While acknowledging the importance of racial and ethnic (r/e) data collection in identifying r/e disparities in access to and quality of health care, and in monitoring and ensuring progress towards elimination of such disparities, representatives of many health insurers and managed care organizations (MCOs) have not collected such data, due at least in part to misconceptions, misinterpretations, and confusion about what existing laws, regulations, and other written rules do and do not allow regarding the collection and use of r/e data. Thus, this project was undertaken to clarify the nature and extent of state laws, regulations, policies, and practices prohibiting or allowing the collection and use of r/e data by health plans and insurers. The project was conducted in two phases. Phase I consisted of a comprehensive secondary data search review, and analysis of laws and regulations in all 50 states and the District of Columbia addressing the collection, reporting, and use of r/e and primary language data. This examination also included the extent to which MCOs and health insurers can collect and report information on the applicants and enrolled members by race and ethnicity, existing interpretation of state laws and regulations governing these entities, parameters and overlap of civil rights versus insurance and managed care laws, and practices of the state officials and these entities at the state level. Phase II involved site visits to, and key informant interviews in, 20 states selected on the basis of criteria informed by Phase I (e.g., whether the State had statutes prohibiting or requiring r/e data collection by health insurers or MCOs). Using a standardized interview protocol, interviews were conducted with State representatives responsible for insurance, public health, and the Medicaid and State Children’s Health Insurance Programs (SCHIP) programs as well as with those from influential MCOs and indemnity plans. During the interviews, in-depth examinations were conducted of actual data collection and reporting practices; analyses of the interpretation, implementation, and effects of laws and policies identified in Phase I; and problems and potential solutions. Key Phase I findings concerning r/e data collection, anti- discrimination provisions, confidentiality, and Medicaid (SCHIP and managed care) practices are presented in individual reviews and reports for each of the 50 states and the District of Columbia. Results of the Phase II site visits are also presented in individual reports for the selected states, along with general observations of common responses, practices, and hurdles that emerged during the course of the interviews. The study concluded that the vast majority of states do not generally prohibit or require the collection or reporting of r/e or primary language data by health insurers, plans, or providers, although many do collect such data in various contexts. Also, although commercial insurers and health plans interviewed do not generally collect such data, those that do so recognize its benefits for monitoring, improving, and ensuring quality health care for all and could be used as models for others seeking the same end.
PIC ID: 7479; Agency Sponsor: OPHS-OMH, Office of Minority Health; Federal Contact: Woo, Violet Ryo- Hwa, 301-496-5343, and Welsh, Valerie, 240-453-8222; Performer: National Health Law Program, Washington, DC