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Linking Datasets to Address Racial Equity in Maternal and Child Health Outcomes

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

ASTHO’s 2024 Legislative Session Update: Part One

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ASTHO’s 2024 Legislative Session Update: Part One legislative session, state policy, data collection, domestic violence, health information exchange, data privacy, substance misuse, overdose prevention, sexually transmitted infections, reproductive health, contraceptive care, climate change, public health, protect data, user data, personal data, centers for disease control, disease control and prevention, social media, data management, primary care, health organizations, higher risk, family planning, data sources, astho, association of state and territorial health officials Lillian Colasurdo, Maggie Davis, Lana McKinney, JoAnne McClure This past December, ASTHO announced the top 10 public health state policy issues to watch for during the 2024 state and territorial legislative sessions. With at least 30 states concluding their regularly scheduled 2024 sessions, here is a brief update on five of the topics to watch. Data Collection and Exchange As expected, there was an increase in proposed legislation that specifically advances electronic health data access, encourages interoperability, and safeguards identifiable patient health records; this was particularly true for vital records. Hundreds of bills have been introduced this session addressing state vital records systems. The state of Illinois alone has already passed several bills, including HB 2856, which requires veteran status to be designated on death certificates, and HB 2841, which prohibits the assessment of fees to victims of domestic violence who are seeking a certified vital record (birth or death certificate) from the state. Other states such as Arizona (SB 1252) considered legislation that would require the Department of Health to provide vital records information on deceased individuals to the qualifying health information exchange (HIE). Arizona is one of eight jurisdictions (AZ, FL, IA, IL, NH, NJ, OK, and WV) that have proposed legislation addressing HIEs this session. Most of these bills increase requirements to connect to HIEs, but New Hampshire HB 1663 and Oklahoma HB 3556 would allow patients and health care providers to opt out of HIEs. As many states look to address health data privacy concerns, New Hampshire recently passed a constitutional amendment granting the explicit right to privacy and has introduced HB 1663, which would update many of the state’s privacy laws regarding medical records to conform with the constitutional requirements. Just next door, Maine considered legislation (LD 1902) that would strengthen privacy requirements for reproductive and gender-affirming patient health information. Finally, the launch of the new federal Trusted Exchange Framework and Common Agreement (TEFCA) led to the Florida legislature proposing SB 668, which, had it passed, would have required hospitals to make patient records available through a nationally recognized trusted exchange framework. It would also have required the Agency for Health Care Administration to adopt relevant rules. Substance Misuse and Overdose Prevention Measures to prevent substance misuse and reduce overdoses, namely increasing access to opioid antagonists, such as naloxone and regulating substances with the potential for misuse, are priorities this legislative season. ASTHO anticipated that states would consider legislation to reduce fatal overdoses including decriminalizing drug checking equipment, expanding naloxone access and distribution, establishing overdose prevention centers, and establishing state regulatory frameworks for commercial substances with the potential for misuse, including kratom and Delta-8. Current legislative priorities to expand access to naloxone include public spaces, such as libraries, schools, workplaces. Island jurisdictions along with at least four states—Colorado (HB 24-1003), Tennessee (SB 2141), Virginia (HB 732), and Wisconsin (AB 223)—passed legislation to provide greater access to and/or proper storage of naloxone in school settings. Additionally, Virginia passed HB 342 that requires naloxone access in state agency buildings. These legislative actions, along with the approval last year by the FDA of two non-prescription naloxone spray products for over-the-counter use, are collectively powerful policy shifts to expand access to naloxone. In an attempt to regulate substances with the potential for abuse or misuse, specifically kratom, eight states have considered legislation that would restrict the sale to people under the age of 18. Similarly, twelve states have considered legislation that would restrict the sale of kratom to those under the age of 21. At least 22 states have considered legislation that would compel specific labeling requirements for kratom. Of those, California (AB 2365) and New Jersey (A 1188) would require kratom products to be registered with the state health