Data to Save Moms Act

Subjects: Health


<html><body><pre>[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 1599 Introduced in Senate (IS)]

&lt;DOC&gt;






118th CONGRESS
  1st Session
                                S. 1599

To amend the Public Health Service Act to provide for grants to promote 
   representative community engagement in maternal mortality review 
                  committees, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              May 15, 2023

 Ms. Smith (for herself and Mr. Booker) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to provide for grants to promote 
   representative community engagement in maternal mortality review 
                  committees, and for other purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Data to Save Moms Act''.

SEC. 2. DEFINITIONS.

    In this Act:
            (1) Maternity care provider.--The term ``maternity care 
        provider'' means a health care provider who--
                    (A) is a physician, a physician assistant, a 
                midwife who meets, at a minimum, the international 
                definition of a midwife and global standards for 
                midwifery education as established by the International 
                Confederation of Midwives, an advanced practice 
                registered nurse, or a lactation consultant certified 
                by the International Board of Lactation Consultant 
                Examiners; and
                    (B) has a focus on maternal or perinatal health.
            (2) Maternal mortality.--The term ``maternal mortality'' 
        means a death occurring during or within a 1-year period after 
        pregnancy, caused by pregnancy-related or childbirth 
        complications, including a suicide, overdose, or other death 
        resulting from a mental health or substance use disorder 
        attributed to or aggravated by pregnancy-related or childbirth 
        complications.
            (3) Perinatal health worker.--The term ``perinatal health 
        worker'' means a nonclinical health worker focused on maternal 
        or perinatal health, such as a doula, community health worker, 
        peer supporter, lactation educator or counselor, nutritionist 
        or dietitian, childbirth educator, social worker, home visitor, 
        patient navigator or coordinator, or language interpreter.
            (4) Postpartum.--The term ``postpartum'' means the 1-year 
        period beginning on the last day of the pregnancy of an 
        individual.
            (5) Pregnancy-associated death.--The term ``pregnancy-
        associated death'' means a death of a pregnant or postpartum 
        individual, by any cause, that occurs during, or within 1 year 
        following, the individual's pregnancy, regardless of the 
        outcome, duration, or site of the pregnancy.
            (6) Pregnancy-related death.--The term ``pregnancy-related 
        death'' means a death of a pregnant or postpartum individual 
        that occurs during, or within 1 year following, the 
        individual's pregnancy, from a pregnancy complication, a chain 
        of events initiated by pregnancy, or the aggravation of an 
        unrelated condition by the physiologic effects of pregnancy.
            (7) Racial and ethnic minority group.--The term ``racial 
        and ethnic minority group'' has the meaning given such term in 
        section 1707(g)(1) of the Public Health Service Act (42 U.S.C. 
        300u-6(g)(1)).
            (8) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.
            (9) Severe maternal morbidity.--The term ``severe maternal 
        morbidity'' means a health condition, including mental health 
        conditions and substance use disorders, attributed to or 
        aggravated by pregnancy or childbirth that results in 
        significant short-term or long-term consequences to the health 
        of the individual who was pregnant.
            (10) Social determinants of maternal health.--The term 
        ``social determinants of maternal health'' means nonclinical 
        factors that impact maternal health outcomes.

SEC. 3. FUNDING FOR MATERNAL MORTALITY REVIEW COMMITTEES TO PROMOTE 
              REPRESENTATIVE COMMUNITY ENGAGEMENT.

