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hret disparities toolkit
a toolkit for collecting race, ethnicity, and primary language information from patients
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How to Use the Toolkit

The Toolkit is designed to help hospitals, health systems, community health centers, medical group practices, health plans, and other users understand the importance of collecting accurate data on race, ethnicity, and primary language of persons with limited English proficiency and/or who are deaf or hard of hearing. By using this Toolkit, health care organizations can assess their organizational capacity to collect this information and implement a systematic framework designed specifically for obtaining race, ethnicity, and primary language data directly from patients/enrollees or their caregivers in an efficient, effective, and respectful manner. This section provides information about the Toolkit's design and contents.

Toolkit Design

The Toolkit's contents are outlined at left. Each section has a main heading followed by subheadings. In some instances, these subheadings are broken down further. You can obtain a description of each main heading's contents by clicking on the title.

We designed the Toolkit so you can quickly look at information targeted specifically to your role or needs within your organization. There is considerable overlap in the content for different audiences. We hope you will target the items in the list of contents that are most useful for you and find the Toolkit easy to navigate.

Toolkit Contents

The Toolkit content is designed to help you navigate the most frequently encountered questions about collecting race, ethnicity, and primary language data. The topics include information about:

  • Who should use the Toolkit
  • Why collect race, ethnicity, and primary language data
  • Why collect data using a uniform framework
  • The nuts and bolts of data collection
  • How to ask questions about race, ethnicity, and primary language
  • How to use race, ethnicity, and primary language data to improve quality of care
  • How to train staff to collect this information
  • How to inform and engage the community
  • How to address the communication access needs of deaf and hard of hearing populations
  • Available tools and resources
  • Answers to frequently asked questions

Resources

  • Overview presentation on collecting race, ethnicity, and primary language data
  • Staff training presentation on collecting race, ethnicity, and primary language data
  • Presentation on addressing concerns from patients with applicable questions and answers
  • Survey on collection of race and ethnicity data by hospitals
  • Office of Management and Budget's race and ethnicity definitions
  • Office of Management and Budget's granular code set on race and ethnicity
  • Centers for Disease Control and Prevention's granular code set on race and ethnicity
  • Reference booklet for staff on data collection categories

 


 

Who Should Use the Toolkit

The links below provide targeted information for a specific audience or stakeholder. By clicking on any one of the links (e.g., CEO, clinicians, etc.) you can access all the items in the table of contents. However, we designed the Toolkit so you can look at information targeted specifically to your role or needs within your organization quickly.

Chief Executive Officer

Health care leaders are charged with advancing and managing individual organizational priorities. As hospitals and health care organizations work toward serving diverse populations, leaders must recognize the importance of understanding the unique characteristics of the communities they serve. Efforts to improve health care delivery require working with key staff. Leaders can be most effective by helping others develop the abilities and tools to create the best responses to problems and opportunities.

Improving the quality of care for all patients and eliminating health care disparities are central challenges facing our health care system. As emphasized by two Institute of Medicine reports (Crossing the Quality Chasm and Unequal Treatment), the need for better data about patients' race, ethnicity, and primary language is critical. The section links at left provide information to hospital and health system leaders about collecting race, ethnicity, and primary language information from patients.

Look to the blue Links column to the right for helpful resources.

Legal Affairs Department

The law permits health care organizations to collect race, ethnicity, and primary language data from patients for quality improvement purposes. For example, the collection of race, ethnicity, and primary language data is permitted under Title VI of the Civil Rights Act of 1964. Additionally, the collection and assessment of information about the communication access needs of individuals who are deaf or hard of hearing promotes compliance with Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act. 

Look to the blue Links column to the right for helpful resources.

Quality Improvement

The ultimate goal for collecting information about patient's race, ethnicity, and primary language is to improve the quality of care for all patients. Evidence indicates that quality improvement efforts, when linked to data on race and ethnicity, can improve quality of care and reduce health care disparities. These data can be linked to assess technical quality (clinical measures) and service quality (wait times) within your health care organization The section links at left provide background information and tools (questionnaires) to help hospitals assess their current practices collecting race, ethnicity, and language data as well as surveys to determine whether complete and accurate information is being collected from patients once a systematic framework is implemented.

Look to the blue Links column to the right for helpful resources.

Clinicians

Doctors, nurses, and other health care practitioners are central to the functioning of health care systems and to societies as a whole. However, few societies have been as racially, ethnically, and culturally diverse as the United States, presenting challenges and opportunities. Each new wave of immigration provides a reminder of these challenges and opportunities.

In their individual encounters with patients, other clinical professionals who care for diverse populations need to incorporate knowledge about their patients' perceptions of illness and disease, belief systems, individual preferences, communication styles, and preferred language. In doing so, clinicians can provide the best possible care to their patients and equip them with appropriate resources.

The need for accurate data is critical so hospitals can target the resources clinicians need (interpreter services, patient educational materials, food, etc.) to provide quality health care to their patients. The links to the right in the blue sidebar provide background information about the importance of collecting information about patients' race, ethnicity, and language and about how to collect the data.

Look to the blue Links column to the right for helpful resources.

Patients/Consumers

Patients should understand why they are being asked to provide information about their racial and ethnic background and primary language. Providers do not want to alienate patients by asking these questions, so it is important to explain why the information is being collected and how it will be used ("to ensure that everyone receives the highest quality of care"). The Why Collect Race, Ethnicity, and Primary Language section provides information about why collecting this data is important for providing patient-centered care, protecting privacy, and involving members of the community in the process.

Resources for Information About Privacy and Confidentiality

The Institute for Ethics at the American Medical Association has built a toolkit for health care organizations to assess whether their policies, practices, and organizational culture are consistent with protecting patient privacy,  including the federal Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.

  1. The toolkit provides four self-evaluation instruments for health care organizations to use to assess their policies and practices for safeguarding patient privacy and confidentiality including a Practitioner Survey, Patient Survey, Policy Checklist, and Facility Evaluation Form. To obtain more information about the privacy toolkit, go to the Ethical Force Program.

  2. To access the report entitled "The Domain of Health Care Information Privacy: Protecting Identifiable Health Care Informational Privacy: A Consensus Report on Eight Content Areas for Performance Measure Development," go to the Consensus Report of the AMA.

  3. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance (NCQA) released a joint publication, Protecting Personal Health Information: A Framework for Meeting the Challenges in a Managed Care Environment (1998). The document makes several recommendations and addresses accountability; consent; educating patients and providers about privacy policies, procedures, rights, and responsibilities; technology; providing legislative support; and guiding research.

  4. Georgetown University's Institute of Health Policy and Research is sponsoring the Health Privacy Working Group (HPWG). The HPWG has developed a set of principles for health privacy and issued a report entitled Best Principles for Health Privacy. The Health Privacy Project has prepared a practical, comprehensive guide to state health privacy laws. For more information, go to the Health Privacy Project.

For more information about the HIPAA Privacy Rule, including summaries, tools, and frequently asked questions, go to their Web site.

Look to the blue Links column to the right for helpful resources.

Registration/Admission

Patient registration/admission staff are often the first point of contact for many patients, and they are responsible for collecting information directly from patients or caregivers. Registration staff have expressed concern that asking patients to provide information about their race and ethnicity may alienate them. Our research and field work have shown that when registration staff are partners in the process, receive the training, which focuses on the reasons for collecting this information, how to ask patients and address their concerns, they feel comfortable asking and patients respond positively as well. The links to the right in the blue sidebar provide information for registration/admission staff about asking patients to provide information about their race, ethnicity, and primary language and about how to ask for this information and respond to patients' concerns and questions.

