Developing Tools to Report Racism in Maternal Health for the CDC Maternal Mortality Review Information Application (MMRIA): Findings from the MMRIA Racism & Discrimination Working Group.

PURPOSE: The purpose of this report from the field is to describe the process by which an multidisciplinary workgroup, selected by the CDC Foundation in partnership with maternal health experts, developed a definition of racism that would be specifically appropriate for inclusion on the Maternal Mortality Review Information Application (MMRIA) form. DESCRIPTION: In the United States Black women are nearly 4 times more likely to experience a pregnancy-related death. Recent evidence points to racism as a fundamental cause of this inequity. Furthermore, the CDC reports that 3 of 5 pregnancy related deaths are preventable. With these startling facts in mind, the CDC created the Maternal Mortality Review Information Application (MMRIA) for use by Maternal Mortality Review Committees (MMRC) to support standardized data abstraction, case narrative development, documentation of committee decisions, and analysis on maternal mortality to inform practices and policies for preventing maternal mortality. ASSESSMENT: Charged with the task of defining racism and discrimination as contributors to pregnancy related mortality, the work group established four goals to define their efforts: (1) the desire to create a product that was inclusive of all forms of racism and discrimination experienced by birthing people; (2) an acknowledgement of the legacy of racism in the U.S. and the norms in health care delivery that perpetuate racist ideology; (3) an acknowledgement of the racist narratives surrounding the issue of maternal mortality and morbidity that often leads to victim blaming; and (4) that the product would be user friendly for MMRCs. CONCLUSION: The working group developed three definitions and a list of recommendations for action to help MMRC members provide suggested interventions to adopt when discrimination or racism were contributing factors to a maternal death. The specification of these definitions will allow the systematic tracking of the contribution of racism to maternal mortality through the MMRIA and allow a greater standardization of its identification across participating jurisdictions with MMRCs that use the form.

Phelan-McDermid syndrome data network: Integrating patient reported outcomes with clinical notes and curated genetic reports.

The heterogeneity of patient phenotype data are an impediment to the research into the origins and progression of neuropsychiatric disorders. This difficulty is compounded in the case of rare disorders such as Phelan-McDermid Syndrome (PMS) by the paucity of patient clinical data. PMS is a rare syndromic genetic cause of autism and intellectual deficiency. In this paper, we describe the Phelan-McDermid Syndrome Data Network (PMS_DN), a platform that facilitates research into phenotype-genotype correlation and progression of PMS by: a) integrating knowledge of patient phenotypes extracted from Patient Reported Outcomes (PRO) data and clinical notes-two heterogeneous, underutilized sources of knowledge about patient phenotypes-with curated genetic information from the same patient cohort and b) making this integrated knowledge, along with a suite of statistical tools, available free of charge to authorized investigators on a Web portal https://pmsdn.hms.harvard.edu. PMS_DN is a Patient Centric Outcomes Research Initiative (PCORI) where patients and their families are involved in all aspects of the management of patient data in driving research into PMS. To foster collaborative research, PMS_DN also makes patient aggregates from this knowledge available to authorized investigators using distributed research networks such as the PCORnet PopMedNet. PMS_DN is hosted on a scalable cloud based environment and complies with all patient data privacy regulations. As of October 31, 2016, PMS_DN integrates high-quality knowledge extracted from the clinical notes of 112 patients and curated genetic reports of 176 patients with preprocessed PRO data from 415 patients.

Creating New Strategies to Enhance Postpartum Health and Wellness.

Over the past 5 years there have been a number of new initiatives focused on improving birth outcomes and reducing infant mortality, including a renewed focus on the complex interactions between motherhood and infancy that influence lifelong health trajectories. Beginning in 2012, the Association of Maternal & Child Health Programs (AMCHP) facilitated a series of meetings to enhance coordination across initiatives. Emerging from these conversations was a shared desire across stakeholders to reimagine the postpartum visit and improve postpartum care and wellness. AMCHP convened a Postpartum Think-Tank Meeting in 2014 to map the system of postpartum care and identify levers for its transformation. The meeting findings are presented in an infographic which frames the challenges and proposed solutions from the woman's perspective. The infographic describes maternal issues and concerns along with a concise summary of the recommended solutions. Strategies include creating integrated services and seamless care transitions from preconception through postpartum and well-baby; business, community, and government support, including paid parental leave, health insurance and spaces for new parents to meet each other; and mother-centered care, including quality visits on her schedule with complete and culturally appropriate information. These solutions catalyze a postpartum system of care that supports women, children, and families by infusing new ideas and capitalizing on existing opportunities and resources.

From Theory to Measurement: Recommended State MCH Life Course Indicators.