    (a) In General.--Section 317K(d) of the Public Health Service Act 
(42 U.S.C. 247b-12(d)) is amended by adding at the end the following:
            ``(9) Grants to promote representative community engagement 
        in maternal mortality review committees.--
                    ``(A) In general.--The Secretary may, using funds 
                made available pursuant to subparagraph (C), provide 
                assistance to an applicable maternal mortality review 
                committee of a State, Indian tribe, tribal 
                organization, or Urban Indian organization (as such 
                term is defined in section 4 of the Indian Health Care 
                Improvement Act)--
                            ``(i) to select for inclusion in the 
                        membership of such a committee community 
                        members from the State, Indian tribe, tribal 
                        organization, or Urban Indian organization by--
                                    ``(I) prioritizing community 
                                members who can increase the diversity 
                                of the committee's membership with 
                                respect to race and ethnicity, 
                                location, personal or family 
                                experiences of maternal mortality or 
                                severe maternal morbidity, and 
                                professional background, including 
                                members with nonclinical experiences; 
                                and
                                    ``(II) to the extent applicable, 
                                using funds reserved under subsection 
                                (f), to address barriers to maternal 
                                mortality review committee 
                                participation for community members, 
                                including required training, 
                                transportation barriers, compensation, 
                                and other supports as may be necessary;
                            ``(ii) to establish initiatives to conduct 
                        outreach and community engagement efforts 
                        within communities throughout the State or 
                        Indian tribe to seek input from community 
                        members on the work of such maternal mortality 
                        review committee, with a particular focus on 
                        outreach to women from racial and ethnic 
                        minority groups (as such term is defined in 
                        section 1707(g)(1)); and
                            ``(iii) to release public reports 
                        assessing--
                                    ``(I) the pregnancy-related death 
                                and pregnancy-associated death review 
                                processes of the maternal mortality 
                                review committee, with a particular 
                                focus on the maternal mortality review 
                                committee's sensitivity to the unique 
                                circumstances of pregnant and 
                                postpartum individuals from racial and 
                                ethnic minority groups (as such term is 
                                defined in section 1707(g)(1)) who have 
                                suffered pregnancy-related deaths; and
                                    ``(II) the impact of the use of 
                                funds made available pursuant to 
                                subparagraph (C) on increasing the 
                                diversity of the maternal mortality 
                                review committee membership and 
                                promoting community engagement efforts 
                                throughout the State or Indian tribe.
                    ``(B) Technical assistance.--The Secretary shall 
                provide (either directly through the Department of 
                Health and Human Services or by contract) technical 
                assistance to any maternal mortality review committee 
                receiving a grant under this paragraph on best 
                practices for increasing the diversity of the maternal 
                mortality review committee's membership and for 
                conducting effective community engagement throughout 
                the State or Indian tribe.
                    ``(C) Authorization of appropriations.--In addition 
                to any funds made available under subsection (f), there 
                is authorized to be appropriated to carry out this 
                paragraph $10,000,000 for each of fiscal years 2024 
                through 2028.''.
    (b) Reservation of Funds.--Section 317K(f) of the Public Health 
Service Act (42 U.S.C. 247b-12(f)) is amended by adding at the end the 
following: ``Of the amount made available under the preceding sentence 
for a fiscal year, not less than $1,500,000 shall be reserved for 
grants to Indian tribes, tribal organizations, or Urban Indian 
organizations (as such term is defined in section 4 of the Indian 
Health Care Improvement Act)''.

SEC. 4. DATA COLLECTION AND REVIEW.

    Section 317K(d)(3)(A)(i) of the Public Health Service Act (42 
U.S.C. 247b-12(d)(3)(A)(i)) is amended--
            (1) by redesignating subclauses (II) and (III) as 
        subclauses (V) and (VI), respectively; and
            (2) by inserting after subclause (I) the following:
                                    ``(II) to the extent practicable, 
                                reviewing cases of severe maternal 
                                morbidity, according to the most up-to-
                                date indicators;
                                    ``(III) to the extent practicable, 
                                reviewing deaths during pregnancy or up 
                                to 1 year after the end of a pregnancy 
                                from suicide, overdose, or other death 
                                from a mental health condition or 
                                substance use disorder attributed to or 
                                aggravated by pregnancy or childbirth 
                                complications;
                                    ``(IV) to the extent practicable, 
                                consulting with local community-based 
                                organizations representing pregnant and 
                                postpartum individuals from demographic 
                                groups with elevated rates of maternal 
                                mortality, severe maternal morbidity, 
                                maternal health disparities, or other 
                                adverse perinatal or childbirth 
                                outcomes to ensure that, in addition to 
                                clinical factors, nonclinical factors 
                                that might have contributed to a 
                                pregnancy-related death are 
                                appropriately considered;''.