Look to the blue Links column to the right for helpful resources.

Information Technology Department

The IT department and staff are key in implementing the framework for collecting patient race, ethnicity, and primary language data within a hospital or health system. IT staff can identify infrastructure capacity and needs and are best able to integrate the necessary elements of the framework (codes, fields, etc.) into existing systems or in modifying the systems, if necessary. The most often asked questions or points of clarification for IT staff to consider include:

  • Is it possible to incorporate the actual script (for asking the questions) on the registration screen so front-line staff can explain or provide the rationale for why they are asking patients to provide information about their race and ethnicity?
  • Can a "declined" response category be added for those patients who do not want to answer this question and decline to do so (this is different than "unavailable")? Is it possible to flag these responses in different colors to make it easier for staff (e.g., "declined" indicates do not ask again and "unavailable" indicates ask again)?
  • Do the order of the questions matter (i.e., race before ethnicity question or vice versa)? Some hospitals could not change the order on the registration screens.
  • Will the old race/ethnicity data be purged or stored?
  • Can modifications be made to the fields to match the OMB categories?
  • Can a separate field for ethnicity be added (for those hospitals which only have a race field)?
  • Will all registration staff (in the hospital and those off-site) see the same registration screens once modifications are made?

The links to the right in the blue sidebar provide different coding schemes for race and ethnicity data. The staff training link provides one example of a registration system that has incorporated the framework for data collection.

Look to the blue Links column to the right for helpful resources.

Interpreter Services

Nearly 52 million people---over 19% of the U.S. population---speak a language other than English at home. Health care providers from across the country have reported language difficulties and inadequate funding of language services to be major barriers to limited English proficient (LEP) individuals' access to health care and a serious threat to the quality of care they receive. Whether large or small, urban or rural, hospitals and health systems are encountering more and more patients with LEP.

A recent survey conducted by the Health Research and Educational Trust found that 63% of hospitals reported treating LEP patients either daily or weekly and an additional 17% reported seeing LEP patients at least monthly Seventy-nine percent (79%) of hospitals in the survey indicated that training on how to respond to patients and family members who do not speak English would facilitate providing language services. Though 66% of hospitals indicated that they maintain information about a patient's primary language in medical records, only 38% said that they maintain a database of patients' primary language that they could use to track changes over time or make decisions about how to allocating resources for language services in the hospital.

The Toolkit provides information about collecting primary language information from patients and family members. It also addresses collecting data and providing services for deaf and hard of hearing populations.

Look to the blue Links column to the right for helpful resources.

 


 

Why Collect Race, Ethnicity, and Primary Language

Numerous studies document that racial and ethnic minorities often receive lower quality care than non-minorities. Although much information on health care comes from health care organizations, data on race, ethnicity, and primary language are often unavailable or incomplete.

In addition, deaf and hard of hearing populations face challenges in accessing high-quality health care. According to the National Institute on Deafness and Other Communication Disorders report, "Statistics about Hearing Disorders, Ear Infections, and Deafness" (2007), approximately 28 million Americans have hearing loss. 

Valid and reliable data are fundamental building blocks for identifying differences in care and developing targeted interventions to improve the quality of care delivered to specific populations The capacity to measure and monitor quality of care for various racial, ethnic, and linguistic populations rests on the ability both to measure quality of care in general and to conduct similar measurements across different racial, ethnic, and linguistic groups. This section provides information about why your health care organization should collect these data.

Making the Case

Measurement and outcomes have become increasingly important for demonstrating the effectiveness of health care. Evidence from the last 20 years shows that racial, ethnic, and language-based disparities remain present in health care. The Institute of Medicine (IOM) report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, issued in 2002, is one of several recent studies documenting such evidence. There is a clear need to document and improve the quality of care provided to vulnerable populations. The need for data to track these disparities and develop effective programs to reduce and eliminate them is clear.

Disparities in health care can be addressed through a quality of care framework if data on race, ethnicity, and primary language are available. According to the report "The Right to Equal Treatment" issued by Physicians for Human Rights, data collection has long been central to the quality assurance process. The data may also help evaluate population trends and help ensure nondiscrimination on the basis of race and national origin, such as providing meaningful access for persons with limited English proficiency.

Most hospitals (82 percent) currently collect data on their patients' race and ethnicity, and 67 percent collect information on patients' primary language. However, the data are not collected in a systematic or standard manner and are often not shared, even between different departments within the same hospital. Organizations that collect accurate data can use this information to ensure they have sufficient language assistance services, to develop appropriate patient education materials, and to track quality indicators and health outcomes for specific groups to inform improvements in quality of care.

Race and Ethnicity Data

Health care organizations should collect information on patients' race and ethnicity in order to measure disparities in care---and see if they exist in the organization. Identifying and measuring disparities helps organizations initiate programs to improve quality of care. Experts assert that a growing consensus accepts a strategy integrating reduction in disparities in quality of care as a coherent and efficient approach to redesigning the U.S. health care system.

Communities want health care providers to be accountable and responsive to them. According to the American College of Physicians position paper on racial and ethnic disparities in health care, "An ongoing dialogue with surrounding communities can help a health care organization integrate cultural beliefs and perspectives into health care practices and health promotion activities." Tracking racial and ethnic composition with concurrently changing health care needs of communities is vital if health care providers are to fulfill their functions.

Links

Primary Language Data

Patients with limited English proficiencyor who are deaf or hard of hearing need to be able to communicate with their health care providers to ensure that the quality of care they receive is not compromised. According to the U.S. Census Bureau's 2005 American Community Survey, over 23 million people in the United States speak English less than "very well." Poor patient outcomes that have been attributed to language barriers include increased use of expensive diagnostic tests, increased use of emergency services and decreased use of primary care services, and poor or no patient follow-up when follow-up is indicated.

In a survey of hospital language services conducted by the Health Research and Educational Trust (2006), the most commonly cited barriers were the inability of staff to identify patients who need language services before they arrive at the hospital and the difficulty in obtaining community-level data about the languages spoken in the community versus collecting this information directly from patients. This Toolkit is designed to help hospitals and other health care organizations obtain this information directly from patients.

Links

Language Needs of the Deaf or Hard of Hearing

The communication needs of deaf and hard of hearing patients should be integrated into programs and services provided in health care settings as the ability to effectively communicate in health care settings is critical to providing quality health care to this population. The Americans with Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973, which prohibit discrimination on the basis of disability, require health care organizations to provide auxiliary aids and services as necessary to insure effective means of communication for patients, family members, and hospital visitors who are deaf or hard of hearing. To be compliant with the law, the health care organization must ensure that the individual who is deaf or hard of hearing actually understands what is being communicated through an alternative communication option.

The following are auxiliary aids and services:

  • Qualified interpreters
  • Note-takers
  • Computer-aided transcription services
  • Written materials
  • Telephone handset amplifiers
  • Assistive listening devices
  • Assistive listening systems
  • Telephones compatible with hearing aids
  • Closed caption decoders
  • Open and closed captioning
  • Telecommunications devices for deaf persons (TDDs)
  • Videotext displays
  • Other effective methods of making aurally delivered materials available to individuals with hearing impairments

In most circumstances, the patient who is deaf or hard of hearing is in the best position to determine what means of communication is necessary to insure that effective communication occurs. Therefore, the individual's judgment regarding what means of communication is necessary to insure effective communication should be documented in the medical record. This should be followed by an assessment of the types of aids and services that may be needed during the various types of interaction between the health care provider's staff and the deaf or hard of hearing patient throughout the patient's treatment.

