Ethnicity Definitions

• Hispanic or Latino A person of Cuban, Mexican,
  Puerto Rican, South or Central American, or other
  Spanish culture or origin, regardless of race.
• Non-Hispanic or Latino Patient is not of
  Hispanic or Latino ethnicity.
• Declined A person who is unwilling to
  choose/provide a race category or cannot identify
  him/herself with one of the list races.
• Unavailable Select this category if the patient
  is unable to physically respond, there is no
  available family member or caregiver to respond
  for the patient, or if for any reason, the
  demographic portion of the medical record cannot
  be completed. Hospital systems may call this
  field Unknown, Unable to Complete, or
  Other.

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Hispanic Ethnicity Translation Table WCRS to
WHAIC Codes
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Ethnicity Using Proposed HRET Codes

• 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.
• First, do you consider yourself Hispanic/Latino?
• Yes
• No
• Declined
• Unavailable

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Race Using HRET Categories

• 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, Other, Unable to Complete)

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WHAIC/WCRS Detailed Level Data

• WHAIC/OMB race and ethnicity categories are the
  minimum level collected by health care
  facilities.
• Since 1995 WCRS has collected more detailed data
  required by the CDC, from almost half of
  reporting facilities in Wisconsin.
• Div. of Public Health has long term goal for
  state and federal standards to have every
  facility collecting more detailed level data.

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Are Categories a Problem?

• 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?
• 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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Patient Question Matrix

• Section IV

Break For Brief Question And Answer Session
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Handling the Responses from Patients Matrix

• We realize that patients might be concerned and
  might feel uncomfortable.
• They will have questions and comments.
• We want you to feel comfortable answering
  whatever questions patients ask.
• The Patient Response Matrix is based on actual
  patient answers to the race/ethnicity questions.

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Handling the Responses from Patients Matrix

• A tool to help you respond in the best possible
  manner
• Use a common sense, non-confrontational approach
• Dont push the issue if patient does not want to
  answer
• Use a comforting tone, voice and gestures
• Thank the patient after registration is complete

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How Healthcare Facilities, State and National
Government Use These DataSummary and Discussion

• Section V

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Systematic Implementation

• Training and education components should include
• New fields
• Screens
• 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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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)

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State and National Cancer Data Resources

• CDC Wonder- National Program of Cancer Registries
  public information data
• http//wonder.cdc.gov
• Wisconsin Facts Figures 2007
• http//www.dhfs.wisconsin.gov/wcrs
• US Cancer Statistics 2002 Incidence and mortality
  http//www.cdc.gov/cancer/npcr/uscs/

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Contact Information

• Laura Stephenson, Wisconsin Cancer Reporting
  System
• stephla_at_dhfs.state.wi.us 
• Debbie Rickelman, Wisconsin Hospital Association
  Information Center
• drickelman_at_wha.org 
• Debbie Pierce, HRET
• dpierce_at_aha.org
• www.hret.org
• www.hretdisparities.org

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Language Background

• If Time Permits

Break For Brief Question And Answer Session
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Language

• Over 300 different languages are spoken in the
  U.S. and nearly
• 47 million people (18 of the U.S. population)
  speak a language
• other than English at home. (U.S. Census
  Bureau 2003)

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Languages in Wisconsin
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Primary Language

• What language do you feel most comfortable
  speaking with your doctor or nurse (Patients
  Primary Language)?

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Contribution

• IOM report, Crossing the Quality Chasm, calls for
  national consensus on comprehensive standards
  for the definition, collection, coding, and
  exchange of clinical data.
• IOM report, Unequal Treatment, calls for the
  collection and reporting of data on health care
  access and utilization by patients race,
  ethnicity, socioeconomic status, and where
  possible, primary language
•