Do Ask, Do Tell.


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Poster presented at Diversity Rx conference, Minneapolis MN. Sept 08. Querying patients about race and ethnicity.

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Do Ask, Do Tell.

  1. 1. DO ASK, DO TELL. How to query patients about race and ethnicity Yiscah Bracha, MS 1 ; Kevin Larsen, MD 2 1 Center for Urban Health, Minneapolis Medical Research Foundation and University of Minnesota, 2 Hennepin County Medical Center. <ul><li>Background </li></ul><ul><li>National research shows: </li></ul><ul><li>Not all provider groups collect patient race data </li></ul><ul><li>Those that do find querying is uncomfortable: </li></ul><ul><ul><li>Patients feel invasion of privacy </li></ul></ul><ul><ul><li>Patients not sure how data will be used </li></ul></ul><ul><ul><li>Patient resistance makes registrars uncomfortable </li></ul></ul><ul><li>Goal at HCMC: </li></ul><ul><li>Establish method to query patients about </li></ul><ul><ul><li>Race & ethnicity </li></ul></ul><ul><ul><li>Other personal & demographic characteristics </li></ul></ul><ul><li>Qualities of method </li></ul><ul><ul><li>Respectful towards patients </li></ul></ul><ul><ul><li>Quick & easy to administer </li></ul></ul><ul><ul><li>Captures clinically important differences </li></ul></ul><ul><ul><li>Enables reporting using OMB classification </li></ul></ul>Experiment showed the best way to ask at HCMC: <ul><li>Asking Hispanic ethnicity first didn’t work </li></ul><ul><ul><li>Next Q about race confused patients </li></ul></ul><ul><ul><li>Too many Qs if we also ask birthplace </li></ul></ul><ul><li>Asking general ethnicity first didn’t work </li></ul><ul><ul><li>Too many choices </li></ul></ul><ul><ul><li>Patients asked: “What is the difference between race and ethnicity?” </li></ul></ul>Results <ul><li>“ What is your race? (You may choose more than one)” </li></ul><ul><li>White </li></ul><ul><li>Black or African American </li></ul><ul><li>Hispanic </li></ul><ul><li>Asian </li></ul><ul><li>Native American </li></ul><ul><li>Other </li></ul>Researchers use the data that providers obtain: <ul><li>Providers need </li></ul><ul><li>Ways to mitigate against patient resistance </li></ul><ul><li>Minimal administrative burden </li></ul><ul><ul><li>Obtaining data (staff assessment common) </li></ul></ul><ul><ul><li>Managing data </li></ul></ul><ul><li>Response choices that reflect local environment </li></ul><ul><li>Researchers want </li></ul><ul><li>Rigor & standardization in how questions are asked </li></ul><ul><li>Clean data: </li></ul><ul><ul><li>“ Accurate” </li></ul></ul><ul><ul><li>“ Rolled up” to common categories </li></ul></ul><ul><li>Common response choices for sites across the US </li></ul><ul><li>Office of Management and Budget Statistical Directive 15 </li></ul><ul><li>Are you of Hispanic origin? </li></ul><ul><li>Yes </li></ul><ul><li>No </li></ul><ul><li>What is your race? </li></ul><ul><li>White </li></ul><ul><li>Black or African American </li></ul><ul><li>Asian </li></ul><ul><li>Pacific Islander </li></ul><ul><li>Native American or Alaskan native </li></ul><ul><li>Other </li></ul><ul><li>OMB standard </li></ul><ul><li>Does not reflect how most people self-identify, BUT </li></ul><ul><li>Reified in the US through constant use: </li></ul><ul><ul><li>Census </li></ul></ul><ul><ul><li>Applications for jobs, schools, loans, housing, etc. </li></ul></ul><ul><ul><li>Surveys & questionnaires </li></ul></ul><ul><li>Unlikely to undergo massive change </li></ul><ul><li>“ What is your ethnicity (your ethnic identity)?” 