to provide race, ethnicity, and primary language 
data. 
‘‘(2) RULES
OF
CONSTRUCTION.—Nothing in 
this subsection shall be construed to— 
‘‘(A) permit the use of information col-
lected under this subsection in a manner that 
would adversely affect any individual providing 
any such information; and 
‘‘(B) require health care providers to col-
lect data. 
‘‘(b) PROTECTION OF DATA.—The Secretary shall 
ensure (through the promulgation of regulations or other-
wise) that all data collected pursuant to subsection (a) is 
protected— 
‘‘(1) under the same privacy protections as the 
Secretary applies to other health data under the reg-
ulations promulgated under section 264(c) of the 
Health Insurance Portability and Accountability Act 
of 1996 (Public Law 104–191; 110 Stat. 2033) re-
lating to the privacy of individually identifiable 
health information and other protections; and 
‘‘(2) from all inappropriate internal use by any 
entity that collects, stores, or receives the data, in-
cluding use of such data in determinations of eligi-
bility (or continued eligibility) in health plans, and 
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from other inappropriate uses, as defined by the 
Secretary. 
‘‘(c) NATIONAL PLAN OF THE DATA COUNCIL.—The 
Secretary shall develop and implement a national plan to 
improve the collection, analysis, and reporting of racial, 
ethnic, and primary language data at the Federal, State, 
territorial, Tribal, and local levels, including data to be 
collected under subsection (a). The Data Council of the 
Department of Health and Human Services, in consulta-
tion with the National Committee on Vital Health Statis-
tics, the Office of Minority Health Disparity Elimination, 
and other appropriate public and private entities, shall 
make recommendations to the Secretary concerning the 
development, implementation, and revision of the national 
plan. Such plan shall include recommendations on how 
to— 
‘‘(1) implement subsection (a) while minimizing 
the cost and administrative burdens of data collec-
tion and reporting; 
‘‘(2) expand awareness among Federal agencies, 
States, territories, Indian tribes, health providers, 
health plans, health insurance issuers, and the gen-
eral public that data collection, analysis, and report-
ing by race, ethnicity, and primary language is legal 
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and necessary to assure equity and non-discrimina-
tion in the quality of healthcare services; 
‘‘(3) ensure that future patient record systems 
have data code sets for racial, ethnic, and primary 
language identifiers and that such identifiers can be 
retrieved from clinical records, including records 
transmitted electronically; 
‘‘(4) improve health and healthcare data collec-
tion and analysis for more population groups if such 
groups can be aggregated into the minimum race 
and ethnicity categories, including exploring the fea-
sibility of enhancing collection efforts in States for 
racial and ethnic groups that comprise a significant 
proportion of the population of the State; 
‘‘(5) provide researchers with greater access to 
racial, ethnic, and primary language data, subject to 
privacy and confidentiality regulations; and 
‘‘(6) safeguard and prevent the misuse of data 
collected under subsection (a). 
‘‘(d) COMPLIANCE WITH STANDARDS.—Data col-
lected under subsection (a) shall be obtained, maintained, 
and presented (including for reporting purposes) in ac-
cordance with the 1997 Office of Management and Budget 
Standards for Maintaining, Collecting, and Presenting 
Federal Data on Race and Ethnicity (at a minimum). 
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‘‘(e) LANGUAGE
COLLECTION
STANDARDS.—Not 
later than 1 year after the date of enactment of this title, 
the Deputy Assistant Secretary for Minority Health Dis-
parity Elimination, in consultation with the Office for Civil 
Rights of the Department of Health and Human Services, 
shall develop and disseminate Standards for the Classifica-
tion of Federal Data on Preferred Written and Spoken 
Language. 
‘‘(f) TECHNICAL ASSISTANCE FOR THE COLLECTION 
AND REPORTING OF DATA.— 
‘‘(1) IN GENERAL.—The Secretary may, either 
directly or through grant or contract, provide tech-
nical assistance to enable a healthcare program or 
an entity operating under such program to comply 
with the requirements of this section. 
‘‘(2) TYPES OF ASSISTANCE.—Assistance pro-
vided under this subsection may include assistance 
to— 
‘‘(A) enhance or upgrade computer tech-
nology that will facilitate racial, ethnic, and pri-
mary language data collection and analysis; 
‘‘(B) improve methods for health data col-
lection and analysis including additional popu-
lation groups beyond the Office of Management 
and Budget categories if such groups can be 
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aggregated into the minimum race and ethnicity 
categories; 
‘‘(C) develop mechanisms for submitting 
collected data subject to existing privacy and 
confidentiality regulations; and 
‘‘(D) develop educational programs to in-
form health insurance issuers, health plans, 
health providers, health-related agencies, and 
the general public that data collection and re-
porting by race, ethnicity, and preferred lan-
guage are legal and essential for eliminating 
health and healthcare disparities. 
‘‘(g) ANALYSIS OF RACIAL AND ETHNIC DATA.—The 
Secretary, acting through the Director of the Agency for 
Healthcare Research and Quality and in coordination with 
the Administrator of the Centers for Medicare and Med-
icaid Services, shall provide technical assistance to agen-
cies of the Department of Health and Human Services in 
meeting Federal standards for race, ethnicity, and pri-
mary language data collection and analysis of racial and 
ethnic disparities in health and healthcare in public pro-
grams by— 
‘‘(1) identifying appropriate quality assurance 
mechanisms to monitor for health disparities; 
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‘‘(2) specifying the clinical, diagnostic, or thera-
peutic measures which should be monitored; 
‘‘(3) developing new quality measures relating 
to racial and ethnic disparities in health and 
healthcare; 
‘‘(4) identifying the level at which data analysis 
should be conducted; and 
‘‘(5) sharing data with external organizations 
for research and quality improvement purposes. 
‘‘(h) NATIONAL CONFERENCE.— 
‘‘(1) IN GENERAL.—The Secretary shall spon-
sor a biennial national conference on racial, ethnic, 
and primary language data collection to enhance co-
ordination, build partnerships, and share best prac-
tices in racial, ethnic, and primary language data 
collection, analysis, and reporting. 
‘‘(2) REPORTS.—Not later than 6 months after 
the date on which a national conference has con-
vened under paragraph (1), the Secretary shall pub-
lish in the Federal Register and submit to the Com-
mittee on Health, Education, Labor, and Pensions 
and the Committee on Finance of the Senate and 
the Committee on Energy and Commerce and the 
Committee on Ways and Means of the House of 
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Representatives a report concerning the proceedings 
and findings of the conference. 
‘‘(i) REPORT.—Not later than 2 years after the date 
of enactment of this title, and biennially thereafter, the 
Secretary shall submit to the appropriate committees of 
Congress a report on the effectiveness of data collection, 
analysis, and reporting on race, ethnicity, and primary 
language under the programs and activities of the Depart-
ment of Health and Human Services and under other Fed-
eral data collection systems with which the Department 
interacts to collect relevant data on race and ethnicity. 
The report shall evaluate the progress made in the De-
partment with respect to the national plan under sub-
section (c) or subsequent revisions thereto. 
‘‘(j) DEFINITION.—In this section, the term ‘health- 
related program’ mean a program— 
‘‘(1) under the Social Security Act (42 U.S.C. 
301 et seq.) that pay for healthcare and services; 
and 
‘‘(2) under this Act that provide Federal finan-
cial assistance for healthcare, biomedical research, 
health services research, and programs designed to 
improve the public’s health. 
‘‘(k) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section, 
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