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Northwestern University Feinberg School of Medicine

Race, Ethnicity, and Language Data Collection: Nuts and Bolts

Romana Hasnain-Wynia, PhD, Northwestern University, Feinberg School of Medicine

Northwestern University Feinberg School of Medicine logo

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GOAL:

Collect accurate and reliable race and ethnicity and language data to:

• Improve quality and reduce disparities in healthcare processes and outcomes
• Meet data reporting requirements

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Goals for Today

To prepare participants to train registration staff and inform leadership about the importance of effectively collecting high quality data on race, ethnicity, and language that meet state requirements and for use to improve quality within your hospitals.

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Training Objectives

• How to address staff discomfort about asking patients for these data
• How to address patient discomfort about providing the data
• How to respond to concerns and questions patients are likely to ask
• Recognize the importance of training admissions and registration staff

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Tools to Facilitate Data Collection include:

• Justification for Hospital Front-Line Staff
• Justification for Hospital Leadership/Managers
• Script for Hospital Staff Collecting Patient Information
• Staff-Administered Questionnaire
• Patient-Administered Questionnaire
• FAQs for Patients
• FAQs for Hospital Staff

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Why do hospitals collect race, ethnicity, and language data?

• Understand the community served
• Grant applications and potential donors
• Match workforce to community served
• Targeting quality initiatives
• Contractual compliance obligations
• Interpreter services

"Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals". Romana Hasnain-Wynia, Debra Pierce, and Mary A. Pittman. The Commonwealth Fund. May 2004.

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How do hospitals use race/ethnicity data?

• Ensuring availability of interpreter services - 36%
• Quality improvement/disease management programs - 36%
• Program/benefit design - 16%
• Marketing - 13%

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Why every patient needs to be asked

• ALL patients should be asked about their race/ethnicity, and language
• Self-reporting is the most accurate source of information
• Self-reporting will increase consistent reporting within a healthcare institution
• Patients are more likely to select the same categories to describe themselves over time than staff who are assuming or guessing

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Why the data collection technique matters

• Accurate data collection
• Hospitals and policymakers understand what is really happening in California
• Reflects how patients describe themselves
• Prevent patients' concerns about being asked about potentially sensitive information
• Why you are asking them these questions
• How the information will be used

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When and where to ask

• Ideally prior to an appointment, either just before a visit or during phone registration
• For patients who arrive and need to be seen right away
• Collect information as soon as possible after treatment
• Ask at the same time, in the same way as all other registration info

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The importance of the introductory statement

Helps patients understand why you are collecting the information and how it will (and will not) be used

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Introduction

In order to guarantee that all patients receive the highest quality of care and to ensure the best services possible, we are asking all patients about their race, ethnicity, and language.

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Why use this introduction

• Study at Northwestern Memorial Hospital
• Tested 4 introductions
• Asked patients' how comfortable they were sharing race and ethnicity information after reading them the introductions

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Most patients agree it is important to collect race/ethnicity data

"It is important for hospitals 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%

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Patients strongly support hospitals examining differences in quality

"It is important for hospitals and clinics to conduct studies to make sure that all patients get the same high-quality care regardless of their race or ethnic background"

• Strongly agree - 93%
• Somewhat agree - 4%
• Unsure - 2%
• Somewhat disagree - 1%
• Strongly disagree - 0%

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But patients have concerns about how the data are 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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Staff will feel more comfortable asking patients these questions if:

• They understand
• What disparities are
• Why they occur
• Their vital role is in identifying and addressing disparities
• They are well-trained

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You can help staff become more comfortable by:

• Providing staff with responses to the concerns and questions patients are likely to raise
• Using role play in training so staff can experience the reactions, concerns and questions of mock patients and practice how to respond

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Some potential challenges from staff

• We already ask about race, why are we changing the way we do it?
• I don't want to ask these questions, I think patients will be uncomfortable
• I think our institution treats patients of different racial/ethnic groups differently — if I ask these questions, I help them do that
• Others?

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Patients will feel more comfortable if they know:

• The questions come from a place of concern and that the data will serve a positive and valuable purpose
• Their care will not be affected
• The data will only be reported in a group
• They do not feel forced to provide the information

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Patients will feel more comfortable if:

• They feel their privacy and patient rights are being respected
• Data collection does not take too much time and cause them to be late for an appointment

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Tools to Facilitate Data Collection include:

• Justification for Hospital Front-Line Staff
• Justification for Hospital Leadership/Managers
• Script for Hospital Staff Collecting Patient Information
• Staff-Administered Questionnaire
• Patient-Administered Questionnaire
• FAQs for Patients
• FAQs for Hospital Staff

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What Else?

YOUR TURN