1. Short title
This Act may be cited as the “Data to Save Moms Act of 2020”.
Data to Save Moms Act of 2020
A BILL
To amend the Public Health Service Act to improve data collection with respect to maternal mortality and severe maternal morbidity, and for other purposes.
2. Funding for maternal mortality review committees to promote representative community engagement
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 (25 U.S.C. 1603))—
“(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, and professional background, including members with non-clinical 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 Tribe to seek input from community members on the work of such maternal mortality review committee, with a particular focus on outreach to minority women; 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 minority women who have suffered pregnancy-related deaths; and
“(II) the impact of the use of funds made available pursuant to paragraph (C) on increasing the diversity of the maternal mortality review committee membership and promoting community engagement efforts throughout the State or 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 Tribe.
“(C) Authorization of appropriations—In addition to any funds made available under subsection (f), there are authorized to be appropriated to carry out this paragraph $10,000,000 for each of fiscal years 2021 through 2025.”
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 (25 U.S.C. 1603))”.
3. Data collection and review
In general— Section 317K(d)(3)(A)(i) of the Public Health Service Act (42 U.S.C. 247b–12(d)(3)(A)(i)) is amended—
by redesignating subclauses (II) and (III) as subclauses (V) and (VI), respectively; and
by inserting after subclause (I) the following:
“(II) to the extent practicable, reviewing cases of severe maternal morbidity in which the patient received a transfusion of four or more units of blood and was admitted to an intensive care unit;
“(III) to the extent practicable, consulting with local community-based organizations representing women from demographic groups disproportionately impacted by poor maternal health outcomes to ensure that, in addition to clinical factors, non-clinical factors that might have contributed to a pregnancy-related death are appropriately considered;”
Severe maternal morbidity defined— Section 317K(e) of the Public Health Service Act (42 U.S.C. 247b–12(e)) is amended—
in paragraph (2), by striking “and” at the end;
in paragraph (3), by striking the period at the end and inserting “; and”; and
by adding at the end the following:
“(4) the term “severe maternal morbidity” means one or more unexpected outcomes of labor and delivery that result in significant short-term or long-term consequences to a woman’s health.”
4. Task force on maternal health data and quality measures
Establishment— Not later than 180 days after the date of enactment of this Act, the Secretary of Health and Human Services shall establish a task force to be known as the “Task Force on Maternal Health Data and Quality Measures” (in this section referred to as the “Task Force”).
Duties of task force—
In general— The Task Force shall use all available relevant information, including information from State-level sources, to prepare and submit a report containing the following:
An evaluation of current State and Tribal practices for maternal health, maternal mortality, and severe maternal morbidity data collection and dissemination, including consideration of—
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;
maternal health data collected with electronic health records, including data on race and ethnicity;
the barriers preventing States from correlating maternal outcome data with race and ethnicity data;
processes for determining the cause of a pregnancy-associated death in States that do not have a maternal mortality review committee;
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));
whether members of maternal mortality review committees participate in trainings on bias, racism, or discrimination, and the quality of such trainings;
the extent to which States have implemented systematic processes of listening to the stories of pregnant and postpartum women and their family members, with a particular focus on minority women 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;
the consideration of social determinants of health by maternal mortality review committees when examining the causes of pregnancy-associated and pregnancy-related deaths;
the legal barriers preventing the collation of State maternity care data;
the effectiveness of data collection and reporting processes in separating pregnancy-associated deaths from pregnancy-related deaths; and
the current Federal, State, local, and Tribal funding support for the activities referred to in clauses (i) through (x).
An assessment of whether the funding referred to in subparagraph (A)(xi) is adequate for States to carry out optimal data collection and dissemination processes with respect to maternal health, maternal mortality, and severe maternal morbidity.
An evaluation of current quality measures for maternity care, including prenatal measures, labor and delivery measures, and postpartum measures up to one year postpartum. Such evaluation shall be conducted in consultation with the National Quality Forum and shall include consideration of—
effective quality measures for maternity care used by hospitals, health systems, birth centers, health plans, and other relevant entities;
the sufficiency of current outcome measures used to evaluate maternity care for testing and validating new maternal health care payment and service delivery models;
quality measures for the childbirth experiences of women that other countries effectively use;
current maternity care quality measures that may be eliminated because they are not achieving their intended effect;
barriers preventing maternity care providers from implementing quality measures that are aligned from best practices;
the frequency with which maternity care quality measures are reviewed and revised;
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;
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;
the extent to which maternity care quality measures are informed by patient experiences that include subjective measures of patient-reported experience of care;
the current processes for collecting stratified data on the race and ethnicity of pregnant and postpartum women in hospitals, health systems, and birth centers, and for incorporating such racially and ethnically stratified data in maternity care quality measures;
the extent to which maternity care quality measures account for the unique experiences of minority women and their families; and
the extent to which hospitals, health systems, and birth centers are implementing existing maternity care quality measures.