SEC. 5. REVIEW OF MATERNAL HEALTH DATA COLLECTION PROCESSES AND QUALITY 
              MEASURES.

    (a) In General.--The Secretary, acting through the Administrator of 
the Centers for Medicare & Medicaid Services and the Director of the 
Agency for Healthcare Research and Quality (referred to in this section 
as the ``Secretary''), shall consult with relevant stakeholders--
            (1) to review existing maternal health data collection 
        processes and quality measures; and
            (2) to make recommendations to improve such processes and 
        measures, including topics described under subsection (c).
    (b) Collaboration.--In carrying out this section, the Secretary 
shall consult with a diverse group of maternal health stakeholders, 
which may include--
            (1) pregnant and postpartum individuals and their family 
        members, and nonprofit organizations representing such 
        individuals, with a particular focus on patients from racial 
        and ethnic minority groups;
            (2) community-based organizations that provide support for 
        pregnant and postpartum individuals, with a particular focus on 
        patients from demographic groups with elevated rates of 
        maternal mortality, severe maternal morbidity, maternal health 
        disparities, or other adverse perinatal or childbirth outcomes;
            (3) membership organizations for maternity care providers;
            (4) organizations representing perinatal health workers;
            (5) organizations that focus on maternal mental or 
        behavioral health;
            (6) organizations that focus on intimate partner violence;
            (7) institutions of higher education, with a particular 
        focus on minority-serving institutions;
            (8) licensed and accredited hospitals, birth centers, 
        midwifery practices, or other facilities that provide maternal 
        health care services;
            (9) relevant State and local public agencies, including 
        State maternal mortality review committees; and
            (10) the National Quality Forum, or such other standard-
        setting organizations specified by the Secretary.
    (c) Topics.--The review of maternal health data collection 
processes and recommendations to improve such processes and measures 
required under subsection (a) shall assess all available relevant 
information, including information from State-level sources, and shall 
consider at least the following:
            (1) Current State and Tribal practices for maternal health, 
        maternal mortality, and severe maternal morbidity data 
        collection and dissemination, including consideration of--
                    (A) the timeliness of processes for amending a 
                death certificate when new information pertaining to 
                the death becomes available to reflect whether the 
                death was a pregnancy-related death;
                    (B) relevant data collected with electronic health 
                records, including data on race, ethnicity, primary 
                language, socioeconomic status, geography, insurance 
                type, and other relevant demographic information;
                    (C) maternal health data collected and publicly 
                reported by hospitals, health systems, midwifery 
                practices, and birth centers;
                    (D) the barriers preventing States from correlating 
                maternal outcome data with data on race, ethnicity, and 
                other demographic characteristics;
                    (E) processes for determining the cause of a 
                pregnancy-associated death in States that do not have a 
                maternal mortality review committee;
                    (F) whether maternal mortality review committees 
                include multidisciplinary and diverse membership (as 
                described in section 317K(d)(1)(A) of the Public Health 
                Service Act (42 U.S.C. 247b-12(d)(1)(A)));
                    (G) whether members of maternal mortality review 
                committees participate in trainings on bias, racism, or 
                discrimination, and the quality of such trainings;
                    (H) the extent to which States have implemented 
                systematic processes of listening to the stories of 
                pregnant and postpartum individuals and their family 
                members, with a particular focus on pregnant and 
                postpartum individuals from demographic groups with 
                elevated rates of maternal mortality, severe maternal 
                morbidity, maternal health disparities, or other 
                adverse perinatal or childbirth outcomes, and their 
                family members, to fully understand the causes of, and 
                inform potential solutions to, the maternal mortality 
                and severe maternal morbidity crisis within their 
                respective States;
                    (I) the extent to which maternal mortality review 
                committees are considering social determinants of 
                maternal health when examining the causes of pregnancy-
                associated and pregnancy-related deaths;
                    (J) the extent to which maternal mortality review 
                committees are making actionable recommendations based 
                on their reviews of adverse maternal health outcomes 
                and the extent to which such recommendations are being 
                implemented by appropriate stakeholders;
                    (K) the legal and administrative barriers 
                preventing the collection, collation, and dissemination 
                of State maternity care data;
                    (L) the effectiveness of data collection and 
                reporting processes in separating pregnancy-associated 
                deaths from pregnancy-related deaths; and
