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New Mexico Race/Ethnicity Data Improvement Project

Standardizing the Collection of Race, Ethnicity and Tribal Affiliation Data

Hospital onsite training
June 2011

New Mexico Department of Health
New Mexico Health Policy Commission
New Mexico Hospital Association
Health Insight

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Introduction

• Many initiatives have been created to increase quality of care
• The purpose of this project is to improve race, ethnicity and tribal affiliation in the hospital setting
• Partnership with New Mexico Department of Health and Health Insight

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Learning Objectives

After this training session, you will be able to:

• Describe the reasons for standardizing the collection of patient race, ethnicity and tribal affiliation;
• Understand the importance of using scripts to ask each patient to self-identify his/her race, ethnicity and tribal affiliation; and
• Address patient questions and concerns.

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What are disparities in healthcare quality?

• "Racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities"
• Less likely to receive:
• Cancer screening
• Cardiovascular therapy
• Kidney dialysis
• Transplants
• Curative surgery for lung cancer
• Hip and knee replacement
• Pain medicines in the ER

Source: Institute of Medicine. (2002). Unequal Treatment: Confronting Racial & Ethnic Disparities in Health.

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Pie chart. Black/African American 12%; American Indian/Alaska Native 1%; Asian 4%; Native Hawaiian and Other Pacific Islander 0%; Some Other Race 6%; Two or more races 2%; White 75%.

Pie chart. Black/African American 2%; American Indian/Alaska Native 9%; Asian 1%; Native Hawaiian and Other Pacific Islander 0%; Some Other Race 17%; Two or more races 4%; White 67%.

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Examples of Health Disparities

• Hispanics/Latinos living in the US are almost twice as likely to die from diabetes as are non-Hispanic whites
• Cardiovascular mortality rates in African Americans aged 35 to 64 are more than twice those in whites of the same age.
• American Indians and Alaska Natives die at higher rates than other Americans from tuberculosis (500% higher) and diabetes (177% higher).

http://www.ihs.gov/newsroom/factsheets/disparities/
http://www.cdc.gov/diabetes/pdfs/library/diabetesreportcard2014.pdf
http://www.medicareadvocacy.org/old-site/InfoByTopic/QualityOfCare/QualOfCare_FS_HCDisparities.PDF

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Result of Health Disparities

• Decreased quality of life
• Loss of economic opportunities
• Perceptions of injustice
• Early death

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Three Steps in Addressing Disparities

1. Collection of self-reported race, ethnicity and tribal affiliation data should be the same across healthcare facilities
• Categories are the same
• Patient self-reports
2. Find differences in patient care by comparing different racial/ethnic groups
3. Any differences found among racial/ethnic groups should be used to identify and develop quality improvement interventions targeted to specific patient populations

Disparities in care represent a failure in quality

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Why everyone should collect race, ethnicity and tribal affiliation data in the same way?

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Reasons to collect race/ethnicity/tribal affiliation in same way:

• To ensure that all patients receive high-quality care
• To identify and eliminate any healthcare disparities
• To plan quality improvement initiatives
• To better understand the types of patient your facility serves
• To ensure adequate interpreter services, patient information materials, and cultural competency training for staff
• To compare disease occurrences between racial and ethnic groups

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This is why YOU are Important!

• YOU have the power to collect race/ethnicity/tribal affiliation information in the correct way
• YOU will have a role in eliminating health disparities
• YOU will help patients receive the quality of care they deserve

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A Consequence of Inappropriate Racial/Ethnic Classification

• In Washington State Cancer Registry :
• American Indians were underestimated by one-third due to misclassification of other races
• Cancer was underestimated by 46.3% in American Indians in Washington State
• Appropriately classifying people will lead to more accurate counts
• Better specialized care, more screening, more interventions in target populations

Sugarman, J.R., et al., Improving American Indian Cancer Data in the Washington State Cancer Registry using linkages with the Indian Health Service and Tribal Records. Cancer, 1996. 78(7 Suppl): p. 1564-8.

