Tribal Health Data Improvement Act of 2020
AN ACT
To amend the Public Health Service Act with respect to the collection and availability of health data with respect to Indian Tribes, and for other purposes.
Sec. 2 Collection and availability of health data with respect to Indian Tribes
“(F) the Indian Health Service, Indian Tribes, Tribal organizations, and epidemiology centers authorized under the Indian Health Care Improvement Act;”
“(3) Data sharing strategy—With respect to data access for Tribal epidemiology centers and Tribes, the Secretary shall create a data sharing strategy that takes into consideration recommendations by the Secretary’s Tribal Advisory Committee for—
“(A) ensuring that Tribal epidemiology centers and Indian Tribes have access to the data sources necessary to accomplish their public health responsibilities; and
“(B) protecting the privacy and security of such data.
“(4) Tribal public health authority
“(A) Availability—Beginning not later than 180 days after the date of the enactment of the Tribal Health Data Improvement Act of 2020, the Secretary shall make available to the entities listed in subparagraph (B) all data that is collected pursuant to this title with respect to health care and public health surveillance programs and activities, including such programs and activities that are federally supported or conducted, so long as—
“(i) such entities request the data pursuant to statute; and
“(ii) the data is requested for use—
“(I) consistent with Federal law and obligations; and
“(II) to satisfy a particular purpose or carry out a specific function consistent with the purpose for which the data was collected.
“(B) Entities—The entities listed in this subparagraph are—
“(i) the Indian Health Service;
“(ii) Indian Tribes and Tribal organizations; and
“(iii) epidemiology centers.”
“(g) Definitions—In this section:
“(1) The term epidemiology center means an epidemiology center established under section 214 of the Indian Health Care Improvement Act, including such Tribal epidemiology centers serving Indian Tribes regionally and any Tribal epidemiology center serving Urban Indian organizations nationally.
“(2) The term Indian Tribe has the meaning given to the term Indian tribe in section 4 of the Indian Self-Determination and Education Assistance Act.
“(3) The term Tribal organization has the meaning given to the term tribal organization in section 4 of the of the Indian Self-Determination and Education Assistance Act.
“(4) The term Urban Indian organization has the meaning given to that term in section 4 of the Indian Health Care Improvement Act.”
Sec. 3 Improving health statistics reporting with respect to Indian Tribes
“(B) In carrying out subparagraph (A), with respect to American Indians and Alaska Natives, the Secretary shall—
“(i) consult with Indian Tribes, Tribal organizations, the Tribal Technical Advisory Group of the Centers for Medicare & Medicaid Services maintained under section 5006(e) of the American Recovery and Reinvestment Act of 2009, and the Tribal Advisory Committee established by the Centers for Disease Control and Prevention, in coordination with epidemiology centers, to develop guidelines for State and local health agencies to improve the quality and accuracy of data with respect to the birth and death records of American Indians and Alaska Natives;
“(ii) confer with Urban Indian organizations to develop guidelines for State and local health agencies to improve the quality and accuracy of data with respect to the birth and death records of American Indians and Alaska Natives;
“(iii) enter into cooperative agreements with Indian Tribes, Tribal organizations, Urban Indian organizations, and epidemiology centers to address misclassification and undersampling of American Indians and Alaska Natives with respect to—
“(I) birth and death records; and
“(II) health care and public health surveillance systems, including, but not limited to, data with respect to chronic and infectious diseases, unintentional injuries, environmental health, child and adolescent health, maternal health and mortality, foodborne and waterborne illness, reproductive health, and any other notifiable disease or condition;
“(iv) encourage States to enter into data sharing agreements with Indian Tribes, Tribal organizations, and epidemiology centers to improve the quality and accuracy of public health data; and
“(v) not later than 180 days after the date of enactment of the Tribal Health Data Improvement Act of 2020, and biennially thereafter, issue a report on the following:
“(I) Which States have data sharing agreements with Indian Tribes, Tribal organizations, Urban Indian organizations, and Tribal epidemiology centers to improve the quality and accuracy of health data.
“(II) What the Centers for Disease Control and Prevention is doing to encourage States to enter into data sharing agreements with Indian Tribes, Tribal organizations, Urban Indian organizations, and Tribal epidemiology centers to improve the quality and accuracy of health data.
“(III) Best practices and guidance for States, Indian Tribes, Tribal organizations, Urban Indian organizations, and Tribal epidemiology centers that wish to enter into data sharing agreements.
“(IV) Best practices and guidance for local, State, Tribal, and Federal uniform standards for the collection of data on race and ethnicity.”
“(n) In this section:
“(1) The term epidemiology center means an epidemiology center established under section 214 of the Indian Health Care Improvement Act, including such Tribal epidemiology centers serving Indian Tribes regionally and any Tribal epidemiology center serving Urban Indian organizations nationally.
“(2) The term Indian Tribe has the meaning given to the term Indian tribe in section 4 of the Indian Self-Determination and Education Assistance Act.
“(3) The term “Tribal organization” has the meaning given to the term “tribal organization” in section 4 of the Indian Self-Determination and Education Assistance Act.
“(4) The term Urban Indian organization has the meaning given to that term in section 4 of the Indian Health Care Improvement Act.”
“(o)
“(1) To carry out this section, there is authorized to be appropriated $185,000,000 for each of the fiscal years 2021 through 2025.
“(2) Of the amount authorized to be appropriated to carry out this section for a fiscal year, the Secretary shall not use more than 10 percent for the combined costs of—
“(A) administration of this section; and
“(B) carrying out subsection (m)(2).”