In order to identify the needs of deaf or hard of hearing patients and their companions, health care providers should collect information from these patients, their companions, and communities about their language needs. Our research to date has not specifically focused on the best methods of collecting information about the language needs of deaf and hard of hearing populations, but we understand the importance of collecting this information to provide high quality care to these populations.  In our national survey of hospital language services conducted in 2006, 11 percent of hospitals reported frequently encountering patients with American Sign Language as their primary language. For more information, see the Deaf and Hard of Hearing Populations section.

National/State Reporting Requirements

An increasing number of federal policies emphasize the need for obtaining race, ethnicity, and language information. According to the Commonwealth Fund report, Racial, Ethnic, and Primary Language Data Collection in the Health Care System: An Assessment of Federal Policies and Practices (2001) by Perot and Youdelman, these major federal policies govern racial, ethnic, and primary language data collection and reporting:

  • Office of Management and Budget (OMB) revised standards (1997)
  • Health Insurance Portability and Accountability Act of 1996
  • Initiative to Eliminate Racial and Ethnic Disparities in Health (1998)
  • Consumer Bill of Rights and Responsibilities (1997)
  • Benefits Improvement and Protection Act (2000)
  • Report of U.S. Commission on Civil Rights, The Health Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equity (1999)
  • Executive Orders 13166 "Improving Access to Services for Persons with Limited English Proficiency" and 13125 "Improving the Quality of Life of Asian Americans and Pacific Islanders" (2000)
  • Minority and Health Disparities Research and Education Act of 2000
  • Department of Health and Human Services Title VI Regulations (1964)
  • Department of Health and Human Services Inclusion Policy (1997)
  • Healthy People 2010 (2000)
  • Culturally and Linguistically Appropriate Services (2000)
  • HHS Data Council Activities (ongoing)
  • National Committee on Vital Health Statistics (ongoing)

Below is a list of 22 states that indicated they require the reporting of race/ethnicity:

Arizona
California
Connecticut
Delaware
Florida
Georgia
Louisiana
Maryland
Massachusetts
Missouri
New Hampshire
New Jersey
New Mexico
New York
Pennsylvania
Rhode Island
South Carolina
Tennessee
Texas
Vermont
Virginia
Wisconsin

Source: Medstat and National Association of Health Data Organizations. "Nationwide Data Inventory of Statewide Encounter-Level Data Collection Activities." Report to the Agency for Healthcare Research and Quality (AHRQ). AHRQ Contract No. 290-00-0004. April, 2003.

Look to the blue Links column to the right for helpful resources.

Accreditation Requirements

In January of 2006, the Joint Commission issued a new standard requiring health care organizations to collect patient's primary language information.

Look to the blue Links column to the right for helpful resources.

 


 

Why Collect Data Using a Uniform Framework

The uniform framework provides a process improvement tool for health care organizations to systematically collect race, ethnicity, and primary language information from patients or their caregivers. Using this framework results in more accurate and complete data. Health care organizations with data from their own institutions may, in turn, use the information to reduce health care disparities, develop targeted initiatives to improve quality of care, and provide patient-centered care.

The elements of a uniform framework include:

  1. A rationale for why the patient is being asked to provide information about his/her race, ethnicity, and primary language.
  2. A script for staff to use each time so that they ask questions in a uniform fashion.
  3. A method for allowing patients to self-identify their race, ethnicity, and primary language.
  4. A standardized approach for "rolling up" granular responses to the Office of Management and Budget (OMB) categories for analytical and reporting purposes.
  5. Assurances that the data will be held confidential and that a limited number of people will have access to the data, and a mechanism to guarantee this claim.

Look to the blue Links column to the right for helpful resources.

Current Practices

Hospitals

Hospitals play a major role in a community's health care delivery system. But their infrastructure for collecting and using race, ethnicity, and language data is underdeveloped, leading to problems of redundancy, inefficiency, and inaccuracy.

  • 78% to 82% of hospitals report collecting race data.
  • Far fewer collect ethnicity data.
  • 66% of hospitals collect primary language data in the patient medical record.
  • 38% maintain a database of patients' primary language, which can be tracked over time.
  • 56% collect race/ethnicity data in more than one unit.
  • Within the same hospital, different units use different categories.
  • Over 50% of hospitals report collecting race/ethnicity data by observation.
  • 86% provide limited categories.
  • 13% provide a "write-in" response, but these text responses are often not used.
  • 10% provide granular race/ethnicity categories tailored to their community's demographics.
  • 25% report linking race/ethnicity and language data to quality of care measures.

Medical Group Practices

Little is known about the collection of data on race and ethnicity in medical group practices. Medical groups are less likely than hospitals to collect race and ethnicity data (Nerenz, Currier, and Paez 2004).

  • 75% of medical groups that responded to one survey did not collect race/ethnicity data because they thought it was unnecessary or that collection was potentially disturbing to patients.
  • Medical groups that collected the data did so primarily for internal quality improvement or disease management purposes, and some were closely affiliated with hospitals that collected data on race/ethnicity as part of the inpatient registration process.
  • Recognizing this gap is particularly important. We know far less about health care disparities in the outpatient setting as compared with the inpatient setting.

Community Health Centers (CHCs)

Perhaps because of the tremendous diversity of patients seen at CHCs and their mandate to have their boards of directors represent their communities, CHCs appear to be ahead of the curve in collecting information on patient's race and ethnicity.

  • The Bureau of Primary Health Care (BPHC) has demonstrated success in collecting data in this setting. BPHC's Universal Data System stores data from 700 grantees at 3,000 health care sites.
  • The BPHC has established specific racial, ethnic, and primary language data collecting and reporting requirements applicable to its network of CHCs.
  • The success of these programs provides evidence to other medical groups that this information can be routinely obtained from patients in outpatient practices.

Health Plans

In a study released by America's Health Insurance Plans (AHIP) and the Robert Wood Johnson Foundation, over half (53.5%) of 137 plans that were surveyed collect data that identifies the race or ethnicity of their enrollees.

  • 78.2% of Medicaid health plans collect race and ethnicity data.
  • 74.3% of Medicare plans collect race and ethnicity data.
  • 50.9% of commercial plans collect race and ethnicity data.

Health plans report they collect such data to identify enrollees at risk for certain conditions, to support educational and other communication efforts directed to diverse populations, and to structure quality improvement efforts.

Look to the blue Links column to the right for helpful resources.

Standardization

We recommend the following practices for standardizing race, ethnicity, and primary language data collection in health care organizations:

Who provides the information
Information should always be provided by patients or their caretakers. It should never be done by observation alone.

When to collect
Collection should take place upon admission or patient registration to ensure appropriate fields are completed when the patient begins treatment (for plans, at enrollment).

What racial and ethnic categories should be used
Start with the U.S. Census or the Office of Management and Budget (OMB) categories. Health care organizations can provide more granular categories (to use for internal purposes), but these granular categories should have the capacity to be aggregated to the broader OMB categories for reporting purposes.

Where should data be stored
Data should be stored in a standard electronic format for easy linking to clinical data.

Patient Concerns
Concerns should be addressed up front and clearly, prior to obtaining information.

Staff training
Employers need to provide ongoing training and evaluation to staff.

Benchmarking

Benchmarking is necessary. Health care organizations need to know where they stand to see where they are going. For example, are quality improvement interventions making a difference? Should our organization be doing things differently?