Recommendations on authorizing additional funds to improve maternal mortality review committees and relevant maternal health initiatives by the agencies and organizations within the Department of Health and Human Services.
Recommendations for new authorities that may be granted to maternal mortality review committees to be able to—
access records from other Federal and State agencies and departments that may be necessary to identify causes of pregnancy-associated deaths that are unique to women from specific populations, such as women veterans and women who are incarcerated; and
work with relevant experts who are not members of the maternal mortality review committee to assist in the review of pregnancy-associated deaths of women from specific populations, such as women veterans and women who are incarcerated.
Recommendations to improve current quality measures for maternity care, including recommendations on updating the Pregnancy & Delivery Care measures on the Hospital Compare website of the Centers for Medicare & Medicaid Services or any successor website, with a particular focus on racial and ethnic disparities in maternal health outcomes.
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.
Public comment— Not later than 60 days after the date on which a majority of the members of the Task Force have been appointed, the Task Force shall publish in the Federal Register a notice for public comment period of 90 days, beginning on the date of publication, on the duties and activities of the Task Force.
Membership—
In general— The Task Force shall be composed of 18 members appointed by the Secretary of Health and Human Services. The Secretary shall give special consideration to individuals who are representative of populations most affected by maternal mortality and severe maternal morbidity.
Member criteria— To be eligible to be appointed as a member of the Task Force, an individual shall be—
a woman who has experienced severe maternal morbidity;
a family member of a woman who had a pregnancy-related death;
an individual who provides non-clinical support to women from pregnancy through the postpartum period, such as a doula, community health worker, peer supporter, certified lactation consultant, nutritionist or dietitian, social worker, home visitor, or a patient navigator;
a leader of a community-based organization that addresses adverse maternal health outcomes with a specific focus on racial and ethnic disparities;
an academic researcher in a field or policy area related to the duties of the Task Force;
a maternal health care provider;
an elected or duly appointed leader from an Indian Tribe;
an expert in a field or policy area related to the duties of the Task Force; or
an individual who has experience with Federal or State government programs related to the duties of the Task Force.
Appointment timing— Appointments to the Task Force shall be made not later than 180 days after the date of enactment of this Act.
Duration— Each member shall be appointed for the life of the Task Force.
Co-chair selection— Not later than 30 days after the date on which a majority of the members of the Task Force have been appointed, the Secretary shall select 2 of the members of the Task Force to serve as co-chairs of the Task Force.
Vacancies—
In general— A vacancy in the Task Force—
shall not affect the powers of the Task Force; and
shall be filled in the same manner as the original appointment.
Co-chair vacancy— In the event of a vacancy of a co-chair of the Task Force, a replacement co-chair shall be selected in the same manner as the original selection.
Compensation— Except as provided in paragraph (8), members of the Task Force shall serve without pay.
Travel expenses— Members of the Task Force shall be allowed travel expenses, including per diem in lieu of subsistence, at rates authorized for employees of agencies under subchapter I of chapter 57 of title 5, United States Code, while away from their homes or regular places of business in the performance of service for the Task Force.
Meetings—
In general— The Task Force shall meet at the call of the co-chairs of the Task Force.
Quorum— A majority of the members of the Task Force shall constitute a quorum.
Initial meeting— The Task Force shall meet not later than 60 days after the date on which a majority of the members of the Task Force have been appointed.
Staff of task force—
Additional staff— The co-chairs of the Task Force may appoint and fix the pay of additional staff to the Task Force as the co-chairs consider appropriate.
Applicability of certain civil service laws— The staff of the Task Force may be appointed without regard to the provisions of title 5, United States Code, governing appointments in the competitive service, and may be paid without regard to the provisions of chapter 51 and subchapter III of chapter 53 of that title relating to classification and General Schedule pay rates.
Detailees— Any Federal Government employee may be detailed to the Task Force without reimbursement from the Task Force, and the detailee shall retain the rights, status, and privileges of his or her regular employment without interruption.
Powers of task force—
Testimony and evidence— The Task Force may take such testimony and receive such evidence as the Task Force considers advisable to carry out this section.
Obtaining official data— The Task Force may secure directly from any Federal department or agency information necessary to carry out its duties under this section. On request of the co-chairs of the Task Force, the head of that department or agency shall furnish such information to the Task Force.
Postal services— The Task Force may use the United States mails in the same manner and under the same conditions as other Federal departments and agencies.
Report— Not later than 2 years after the date on which the initial 18 members of the Task Force are appointed under subsection (c)(1), the Task Force shall submit to the Committee on Energy and Commerce, the Committee on Education and Labor, and the Committee on Ways and Means of the House of Representatives and the Committee on Finance and the Committee on Health, Education, Labor and Pensions of the Senate, and make publicly available, a report that—
contains the information, evaluations, and recommendations described in subsection (b); and
is signed by more than half of the members of the Task Force.
Termination— Section 14 of the Federal Advisory Committee Act (5 U.S.C. App.) shall not apply to the Task Force.
