New Report Urges HIPAA Support of Racial/Ethnic Health Data Sharing

NEW YORK CITY, October 18, 2001 -- A new report from The Commonwealth Fund finds wide gaps between the goals of federal initiatives to eliminate racial and ethnic disparities in health care -- such as Healthy People 2010 and the Office of Minority Health's Culturally and Linguistically Appropriate Standards (CLAS) -- and how federal health agencies are collecting the data needed to achieve these goals. The report, Racial, Ethnic, and Primary Language Data Collection in the Health Care System: An Assessment of Federal Policies and Practices, calls for the U.S. Department of Health and Human Services (HHS) to take a leadership role in meeting the challenges of collecting and reporting health data that include information on race, ethnicity, and primary language. The report provides the first comprehensive analysis of the policies and statutes governing the collection of health care data by race, ethnicity, and primary language, and points to wide agreement among health administrators about the need to collect these data to improve the quality of care delivered and to achieve equitable access to health care.

"Health care leaders and policymakers universally recognize the need for accurate health data to assess progress in achieving goals-and one of our most important goals is to eliminate racial and ethnic disparities in our health care system to ensure that all Americans receive quality health care," said Karen Davis, president of The Commonwealth Fund.

In interviews conducted with administrators at federal health agencies, the authors of the new study, Ruth T. Perot of Summit Health Institute for Research and Education, Inc. (SHIRE) and Mara Youdelman of the National Health Law Program, Inc. (NHeLP), heard reports of widespread confusion in the health care sector about the legality of collecting information on the race and ethnicity of people served by their programs. Health administrators also reported concerns over misuse or misinterpretation of data, lack of standards or enforcement, and technical difficulties in collecting or using the data, and noted a direct link between the availability of data and the formulation of agency policy and resource allocation. Those interviewed agreed that administrative, service, and research data on race, ethnicity, and primary language should be collected and reported systematically at the federal and state levels as a way to promote public health, achieve more equitable access to health care, improve quality of care delivered, counter discrimination, and promote delivery of culturally competent health services.

The authors also conducted an exhaustive analysis of statutes and regulations governing collection and reporting of data on race, ethnicity, and primary language, finding a clear mandate for legally collecting these data, chiefly under the Title VI Civil Rights Act of 1964. The report describes a number of recent policies on collecting racial, ethnic, and primary language data. However, the methods for collecting and reporting the data vary widely and do not reflect consensus on the value of gathering the data.

The report recommends that HHS recommit to the national goal of eliminating racial and ethnic disparities in health through policies and actions that will ensure collection and reporting of data necessary to support and facilitate achievement of this goal. Specific recommendations include:

• Ensure that federally supported programs such as Medicare, Medicaid, and the State Children's Health Insurance Program (SCHIP) collect and report data for their enrollees by race, ethnicity, and primary language. Independent analysts estimate that the Social Security Administration's Medicare beneficiary eligibility file is less than 60 percent accurate for all racial/ethnic classifications other than black or white. Data collection and reporting by states are often inconsistent and incomplete.
  
  
• Require that the Health Plan Employer Data and Information Set (HEDIS) and standards for implementing the Health Insurance Portability and Accountability Act (HIPAA) include collection of data by race, ethnicity, and primary language. Racial and ethnic categories used under HIPAA must be compliant with Office of Management and Budget (OMB) standards.
  
  
• Ensure access to quality health care for people with limited English proficiency by collecting data and monitoring adherence.
  
  
• Require that new program initiatives, including block grants, collect and report racial, ethnic, and primary language data, and provide resources to comply with the requirements.
  
  
• Assure that HHS encourage public and private agencies to improve and promote racial, ethnic, and primary language data collection and reporting and provide information (including a "tool kit") and expertise to help them do so, and facilitate data-sharing among agencies.
  
  
• Inform insurers, health plans, providers, agencies, and the general public that data collection and reporting by race, ethnicity, and primary language are legal and often required by law. Raise public awareness that data collection is needed to achieve Healthy People 2010 goals, and to comply with Title VI nondiscrimination requirements.
  
  
• Assure that states and providers have greater access to federally acquired data.
  
  
• Support research on existing best practices for collection and reporting of data by race, ethnicity, and primary language.

"A commitment by HHS to ensure the collection and reporting of data necessary to support the goal of eliminating racial and ethnic health disparities will require budgetary
resources," said Perot. "In addition, HHS will need to supervise dissemination, implementation, and compliance with the policy."