Background

Research has demonstrated that members of racial and ethnic minority groups are in poorer health and receive fewer health care services and lower quality health care, even when controlling for factors such as insurance and socioeconomic status.^[1] However, race, ethnicity, and primary language data are not routinely collected by government agencies, health care providers, or health plans and insurers, even though no federal and few state laws prohibit it.

Title VI of the Civil Rights Act of 1964^[2]—which broadly prohibits discrimination on the basis of race, ethnicity, or national origin by federally funded entities and programs—anticipates covered entities will collect such data as part of ongoing efforts to assure compliance.^[3] But Title VI does not require data collection, nor does it require that covered entities follow any particular methodology when doing so.^[4] The lack of this data, experts have noted, make it hard to improve health care quality for racial- and ethnic-minority patients.

Changes Made by the Health Reform Law
P.L. 111-148, § 10334

The health reform law requires the Secretary of Health and Human Services to ensure that any “ongoing or federally conducted or supported health care or public health program, activity, or survey” collects and reports 1) data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or participants; 2) data at the smallest geographic level if such data can be aggregated; 3) sufficient data to generate statistically reliable estimates according to targeted categories; and 4) any other demographic data as deemed appropriate by the Secretary regarding health disparities. The law provides that all data collection activities will be protected under the same privacy protections that are at least as broad as those under HIPAA and from all inappropriate internal use by any entity that collects, stores, or receives the data.^[5]

The law also provides that the new data collection requirements apply to the states under the data collection activities at the state level for Medicaid and CHIP programs.^[6]

The law also reorganizes federal oversight within HHS of activities aimed at reducing disparities in health and health care by transferring the HHS Office of Minority Health (OMH) from the Office of Public Health and Science to the Office of the Secretary and directs that the head of the office be appointed as the Deputy Assistant Secretary for Minority Health.^[7] It also:

• Establishes Offices of Minority Health within numerous HHS agencies, including the CDC, HRSA, CMS, AHRQ, FDA, and SAMHSA;^[8] and
• Renames the National Center on Minority Health and Health Disparities as the        National Institute on Minority Health and Health Disparities and brings greater specificity to the responsibilities of the Institute Director, including planning, coordinating, reviewing, and evaluating research and other activities conducted or supported by the Institutes and Centers of the National Institutes of Health.^[9]

Finally, the law also authorizes investments in community grants, directing the Secretary to award grants to public and nonprofit private entities in communities of color to improve the health status of racial and ethnic minorities.^[10]

Implementation

Agencies and Timeline

HHS is the responsible agency for implementing the law.  The law requires the Secretary to ensure that data collection by any ongoing or federally conducted or supported health care or public health program, activity, or survey begin within two years following the date of enactment.^[11] It also requires that the Secretary submit a report to Congress describing the activities carried out by the Office of Minority Health within one year of March 23, 2010, and biannually thereafter.^[12]

Process

The health reform law does not provide specific direction to HHS regarding the administrative process used to implement the law.  The agency therefore has the discretion to use a range of tools to implement the statute, such as publishing regulations in the Federal Register with a public notice and comment period, or using other types of approaches such as posted policy instructions, funding availability announcements (where applicable), official letters to affected entities (such as letters to state Medicaid agencies), and posted rulings and notices.  Agency websites can be checked regularly for updates.

Key Implementation Issues

• Relationship to Title VI: How will the data collection requirements under the health reform law interact with existing requirements under the 1964 Civil Rights Act?  Will entities that follow federal data collection requirements under the health reform law be deemed in compliance with Title VI data collection requirements?
• Requirements that extend the reach of Title VI: Title VI applies only to federally supported entities; however, the new requirement reaches both federally supported and conducted activities.  How will these differences be translated into new data collection responsibilities?  Are there programs or activities previously not covered by Title VI that will be covered by these new requirements?
• Relationship to state laws: Will the new data collection requirements be interpreted as pre-empting state laws that prohibit or impede race- and ethnicity-based data collection in any program?
• Enforcement: What procedures will the Secretary use to assure that covered entities with reporting duties comply with the law’s requirements?
• Uses of data: How will the Secretary assure that data, once collected, are used to guide federal program management and policy development and decision-making?
• Awards to communities: What conditions and expectations will be attached to the grants awarded to public and nonprofit private entities in communities of color?  By what methods will the Secretary develop measures to evaluate community outreach activities, language services, and workforce cultural competence?

Recent Agency Action

No action has been taken as of this writing.

Authorized Funding Levels

• For the purpose of carrying out the data collection provision, Congress authorized to be appropriated “such sums” (i.e., subject to annual appropriations decisions) as may be necessary for each of fiscal years 2010 through 2014. However, the law also says that “data may not be collected under this section unless funds are directly appropriated for such purpose in an appropriations act.”^[13]
• For the purpose of carrying out the grants to improve minority health, the law authorizes such sums as may be necessary for each of fiscal years 2011 through 2016.^[14]
• For the purpose of transferring the Office of Minority Health from the Office of Public Health and Science to the Office of the Secretary, all funds related to the operation of the Office are transferred to the Office of the Secretary.^[15]