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Strengthening Maternal and Infant Health Data in the U.S. Territories ASTHO, association of state and territorial health officials, maternal and infant health data, U.S. territories, public health, surveillance programs, pregnancy risk assessment monitoring system, improving the health, live births, health problems, reproductive health, federal government, toggle the centers for disease control and prevention cdc, risk assessment monitoring system, assessment monitoring system prams, pregnancy risk assessment monitoring, maternal and infant health, information collected, table of contents, population based, health status, supreme court, prams data, toggle the table, risk factors, prenatal care, collecting information Stephany Strahle The U.S. territories—Puerto Rico (PR), U.S. Virgin Islands (USVI), Guam, Commonwealth of the Northern Mariana Islands (CNMI), and American Samoa—are largely excluded from most statistical data systems in the United States. This gap leaves island health leaders, national partners, and federal agencies without the surveillance necessary to inform timely and robust public health programs and policies. This is also seen in critical maternal and child health surveillance programs like the Pregnancy Risk Assessment Monitoring System (PRAMS), Maternal Mortality Review Committees, and the Pregnancy Mortality Surveillance System, which either do not include or only recently included territories in their scope of coverage. This incomplete information creates challenges in identifying the aspects health systems need to address to reduce adverse maternal and infant health outcomes. Applying a life course perspective to maternal and infant health data reveals gaps in public health systems that impact outcomes before, during, and after birth. PRAMS provides vital insights into these lived experiences and pregnant people’s interactions with health care services. PRAMS data can also be linked to other administrative datasets, such as Medicaid, child welfare services, and Community Healthy Start programs, to provide a broader understanding of determinants of health across the life course for both the birthing parent and their child. With the breadth of contextual experiences that PRAMS captures in its data and the potential for data linkage projects to explore outcomes and their contributing factors, U.S. territories can leverage this wealth of information to assess the needs of their pregnant communities and their children. Despite its development in 1987, PRAMS has been implemented in only two territories, PR and CNMI, within the past decade. This brief highlights the work of these two islands and the potential to gain further insights into maternal and infant health outcomes using data linkage methods. Island Expansion of Maternal and Infant Health Surveillance Using PRAMS Since beginning PRAMS data collection in 2017, PR has made considerable strides in providing their communities with comprehensive reports on various topics. In 2021, one in eight live births was preterm in PR—the U.S. average is one in 10 live births. This outcome is one example of a potential research area in PR that could leverage PRAMS linkages to clinical administrative data sources to investigate contributing factors. In a special project conducted from 2016 to 2018, PRAMS served as an avenue for assessment of Zika awareness among pregnant people and their partners. Moreover, PRAMS informed numerous reports and educational materials on topics ranging from dental care to lactation and opioid use during pregnancy. Linking PRAMS to other administrative datasets could illuminate more information about health care utilization and access among pregnant people in PR. Although limited research exists on maternal and infant health outcomes in CNMI, available evidence reveals disparities in preterm birth among the territory’s indigenous Chamorro and Carolinian communities and Asian and Pacific Islander groups. Since CNMI started administering PRAMS in 2021, strong relationships with entities outside the territory (e.g., the Hawaii Department of Health) have facilitated PRAMS implementation by helping navigate Internal Review Board regulations and applications—both of which are necessary to conduct PRAMS collection and potential research using PRAMS data, like data linkage projects. Moreover, the CNMI PRAMS team’s deep familiarity with their communities could help identify local administrative data sources that, when linked to PRAMS, capture priority areas for improved health care and social service delivery. Considerations for Future Maternal and Infant Health Data Exploration With the existing gaps in surveillance data available for maternal and infant health, this recent implementation of PRAMS and the potential for data linkages to other data sources could provide enhanced insights for U.S. territories. The following considerations can inform best practices to optimize this data. Building Partnerships to Support a Linked Maternal and Infant Health Data Network To build capacity for further data exploration, building partnerships with other agencies and PRAMS jurisdictions can facilitate the information-sharing necessary to navigate data use agreements and other considerations before successfully linking data. Leveraging these connections can also supply more avenues to administer educational tools about PRAMS and perinatal services, linking their pregnant populations to the services they need. A robust web of partnerships can create a network of linked data capturing the life course perspective to inform high-quality programs for the ongoing care of pregnant people and their infants. Leveraging Community Input and Data on Social Determinants of Health Territories are uniquely positioned to leverage closer community ties to examine how data linkages can inform initiatives that improve experiences surrounding pregnancy and the life course after birth. As with PR, integrating the voices of pregnant people, their families, and the people providing their care into their advisory committees allows for better identification of what communities need. Active engagement ensures agencies can be efficient with their linkage efforts by tailoring their projects to high-priority maternal and infant health outcomes. Moreover, to foster community awareness about PRAMS and possible linked data sources, territories could create dashboards such as those created by Washington D.C.’s PRAMS program to provide a comprehensive and interactive view of the data. Data on social determinants of health collected through PRAMS—such as insurance coverage throughout pregnancy and postpartum as well as access to social support and a wide range of services—can also be leveraged for potential data linkage to identify inequities in health outcomes and the delivery of care. website yes

