Public health emergency maternal health data collection and disclosure

(a) Availability of collected data The Secretary, acting through the Director of the Centers for Disease Control and Prevention and the Administrator of the Centers for Medicare & Medicaid Services, shall make publicly available on the website of the Centers for Disease Control and Prevention data described in subsection (b). (b) Data described The data described in this subsection are data collected through Federal surveillance systems under the Centers for Disease Control and Prevention with respect to public health emergencies and individuals who are pregnant or in a postpartum period. Such data shall include the following: (1) Diagnostic testing, confirmed cases, hospitalizations, deaths, and other health outcomes related to an infectious disease outbreak among pregnant and postpartum individuals. (2) Maternal and infant health outcomes among individuals who test positive for an infectious disease during or after pregnancy. (c) American Indian and Alaska Native Health outcomes In carrying out subsection (a), the Secretary shall consult with Indian Tribes and confer with Urban Indian organizations. (d) Disaggregated information In carrying out subsection (a), the Secretary shall disaggregate data by race, ethnicity, gender, primary language, geography, socioeconomic status, and other relevant factors. (e) Update During public health emergencies, the Secretary shall update the data made available under this section— (1) at least on a monthly basis; and (2) not less than one month after the end of such public health emergency. (f) Privacy In carrying out subsection (a), the Secretary shall— (1) take steps to protect the privacy of individuals pursuant to regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996 (42 U.S.C. 1320d–2 note); and (2) ensure that— (A) all data collected is deidentified; (B) at a minimum, there is no disclosure of any individually identifying or potentially identifying information regarding a patient or a patient’s health care provider; and (C) all data is collected in a manner that is consistent with applicable Federal and State privacy law. (g) Guidance (1) In general Not later than 30 days after the declaration of a public health emergency under section 319 of the Public Health Service Act (42 U.S.C. 247d), the Secretary shall issue guidance to States and local public health departments to ensure that— (A) laboratories that test specimens for an infectious disease receive all relevant demographic data on race, ethnicity, pregnancy status, and other demographic data as determined by the Secretary; and (B) data described in subsection (b) are disaggregated by race, ethnicity, gender, primary language, geography, socioeconomic status, and other relevant factors. (2) Consultation In carrying out paragraph (1), the Secretary shall consult with Indian Tribes— (A) to ensure that such guidance includes tribally developed best practices; and (B) to reduce misclassification of American Indians and Alaska Natives.