                    (M) the current Federal, State, local, and Tribal 
                funding support for the activities referred to in 
                subparagraphs (A) through (L).
            (2) Whether the funding support referred to in paragraph 
        (1)(M) is adequate for States to carry out optimal data 
        collection and dissemination processes with respect to maternal 
        health, maternal mortality, and severe maternal morbidity.
            (3) Current quality measures for maternity care, including 
        prenatal measures, labor and delivery measures, and postpartum 
        measures, including topics such as--
                    (A) effective quality measures for maternity care 
                used by hospitals, health systems, midwifery practices, 
                birth centers, health plans, and other relevant 
                entities;
                    (B) the sufficiency of current outcome measures 
                used to evaluate maternity care for driving improved 
                care, experiences, and outcomes in maternity care 
                payment and delivery system models;
                    (C) maternal health quality measures that other 
                countries effectively use;
                    (D) validated measures that have been used for 
                research purposes that could be tested, refined, and 
                submitted for national endorsement;
                    (E) barriers preventing maternity care providers 
                and insurers from implementing quality measures that 
                are aligned with best practices;
                    (F) the frequency with which maternity care quality 
                measures are reviewed and revised;
                    (G) the strengths and weaknesses of the Prenatal 
                and Postpartum Care measures of the Health Plan 
                Employer Data and Information Set measures established 
                by the National Committee for Quality Assurance;
                    (H) the strengths and weaknesses of maternity care 
                quality measures under the Medicaid program under title 
                XIX of the Social Security Act (42 U.S.C. 1396 et seq.) 
                and the Children's Health Insurance Program under title 
                XXI of such Act (42 U.S.C. 1397 et seq.), including the 
                extent to which States voluntarily report relevant 
                measures;
                    (I) the extent to which maternity care quality 
                measures are informed by patient experiences that 
                include measures of patient-reported experience of 
                care;
                    (J) the current processes for collecting and making 
                publicly available, to the extent practicable, 
                stratified data on race, ethnicity, and other 
                demographic characteristics of pregnant and postpartum 
                individuals in hospitals, health systems, midwifery 
                practices, and birth centers, and for incorporating 
                such demographically stratified data in maternity care 
                quality measures;
                    (K) the extent to which maternity care quality 
                measures account for the unique experiences of pregnant 
                and postpartum individuals from racial and ethnic 
                minority groups; and
                    (L) the extent to which hospitals, health systems, 
                midwifery practices, and birth centers are implementing 
                existing maternity care quality measures.
            (4) Recommendations on authorizing additional funds and 
        providing additional technical assistance to improve maternal 
        mortality review committees and State and Tribal maternal 
        health data collection and reporting processes.
            (5) Recommendations for new authorities that may be granted 
        to maternal mortality review committees to be able to--
                    (A) access records from other Federal and State 
                agencies and departments that may be necessary to 
                identify causes of pregnancy-associated and pregnancy-
                related deaths that are unique to pregnant and 
                postpartum individuals from specific populations, such 
                as veterans and individuals who are incarcerated; and
                    (B) work with relevant experts who are not members 
                of the maternal mortality review committee to assist in 
                the review of pregnancy-associated deaths of pregnant 
                and postpartum individuals from specific populations, 
                such as veterans and individuals who are incarcerated.
            (6) Recommendations to improve and standardize current 
        quality measures for maternity care, with a particular focus on 
        maternal health disparities.
            (7) Recommendations to improve the coordination by the 
        Department of Health and Human Services of the efforts 
        undertaken by the agencies and organizations within the 
        Department related to maternal health data and quality 
        measures.
    (d) Report.--Not later than 1 year after the date of enactment of 
this Act, the Secretary shall submit to the Congress and make publicly 
available a report on the results of the review of maternal health data 
collection processes and quality measures and recommendations to 
improve such processes and measures required under subsection (a).
    (e) Definition.--In this section, the term ``maternal mortality 
review committee'' means a maternal mortality review committee duly 
authorized by a State and receiving funding under section 317K(a)(2)(D) 
of the Public Health Service Act (42 U.S.C. 247b-12(a)(2)(D)).
    (f) Authorization of Appropriations.--There are authorized to be 
appropriated such sums as may be necessary to carry out this section 
for fiscal years 2024 through 2027.