Collecting accurate data helps your organization track progress over time. In addition, it allows for comparisons within organizations, across organizations, as well as at a national level. Most national level data are obtained from health care organizations. If the data your organization collects are accurate, it contributes to accurate comparisons and reporting at all levels.

Look to the blue Links column to the right for helpful resources.

 


 

Collecting the Data - The Nuts and Bolts

The National Research Council of the National Academies report Eliminating Health Disparities: Measurement and Data Needs (2004) recommends that hospitals, other health care providers, and health insurers collect standardized data on race and ethnicity using the Office of Management and Budget (OMB) standards as a base minimum. However, experts recognize that greater detail or granularity beyond the OMB categories may be more useful for hospitals and health care organizations in target improvements for diverse populations. We recognize that collecting granular level data at the organizational level may create challenges for reporting or for research. The Institute of Medicine's (IOM) recent report Race, Ethnicity and Language Data: Standardization for Health Care Quality Improvement (2009) provides new recommendations to help facilitate and further standardize the collection of race, ethnicity and primary language data.  We recommend that health care providers collect race, Hispanic ethnicity and granular ethnicity data separately and "roll up" or aggregate the granular ethnicities to the OMB race and Hispanic ethnicity categories as needed.

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

Look to the blue Links column to the right for helpful resources.

Who

We recommend collecting race and ethnicity information directly from patients or their caregivers. Race and ethnicity information should be collected only once and periodically validated. Repeated collection should be avoided to reduce the burden both for patients and for staff responsible for collecting the information. Once this information is collected, it should be stored in an electronic format when possible.

In addition, if a patient refuses to answer questions about their racial or ethnic background, the registration staff should move on with the registration process and record "declined" in the field indicating that the patient did not want to answer this question. Providing information about race and ethnicity is completely voluntary, and staff should recognize when people feel uncomfortable or explicitly state that they do not want to respond to these questions.

We have designed this Toolkit to serve as a resource for hospitals and health care organizations. The primary components of race and ethnicity data collection that should be considered standard practice include the following:

  1. Collect data directly from the patient or from a designated representative.
  2. Provide a rationale or reason for why this information is being collected.
  3. Depending on the capacity of your organization, decide whether you will be providing broad or granular categories. If using predefined categories, decide whether you will be using the bare minimum, such as OMB, or whether you will be providing more granular categories. (Information about both broad categories and granular categories is listed in the section "Which Categories to Use.")

Look to the blue Links column to the right for helpful resources.

Where

Hospitals, Clinics, Group Practices

We recommend that this information be collected at the time of patient registration for hospitals, clinics, and medical group practices. This information can be collected face-to-face or over the telephone.

Health Plans

For health plans and insurers, we recommend that this information be collected at the time of enrollment, if possible. We realize that this may pose a challenge as some employers prohibit asking this information of their employees. America's Health Insurance Plans (AHIP) has developed a toolkit, "Tools to Address Disparities in Health: Data as Building Blocks for Change—A Data Collection Toolkit for Health Insurance Plans/Health Care Organizations (PDF)."

Look to the blue Links column to the right for helpful resources.

How

Always provide a rationale for why you are asking patients/enrollees to provide information about their race/ethnicity. Research shows that patients are most comfortable providing this information when told why it is being collected and how it will be used. We recommend that health care organizations and health plans collect this information for quality monitoring purposes. Below is a sample rationale, which is easy to communicate and focuses on data collection for quality monitoring.

Rationale

"We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care."

In addition, it is important to state that the information is confidential:

"The only people who see this information are registration staff, administrators for the hospital, and the people involved in quality improvement and oversight, and the confidentiality of what you say is protected by law."

Look to the blue Links column to the right for helpful resources.

Which Categories to Use

Provided below are the OMB (broad categories) and CDC Race and Ethnicity Code Sets (granular categories that can be rolled up into the OMB categories for reporting or research purposes). As indicated, hospitals can choose to present patients/enrollees with a list of either broad or granular categories allowing patients/enrollees to self-identify their racial/ethnic background.

Look to the blue Links column to the right for helpful resources.

Broad Categories (OBM)

OMB Revised Standards (1997)

In 1997, the Office of Management and Budget (OMB) published revisions to the Standards for Classification of Federal Data on Race and Ethnicity. For detailed information about the OMB standards, go here.

The OMB revised standards includes separate race and ethnicity questions. See below for specific OMB recommendations.

First ask questions about ethnicity.

OMB Ethnicity

  • Hispanic or Latino: A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. The term "Spanish origin" can be used in addition to "Hispanic or Latino."
  • Not Hispanic or Latino.

OMB Race

  • American Indian/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.
  • Black/African American: A person having origins in any of the black racial groups of Africa. Terms such as "Haitian," "Dominican," or "Somali" can be used in addition to "Black or African American."
  • Native Hawaiian/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.

Our recommended modifications to OMB include adding the following categories:

  • Some Other Race: (This category replaces the "Multiracial" category in the previous version of the toolkit. It provides a response option for those Hispanics and others who do not relate to the current OMB race categories.)
  • Declined: (This category is an indication that the person did NOT want to respond to the question and should not be asked again during the same visit or during a subsequent visit.)
  • Unavailable: (This category is an indication that the person could not respond to the question and can be asked again during the same visit or during a subsequent visit.)

Collapsing Race and Ethnicity

Field research by HRET has shown that some health care organizations have only one field (for race) and do not have a separate field for ethnicity. Under these circumstances, we have collapsed race/ethnicity to facilitate recording both in one field. The recommended categories are:

  • 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

Granular Categories

In addition to collecting data in the OMB race and ethnicity categories, organizations should also collect granular ethnicity data using categories that are representative of the population served.  The IOM Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement recommends that granular ethnicity categories should be selected from a national standard set based on ancestry (e.g., Centers for Disease Control and Prevention [CDC]/Health Level 7 [HL7] Race and Ethnicity Code Set 1.0). 

Not all organizations collecting granular ethnicity data will need to include the entire national standard set of categories in their databases or on their data collection instruments. Rather, organizations should select categories from the set that are applicable to their service population. Whenever a limited list of categories is offered to respondents, the list should include an open-ended response option of "Other, please specify:__" so that each individual who desires to do so can self-identify.

When respondents do not self-identify as one of the OMB race or Hispanic ethnicity categories and provide only a granular ethnicity response, a process for rolling the granular ethnicity categories up to the OMB categories should be used.  Ethnicities that do not correspond to a single OMB race category should be categorized as "no determinate OMB classification".

Centers for Disease Control Race and Ethnicity

Code Set

The U.S. Centers for Disease Control and Prevention (CDC) have prepared a code set for use in coding race and ethnicity data. This code set is based on current federal standards for classifying data on race and ethnicity, specifically the minimum race and ethnicity categories defined by the OMB described above and a more detailed set of race and ethnicity categories maintained by the U.S. Bureau of the Census. The code set can be applied in both electronic and paper-based record systems.

Within the table, each race and ethnicity concept is assigned a unique identifier, which can be used in electronic interchange of race and ethnicity data. The hierarchical code is an alphanumeric code that places each discrete concept in a hierarchical position with reference to other related concepts. For example, Costa Rican, Guatemalan, and Honduran are all ethnicity concepts whose hierarchical codes place them at the same level relative to the concept Central American, which is the same hierarchical level as Spaniard within the broader concept Hispanic or Latino.

In contrast to the unique identifier, the hierarchical code can change over time to accommodate the insertion of new concepts.  For more information, see the two links below.