Definitions— In this section:
Maternal health care provider— The term “maternal health care provider” means an individual who is an obstetrician-gynecologist, family physician, midwife who meets at a minimum the international definition of the midwife and global standards for midwifery education as established by the International Confederation of Midwives, nurse practitioner, or clinical nurse specialist.
Maternal mortality— The term “maternal mortality” means deaths occurring during, or within 12 months after, pregnancy from complications of pregnancy or childbirth.
Maternal mortality review committee— 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)).
Pregnancy-associated death— The term “pregnancy-associated death” means a death of a woman, by any cause, that occurs during, or within 1 year following, her pregnancy, regardless of the outcome, duration, or site of the pregnancy.
Pregnancy-related death— The term “pregnancy-related death” means a death of a woman that occurs during, or within 1 year following, her pregnancy, regardless of the outcome, duration, or site of the pregnancy—
from any cause related to, or aggravated by, the pregnancy or its management; and
not from accidental or incidental causes.
Severe maternal morbidity— The term “severe maternal morbidity” means unexpected outcomes of labor and delivery resulting in significant short-term or long-term consequences to the health of a woman.
Authorization of appropriations— There are authorized to be appropriated such sums as may be necessary to carry out this section for fiscal years 2021 through 2024.
5. Indian Health Service study on maternal mortality
In general— The Director of the Indian Health Service (referred to in this section as the “Director”) shall, in coordination with entities described in subsection (b)—
not later than 90 days after the 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 and severe maternal morbidity in the populations of American Indian and Alaska Native women; and
not later than 3 years after the date of the 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 such women.
Participating entities— The entities described in this subsection shall consist of 12 members, selected by the Director 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 Director shall ensure that each of the 12 service areas of the Indian Health Service is represented.
Contents of study— The study conducted pursuant to subsection (a) shall—
examine the causes of maternal mortality and severe maternal morbidity that are unique to American Indian and Alaska Native women;
include a systematic process of listening to the stories of American Indian and Alaska Native women to fully understand the causes of, and inform potential solutions to, the maternal mortality and severe maternal morbidity crisis within their respective communities;
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 women receive maternity care, such as—
facilities operated by the Indian Health Service;
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; and
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;
review processes for coordinating programs of the Indian Health Service with social services provided through other programs administered by the Secretary of Health and Human Services (other than the Medicare program under title XVIII of the Social Security Act, the Medicaid program under title XIX of such Act, and the Children’s Health Insurance Program under title XXI of such Act), including coordination with the efforts of the Task Force established under section 3;
review current data collection and quality measurement processes and practices;
consider social determinants of health, including poverty, lack of health insurance, unemployment, sexual violence, and environmental conditions in Tribal areas;
consider the role that historical mistreatment of American Indian and Alaska Native women has played in causing currently high rates of maternal mortality and severe maternal morbidity;
consider how current funding of the Indian Health Service affects the ability of the Service to deliver quality maternity care;
consider the extent to which the delivery of maternity care services is culturally appropriate for American Indian and Alaska Native women;
make recommendations to reduce misclassification of American Indian and Alaska Native women, including consideration of best practices in training for maternal mortality review committee members to be able to correctly classify American Indian and Alaska Native women; and
make recommendations informed by the stories shared by American Indian and Alaska Native women in paragraph (2) to improve maternal health outcomes for such women.
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 the enactment of this Act.
Authorization of appropriations— There is authorized to be appropriated to carry out this section $2,000,000 for each of fiscal years 2021 through 2023.
6. Grants to minority-serving institutions to study maternal mortality, severe maternal morbidity, and other adverse maternal health outcomes
In general— The Secretary of Health and Human Services shall establish a program under which the Secretary shall award grants to research centers and other entities at minority-serving institutions to study specific aspects of the maternal health crisis among minority women. Such research may—
include the development and implementation of systematic processes of listening to the stories of minority women to fully understand the causes of, and inform potential solutions to, the maternal mortality and severe maternal morbidity crisis within their respective communities; and
assess the potential causes of low rates of maternal mortality among Hispanic women, including potential racial misclassification and other data collection and reporting issues that might be misrepresenting maternal mortality rates among Hispanic women in the United States.
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.
Technical assistance— The Secretary may use not more than 10 percent of the funds made available under subsection (f)—
to conduct outreach to Minority-Serving Institutions to raise awareness of the availability of grants under this subsection (a);
to provide technical assistance in the application process for such a grant; and
to promote capacity building as needed to enable entities described in such subsection to submit such an application.
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.
Evaluation— Beginning one 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.
Authorization of appropriations— There are authorized to be appropriated to carry out this section $10,000,000 for each of fiscal years 2021 through 2025.
Minority-Serving institutions defined— In this section, the term “minority-serving institution” has the meaning given the term in section 371(a) of the Higher Education Act of 1965 (20 U.S.C. 1067q(a)).