Assessment of State Laws, Regulations and Practices Affecting the Collection and Reporting of Racial and Ethnic Data by Health Insurers and Managed Care Plans

The Project

Under contract to the Office of Minority Health (OMH), the National Health Law Program, Inc. (NHeLP) of Los Angeles, Calif., is analyzing the status and the perceptions of state laws and actual practices of selected health plans, health insurers, and governing entities regarding collection and reporting of racial and ethnic data by health insurers and managed care plans.

The project responds to a recommendation of the 2002 Institute of Medicine report on health care disparities.

Results of the first phase – analysis of state laws (including case law), regulations, and other written policies regarding the collection of racial and ethnic data in health care among 50 states and the District of Columbia – are available below.

The second phase of the project is also described below, and results are expected later in 2004.

Data Collection and Health Disparities

Since a large percentage of the U.S. population receives its health care through managed care organizations and private health insurers, it is important that these entities have a clear understanding of what is allowable and feasible with regard to racial and ethnic data collection, and become active partners in the quest for equal access to quality and appropriate health care services for the Nation's diverse populations.

The limited information available indicates that racial and ethnic minorities suffer impeded access to health services and poor quality of care, and are less likely to have health insurance compared to Whites. In 2001, over one-third of non-elderly Latinos were uninsured (35 percent), followed by American Indians/Alaska Natives (27 percent), African Americans (20 percent), Asian Americans and Pacific Islanders (19 percent), and Whites (12 percent). During 2000, 27 percent of Latinos lacked a health care visit in the last year, compared to 21 percent of American Indians/Alaska Natives, 20 percent Asian Americans, 17 percent African Americans and 15 percent Whites. American Indians/Alaska Natives, African Americans, and Latinos are more likely to rate their health as fair or poor. Disparities like these have proved persistent.

Current Status of Data Collection by Race and Ethnicity

Racial and ethnic data are not routinely collected by many health service delivery systems or insurers, most likely stemming in part from their confusion about whether relevant laws and regulations prohibit or allow such data collection. The lack of data on enrollees' race and ethnicity is a major barrier to performance measurement and clinical quality improvement efforts. And despite the apparent benefits and need, many perceive that there are legal barriers to collecting such data and believe that Title VI of the Civil Rights Act of 1964, Federal regulations, and/or state laws or regulations prohibit these entities from collecting racial and ethnic data.

Federal Law and Court Decisions

The Title VI of the Civil Rights Act of 1964 neither prohibits nor mandates the collection of racial and ethnic data. In Madison-Hughes v. Shalala (1996), the United States Court of Appeals for the Sixth Circuit held: (1) Title VI prohibits discrimination on the grounds of race, color, or national origin, but neither the language of Title VI nor applicable regulations require the U.S. Department of Health and Human Services (HHS) to routinely collect racial and ethnic data; and (2) data collection is a means of ensuring compliance with Title VI, but the collection of racial and ethnic data and the methodology of data collection is not mandatory, but left to HHS's discretion.

HHS Policies on Data Collection by Race and Ethnicity

HHS has a department-wide inclusion policy stating that the minimum standard categories of racial and ethnic groups specified in the Office of Management and Budget (OMB) Directive 15 and any of its revisions should be collected and reported in all HHS data collection activities. Directive 15 required the minimum five (5) racial and ethnic categories were American Indian or Alaskan Native, Asian or Pacific Islander, Black, Hispanic, and White. The revised OMB standards for the classification of Federal data on race and ethnicity were effective on January 1, 2003. At a minimum, the six (6) racial and ethnic categories are American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, Native Hawaiian or Other Pacific Islander, and White.

State Data Collection

Following its recent comprehensive review of existing racial and ethnic health disparities, the Institute of Medicine (IOM) reinforced the issue. In Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, the IOM states that "[w]hile the vast majority of states do not prohibit collection of patients' race and ethnicity data, some may impose restraints on when and how such data may be collected." It recommends that "[t]he extent of these restraints must be assessed and this information provided to managed care organizations and payors to avoid confusion over what kinds of data collection are allowed, and under what circumstances."

Prior to this project, limited effort has been made to document and review state laws specifically prohibiting and/or mandating the collection of race and ethnicity data by health plans and insurers. This fact has undoubtedly contributed to the widespread state of legal uncertainty surrounding this issue. A comprehensive and clear review of state laws, regulations, and practices regarding the collection of racial and ethnic data was necessary to clarify what is allowable and reasonable, in order to identify and address existing barriers to the collection of appropriate data to help monitor health care access and quality.

Ongoing Work

This project is conducted in two phases. In Phase Two, 20 states will be visited to conduct interviews with health plans, health insurers, and state government offices for an analysis of the interpretation, implementation, and effect of the laws and policies inventoried in Phase One, including review of the routine practice of collecting or questioning such data, as well as an analysis of the extent to which these laws intersect with civil rights laws and, if so, the interplay between these policies. This project is expected to be completed in 2004.

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