Granular Code Set I (PDF)
Granular Code Set II (PPT)

IOM Subcommittee Proposed Template of Granular Ethnicity Categories

The IOM subcommittee has also created a template listing granular ethnicity categories from multiple sources including the CDC/HL7 list. Some of the granular ethnicities included in the template have already been assigned permanent five-digit unique numerical codes by CDC/HL7. Others still require permanent five-digit unique numerical codes.

IOM Subcommittee Template of Granular Ethnicity Categories (Table E-1 in Appendix E of IOM Report)

Language Categories

To simplify the collection of language data, most organizations should develop a list of common languages used by their service population, accompanied by an open-ended response option for those whose language does not appear on the list. 

Locally relevant language categories should be selected from a national standard set such as that available from the Census list or IOM report. A sample list is as follows:

• African languages
• American Sign Language
• Arabic
• Armenian
• Chinese
• French
• French Creole
• German
• Greek
• Gujarathi
• Hebrew
• Hindi
• Hungarian
• Italian
• Japanese
• Korean
• Laotian
• Miao Hmong
• Mon-Khmer Cambodian
• Other native North American languages
• Persian
• Polish
• Portuguese
• Portuguese Creole
• Russian
• Scandinavian languages
• Serbo-Croatian
• Spanish
• Tagalog
• Thai
• Urdu
• Vietnamese
• Yiddish
• Availability of Sign Language or other auxiliary aids or services
• Other, please specify:___
• Do not know
• Unavailable/Unknown
• Declined

IOM Subcommittee Template of Spoken Language Categories and Coding (Table I-1 in Appendix I of IOM Report)

 


 

How to Ask the Questions

As we suggested in the Collecting the Data section of the Toolkit, we recommend that health care organizations/health plans provide a rationale for why they are asking patients/enrollees for information about their racial and ethnic background. Suggested wording for the rationale is:

"We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care."

We have found that people feel comfortable responding to the question about race/ethnicity, but they sometimes have their own questions or want more clarity. And some people may prefer to not answer the question at all.

The following link to a response matrix (PPT) provides real world examples of questions people have asked as well as suggested responses. This response matrix is not all inclusive. You may encounter different scenarios, and you may not hear any concerns from patients after asking these questions. The response matrix serves as a tool for you and your staff, and it is excellent for facilitating dialogue during training sessions.

Race/Ethnicity

Using Broad (OMB) Categories

"We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care."

Ethnicity Question

(OMB recommends asking ethnicity before race.)

Do you consider yourself Hispanic/Latino?

  • Yes
  • No
  • Declined
  • Unavailable/Unknown

Race Question

Which category best describes your race?

  • American Indian/Alaska Native
  • Asian
  • Black or African American
  • Native Hawaiian/Other Pacific Islander
  • White
  • Some other race 
  • Declined
  • Unavailable/Unknown

Using Granular Categories

"We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care. I would like you to describe your race or ethnic background. You can use specific terms such as Korean, Mexican, Haitian, Somali, etc…"

You can provide all or some of the granular categories based on the community you serve.

Granular Code Set II (PPT)

IOM Subcommittee Template of Granular Ethnicity Categories (Table E-1 in Appendix E of IOM Report)

Language

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

  • Very Well
  • Well
  • Not Well
  • Not at all
  • Declined
  • Unavailable

2. What language do you feel most comfortable speaking with your doctor or nurse?

African languages
American Sign
Language
Arabic
Armenian
Chinese
English
French
French Creole German
Greek
Gujarathi
Hebrew
Hindi
Hungarian
Italian
Japanese
Korean
Laotian
Miao Hmong Mon-Khmer Cambodian
Navajo
Other Native North
American languages
Persian
Polish
Portuguese
Portuguese Creole
Russian
Scandinavian
languages
Serbo-Croatian
Spanish
Tagalog
Thai
Urdu
Vietnamese
Yiddish
Availability of Sign Language or other auxiliary aids or services
Other, please specify: ___
Do not know
Unavailable
Declined

Language categories should be based on the community you serve.

IOM Subcommittee Template of Spoken Language Categories and Coding (Table I-1 in Appendix I of IOM Report)

3. Would you like an interpreter?

  • Yes
  • No
  • Do not know
  • Declined
  • Unavailable

4. In which language would you feel most comfortable reading medical or health care instructions?

African languages
American Sign
Language
Arabic
Armenian
Chinese
English
French
French Creole
German
Greek
Gujarathi
Hebrew
Hindi
Hungarian
Italian
Japanese
Korean
Laotian
Miao Hmong
Mon-Khmer Cambodian
Navajo
Other Native North
American languages
Persian
Polish
Portuguese
Portuguese Creole
Russian
Scandinavian
languages
Serbo-Croatian
Spanish
Tagalog
Thai
Urdu
Vietnamese
Yiddish
Availability of Sign Language or other auxiliary aids or services
Other, please specify: ___
Do not know
Unavailable
Declined

5. How satisfied are you with your ability to read English?

  • Very satisfied
  • Somewhat satisfied
  • Satisfied
  • Somewhat dissatisfied
  • Very dissatisfied
  • Declined
  • Unavailable

 


 

How to Use the Data

Eliminating racial and ethnic disparities in health care is a central issue in overall efforts to improve quality of care. Information on racial and ethnic characteristics of the U.S. population is needed to target quality improvement efforts, identify the nature and extent of health disparities, and monitor progress. Measurement, reporting, and benchmarking are critical to improving care. In addition, certain state statutes and laws require reporting data by race and ethnicity to monitor discriminatory practices. Enforcement of laws that prohibit discrimination on the basis of race, color, national origin, and disability rely on data collection to monitor compliance. Ultimately, hospitals and other health care organizations need to be responsive to the communities they serve. A first step toward accomplishing this goal is understanding who the community is and working collaboratively to address problems and concerns.

The health system serves three critical functions (Eliminating Health Disparities: Measurement and Data Needs, National Research Council, 2004):

  1. Ensuring the health of the population. This is the ability to provide consistent and reliable epidemiological data on the incidence and prevalence of various health conditions and related risk factors among different racial and ethnic populations.
  2.  Ensuring equitable access to care. Access to care is a prerequisite for entering and staying in the health care system. Available racial and ethnic data have been used to document important differences in access between racial and ethnic groups. More accurate data can also be used to document differences in access within racial groups (e.g., Puerto Rican, Mexican, Somali, Jamaican, etc.).
  3. Ensuring quality of care. Language and cultural barriers can have a negative impact on quality of care. For example, African Americans were nearly twice as likely as whites to report being treated with disrespect during recent health care visits; Hispanics, regardless of language skills, were more likely than other patients to report having difficulty communicating with and understanding their doctors (Collins, Tenney, and Hughes, The Commonwealth Fund, 2002; Doty and Ives, The Commonwealth Fund, 2002). These findings underscore the importance of ensuring culturally competent care to patients by health care providers..

There are a number of disparity monitoring initiatives conducted by the federal government. Eliminating health care disparities is one of the primary goals of Healthy People 2010, a long-term national agenda aimed at improving health in the United States. In 1999, Congress required the Agency for Healthcare Research and Quality to develop an annual National Healthcare Disparities Report (PDF) to track the extent of disparities in health care and monitor whether progress has been made toward eliminating them.

It is important to maintain a national focus on this issue to present national data to assess our progress in eliminating disparities in care. However, health care organizations need to also monitor the care they deliver within their own "backyards." Many experts have called for health care organizations to stratify their quality reports by race and ethnicity in order to undertake targeted interventions. Health care organizations should be able to stratify race, ethnicity, and language data by service quality indicators (patient satisfaction, wait times, etc.) as well as by technical quality indicators (clinical measures).

