‘‘(i) using, at a minimum, the stand-
ards for data collection on race, ethnicity, 
sex, primary language, sexual orientation, 
disability status, gender identity, and so-
cioeconomic status developed under section 
3101; 
‘‘(ii) collecting data for additional 
population groups if such groups can be 
aggregated into the minimum race and 
ethnicity categories; 
‘‘(iii) additionally referring, where 
practicable, to the standards developed by 
the Institute of Medicine in ‘Race, Eth-
nicity, and Language Data: Standardiza-
tion for Health Care Quality Improve-
ment’; and 
‘‘(iv) where practicable, through self- 
reporting; 
‘‘(B) with respect to the collection of the 
data described in subparagraph (A), for appli-
cants and recipients who are minors, require 
communication assistance in speech or writing, 
and for applicants and recipients who are other-
wise legally incapacitated, require that— 
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‘‘(i) such data be collected from the 
parent or legal guardian of such an appli-
cant or recipient; and 
‘‘(ii) the primary language of the par-
ent or legal guardian of such an applicant 
or recipient be collected; 
‘‘(C) systematically analyze such data 
using the smallest appropriate units of analysis 
feasible to detect racial and ethnic disparities, 
as well as disparities along the lines of primary 
language, sex, disability status, sexual orienta-
tion, gender identity, and socioeconomic status 
in health and health care, and report the results 
of such analysis to the Secretary, the Director 
of the Office for Civil Rights, each agency listed 
in section 3101(c)(1), the Committee 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 Representatives; 
‘‘(D) provide such data to the Secretary on 
at least an annual basis; and 
‘‘(E) ensure that the provision of assist-
ance to an applicant or recipient of assistance 
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is not denied or otherwise adversely affected be-
cause of the failure of the applicant or recipient 
to provide race, ethnicity, primary language, 
sex, sexual orientation, disability status, gender 
identity, and socioeconomic status 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) diminish existing or future require-
ments on health care providers to collect 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) are 
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 
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‘‘(B) the policies and procedures for identi-
fying, assessing, and meeting the language 
needs and cultural competence needs of its lim-
ited-English-proficient beneficiaries served by 
federally conducted programs and activities; 
‘‘(C) the steps the agency will take for its 
federally conducted programs and activities to 
improve cultural competence to provide a range 
of language assistance options, notice to lim-
ited-English-proficient individuals of the right 
to competent language services, periodic train-
ing of staff, monitoring and quality assessment 
of the language services and, in appropriate cir-
cumstances, the translation of written mate-
rials; 
‘‘(D) the steps the agency will take to en-
sure that applications, forms, and other rel-
evant documents for its federally conducted pro-
grams and activities are competently translated 
into the primary language of a limited-English- 
proficient client where such materials are need-
ed to improve access to federally conducted and 
federally assisted programs and activities for 
such a limited-English-proficient individual; and 
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185 
(L) Educational and community-based 
health programs. 
(M) Environmental health. 
(N) Family planning. 
(O) Food safety. 
(P) Health communication. 
(Q) Health disease and stroke. 
(R) HIV/AIDS. 
(S) Immunization and infectious diseases. 
(T) Occupational safety and health. 
(U) Oral health. 
(V) Physical activity and fitness. 
(W) Public health infrastructure. 
(X) Respiratory diseases. 
(Y) Sexually transmitted diseases. 
(Z) Substance abuse. 
(AA) Tobacco use. 
(BB) Vision and hearing. 
(CC) The degree to which those who have 
disabilities have access to health services, in-
cluding physical activity and fitness, including 
the ability to physically access the locations 
where such services are provided. 
(c) PROCEDURE.— 
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417 
through the Director of the Centers for Disease 
Control and Prevention, and shall include at least 
one representative from each of the following: 
‘‘(A) A national patient advocacy organiza-
tion with experience advocating on behalf of pa-
tients suffering from acquired bone marrow 
failure diseases. 
‘‘(B) The National Institutes of Health, in-
cluding at least one representative from each 
of— 
‘‘(i) the National Cancer Institute; 
‘‘(ii) the National Heart, Lung, and 
Blood Institute; and 
‘‘(iii) the Office of Rare Diseases. 
‘‘(C) The Centers for Disease Control and 
Prevention. 
‘‘(D) Clinicians with experience in— 
‘‘(i) diagnosing or treating acquired 
bone marrow failure diseases; and 
‘‘(ii) medical data registries. 
‘‘(E) Epidemiologists who have experience 
with data registries. 
‘‘(F) Publicly or privately funded research-
ers who have experience researching acquired 
bone marrow failure diseases. 
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