Nuts and Bolts of Collecting Race, Ethnicity, and Primary Language Information From Patients

Presented To

Admitting/Registration Staff

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© 2009 by the Health Research and Educational Trust

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Today’s Objectives

• Review the purpose of the data collection • Review current patient registration screens • Review changes that will be made to the registration screens • Review Patient Response Matrix © 2009 by the Health Research and Educational Trust

Purpose of This Initiative

• • • We are implementing a systematic method of collecting data on race, ethnicity, and primary language directly from patients or their caregivers. The purpose of collecting this information is to ensure that all patients receive high-quality care. [Note: If targeting specific population groups, insert more info here.] Our experience will help inform hospitals across the country on improving quality of care for all populations.

© 2009 by the Health Research and Educational Trust

Admitting/Registration Role

• Admitting/Registration is key to collecting this data: – Consistently – – – Accurately Professionally Completely • The new system for data collection will be implemented _____(specify all inpatient, ED admissions, outpatient clinics, etc…) © 2009 by the Health Research and Educational Trust

Institute of Medicine’s Recommended Variables for Race, Ethnicity and Primary Language (2009)

Source: IOM Report: Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement

a The preferred order of questioning is Hispanic ethnicity first, followed by race, and then granular ethnicity.

b The U.S. Census Bureau received OMB permission to add “Some other race” to the standard OMB categories in Census 2000 and subsequent Census collections.

c Additional codes will be needed for categories added to the CDC/HL7 list.

d Need is determined on the basis of two questions, asking about proficiency first. Limited English proficiency is defined for health care purposes as speaking English less than very well.

Race Definitions Office of Management and Budget (OMB)

• • •

American Indian or Alaska Native:

North and South America (including Central America), and who maintains tribal affiliation or community attachment. A person having origins in any of the original peoples of •

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.

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.

*OMB-Mod: This symbol indicates a modification we have made to the OMB recommendations.

© 2009 by the Health Research and Educational Trust

Race Definitions OMB

• • • •

White:

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

Some Other Race

: A person who does not self-identify with any of the OMB race categories.

*OMB-Mod Declined

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

*OMB-Mod 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.”

*OMB-Mod *OMB-Mod: This symbol indicates a modification we have made to the OMB recommendations.

© 2009 by the Health Research and Educational Trust

Ethnicity Definitions OMB

• • • •

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 provide an answer to the question of Hispanic or Latino ethnicity.

*OMB-Mod 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.”

*OMB-Mod *OMB-Mod: This symbol indicates a modification we have made to the OMB recommendations.

© 2009 by the Health Research and Educational Trust

Ethnicity Screen

Now I would like you to tell me your race and ethnic background. We use this information 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

© 2009 by the Health Research and Educational Trust

Race Screen

Which category best describes your race?

• • • • • • • • American Indian/Alaska Native Asian Black/African American Native Hawaiian/Other Pacific Islander White Some Other Race Declined (This is a flag indicating that the individual did not want to answer this question —do not ask again during the same or subsequent visit.) Unavailable (This is a flag indicating that the person could not answer the question. May ask the person again.) © 2009 by the Health Research and Educational Trust

Using OMB (modified) 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 -Some Other Race -Declined -Unavailable/Unknown © 2009 by the Health Research and Educational Trust

Granular Ethnicity

• Since disparities can exist within OMB race and Hispanic ethnicity categories, the IOM subcommittee recommends a separate question to collect data on granular ethnicity.

• Individual organizations should select categories that represent their service population from a national list of standardized categories.

• The list should include an open-ended response option of “Other, please specify:__” for persons whose granular ethnicity is not included as a response option. © 2009 by the Health Research and Educational Trust

Granular Ethnicity Screen

I would like you to describe your race or ethnic background. You can use specific terms such as Korean, Mexican, Haitian, Somali.

