HR5469-119

2. Stillbirth research and data collection improvements Title III of the Public Health Service Act is amended by inserting after section 317L–1 of such Act (42 U.S.C. 247b–13a) the following: The Secretary may award grants to States for purposes of— conducting surveillance and collecting data, including from existing datasets like State or sub-State Fetal and Infant Mortality Review data, with respect to stillbirths for public health and research purposes; building State and local public health capacity to assess stillbirth data; and collecting and reporting data on stillbirth risk factors, including any quantifiable outcomes with respect to such risk factors. As a condition of receipt of funds under this section, all data collected shall be in a manner that ensures that such data is deidentified, and at a minimum, that there is no disclosure of any individually identifying information regarding a patient or a patient’s health care provider, and otherwise in a manner that is consistent with applicable Federal and State privacy law. To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2026 through 2030. The Secretary shall— issue guidelines to State departments of health and State and local vital statistics units on— collecting data on stillbirth from health care providers, and with the consent of the woman who experienced the stillbirth, including any such data with respect to the clinical history, postmortem examination, and placental pathology; and improving processes and training related to stillbirth data collection and reporting to ensure standardization and completeness of data; and develop, and make publicly available, educational awareness materials on stillbirths. In carrying out paragraph (1), the Secretary may consult with— national health care professional associations; national associations representing State and local public health officials; organizations that assist families with burial support and bereavement services; nurses and nurse practitioners; obstetricians and gynecologists; pediatricians; maternal-fetal medicine specialists; nurse midwives and midwives; mental health professionals; statisticians; individuals who have experienced a stillbirth; and advocacy organizations representing such individuals. To carry out this subsection, there is authorized to be appropriated $1,000,000 for each of fiscal years 2026 through 2030. In this section, the term vital statistics unit means the entity that is responsible for maintaining vital records for a State, or a political subdivision of such State, including official records of live births, deaths, fetal deaths, marriages, divorces, and annulments. 317L–2.Stillbirth research and data collection improvements (a)Stillbirth surveillance and risk factor studies (1)In generalThe Secretary may award grants to States for purposes of— (A)conducting surveillance and collecting data, including from existing datasets like State or sub-State Fetal and Infant Mortality Review data, with respect to stillbirths for public health and research purposes; (B)building State and local public health capacity to assess stillbirth data; and (C)collecting and reporting data on stillbirth risk factors, including any quantifiable outcomes with respect to such risk factors. (2)ConditionAs a condition of receipt of funds under this section, all data collected shall be in a manner that ensures that such data is deidentified, and at a minimum, that there is no disclosure of any individually identifying information regarding a patient or a patient’s health care provider, and otherwise in a manner that is consistent with applicable Federal and State privacy law. (3)Authorization of appropriationsTo carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2026 through 2030. (b)Guidelines and educational awareness materials (1)In generalThe Secretary shall— (A)issue guidelines to State departments of health and State and local vital statistics units on— (i)collecting data on stillbirth from health care providers, and with the consent of the woman who experienced the stillbirth, including any such data with respect to the clinical history, postmortem examination, and placental pathology; and (ii)improving processes and training related to stillbirth data collection and reporting to ensure standardization and completeness of data; and (B)develop, and make publicly available, educational awareness materials on stillbirths. (2)ConsultationIn carrying out paragraph (1), the Secretary may consult with— (A)national health care professional associations; (B)national associations representing State and local public health officials; (C)organizations that assist families with burial support and bereavement services; (D)nurses and nurse practitioners; (E)obstetricians and gynecologists; (F)pediatricians; (G)maternal-fetal medicine specialists; (H)nurse midwives and midwives; (I)mental health professionals; (J)statisticians; (K)individuals who have experienced a stillbirth; and (L)advocacy organizations representing such individuals. (3)Authorization of appropriationsTo carry out this subsection, there is authorized to be appropriated $1,000,000 for each of fiscal years 2026 through 2030. (c)Vital statistics unit definedIn this section, the term vital statistics unit means the entity that is responsible for maintaining vital records for a State, or a political subdivision of such State, including official records of live births, deaths, fetal deaths, marriages, divorces, and annulments..

317L–2. Stillbirth research and data collection improvements The Secretary may award grants to States for purposes of— conducting surveillance and collecting data, including from existing datasets like State or sub-State Fetal and Infant Mortality Review data, with respect to stillbirths for public health and research purposes; building State and local public health capacity to assess stillbirth data; and collecting and reporting data on stillbirth risk factors, including any quantifiable outcomes with respect to such risk factors. As a condition of receipt of funds under this section, all data collected shall be in a manner that ensures that such data is deidentified, and at a minimum, that there is no disclosure of any individually identifying information regarding a patient or a patient’s health care provider, and otherwise in a manner that is consistent with applicable Federal and State privacy law. To carry out this subsection, there is authorized to be appropriated $5,000,000 for each of fiscal years 2026 through 2030. The Secretary shall— issue guidelines to State departments of health and State and local vital statistics units on— collecting data on stillbirth from health care providers, and with the consent of the woman who experienced the stillbirth, including any such data with respect to the clinical history, postmortem examination, and placental pathology; and improving processes and training related to stillbirth data collection and reporting to ensure standardization and completeness of data; and develop, and make publicly available, educational awareness materials on stillbirths. In carrying out paragraph (1), the Secretary may consult with— national health care professional associations; national associations representing State and local public health officials; organizations that assist families with burial support and bereavement services; nurses and nurse practitioners; obstetricians and gynecologists; pediatricians; maternal-fetal medicine specialists; nurse midwives and midwives; mental health professionals; statisticians; individuals who have experienced a stillbirth; and advocacy organizations representing such individuals. To carry out this subsection, there is authorized to be appropriated $1,000,000 for each of fiscal years 2026 through 2030. In this section, the term vital statistics unit means the entity that is responsible for maintaining vital records for a State, or a political subdivision of such State, including official records of live births, deaths, fetal deaths, marriages, divorces, and annulments.

3. Educational guidelines report Not later than five years after the date of enactment of this Act, the Secretary of Health and Human Services shall publish on a public website of the Department of Health and Human Services a report with educational guidelines on stillbirth and stillbirth risk factors. Such report shall include, to the extent practicable and appropriate, the guidelines issued and educational awareness materials developed under section 317L–2 of the Public Health Service Act, as added by section 2 of this Act.