SEC. 6. STUDY ON MATERNAL HEALTH AMONG AMERICAN INDIAN AND ALASKA 
              NATIVE INDIVIDUALS.

    (a) In General.--The Secretary shall, in coordination with entities 
described in subsection (b)--
            (1) not later than 90 days after the date of enactment of 
        this Act, enter into a contract with an independent research 
        organization or Tribal Epidemiology Center to conduct a 
        comprehensive study on maternal mortality, severe maternal 
        morbidity, and other adverse perinatal or childbirth outcomes 
        in the populations of American Indian and Alaska Native 
        individuals; and
            (2) not later than 3 years after the date of enactment of 
        this Act, submit to Congress a report on such study that 
        contains recommendations for policies and practices that can be 
        adopted to improve maternal health outcomes for American Indian 
        and Alaska Native individuals.
    (b) Participating Entities.--The entities described in this 
subsection shall consist of 12 members, selected by the Secretary from 
among individuals nominated by Indian Tribes and Tribal organizations 
(as such terms are defined in section 4 of the Indian Self-
Determination and Education Assistance Act (25 U.S.C. 5304)), and Urban 
Indian organizations (as such term is defined in section 4 of the 
Indian Health Care Improvement Act (25 U.S.C. 1603)). In selecting such 
members, the Secretary shall ensure that each of the 12 service areas 
of the Indian Health Service is represented.
    (c) Contents of Study.--The study conducted pursuant to subsection 
(a) shall--
            (1) examine the causes of maternal mortality and severe 
        maternal morbidity that are unique to American Indian and 
        Alaska Native individuals;
            (2) include a systematic process of listening to the 
        stories of American Indian and Alaska Native individuals to 
        fully understand the causes of, and inform potential solutions 
        to, the maternal health crisis within their respective 
        communities;
            (3) distinguish between the causes of, landscape of 
        maternity care at, and recommendations to improve maternal 
        health outcomes within, the different settings in which 
        American Indian and Alaska Native individuals receive maternity 
        care, such as--
                    (A) facilities operated by the Indian Health 
                Service;
                    (B) an Indian health program operated by an Indian 
                Tribe or Tribal organization pursuant to a contract, 
                grant, cooperative agreement, or compact with the 
                Indian Health Service pursuant to the Indian Self-
                Determination Act;
                    (C) an urban Indian health program operated by an 
                Urban Indian organization pursuant to a grant or 
                contract with the Indian Health Service pursuant to 
                title V of the Indian Health Care Improvement Act; and
                    (D) facilities outside of the Indian Health Service 
                in which American Indian and Alaska Native individuals 
                receive maternity care services;
            (4) review processes for coordinating programs of the 
        Indian Health Service with social services provided through 
        other programs administered by the Secretary (other than the 
        Medicare Program under title XVIII of the Social Security Act 
        (42 U.S.C. 1395 et seq.), the Medicaid Program under title XIX 
        of such Act (42 U.S.C. 1396 et seq.), and the Children's Health 
        Insurance Program under title XXI of such Act (42 U.S.C. 1397 
        et seq.);
            (5) review current data collection and quality measurement 
        processes and practices;
            (6) assess causes and frequency of maternal mental health 
        conditions and substance use disorders;
            (7) consider social determinants of health, including 
        poverty, lack of health insurance, unemployment, sexual and 
        domestic violence, and environmental conditions in Tribal 
        areas;
            (8) consider the role that historical mistreatment of 
        American Indian and Alaska Native women has played in causing 
        currently elevated rates of maternal mortality, severe maternal 
        morbidity, and other adverse perinatal or childbirth outcomes;
            (9) consider how current funding of the Indian Health 
        Service affects the ability of the Service to deliver quality 
        maternity care;
            (10) consider the extent to which the delivery of maternity 
        care services is culturally appropriate for American Indian and 
        Alaska Native individuals;
            (11) make recommendations to reduce misclassification of 
        American Indian and Alaska Native individuals, including 
        consideration of best practices in training for maternal 
        mortality review committee members to be able to correctly 
        classify American Indian and Alaska Native individuals; and
            (12) make recommendations informed by the stories shared by 
        American Indian and Alaska Native individuals referred to in 
        paragraph (2) to improve maternal health outcomes for such 
        individuals.
    (d) Report.--The agreement entered into under subsection (a) with 
an independent research organization or Tribal Epidemiology Center 
shall require that the organization or Center transmit to Congress a 
report on the results of the study conducted pursuant to that agreement 
not later than 36 months after the date of enactment of this Act.
    (e) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $2,000,000 for each of fiscal 
years 2024 through 2026.

