photo top HRET Disparities Toolkit
A toolkit for collecting race, ethnicity, and primary language information from patients.
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Why Collect Demographic and Communications Data

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)

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

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