Leveraging Data Linkage to Address Adverse Childhood Experiences

April 26, 2023 | Shannon Vance

Roughly one in three children has experienced a traumatic event. These events are referred to as adverse childhood experiences (ACEs) and can include violence, abuse, and neglect. To protect the health and well-being of future generations, the prevention of ACEs is a core component of public health.

Timely and reliable data are necessary for not only program planning and implementation but also for “monitoring the extent of the problem, determining how best to utilize resources, and evaluating the impact of prevention efforts.” Surveillance data such as the Behavioral Risk Factor Surveillance System (BRFSS) or state-specific follow-up surveys to the Pregnancy Risk Assessment Monitoring System (PRAMS)—such as New Mexico’s Help Us Grow Strong (HUGS)—allow public health practitioners and researchers to track changes in the burden of ACEs by collecting data on previous exposure, health conditions that may impact or be impacted by exposure, and other related topics.

These surveillance systems can be made more robust by linking them to each other or other administrative data sources. By creating a linked dataset and conducting analyses across data sources, practitioners and researchers can more easily identify connections that would have been otherwise impossible to determine if the sources remained siloed.

Data Linkage in Action

In October 2021, ASTHO convened the Linking PRAMS and Clinical Outcomes Data Multi Jurisdiction Learning Community, a group focused on linking PRAMS data to another clinical or social outcome of interest. State health departments were interested in linking to a variety of data sources including Medicaid, vital records, and hospital discharge data. Among the 12 state teams, the Alaska Division of Public Health and the Montana Department of Public Health and Human Services both chose to link their PRAMS data to child health-focused datasets to learn more about early childhood adversity prevention opportunities in their states.

Alaska

The Alaska Division of Public Health’s (ADPH) learning community team, led by Jared Parrish, PhD, MS, decided to expand upon linkages they initially began in 2010 related to child welfare data. The Alaska Longitudinal Child Abuse and Neglect Linkage project (ALCANLink) linked PRAMS data with multiple sources of administrative data. ALCANLink was developed to provide an epidemiological foundation for approaching child maltreatment from a public health life-course perspective. Parrish indicated, “Linking to each of these administrative sources helps document and identify critical areas in need of prevention and intervention to optimize healthy development in a statewide birth population.”

Annually, PRAMS data is integrated into vital records, child death review, child welfare, education, Alaska Permanent fund, and the Childhood Understanding Behaviors Survey. Additional one-time linkage activities have been conducted linking PRAMS to the state birth defects registry, Anchorage Police Records, Child Advocacy Center Records, court system data, and Medicaid data. Using these linked data, Alaska has documented relationships between pre-birth and early childhood household challenges and child welfare involvement, early elevated ACEs scores, poor early school performance and readiness, and early injury-related healthcare utilization.

Building upon this work, the ADPH team focused on the relationship between household and community stressors that the pregnant person experienced and injury-related healthcare use of the child (i.e., injuries to the child before two years of age). The aim was to highlight the importance of supporting pregnant people and their families so that these stressors can either be avoided or mitigated before the child is born. Through this support, the child’s risk for things like injuries and ACEs is reduced. ALCANLink data have already been used to support the Alaska Division of Behavioral Health’s efforts to apply for and obtain a 1115 Medicaid waiver that in part enables clinical providers to bill for efforts addressing ACEs.

Montana

The Montana Department of Public Health and Human Services’ (MDPHHS) learning community team, led by Miriam Naiman-Sessions, PhD, MS, is linking PRAMS to several datasets for a cohort of children born between 2017–2021. The linked dataset will be used to calculate the percentage of young children who have ever been involved with child welfare services and explore the risk and protective factors for child maltreatment reports and removals. Doing so will allow the team to map what services children are being connected with and why, and then be able to intervene in any situations that may cause ACEs. The data sources involved in these linkage activities include vital records, child maltreatment reports, foster care participation, and many others.

Maren Weber, the MDPHHS PRAMS Data Manager, stated “Montana has one of the highest rates of maltreatment in the nation right now. If we could have the data available to paint both a large and detailed picture of the circumstances that lead to child welfare intervention and other ACEs, we could potentially have a meaningful impact on children and family before the events happen.” While programmatic or policy changes within the state have yet to be seen, the MDPHHS team is hopeful that this will be the beginning of more robust monitoring of ACEs in Montana.

Looking Forward

While the results of linkage activities will vary by state, a significant benefit of linking other data sources to PRAMS is that it can leverage reported pre-birth maternal and familial experiences and behaviors that act as risk or protective factors for their future children. “Given the gravity and lasting impacts of child maltreatment, this area of focus has and will continue to be a driving area of investigation to support public health prevention efforts,” said Parrish.