SEC. 7. GRANTS TO MINORITY-SERVING INSTITUTIONS TO STUDY MATERNAL 
              MORTALITY, SEVERE MATERNAL MORBIDITY, AND OTHER ADVERSE 
              MATERNAL HEALTH OUTCOMES.

    (a) In General.--The Secretary shall establish a program under 
which the Secretary shall award grants to research centers, health 
professions schools and programs, and other entities at minority-
serving institutions to study specific aspects of the maternal health 
crisis among pregnant and postpartum individuals from racial and ethnic 
minority groups. Such research may--
            (1) include the development and implementation of 
        systematic processes of listening to the stories of pregnant 
        and postpartum individuals from racial and ethnic minority 
        groups, and perinatal health workers supporting such 
        individuals, to fully understand the causes of, and inform 
        potential solutions to, the maternal mortality and severe 
        maternal morbidity crisis within their respective communities;
            (2) assess the potential causes of relatively low rates of 
        maternal mortality among Hispanic individuals, including 
        potential racial misclassification and other data collection 
        and reporting issues that might be misrepresenting maternal 
        mortality rates among Hispanic individuals in the United 
        States;
            (3) assess differences in rates of adverse maternal health 
        outcomes among subgroups identifying as Hispanic, including 
        disparities in access to early prenatal care; and
            (4) include lactation education to promote racial and 
        ethnic diversity within the workforce of health care 
        professionals with breastfeeding and lactation expertise.
    (b) Application.--To be eligible to receive a grant under 
subsection (a), an entity described in such subsection shall submit to 
the Secretary an application at such time, in such manner, and 
containing such information as the Secretary may require.
    (c) Technical Assistance.--The Secretary may use not more than 10 
percent of the funds made available under subsection (g)--
            (1) to conduct outreach to minority-serving institutions to 
        raise awareness of the availability of grants under subsection 
        (a);
            (2) to provide technical assistance in the application 
        process for such a grant; and
            (3) to promote capacity building as needed to enable 
        entities described in such subsection to submit such an 
        application.
    (d) Reporting Requirement.--Each entity awarded a grant under this 
section shall periodically submit to the Secretary a report on the 
status of activities conducted using the grant.
    (e) Evaluation.--Beginning 1 year after the date on which the first 
grant is awarded under this section, the Secretary shall submit to 
Congress an annual report summarizing the findings of research 
conducted using funds made available under this section.
    (f) Minority-Serving Institutions Defined.--In this section, the 
term ``minority-serving institution'' means an institution described in 
section 371(a) of the Higher Education Act of 1965 (20 U.S.C. 
1067q(a)).
    (g) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $10,000,000 for each of fiscal 
years 2024 through 2028.
                                 &lt;all&gt;
</pre></body></html>