PURPOSE: In May 2012, the Association of Maternal and Child Health (MCH) Programs initiated a project to develop indicators for use at a state or community level to assess, monitor, and evaluate the application of life course principles to public health. DESCRIPTION: Using a developmental framework established by a national expert panel, teams of program leaders, epidemiologists, and academicians from seven states proposed indicators for initial consideration. More than 400 indicators were initially proposed, 102 were selected for full assessment and review, and 59 were selected for final recommendation as Maternal and Child Health (MCH) life course indicators. ASSESSMENT: Each indicator was assessed on five core features of a life course approach: equity, resource realignment, impact, intergenerational wellness, and life course evidence. Indicators were also assessed on three data criteria: quality, availability, and simplicity. CONCLUSION: These indicators represent a major step toward the translation of the life course perspective from theory to application. MCH programs implementing program and policy changes guided by the life course framework can use these initial measures to assess and influence their approaches.

Building U.S. Capacity to Review and Prevent Maternal Deaths.

In the United States, the risk of death during and up to a year after pregnancy from pregnancy-related causes increased from ∼10 deaths per 100,000 live births in the early 1990s to 17 deaths per 100,000 live births in 2013. While vital statistics-based surveillance systems are useful for monitoring trends and disparities, state and local maternal mortality review committees (MMRCs) are best positioned to both comprehensively assess deaths to women during pregnancy and the year after the end of pregnancy, and identify opportunities for prevention. Although the number of committees that exist has increased over the last several years, both newly formed and long-established committees struggle to achieve and sustain progress toward reviewing and preventing deaths. We describe the key elements of a MMRC; review a logic model that represents the general inputs, activities, and outcomes of a fully functional MMRC; and describe Building U.S. Capacity to Review and Prevent Maternal Deaths, a recent multisector initiative working to remove barriers to fully functional MMRCs. Increased standardization of review committee processes allows for better data to understand the multiple factors that contribute to maternal deaths and facilitates the collaboration that is necessary to eliminate preventable maternal deaths in the United States.

Reduction of Peripartum Racial and Ethnic Disparities: A Conceptual Framework and Maternal Safety Consensus Bundle.

Racial and ethnic disparities exist in both perinatal outcomes and health care quality. For example, Black women are three to four times more likely to die from pregnancy-related causes and have more than a twofold greater risk of severe maternal morbidity than White women. In an effort to achieve health equity in maternal morbidity and mortality, a multidisciplinary workgroup of the National Partnership for Maternal Safety, within the Council on Patient Safety in Women's Health Care, developed a concept article for the bundle on reduction of peripartum disparities. We aimed to provide health care providers and health systems with insight into racial and ethnic disparities in maternal outcomes, the etiologies that are modifiable within a health care system, and resources that can be used to address these etiologies and achieve the desired end of safe and equitable health care for all childbearing women.

Reduction of Peripartum Racial and Ethnic Disparities: A Conceptual Framework and Maternal Safety Consensus Bundle.

Racial and ethnic disparities exist in both perinatal outcomes and health care quality. For example, black women are three to four times more likely to die from pregnancy-related causes and have more than a twofold greater risk of severe maternal morbidity than white women. In an effort to achieve health equity in maternal morbidity and mortality, a multidisciplinary workgroup of the National Partnership for Maternal Safety, within the Council on Patient Safety in Women's Health Care, developed a concept article for the bundle on reduction of peripartum disparities. We aimed to provide health care providers and health systems with insight into racial and ethnic disparities in maternal outcomes, the etiologies that are modifiable within a health care system, and resources that can be used to address these etiologies and achieve the desired end of safe and equitable health care for all childbearing women.

Reduction of Peripartum Racial and Ethnic Disparities: A Conceptual Framework and Maternal Safety Consensus Bundle.

Racial and ethnic disparities exist in both perinatal outcomes and health care quality. For example, black women are 3 to 4 times more likely to die from pregnancy-related causes and have more than a 2-fold greater risk of severe maternal morbidity than white women. In an effort to achieve health equity in maternal morbidity and mortality, a multidisciplinary workgroup of the National Partnership for Maternal Safety, within the Council on Patient Safety in Women's Health Care, developed a concept article for the bundle on reduction of peripartum disparities. We aimed to provide health care providers and health systems with insight into racial and ethnic disparities in maternal outcomes, the etiologies that are modifiable within a health care system, and resources that can be used to address these etiologies and achieve the desired end of safe and equitable health care for all childbearing women.

Expert Panel to Track Nurses' Effect on Maternal Morbidity and Mortality.

Rates of maternal morbidity and mortality in the United States have increased since 1990. Registered nurses are members of the health care work force who provide essential care to women during pregnancy, during birth, and after birth. Tools are needed to more effectively measure and track the effect of nursing care on maternal health outcomes. The Association of Women's Health, Obstetric and Neonatal Nurses and the Association of Maternal & Child Health Programs co-convened an expert panel to develop a set of tools for use by public health and clinical leaders to support this effort.