Why Collect Race, Ethnicity and Primary Language

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 prominent studies documenting this problem. Similar evidence suggests that disparities also exist according to gender and disability status. Therefore a clear need exists to document and improve the quality of care provided to vulnerable populations. Data to track these disparities and develop effective programs to reduce and eliminate them is beneficial.

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.

  • 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.


    Patients with limited English proficiency or 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.


    The communication needs of deaf, hard of hearing and visually impaired 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 or visually impaired. 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
    • Videotext displays
    • Other effective methods of making aurally delivered materials available to individuals with hearing impairments
    • Qualified readers
    • Taped texts
    • Audio recordings
    • Braille materials
    • Large-print materials or other methods of making visually delivered materials available to individuals with visual impairments

    In most circumstances, the patient who is deaf or hard of hearing or visually impaired 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 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 language and disability information, most recently with the 2011 adoption of Section 4302 of the Patient Protection and Affordable Care Act (PPACA) that contains provisions to strengthen federal data collection efforts by requiring that all health surveys sponsored by HHS collect it. The law also provides HHS the opportunity to collect additional demographic data to further improve our understanding of health care disparities.

In addition, the standards for Meaningful Use Certification Criteria requires the recoding of demographic information in such a way that enables the user to electronically record, modify, and retrieve patient demographic data including preferred language, sex, race, and ethnicity, in accordance with the OMB Standards

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 also 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)

Accreditation Requirements

In January of 2006, the Joint Commission issued a standard requiring health care organizations to collect patient's primary language information. This was followed by a new standard in 2011 calling for the collection of race and ethnicity data. Similar actions have been taken by the NCQA as well.