Patient Protection and Affordable Care Act
Public Health Initiatives: Support for Prevention and Public Health Innovation

Sec. 4302 Understanding Health Disparities: Data Collection and Analysis

• Data Collection. The Secretary of Health and Human Services must facilitate the collection of demographic data by any health care or public health program supported by the federal government within two years of the ACA’s enactment.270 Data collected must include (1) the “race, ethnicity, sex, primary language, and disability status” of individuals that apply, participate in, or receive benefits from an applicable program; (2) “data at the smallest geographic level such as State, local, or institutional levels if such data can be aggregated;” (3) data that is sufficient to provide “statistically reliable estimates by racial, ethic, sex, primary language, and disability status subgroups for applicants, recipients or participants using, if needed, statistical oversamples of these subpopulations; and” (4) data identified by the Secretary.271 Data collected pertaining to racial and ethnic minorities must also include data on underserved rural and frontier populations.272

• Collection Standards. The Secretary will establish data collection standards pursuant to the following criteria: (1) use the standards of the Office of Management and Budget as the minimum measure for race and ethnicity; (2) create standard measures for sex, primary language, and disability status; (3) create standards for the collection or demographic data that allows for self reporting by participants and collection from parents or legal guardians; (4) conduct a survey of providers regarding the amount of access that individuals with disabilities have to care and treatment; focusing on the types of facilities available (e.g. primary care, long-term care), quantity of providers with sufficient treatment facilities and the amount of providers “trained in disability awareness and patient care of individuals with disabilities;” and (5) mandate that reports made pursuant to the quality reporting requirements of health care and public health programs include data regarding the race, ethnicity, sex, primary language, and disability status of participants.273
• Data Management. The Secretary, through the National Coordinator for Health Information Technology, must develop standards for managing collected data and “interoperability and security systems for data management.”274
• Data Analysis and Reporting. The Secretary must analyze the data collected in order to “detect and monitor trends in health disparities…at the Federal and State levels.”275 The Secretary has discretion to share the results of the analysis with appropriate entities, but must share the results with the Office of Minority Health, National Center on Minority Health and Health Disparities,276 AHRQ, CDC, CMS, IHS, Office of Rural Health, and other HHS agencies.277  The Secretary must report disparity data and analysis on the HHS website and through any other appropriate means.278 The Secretary has discretion to provide the disparity data and analysis to additional federal agencies, private entities, and the public for the purpose of research, analysis, or dissemination. However, such data sharing may occur “in accordance with any Federal agency’s data user agreements.”279
• Limitations and Protections. The Secretary cannot use the data collected “in a manner that would adversely affect any individual” and must protect the data.280 In particular, the Secretary must ensure (1) that data collection occurs with privacy protections greater than or equal to those established pursuant to HIPPA; and (2) that data is protected from inappropriate use by entities that receive, collect, or store the data. The Secretary must also make sure that “all appropriate information security safeguards are used” during data collection, analysis, and sharing.281 The Secretary must create procedures for sharing data.282

Sec. 4303 CDC and Employer-Based Wellness Programs

• Technical Assistance. The Secretary of Health and Human Services must provide technical assistance for the expansion of employer-based wellness programs.283 In particular, the Secretary must provide assistance in: (1) measuring participation and the means of increasing participation in wellness programs; (2) “developing standardized measures that assess policy, environmental and systems changes necessary to have a positive health impact on employee’s health behaviors, health outcomes, and health care expenditures;” and (3) evaluate the effect of the wellness program on the health status, absenteeism, productive, injury rate, and medical costs of employees.284 The Secretary must also assist employers in the evaluation of their wellness programs by providing training and other resources.285

Worksite Wellness Study, The Director of the CDC must conduct, no later 2012, a survey of workplace wellness policies and programs in order to obtain data for use in assessing and developing instruments to evaluate these policies and programs.286 The Director must subsequently use the results to provide Congress with recommendations for implementing “effective employer-based health policies and programs.”287