General agreement prevails that racial, ethnic, and primary language data are critical to promote health and quality health care for all Americans.
Despite these findings, federal data collection is not uniform. Data requirements and methods for collection and reporting vary across federal agencies and do not fully reflect consensus on the value of gathering this information (Perot and Youdelman, 2001).
Four states—(California, Maryland, New Hampshire, and New Jersey)—have laws or regulations barring health plans from collecting data on race and ethnicity. This prohibition has a significant impact on racial and ethnic data collection, as these states have high HMO penetration rates: California, 48.5 percent; Maryland, 27.8 percent; New Hampshire, 25.9 percent; and New Jersey, 27 percent. The regulations are summarized in the following sections:
California has a provision in its insurance code that prohibits health insurers from identifying or requesting an applicant’s race, color, religion, ancestry, or national origin on an insurance application. Since managed care organizations (other than Preferred Provider Organizations [PPO]) are not subject to the insurance code, they are not bound by this provision.
Note: The DMHC has collected information from MCOs to determine how they address any cultural and linguistic barriers faced by their members. The Office of the Patient Advocate surveyed all the MCO chief executive officers in the state concerning their cultural and linguistic access policies. The responses were voluntary and the results were incorporated into a recently published consumer report card. A table showing some of the services HMOs provide for their members in other languages or in American Sign Language, such as interpreter services and written materials, is available at the California Office of the Patient Advocate’s Web site at http://www.opa.ca.gov/report_card/.
Maryland has a statute that prohibits the collection of certain racial or ethnic data. The statute states that “an insurer … may not make an in-