For example, the Robert Wood Johnson national initiative to reduce disparities in cardiac care, Expecting Success: Excellence in Cardiac Care, focuses on improving cardiac care to minority populations in a hospital learning collaborative. A major emphasis of this initiative focuses on reporting cardiac care quality measures by race, ethnicity, and primary language.

Linking to Clinical Quality Measures

As part of the Hospital Quality Alliance, over 4,000 hospitals are voluntarily reporting inpatient quality of care measures to CMS for a number of conditions. Click here for a document (PDF) on the specific quality measures.

Linking to Patient Satisfaction Measures and Making Appropriate Resource Allocation Decisions

The American College of Physicians position paper on Racial and Ethnic Disparities in Health Care (2004) calls for an ongoing dialogue between hospitals and other health care organizations and surrounding communities to help integrate cultural beliefs and perspectives into health care practices and health promotion activities. Accurate information about race, ethnicity, and primary language can be used to ensure adequate interpreter services, provide relevant patient information materials, and understand dietary practices. Pressing problems in the communities, such as disparities in care, can be addressed more effectively if health care providers and practitioners build the trust of the community by documenting their accomplishments.

Complying with Civil Rights Laws

Routine monitoring of access, use of services, and outcomes of care by race, ethnicity, and primary language helps ensure compliance with civil rights laws. Title VI of the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990, and related statutes and their implementing regulations require that patients from different racial and ethnic groups and patients with disabilities have equal opportunity to access quality care.

 


 

Staff Training

To ensure that data are collected accurately and consistently, organizations need to invest in training staff. Staff should be partners in this process. The training should provide information about why it is important to collect these data, how to collect data, and how to answer questions or address concerns from patients. The links below provide tools and resources for staff training.

Look to the blue Links column to the right for helpful resources.

Scripts

Although it is not necessary to have lengthy scripts, it is important to clearly communicate why you are asking patients to provide information about their race/ethnicity and language. Depending on what type of resources you have available, a script can be read directly from the computer screen or you can simply have it written on a laminated card to keep at your station. You will need to work with IT staff to ensure it is incorporated on the registration screen if you decide to go this route. The specific wording for how to ask the question is:

Remember to ask the patient or designated caregiver to self-identify their race and ethnic background:

"We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care."

Then ask:

"What is your race?"

(Please refer to How to Ask the Questions section for specific categories.)

If people express concern about confidentiality or who will see this information, state the following:

"The only people who see this information are registration staff, administrators for the hospital, and the people involved in quality improvement and oversight, and the confidentiality of what you say is protected by law."

Addressing Concerns from Patients

We have found that when you explain why you are asking people to report their racial and ethnic background and do so in a nonthreatening and polite manner, resistance to providing this information is minimized. There may be individuals who do not understand the question or do not want to respond to it. The response matrix (PPT) provides you with some guideposts. It is very important to remember that if someone does not want to answer these questions, simply record "declined" and move on with the registration process.

 


 

Informing and Engaging the Community

Hospitals and other health care organizations are learning that when it comes to delivering health care, it is better to not go it alone. Whether your goal is to increase access to health care for specific populations, serve the uninsured, or target interventions in the community to improve care, it may be more effective if you collaborate with other organizations and stakeholders in the community. Collaboration can help you better align resources with needs, reduce competition, increase effectiveness, and make your results more sustainable. It requires that organizations work outside historical boundaries; dedicate people, skills, and energy to the effort; deal with a diversity of priorities and culture; and think of their organizational plans and operations as part of a system that needs to function seamlessly. (The Collaboration Primer, HRET, 2003.)

The Collaboration Primer (PDF)

Communities can be defined by geographic boundaries, but they can also be defined by race, ethnicity, primary language, or immigration patterns. Community engagement allows health care organizations to work with community members and with other organizations. If your organization is about to embark on systematic collection of race, ethnicity, and primary language data, it is important to inform the community about this initiative, why you are undertaking it, what to expect, and how you will use the information. This will help to ensure that you consider community values and needs. It will facilitate the process of collecting data because the community will be an active and informed partner in this enterprise. Methods to engage the community include:

  • Community meetings
  • Focus groups
  • Working with community-based organizations
  • Newsletters
  • Posters
  • Brochures/informational pamphlets
  • Reoccurring articles in community newspapers

Look to the blue Links column to the right for helpful resources.

 


 

Deaf and Hard of Hearing Populations

Effective communication for individuals who are deaf or hard of hearing is particularly critical in health care where miscommunication may lead to misdiagnosis and improper or delayed treatment. Because critical medical information is communicated at many points throughout a health care encounter, it is important that information on communication needs be collected at the earliest point possible, such as at patient registration/admission to a hospital or during registration. The U.S. Department of Justice has issued the ADA Business Brief: Communicating with People Who Are Deaf or Hard of Hearing in Hospital Settings (PDF), which identifies situations in which providing auxiliary aids and or services may be needed to meet the deaf or hard of hearing individual's needs for effective communication. These include, but are not limited to, the following:

  • Discussing a patient's symptoms and medical condition, medications, and medical history
  • Explaining and describing medical conditions, tests, treatment options, medications, surgery, and other procedures
  • Providing a diagnosis, prognosis, and recommendation for treatment
  • Otaining informed consent for treatment
  • Communicating with a patient during treatment , testing procedures, and during physician's rounds
  • Providing instructions for medications, post-treatment activities, and follow-up treatments
  • Providing mental health services, including group or individual therapy, or counseling for patients and family members
  • Providing information about blood or organ donations
  • Explaining living wills and powers of attorney
  • Discussing complex billing or insurance matters
  • Making educational presentations, such as birthing and new parent classes, nutrition and weight management counseling, and CPR and first aid training

The following are auxiliary aids and services:

  • Qualified interpreters
  • Note-takers
  • Computer-aided transcription services
  • Written materials
  • Telephone handset amplifiers
  • Assistive listening devices
  • Assistive listening systems
  • Telephones compatible with hearing aids
  • Closed caption decoders
  • Open and closed captioning
  • Telecommunications devices for deaf persons (TDDs)
  • Videotext displays
  • Oother effective methods of making aurally delivered materials available to individuals with hearing impairments

People who are deaf or hard of hearing use a variety of ways to communicate with hearing people. Some rely on sign language interpreters or assistive listening devices. Some rely primarily on written messages. Many can speak even though they cannot hear. The method of communication and the auxiliary aids and services the health care provider must provide will vary depending upon the abilities of the person who is deaf or hard of hearing. It will also vary depending on the complexity and nature of the communications that are required. It should be recognized that a person who may use written notes or lip-reading in day-to-day situations may need a different mode of visual communication when discussing medical or financial matters.

Interpreting services should be provided by a qualified interpreter, which means an interpreter who is able to interpret effectively, accurately, and impartially both receptively and expressively, using any necessary specialized vocabulary. It is never appropriate to ask or rely on a family member or friend as an interpreter; however, if that is the request of the individual who is deaf or hard of hearing after having been informed of the availability of interpreting services, it may be considered. In certain circumstances, notwithstanding that the family member or friend is able to interpret or is a certified interpreter, the family member or friend may not be qualified to render the necessary interpretation because of factors such as emotional or personal involvement or considerations of confidentiality that may adversely affect the ability to interpret "effectively, accurately, and impartially."