department annually and require lab testing of the product to meet certain qualifications. Preventing Sexually Transmitted Infections ASTHO has spotlighted the growing concerns of rising rates of sexually transmitted infections and state actions reducing congenital syphilis rates and expanding access to HIV prophylaxis (PrEP) and post-exposure prophylaxis (PEP). Rates of both syphilis and congenital syphilis continue to rise at an alarming rate, with more than 10 times as many babies being born with syphilis in 2022 than in 2012. Routine screening and timely and adequate treatment of pregnant people for syphilis, ideally more than 30 days before delivery, can effectively prevent this condition in newborns. Due to increasing cases, the American College of Obstetricians and Gynecologists recently updated their guidance for obstetrician–gynecologists and other obstetric care professionals advising serological screening for all pregnant individuals at the first prenatal visit and universal screening at the third trimester and at birth. During the 2024 legislative session at least two states—Missouri (SB 1260) and Maryland (HB 119)—are considering legislation that would require testing during pregnancy care at the third trimester for syphilis. Maryland’s legislature passed HB 119, which would require screening at the third trimester and at birth, as well as requiring the hospital to determine the syphilis status of the birthing parent before discharging the newborn. In 2023, New York enacted legislation (A 3007) that requires syphilis screening in the third trimester, and in the current legislative session they are considering S 2472, which would allow the state health department to provide education about congenital syphilis and screenings. At least six states have considered and passed legislation during the 2024 legislative session regarding expanded access for HIV prophylaxis (PrEP) and post-exposure prophylaxis (PEP). Of those considered, Georgia enacted HB 1028 to allow PEP to be issued by a standing order; Florida’s legislature passed HB 159 that would allow pharmacists to screen for HIV exposure, order, and dispense prevention drugs PEP and PrEP and sent it to the governor. Similarly, in Delaware the Senate chamber passed SB 194 that would permit pharmacists to provide PrEP and PEP pursuant to an approved protocol. Family and Reproductive Health Policymakers across all levels of government continued taking steps to make it easier for people to access contraceptives. In 2023, at least 14 states enacted laws in 2023 to facilitate expanding access to contraceptive care by either expanding the ability for pharmacists to dispense birth control without an individualized prescription and/or allowing pharmacists to dispense up to 12 months of contraceptives at once. So far in 2024, at least 13 jurisdictions considered legislation allowing pharmacists to dispense contraceptives without a prescription and at least 18 states considered legislation supporting access to 12 month supply of contraceptives. Following FDA’s July 2023 approval of Opill—the first over-the-counter (OTC) birth control pill—the drug is currently available in stores with several major pharmacies and health plans announcing that they will provide the medication at zero cost for many health plan sponsors. To further support access to Opill, at least two states (New Mexico and Wisconsin) issued standing orders for Opill to facilitate Medicaid coverage of the medication. Additionally, Maryland’s legislature passed SB 527 in March 2024, which requires community colleges to develop and implement a plan to provide students access to OTC contraception. In February 2024, New York enacted S 8096 allowing the commissioner of health to issue a standing order allowing a pharmacist to dispense self-administered hormonal contraceptives, effective retroactively to January 1, 2024. Under the new law, New York’s Commissioner of Health issued a standing order to allow pharmacists to dispense up to 12 months of self-administered hormonal contraceptives like birth control pills, vaginal rings, and contraceptive patches. Optimal Health for All ASTHO anticipates policymakers will take steps to improve collection of health disparities data, address inequities rural communities face in accessing care, and to support climate change adaptation planning efforts. So far in the 2024 legislative session, several states are considering bills to improve health care access and outcomes in rural areas. California is considering legislation (SB 945) that would build an integrated data dashboard to provide the public with information on the health impacts caused by wildfires and the effectiveness of forest health and wildfire mitigation on health outcomes. Additionally, California (AB 2342) is looking to ensure critical access hospitals on remote islands receive adequate funding through a dedicated annual supplement. New York is considering at least two bills that would promote rural health care access. First, New York S 8582 would create a pilot program to identify rural health zones and convene a rural health zone board