U.S Code last checked for updates: May 26, 2024
§ 300kk.
Data collection, analysis, and quality
(a)
Data collection
(1)
In general
The Secretary shall ensure that, by not later than 2 years after March 23, 2010, any federally conducted or supported health care or public health program, activity or survey (including Current Population Surveys and American Community Surveys conducted by the Bureau of Labor Statistics and the Bureau of the Census) collects and reports, to the extent practicable—
(A)
data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or participants;
(B)
data at the smallest geographic level such as State, local, or institutional levels if such data can be aggregated;
(C)
sufficient data to generate statistically reliable estimates by racial, ethnic, sex, primary language, and disability status subgroups for applicants, recipients or participants using, if needed, statistical oversamples of these subpopulations; and
(D)
any other demographic data as deemed appropriate by the Secretary regarding health disparities.
(2)
Collection standards
In collecting data described in paragraph (1), the Secretary or designee shall—
(A)
use Office of Management and Budget standards, at a minimum, for race and ethnicity measures;
(B)
develop standards for the measurement of sex, primary language, and disability status;
(C)
develop standards for the collection of data described in paragraph (1) that, at a minimum—
(i)
collects self-reported data by the applicant, recipient, or participant; and
(ii)
collects data from a parent or legal guardian if the applicant, recipient, or participant is a minor or legally incapacitated;
(D)
survey health care providers and establish other procedures in order to assess access to care and treatment for individuals with disabilities and to identify—
(i)
locations where individuals with disabilities access primary, acute (including intensive), and long-term care;
(ii)
the number of providers with accessible facilities and equipment to meet the needs of the individuals with disabilities, including medical diagnostic equipment that meets the minimum technical criteria set forth in section 794f of title 29; and
(iii)
the number of employees of health care providers trained in disability awareness and patient care of individuals with disabilities; and
(E)
require that any reporting requirement imposed for purposes of measuring quality under any ongoing or federally conducted or supported health care or public health program, activity, or survey includes requirements for the collection of data on individuals receiving health care items or services under such programs activities 1
1
 So in original.
by race, ethnicity, sex, primary language, and disability status.
(3)
Data management
In collecting data described in paragraph (1), the Secretary, acting through the National Coordinator for Health Information Technology shall—
(A)
develop national standards for the management of data collected; and
(B)
develop interoperability and security systems for data management.
(b)
Data analysis
(1)
2
2
 So in original. No par. (2) has been enacted.
In general
(c)
Data reporting and dissemination
(1)
In general
The Secretary shall make the analyses described in (b) 4
4
 So in original. Probably should be preceded by “subsection”.
available to—
(A)
the Office of Minority Health;
(B)
the National Center on Minority Health and Health Disparities;
(C)
the Agency for Healthcare Research and Quality;
(D)
the Centers for Disease Control and Prevention;
(E)
the Centers for Medicare & Medicaid Services;
(F)
the Indian Health Service and epidemiology centers funded under the Indian Health Care Improvement Act [25 U.S.C. 1601 et seq.];
(G)
the Office of Rural health; 5
5
 So in original. Probably should be “Health;”.
(H)
other agencies within the Department of Health and Human Services; and
(I)
other entities as determined appropriate by the Secretary.
(2)
Reporting of data
The Secretary shall report data and analyses described in (a) 6
6
 So in original. Probably should be preceded by “subsections”.
and (b) through—
(A)
public postings on the Internet websites of the Department of Health and Human Services; and
(B)
any other reporting or dissemination mechanisms determined appropriate by the Secretary.
(3)
Availability of data
(d)
Limitations on use of data
(e)
Protection and sharing of data
(1)
Privacy and other safeguards
The Secretary shall ensure (through the promulgation of regulations or otherwise) that—
(A)
all data collected pursuant to subsection (a) is protected—
(i)
under privacy protections that are at least as broad as those that the Secretary applies to other health data under the regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996 (Public Law 104–191; 110 Stat. 2033); and
(ii)
from all inappropriate internal use by any entity that collects, stores, or receives the data, including use of such data in determinations of eligibility (or continued eligibility) in health plans, and from other inappropriate uses, as defined by the Secretary; and
(B)
all appropriate information security safeguards are used in the collection, analysis, and sharing of data collected pursuant to subsection (a).
(2)
Data sharing
(f)
Data on rural underserved populations
(g)
Authorization of appropriations
(h)
Requirement for implementation
(i)
Consultation
(July 1, 1944, ch. 373, title XXXI, § 3101, as added Pub. L. 111–148, title IV, § 4302(a), Mar. 23, 2010, 124 Stat. 578.)
cite as: 42 USC 300kk