42 U.S.C. § 300kk — Data collection, analysis, and quality

(a) Collecting the data: Within 2 years of March 23, 2010, any health care or public health program, activity, or survey the federal government runs or funds — including the Current Population Survey and the American Community Survey — must, as much as practical, collect and report: data on the race, ethnicity, sex, primary language, and disability status of the people applying for, receiving, or taking part in it; data broken down to the smallest geographic level (state, local, or institutional) that can be combined into larger totals; enough data to produce statistically reliable numbers for each racial, ethnic, sex, language, and disability subgroup — oversampling small groups if needed; and any other demographic data the Secretary thinks is useful for studying health disparities. In collecting it, the Secretary must use, at minimum, existing federal standards for race and ethnicity; create new standards for measuring sex, primary language, and disability status; make sure the data comes from people self-reporting (or from a parent or guardian if the person is a minor or legally unable to answer for themselves); survey health care providers to find out where people with disabilities get care, how many providers have accessible facilities and equipment — including diagnostic equipment that meets minimum accessibility standards — and how many staff are trained in disability awareness and care; and require any program measuring health care quality to also collect this same race, ethnicity, sex, language, and disability data. The Secretary, through the National Coordinator for Health Information Technology, must also set national standards for managing this data and build systems that let it be shared securely and consistently between systems. (b) Analyzing the data: For each federally run or funded program, the Secretary must analyze the collected data to find and track trends in health disparities, both nationally and by state. (c) Sharing the results: The Secretary must give these analyses to a list of federal offices — including the Office of Minority Health, the National Center on Minority Health and Health Disparities, the Agency for Healthcare Research and Quality, the CDC, the Centers for Medicare & Medicaid Services, the Indian Health Service and tribal epidemiology centers, the Office of Rural Health, other parts of HHS, and any other group the Secretary decides should get them. The Secretary must also post the data and analyses publicly on HHS websites and through any other method the Secretary thinks fits, and may make the underlying data available for more research to other federal agencies, outside groups, and the public, under standard data-sharing agreements. (d) A limit on how the data can be used: Nothing in this section allows anyone to use this information in a way that hurts any individual. (e) Protecting and sharing the data: The Secretary must make sure — through regulations or other means — that all data collected under this section gets privacy protection at least as strong as the protection given to other health data under HIPAA, is shielded from being misused internally (including being used to help decide someone's eligibility for a health plan) or in any other inappropriate way the Secretary identifies, and is kept secure through appropriate information-security safeguards. The Secretary must also set up procedures for sharing this data, related measures, and analyses with other relevant federal and state agencies, including the ones listed in subsection (c). (f) Rural data: Whatever data this section requires on racial and ethnic minorities must also be collected for underserved rural and frontier populations. (g) Funding: Congress could appropriate whatever amount was needed to carry out this section for each of fiscal years 2010 through 2014. (h) A condition on collecting data: Despite everything else in this section, data may not actually be collected unless Congress specifically appropriates money for that purpose in an appropriations law. (i) Who the Secretary must consult: In carrying out this section, the Secretary must consult with the Director of the Office of Personnel Management, the Secretary of Defense, the Secretary of Veterans Affairs, the Director of the Census Bureau, the Commissioner of Social Security, and the heads of other relevant federal agencies.