Report looks at need for collecting race data
A new report from The Commonwealth Fund may help access personnel understand and better explain the importance of collecting racial and ethnic data during patient registration.
The report finds wide gaps between the goals of federal initiatives to eliminate racial and ethnic disparities in health care and how federal health agencies are collecting the data needed to achieve those goals.
Taking the lead
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.
In interviews conducted with administrators at federal health agencies, the authors of the study, Ruth T. Perot of Summit Health Institute for Research and Education Inc. and Mara Youdelman of the National Health Law Program Inc., 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.
Recommendations to HHS
The report recommends, among other things, that HHS take these steps:
• 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% accurate for all racial/ ethnic classifications other than black or white.
• Require that the Health Plan Employer Data and Information Set and standards for implementing the Health Insurance Portability and Accountability Act 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 standards.
• Ensure access to quality health care for people with limited English proficiency by collecting data and monitoring adherence.
• 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.
• 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.
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