The problems that may arise with having a family member or friend interpreting in a medical setting are considerable. There may be necessary information that the family member fails to communicate, in a misguided effort to shield the deaf patient. There may be questions the deaf person will not ask in the presence of the family member or friend. The family member or friend may be too emotionally upset by the medical situation to interpret correctly.

It is a common misconception that "sign language" is merely a pantomime of the English language and is therefore easily understandable in print if not through auditory means. "Sign language" is a term that describes a visually interactive language that uses a combination of hand motions, body gestures, and facial expressions. There are several different types of sign language, including those based on English (such as Cued Speech and Signed English). There are several versions of American Sign Language, and other countries have their own versions of sign language.

American Sign Language (ASL) is a manually communicated language distinct from English and whose idioms and concepts are not directly translatable into English. It uses different sentence structure, grammar, and syntax than English, and is as much a foreign language to English speaking persons as is French or German. Conversely, English is equally foreign to most deaf persons who rely on ASL for communication. ASL sentences do not follow English sequential patterns. As a result, direct translation of English, as with written notes, into an English-based sign system will not necessarily convey the intended message. Similarly, much of English idiomatic speech would be lost on the ASL user whose frame of reference for idiom is significantly different from the hearing person.

It should be noted that a relay interpreter also may be needed in situations where the individual who is deaf or hard of hearing uses the sign language of another country. See the ADA Business Brief: Communicating with People Who are Deaf or Hard of Hearing in Hospital Settings (PDF) for more detailed information.

Look to the blue Links column to the right for helpful resources.

 


 

Tools and Resources

TOOLKITS

AHIP's Data as Building Blocks for Change:  A Data Collection Toolkit for Health Insurance Plans/Health Care Organizations (PDF) supplies health insurance plans and health care organizations with the building blocks to create change and improve the care for all Americans.  This toolkit serves to expand the general knowledge about the issues surrounding data collection and its potential impact for identifying disparities and measuring quality improvement.

Conducting a Cultural Competence Self-Assessment (PDF), developed by Dennis Andrulis of SUNY/Downstate Medical Center, is a self-assessment for health care organizations wanting to conduct an audit of cultural competence.  In addition to revealing opportunities for an organization to make itself more attractive to diverse populations, conducting the self-assessment is a statement to the workforce, patients, and community that the organization values diversity and desires to increase its cultural competence.

Language Services Action Kit – Interpreter Services in Health Care Settings for People with Limited English Proficiency (PDF), National Health Law Program and the Access Project, February 2004, designed to support individuals working to ensure that people with limited English proficiency receive appropriate language services in health care settings.

Making Public Programs Work for Communities of Color: An Action Kit for Community Leaders, Minority Health Initiatives Department, Families USA, January 2006, provides community leaders with the information, tools, and resources necessary to engage in health advocacy and improve the health and well-being of their communities.

Patient-Centered Communication for Vulnerable Populations, the Ethical Force Program, American Medical Association (AMA).  This program provides a set of measures for health care organizations to address patient-centered communication for vulnerable populations.

GUIDELINES/STANDARDS

Joint Commission

Crosswalk (PDF), the Office of Minority Health (OMH) National Culturally and Linguistically Appropriate Services (CLAS) Standards crosswalked to the Joint Commission 2006 Standards for Hospitals, Ambulatory, Behavioral Health, Long Term Care, and Home Care.

Joint Commission 2006 Hospital Requirements Related to the Provision of Culturally and Linguistically Appropriate Health Care (PDF), Joint Commission on Accreditation of Healthcare Organizations, 2006.

New Requirement at Standard IM.6.20 for the Collection of Information on Language and Communication Needs (PDF), Joint Commission on Accreditation of Healthcare Organizations, January 2006.

U. S. Department of Health & Human Services, Office of Minority Health

ADA Business Brief: Communicating with People Who Are Deaf or Hard of Hearing in Hospital Settings (PDF)
U.S. Department of Justice, Civil Rights Division, October 2003.

Civil Rights Clearance for Medicare Provider Certification
U.S. Department of Health & Human Services, Office for Civil Rights, last revised December 22, 2006.

Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons, U.S. Department of Health & Human Services, Office for Civil Rights, last revised October 4, 2006. 

National Standards for Culturally and Linguistically Appropriate Services in Health Care (Final Report; PDF), U.S. Department of Health & Human Services, Office of Minority Health, March 2001.

GENERAL RESOURCES

Cultural/Ethnic/Racial

Bridging Cultures and Enhancing Care: Approaches to Cultural and Linguistic Competency in Managed Care (PDF), a 38-page report that highlights events of a national conferences sponsored by the Health Resources and Services Administration and American Public Human Services Assocation. Includes write-ups, recommendations, and tips on the Effects of Race and Ethnicity on the Delivery of Quality Health Care, Building Cultural Competence in Organizations, and Cultural Competence and Linguistically Appropriate Services in the Clinical Setting.

National Healthcare Disparities Report (PDF), 2006, provides an overview of disparities in health care among racial, ethnic, and socioeconomic groups within the U.S.  The report also tracks the progress of activities made to reduce disparities.

Worlds Apart: A Film Series on Cross-Cultural Health Care, by Maren Grainger-Monsen, MD, and Julia Haslett, Stanford University Center for Biomedical Ethics (VHS, 47 min.)

Deaf and Hard of Hearing Populations

DeafLink
Communication access for deaf America

Hearing Loss Association of America
This is the nation's largest organization for people with hearing loss. The Hearing Loss Association of America exists to open the world of communication for people with hearing loss through information, education, advocacy, and support.

Interpretek
American Sign Language interpreting for the 21st century

The Interpreter's Friend

National Association of the Deaf
This organization's mission is to promote, protect, and preserve the rights and quality of life of the deaf and hard of hearing through position and legal statements, advisory letters to federal agencies, as well as providing informational materials on the deaf and hard of hearing.

National Association of the Deaf Info Center (How Do I Become An Interpreter?)

National Technical Institute for the Deaf Deaf Index

Pinky Tells the Real Story
Videophone and Video Relay Service

Registry of Interpreters for the Deaf

Registry of Interpreters for the Deaf Interpreter Service Locator

Signs of Development CD-ROM Interpreter Training

Interpreters/Language

Hablamos Juntos (We Speak Together)
Affordable Language Services:  Implications for Health Care Organizations (PDF), September 2005. This brief provides an overview on the effects of language barriers on patient safety and quality of health care, including challenges health care organizations must address to effectively overcome such barriers.

"I Speak" Language Identification Flashcard (PDF)
This document provided by the U.S. Department of Commerce Bureau of the Census contains a reference of 38 identified languages.

International Medical Interpreters Association
This organization acts as a clearinghouse for collecting and disseminating information regarding medical interpretation and translation, and promotes research into issues regarding cross-cultural communication within health care.  As one of the largest and oldest medical interpreter associations within the country, this organization also provides interpreting services in over 70 languages.

The Interpreter's World Tour: An Environmental Scan of Standards of Practice for Interpreters (PDF), prepared for the National Council on Interpreting in Health Care, funded by The Commonwealth Fund and the California Endowment, March 2005.  Summarizes standards of practice in the areas of general interpreting, health care/medical interpreting, court and legal interpreting, community and liaison interpreting, and conference interpreting.

A National Code of Ethics for Interpreters in Health Care (PDF), the National Council on Interpreting in Health Care (NCIHC), July 2004. 

Point-to-Talk Booklets, Massachusetts General Hospital, 2002. Award-winning booklets to aid limited English proficient patients in communicating with their caregivers. 