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Increasing Legislative and Regulatory Attention to Race, Ethnicity, and Language Data

• American Recovery and Reinvestment Act of 2009
• Hospitals and providers will need to collect race, ethnicity and language data to be eligible for "meaningful use" incentive payments
• Race/Ethnicity categories to follow Office of Management and Budget guidelines
• Patient Protection and Affordable Care Act of 2010
• Health programs receiving federal money are required to collect race, ethnicity and language data
• Revised Joint Commission Standards
• Expand requirements related to the collection of patient language data, including preferred spoken language and written communication needs
• New requirement to collect patient-level demographic data on race and ethnicity
• State Reporting Requirements
• New Mexico Health Policy Commission rules require hospitals to collect and report race, ethnicity and tribal affiliation data (7.1.4 NMAC Data Reporting Requirements for Health Care Facilities)

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Components of Appropriately Collecting Race, Ethnicity and Tribal Affiliation

• Use the same categories across the organization
• Patient self-reports race, ethnicity and tribal affiliation
• No more "eyeballing" the patient
• Data is collected from all patients
• Allow patients to choose multiple races and tribal affiliations
• Telling the patient why we are collecting his/her race, ethnicity and tribal affiliation

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"Although the collection of race, ethnicity and language data does not necessarily result in actions that will reduce disparities and improve care, the absence of the data guarantees that none of that will occur."

Source: IOM (Institute of Medicine). 2009. Race, Ethnicity and Language Data: Standardization for Health Care Quality Improvement. Washington, DC.

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Minimum Race, Ethnicity, and Tribal Affiliation Categories that NM Hospitals will Report:

Ethnicity Hispanic /Latino Not Hispanic/Latino Declined* Unknown*	Race American Indian/Alaska Native Asian Black or African American Native Hawaiian/Pacific Islander White Declined* Unknown* Other Race*	Tribal Affiliation Acoma Pueblo Cochiti Pueblo Isleta Pueblo Jemez Pueblo Jicarilla Apache Nation Kewa/Santo Domingo Pueblo Laguna Pueblo Mescalero Apache Nation Nambe Pueblo Navajo Nation Ohkay Owingeh Pueblo Picuris Pueblo Pojoaque Pueblo San Felipe Pueblo San Ildefonso Pueblo Sandia Pueblo Santa Ana Pueblo Santa Clara Pueblo Taos Pueblo Tesuque Pueblo Zia Pueblo Zuni Pueblo Other Tribal Affiliation Declined Unknown
*This designation indicates a modification to the OMB race/ethnicity categories.

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Recommended Questions for Patient's Race, Ethnicity and Tribal Affiliation

• Ethnicity: "First, do you consider yourself Hispanic or Latino?"
• Race: "Which category or categories best describe your race?"
• Tribal Affiliation: If the patient describes his/her race as American Indian or Alaska Native, then ask tribal affiliation: "What is (are) your tribe(s) or pueblo(s)?"

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Recommended Script for Patient's Ethnicity

"First, do you consider yourself Hispanic or Latino?"

• Yes
• No
• Declined
• Unknown

Source: Adapted from HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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Recommended Script for Patient's Race

"Which category or categories best describe your race?"

• American Indian or Alaska Native
• Asian
• Black or African American
• Native Hawaiian or Other Pacific Islander
• White
• Declined
• Unknown
• Other Race

Source: Adapted from HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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Recommended Script for Patient's Tribal Affiliation

If the patient describes his/her race as American Indian or Alaska Native, then ask tribal affiliation: "What is (are) your tribe(s) or pueblo(s)?"

• Acoma Pueblo
• Cochiti Pueblo
• Isleta Pueblo
• Jemez Pueblo
• Jicarilla Apache Nation
• Kewa/Santo Domingo Pueblo
• Laguna Pueblo
• Mescalero Apache Nation
• Nambe Pueblo
• Navajo Nation
• Ohkay Owingeh Pueblo
• Picuris Pueblo
• Pojoaque Pueblo
• San Felipe Pueblo
• San Ildefonso Pueblo
• Sandia Pueblo
• Santa Ana Pueblo
• Santa Clara Pueblo
• Taos Pueblo
• Tesuque Pueblo
• Zia Pueblo
• Zuni Pueblo
• Other Tribal Affiliation
• Declined
• Unknown

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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.
• Not Hispanic or Latino: A person who is not of Hispanic or Latino ethnicity.
• Declined*: A person who is unwilling to provide an answer to the ethnicity question or cannot identify him/herself as Hispanic/Latino or Not Hispanic/Latino.
• Unknown*: 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.