• • • Response Categories: Locally relevant list of categories selected from a national standard set Other, please specify:__ OR Open-ended question with responses coded from a national standard set © 2009 by the Health Research and Educational Trust

Language Data Collection

The IOM subcommittee recommends identifying spoken language needs by asking the following questions in order: 1.

How well an individual believes he/she speaks English 2.

The language he/she prefers to use to communicate with his/her health care providers © 2009 by the Health Research and Educational Trust

English Proficiency Screen

How would you rate your ability to speak and understand English?

• • • • • • Very Well Well Not Well Not at all Declined Unavailable The next slide provides a sample screen.

© 2009 by the Health Research and Educational Trust

Primary Language

What language do you feel most comfortable speaking with your doctor or nurse (patient’s primary language)?

• • Provide a list of locally relevant language categories: Language categories should be selected from a national standard set such as that from the Census or the IOM report

(available in the Toolkit section Collecting the Data —The Nuts and Bolts/Which Categories to Use/Language Categories).

Local lists should provide an “Other, please specify:__” option for individuals whose preferred language is not included.

The next slide provides a sample screen.

© 2009 by the Health Research and Educational Trust

New Table : Primary Language

Addressing Concerns from Patients

• General rule of thumb: If a person does not want to answer these questions, move on. Do not force the issue. Simply record “Declined.” • In some instances, people may have questions or may be confused. The following slides provide a sample of questions and responses. These are not meant to be exhaustive.

• You are the experts —modify as needed.

© 2009 by the Health Research and Educational Trust

Handling the Responses from Patients: Basic Guidelines

• • • • • Use common sense. Decide whether you will provide a list of categories (either Census or OMB) or whether you will let patients self report based on their own descriptions. Allow patients to respond and use as much of their own description as possible. Respect their descriptions (or choices if providing categories).

Avoid words that might be considered confrontational.

© 2009 by the Health Research and Educational Trust

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 any questions patients ask. The

Patient Response Matrix

is based on actual patient answers to the race/ethnicity questions. The matrix is intended to be used as a tool to help you respond in the best possible manner. Again, the best course of action is to use common sense, a nonconfrontational approach, and to take care not to push the issue if it is clear that the patient does not want to respond to the question.

© 2009 by the Health Research and Educational Trust

Patient Response Matrix - Routine

Patient Response

“I'm American." "Can't you tell by looking at me?"

If using open-ended option

: "I don’t know. What are the responses?

Suggested Response

Would you like to use an additional term, or would you like me to just put American?

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. You can say White, Black or African American, Latino or Hispanic, Asian, American Indian or Alaska Native, Pacific Islander or Native Hawaiian, some other race, or any combination of these. You can also use more specific terms like Irish, Jamaican, Mexican

Hints

"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.

Code

American or others if specified

Patients Returning

Patient Response

A patient returning for care with the “DECLINED” code.

Suggested Response DO NOT ASK AGAIN

A patient returning for care with the “UNKOWN” or "Unable to provide information" code.

Proceed to ask for the information per routine.

Hints Code

Tougher Questions These generally indicate DECLINED code.

Patient Response

"I m Human." "It's none of your Business."

Suggested Response

Is that your way of saying that you don’t want to answer the question? If so, I can just say that you didn't want to answer.

I'll just put down that you didn't want to answer, which is fine.

Hints

DON'T SAY - I'll just code as a declined.

DON'T SAY - I'll just code as a 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.

Code

Declined Declined Declined

Tougher Questions (cont’d)

Patient Response

" Are you saying that this has happened at _______?”

Suggested Response

We don’t know, but we want to make sure that all our patients get the best care possible. We are part of a national research study to help make sure that doesn’t happen.

"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.

Hints Code

What if the patient presents a race/ethnicity that’s not on the table?

• • Code as “unknown or unable to answer” or add as a text response so you can track this information.

Staff should flag this (e.g., record this information) —if this happens frequently, it may indicate a new category needs to be added to the coding scheme.

Provide contact information of point person for any questions or concerns that may come up.

© 2009 by the Health Research and Educational Trust