Linking Datasets to Address Racial Equity in Maternal and Child Health Outcomes astho, association of state and territorial health officials, data sources, people of color, centers for disease control, racial inequities, advance racial equity, maternal morbidity, maternal death, maternal health, child health, participate in prams, risk assessment monitoring system, disease control and prevention, maternal and child, morbidity and mortality, pregnancy risk assessment monitoring, pregnancy related death, racial justice, linked data, achieve health equity, advancing health equity, racial equity, maternal and child health, maternal mortality and morbidity, racial disparities, health equity, data linkages, vital records, pregnancy risk assessment monitoring system Stephany Strahle ASTHO | Strategies for promoting racial equity in maternal and infant health through data linkages. Racial disparities in maternal and child health outcomes impact populations across the United States. Having robust data to understand these disparities may inform more comprehensive initiatives and policies that address the impacts and root causes of inequities. Looking at administrative datasets, such as hospital discharges and vital records, allows health professionals to monitor inequities by racial and ethnic communities. Often not captured in these data, however, is the complex interaction of social determinants—such as access to social support, racial discrimination, insurance coverage throughout pregnancy and postpartum, and access to paid family and medical leave—and their impact on health outcomes. Public health surveillance systems monitor these outcomes and aim to answer questions on a broad range of contextual experiences. These systems can be combined with administrative data through data linkage, “a process that matches records representing the same person or entity derived from different data sources in order to generate new and more comprehensive datasets.” These linkages can help identify areas for patient-centered outcomes research and inform policy recommendation and programs that address maternal and child health disparities across racial and ethnic groups. State Approaches to Data Linkages Linking Vital Records with Income Data California In a recent working paper on maternal and infant health inequities in California, researchers linked administrative vital records with parental income data. This research found that “infant and maternal health in Black families at the top of the income distribution is markedly worse than that of White families at the bottom of the income distribution.” Linking vital records, a source that typically does not capture income information, with data sources that do, provided a novel and robust dataset illuminating the exacerbated disparities experienced by racial and ethnic minorities at all income levels. Using PRAMS to Monitor Health Outcomes The Pregnancy Risk Assessment Monitoring System (PRAMS) allows jurisdictions to monitor various maternal and infant health indicators before, during, and after pregnancy. As one of the few public health surveillance systems collecting data on race-related experiences and discrimination, it also provides a better understanding of disparities among racial and ethnic groups. As part of ASTHO’s Linking PRAMS and Clinical Outcomes Data Multi-Jurisdiction Learning Community, two state teams from Massachusetts and Georgia used data linkage of PRAMS to explore racial disparities in maternal and child health outcomes. Massachusetts The Division of Maternal and Child Health Research and Analysis at the Massachusetts Department of Public Health linked PRAMS data with the Pregnancy to Early Life Longitudinal Data System (PELL), a data system linking birth files to hospital discharge records that can be later used to link hospital-based service records, data on early intervention services, and other data documenting maternal and infant health experiences beyond birth. Previously, both PRAMS and PELL data informed Massachusetts’s 2022 report from the Special Commission on Racial Inequities in Maternal Health, which provided policy-related recommendations on doula workforce development and equitable implementation of paid family and medical leave within the state. Sarah Stone, PhD, MPH, the director of the Massachusetts Office of Data Translation, notes that linking PRAMS, which provides insights into the social determinants shaping people’s experiences during pregnancy, with the more administrative data included in PELL can further inform additional evidence-based initiatives to address inequities in maternal mortality and severe maternal morbidity. Georgia At the Maternal and Child Health Section of the Division of Epidemiology in the Georgia Department of Public Health, linkages between PRAMS and Georgia Vital Record data can provide insight into the observed differences in health outcomes among the state’s diverse population. Jenna Self, MPH, Georgia’s PRAMS project director and health surveys team lead, explains that “the linkages will help explore the association between maternal postpartum behaviors and negative infant health outcomes (e.g., mortality, hospitalization, emergency department visits) with the goal of understanding the health disparities” to inform future equity-focused initiatives. The development of a linked data environment will allow the Georgia Department of Public Health to ask and answer previously time and resource prohibitive questions. Recommendations Data linkage can be a powerful tool to create enhanced datasets that better inform state initiatives to improve racial equity in maternal and infant health outcomes. To use data linkages that identify areas needing equitable public health efforts, states should: Build and strengthen cross-collaborative relationships within and between various state agencies owning the datasets to facilitate data sharing. Consider the racial equity impacts of performing data linkages by exploring research questions that lead to more evidence-based decision-making. Understanding the linked data using a racial equity lens can better inform equitable policy recommendations and programmatic planning. Examine which data sources, when linked, could fill in gaps of understanding and provide a wealth of information to identify disparities and point to specific gaps in quality health care. Brief - Linking Datasets to Address Racial Equity in Maternal and Child Health Outcomes - Special Thanks website yes

What I Wish I Knew Before Linking Data ASTHO, Association of State and Territorial Health Officials, linking data, data linkage, family and child health, public health, data linkage research, public health agencies, north Carolina, children's data network, child welfare indicators, california health and human services, child welfare, child welfare policy, maternal and child health, alaska division of public health, analytics and epidemiology, data analysis, applied surveillance, data systems, child protection, birth data, vital records, medicaid data, record registries, child advocacy, data pieces, connecting records, data sources, medical histories 45:57 Data linkage experts share insights and recommendations for leveraging data linkage projects to explore and make an impact on public health issues. PH Conversations Series - What I Wish I Knew Before Linking Data This episode features a conversation between two data linkage experts—Jared Parrish, PhD, MS, and Emily Putnam-Hornstein, PhD—highlighting their lessons learned and sharing recommendations for those seeking to use data linkage projects to examine key public health issues, such as: The thought process behind choosing which datasets to link, which linkage tools and methods to use, and how to bring intentionality to these choices when considering a research question. The benefits of using data linkage to enhance datasets and build a comprehensive and robust collection of information for new insights. Lessons learned for navigating data linkages with important considerations for preparation, analysis, and the uses of data linkage. Show Notes Interviewer Stephany Strahle, MPH, Maternal and Child Health Contractor, ASTHO Guests Jared Parrish, PhD, Senior Epidemiologist, State of Alaska, DHSS, Division of Public Health Emily Putnam-Hornstein, PhD, Distinguished Professor for Children in Need, University of North Carolina at Chapel Hill <!-- Resources Braiding and Layering Funding to Address the Social Determinants of Health --> PHC Podcast Transcript - What I Wish I Knew Before Linking Data website yes

Multi-State Network of Linked PRAMS and Clinical Outcomes Data for Patient-Centered Outcomes Research Shannon Vance, Stephany Strahle, Shanna Cox, Sowmya Kuruganti, Lauren Kipling Multi-state network of linked Pregnancy Risk Assessment Monitoring System (PRAMS) and clinical outcomes data ASTHO, with support from the CDC’s Division of Reproductive Health and HHS’ Office of the Assistant Secretary for Planning and Evaluation, convened the Linking Pregnancy Risk Assessment Monitoring System (PRAMS) and Clinical Outcomes Data Multi-Jurisdiction Learning Community. Through this work, state health departments conducted data linkages between PRAMS and a variety of maternal and child health clinical outcomes and administrative datasets. This report highlights data linkage activities from each state, capacity building and TA offerings from the project, lessons learned, and future recommendations. Get the Report (PDF) website yes

A Framework for Linking PRAMS with Administrative Data ASTHO, Association of State and Territorial Health Officials, prams frameworks, prams data, PRAMS, administrative data, data linkages, pregnancy risk assessment monitoring system prams, pregnancy risk assessment monitoring system, data sources, prams jurisdictions, maternal and child health, health equity, health outcomes, maternal and child health issues, social determinants of health, data analysis, linkage preparation, data linkage readiness assessment, data linkage process map, data linkage process list, public health linkages, data preparation, data linkage, research dataset creation and analysis, public health challenges, documenting processes, secure storage, appropriate linkage methods, standardizing and aligning processes, public health data Jared Parrish, Stephany Strahle, Shannon Vance This five-phase framework for linking PRAMS data can help in the preparation, execution, and analysis of linked PRAMS data and the establishment of sustainable linkage. This report offers a framework for integrating the Pregnancy Risk Assessment Monitoring System (PRAMS) with administrative data sources. Comprised of in-depth tools and resources, it can help jurisdictions create a robust systematic approach to linkages, increasing understanding of maternal and child health outcomes. The framework is broken into five main phases: linkage preparation, data preparation, data linkage, research dataset creation and analysis, and sustainability. By following its guidance, public health agencies and researchers will be able to optimize integrated data to address pressing public health challenges effectively. Get the Report (PDF) website yes