Providing Language Services in Small Health Care Provider Settings:  Examples from the Field (PDF), National Health Law Program, funded by the Commonwealth Fund, April 2005.  Provides an eight-step plan to help providers develop a strategy to meet the needs of their LEP patients and the community.

What a Difference an Interpreter Can Make – Health Care Experiences of Uninsured with Limited English Proficiency (PDF), The Access Project, April 2002.  Compares the perceptions and experiences of adults who got an interpreter with those who needed and did not get an interpreter.

ORGANIZATIONS/PROGRAMS

The American Hospital Association (AHA), supports the national focus on eliminating racial and ethnic disparities within health care, and supports the Health Research and Educational Trust on research projects aimed in providing tools to collect race, ethnicity, and primary language in hospitals.  This organization also sponsors the Institute for Diversity in Health Management—designed to promote racial and ethnic diversity in management and executive levels within the health care industry.

The Cultural Competence Leadership Fellowship Program of the Health Research and Educational Trust (HRET) supports leaders' capacity to address health care disparities and create care delivery systems that respond to diverse needs of communities.

Expecting Success is a national program of the Robert Wood Johnson Foundation aimed at improving cardiac care for U.S. minority populations.  The program consists of hospitals that are implementing quality improvement techniques to reduce health care disparities.

National Association of Health Data Organizations (NAHDO) assists organizations on improving health care through collection, analysis,  dissemination, public availability, and use of health data.

National Health Law Program (NHeLP)
HIPAA and Language Services in Health Care, report funded by The California Endowment.

Language Access in Health Care Statement of Principles: Explanatory Guide, October 2006.

Summary of State Law Requirements Addressing Language Needs in Health Care, updated January 2006.

National Public Health and Hospital Institute (NPHHI)
Serving Diverse Communities in Hospitals and Health Systems From the Experience of Public Hospitals and Health Systems (PDF), National Public Health and Hospital Institute (NPHHI), funded by the U.S. Department. of Health and Human Services, Office of Minority Health, June 2004. Presents strategies from the various programs and approaches currently underway in National Association of Public Hospitals & Health Systems (NAPH) institutions.

Office for Civil Rights
This Web site provides information on the agency's initiatives to assist hospitals in communicating with people who are deaf, hard of hearing, or who are limited English proficient.  This site also provides information on efforts to reach African American communities regarding health disparities and race discrimination.

Patient Race & Ethnicity: Improving Hospital Data Collection & Reporting (PDF), developed by the Health Research and Educational Trust (HRET) of New Jersey (an affiliate of the New Jersey Hospital Association) through a grant funded by the Robert Wood Johnson Foundation to improve hospital practices for collecting patient race and ethnicity data.

 


 

Frequently Asked Questions

  1. What are health care disparities?

    The word disparity can be defined as "the condition or fact of being unequal." Synonyms for disparity include inequality, unlikeness, and difference. Health care disparities can be delineated by describing differences in quality of and access to health care that lead to disparities in health outcomes and may be responsive to improvements in health care.

  2. Why is data collection of patients' race, ethnicity, and primary language important?

    Data currently available on patients' race, ethnicity, and primary language are quite limited or are inaccurate. However, these data are critical to documenting the nature of disparities in health care and developing strategies to eliminate disparities and improve quality of care.

  3. What is this Toolkit?

    This Toolkit is an easy-to-use resource for health care organizations to implement a systematic method of collecting race, ethnicity, and primary language data.

  4. What is the Toolkit designed to do?

    The Toolkit is designed to answer questions about race, ethnicity, and primary language data collection. It provides the answers to the "how to" questions and addresses concerns (legal, privacy, how to ask patients, how to address concerns) about data collection.

  5. How do I use the Toolkit?

    The Toolkit is setup to be user-friendly. The table of contents provides an outline of the type of information available on the toolkit. When you click on a topic area in the table of contents, you will be given a list of the resources available (PowerPoint presentations, categories to use, survey instruments, etc.). The toolkit is designed to guide you through each step.

  6. How do I know if I need to implement this type of tool in my hospital?

    Given the changing demographics of many communities, we recommend that all hospitals and health care organizations implement a standard, systematic method of collecting race, ethnicity, and primary language data. In addition, many health care organizations need to collect these data for federal or state reporting purposes. In the near future, accreditation standards for the collection of these data may be established.

  7. How do we address patients'/family members' concerns such as, "I have been coming here for years, don't you have that information already?"

    You can use the following response or a modification of it:

    "We may have the information already, but in some instances we do not. We want to make sure that we have the correct information for everyone so we can ensure that everyone is getting the best quality of care regardless of his/her race/ethnicity."

  8. Our system does not allow for splitting race and ethnicity as recommended by the Office of Management and Budget (OMB) 1997 revisions. How can we capture and report both these components?

    Hospitals may use one question format with ethnicity included in race if this meets their patient populations' needs. However, the race question must be asked. Hospitals may list race/ethnicity combinations as follows. (Also please go to How To Ask the Questions section of the Toolkit for details.)

    Hispanic/Latino-White
    Hispanic/Latino-Black or African American

  9. We already captured race/ethnicity using the OMB categories, but we have added other options in our registration screens. Do we have to change these to match OMB?

    It is fine to capture additional information or to add more granular categories.

  10. How do we report individuals who want to identify more than one race/ethnicity? Our registration system allows us to only select one category.

    You can add a category for "some other race" or, if your systems allow you to capture more than one category, record both.

  11. Does the Joint Commission on Accreditation of Healthcare Organizations currently have standards for collecting race, ethnicity, and primary language data?

    The Joint Commission does not currently have a standard for race/ethnicity data collection, but it did issue a new standard in January 2006 requiring the collection of primary language information from patients.

  12. Is it okay to first pilot test race/ethnicity/language data collection in one or two units?

    Yes, it is acceptable and recommended that you pilot your new data collection system. You may want to consider pilot testing in both inpatient and outpatient settings.

  13. When is the best time to start communicating these changes to the community and our patient population?

    As soon as possible. You can use your hospital newsletter, community meetings, e-mail, and other venues at your disposal. You may also want to develop an informational pamphlet (in conjunction with your community relations department) that registration staff can hand out to patients.

  14. Should we ask patients for their race/ethnicity/primary language each time they come to the hospital?

    If your hospital's patient registration screen can be flagged for each patient to show that the race/ethnicity/language information was captured after the training and introduction of your new system, then you do not have to ask these questions every time. However, if you do not maintain a database (e.g., this information is purged every three months) or if your system does not allow for flagging, you may need to ask patients each time they come the hospital. We recommend that you develop a system that enables you to capture the information only once with periodic updates (e.g., every two years).

  15. What should we do if patients "refuse" or "decline" to answer the race/ethnicity questions?

    It is best to flag these patients and NOT ask again. Record these as "declined." You do not want to offend patients or push the issue. Based on our experience, the percentage of refusals is very small.

  16. Should the script for asking race/ethnicity/language questions be in paper or electronic format?

    This decision is up to each hospital. It is easier for staff if the script is on the patient registration screen, but some hospitals have indicated that there is not enough room on their screens to accommodate this option. When the script cannot be placed directly on the screen, it is best to have laminated cards, with the script typed in large bold-faced font, at each registration station.

  17. Is it okay to record race/ethnicity by observation when it is obvious to the staff and especially if the person has been coming to the hospital for years?

    No. All information on race/ethnicity/language needs to be captured through self-report of the patient or his/her caregiver. Otherwise the person is recorded as either "declined" or "unavailable" (see definitions for specifications).

 


 

 

 

 

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