*This designation indicates a modification to the OMB race/ethnicity categories. Source: Adapted from HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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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,

Black or African American: A person having origins in any of the black racial groups of Africa.

Native Hawaiian or Other Pacific Islander: A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.

White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.

Declined*: A person who is unwilling to choose/provide a race category or cannot identify him/herself with one of the listed races.

Unknown*: 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.

Other Race*: A person who does not self-identify him/herself with any of the listed race categories.

*This designation indicates a modification to the OMB race/ethnicity categories. Source: Adapted from HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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"...but we already collect this information!"

• That may be true, but results of a national study that examined race, ethnicity and language data collection in hospitals showed:
• Even if hospitals are collecting the data, not everyone is doing a good job. We need uniform categories.
• Many registrars collect the information by observing the patient and guessing. We must allow the patient to self-identify.
• Applies to all patient care registration settings.

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How will we let our patients know?

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How will patients be informed about the new questions?

• Most patients believe healthcare providers should collect race and ethnicity data
• Letting your patients know that it is about improving quality helps everyone's comfort level
• Use the tools provided to assist in explaining information to patients

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Resources and Tools

• Staff Script
• Staff FAQ Sheet
• Patient Response Matrix
• Patient Flyer
• Patient FAQ Sheet

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Where are data collected?

• When scheduling/registering an office visit
• Face-to-face
• Written registration forms
• Telephone
• Upon admission or registration at the hospital
• Face-to-face
• Telephone registration
• All points of entry (inpatient, outpatient, emergency department, cardiac catheterization lab, etc.)
• "Downstream effect" - Registries and other databases

Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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What do you think about collecting this information?

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Addressing Patient Concerns Response Matrix - Routine

Patient Response	Suggested Response	Hints	Code
"I'm American."	Would you like to use an additional term, or would you like me to just put American?		American or others if specified
"Can't you tell by looking at me?"	Well, usually I can. But sometimes I'm wrong, so we think it is better to let people tell us. I don't want to put in the wrong answer. I'm trained not to make any assumptions.
"I was born in Nigeria, but I've really lived here all my life. What should I say?"	That is really up to you. You can use any term you like. It is fine to say that you are Nigerian.	It's best not to ask for this information again.

Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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Patients Returning

Patient Response	Suggested Response	Hints	Code
A patient returning for care with the DECLINED code.	DO NOT ASK AGAIN
A patient returning for care with the "UNKNOWN" or "Unable to provide information" code.	Proceed to ask for the information per routine.
A patient returning for care one year or more from the time of last visit.	Verify information reported by the patient during the last visit.

Source: Adapted from HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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Tougher Questions These Generally Indicate DECLINED Code

Patient Response	Suggested Response	Hints	Code
"I'm human."	Is that your way of saying that you don’' want to answer the question? If so, I can just say that you didn't want to answer.	DON'T SAY - I'll just code as a declined	Declined
"It's none of your business."	I'll just put down that you didn't want to answer, which is fine.	DON'T SAY -I'll just code as a declined.	Declined
"Why do you care? We're all human beings."	Well, many studies from around the country have shown that a patient's race and ethnicity can influence the treatment they receive. We want to make sure this doesn't happen here, so we use this information to check and make sure that everyone gets the best care possible. If we find a problem, we fix it.	If patient still refuses, DON'T SAY - I'll just code as a declined.	Declined

Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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Tougher Questions (cont'd).

Patient Response	Suggested Response	Hints	Code
"Are you saying that this has happened at _______?"	We don't know, but we want to make sure that all our patients get the best care possible.
"Who looks at this?"	The only people who see this information are registration staff, administrators for the hospital, and the people involved in quality improvement.
"Are you trying to find out if I'm a US citizen?"	No. Definitely not!! Also, you should know that the confidentiality of what you say is protected by law, and we do not share this information with anyone.	Patient Response

Source: Adapted from HRET Toolkit, http://www.hretdisparities.org/ accessed on Nov 17, 2010

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Scenario 2

Practicing the "Tough" Questions

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Questions?

Elayne Villa
Project Coordinator
Health Insight
evilla@nmmra.org
(505) 998-9758

Noell Stone
Project Director
Noell.stone@state.nm.us
505-476-3584

Nicole Katz
Epidemiologist
NM DOH
Nicole.katz@state.nm.us
505-476-3739