60+ choices suggested by nationality, religion, language, race. Examples: </li></ul><ul><li>Mexican </li></ul><ul><li>Somali </li></ul><ul><li>Hmong </li></ul><ul><li>Russian …. </li></ul>Some ruminations and conclusions: <ul><li>Each method tested during actual registration process </li></ul><ul><li>Test conducted in Jan & Feb 2006 </li></ul><ul><li>Four registrars, 2 who staffed Spanish telephone line </li></ul><ul><li>Each method tested by 2+ registrars on 2+ days </li></ul><ul><li>Testing continued until at least 30 responses obtained </li></ul><ul><li>Asking race first (with OMB responses) </li></ul><ul><ul><li>Worked for U.S. born </li></ul></ul><ul><ul><li>Worked for Hispanic if response choices include Hispanic </li></ul></ul><ul><ul><li>Did not work for foreign-born non-Hispanic, but ….could overcome problems with followup ethnicity Q </li></ul></ul>What worked, what didn’t: HCMC Experiment <ul><li>The OMB Standard: </li></ul><ul><li>Confusing or meaningless for those not born in the US. </li></ul><ul><li>Blurs important distinctions, such as: </li></ul><ul><ul><li>American- vs. African-born Black </li></ul></ul><ul><ul><li>Hmong vs. Chinese vs. Indian </li></ul></ul><ul><li>Creates strange bedfellows </li></ul><ul><ul><li>Iranian & Brit both classified as “White” </li></ul></ul><ul><ul><li>Israelis classified as “White” (even though Israel is one of the most racially diverse countries in the world) </li></ul></ul><ul><li>Nearly 2/3 of Hispanics do not answer the race question (known even before the standard was released) </li></ul><ul><li>Ambiguous: Are Spaniards ‘Hispanic’? What about indigenous people of Ecuador? </li></ul><ul><li>In health care settings, repeatedly cited as a source of confusion and distress </li></ul>Conflicts revealed Data and disparities: <ul><li>What data are required? </li></ul><ul><li>Discrimination: Need to know how the patient is perceived. Staff eyeball of race could be OK! </li></ul><ul><li>Culturally influenced behavior & beliefs. Need to know how patient self-identifies, but … self-identification changes with circumstance & time. What does “accuracy” mean?! </li></ul><ul><li>Paradox: </li></ul><ul><li>No one wants ascribed identities, but… </li></ul><ul><li>If disparities are due to discrimination, ascribed identities matter </li></ul><ul><li>Everyone wants “accuracy”, but… </li></ul><ul><li>Self-identification can change, so “accuracy” is only momentarily reliable </li></ul>A PROPOSAL Question 1: “ What race do most people think you are?” Response choices: OMB categories plus Hispanic Question 2: “ How do you think of yourself?” Response choices: Open-ended, locally specific, evolving dynamically Patient identity questions Marital status Race or ethnicity Religious preference Race or ethnicity Language(s) Birthplace Querying methods for race/ethnicity 1. Race? (OMB list + Hispanic) 2. Ethnicity? (Open-ended) Method Three 1. Race? (OMB list + White Hispanic Black Hispanic) 2. Ethnicity? (Open-ended) Method Four 1. Ethnicity? (Open-ended) 2. Race? (OMB list) 1. Hispanic? (y/n) 2. Race? (OMB list) 3. Ethnicity? (Open-ended) Method Two Method One 92.3 94.9 100.0 85.5 Answered ethnicity Q (%) 1.2 1.0 0.9 1.1 Average administration time (mins) 2.6 0.0 3.6 21.1 No answer to race Q (%) 92.3 100.0 87.5 78.9 Chose from available responses to race Q (%) Four Three Two One 39 59 56 76 Interviews (n) Method Outcomes of Interest Self-identity Behavior & beliefs shared with cultural group Biological Biology, physiology Ascribed identity Adverse discrimination by others Data required Source of adverse disparities