Data capacity in the Utah Department of Health and Human Services (DHHS) is strong and is focused around the Division of Data, Systems and Evaluation (DSE), which serves as the central point for state health data from many sources. DSE includes the Offices of Informatics and Data Systems, Information Privacy and Security, Research and Evaluation, and Vital Records and Statistics. The division oversees the legislatively mandated Health Data Committee and provides access to datasets for analysis by DHHS staff and assisting programs in data analysis as needed.

DHHS maintains numerous public health databases such as birth and death records, an immunization registry, child health registries, and a data warehouse that stores the Medicaid Management Information System (MMIS) and other health-related operational data. Each of these databases contains person-specific, identifiable records that are used for management, operational, and public health purposes. Often it is necessary to link information between databases. For example, linking birth certificate data with Medicaid claims data allows for the examination of prenatal care delivery, as well as the assessment of maternal morbidities, and birth outcomes.

The DHHS Master Person Index (DOHMPI) uses probabilistic and deterministic record linking technologies to maintain an ongoing repository of high quality linked identity information that facilitates operational and analytic data needs analysis across multiple diverse public health databases. Currently, the DOHMPI links information from ASQ Questionnaire Screening, Early Intervention Part C (Baby Watch), DWS - Child Care Subsidy, DOPL - Controlled Substance Database, Utah Death Registry, Newborn Hearing Screening, Medicaid, Office of Home Visiting, DOPL - Professional Licensing, Utah Cancer Registry, Utah Birth Registry, Utah Immunization Registry, Women Infant and Children (WIC), Head Start - Centro de la Familia, and Healthcare Facilities Database. Other source systems being added to the DOHMPI include the All Payer Claims Data (APCD) (non-Medicaid), Head Start - DDI Vantage, and Traumatic Brain Injury Registry.

The Health Care Information & Analysis Programs manage and enhance the APCD. In addition to collecting inpatient hospital discharge data, they have begun compiling medical and pharmacy claims data across health insurance providers (payers). Utah is one of the first states in the country to analyze episodes of care (EOC) derived from statewide health insurance claims. An EOC is defined as a complete course of care from the initial diagnosis through treatment and follow-up. For example, in the context of maternity, the EOC would begin with the first prenatal visit and include all other visits, pharmacy claims, lab tests, special procedures, delivery of the baby, and postpartum care of the mother. The APCD represents a rich source of healthcare data.

Another major strength for the DHHS data infrastructure is the online Indicator-Based Information System for Public Health (IBIS-PH). The IBIS-PH website serves as Utah’s online public health data and information reporting system, serving as the primary point of data access and houses numerous data sets for public use (http://ibis.health.utah.gov). IBIS-PH was developed to meet recognized public health assessment needs, including tabulation of vital statistics data, tracking progress on Healthy People goals, and the displaying of data for local communities, down to small area analysis. The system provides access to more than 100 different indicators and data sets, such as birth and death files, Behavioral Risk Factor Surveillance System (BRFSS), Pregnancy Risk Assessment Monitoring System (PRAMS), Youth Risk Behavior Surveillance System (YRBSS), hospital and emergency DHHS data, population estimates, and the Cancer Registry. The State Systems Development Initiative grant (SSDI) Coordinator/Epidemiologist works with the Maternal and Infant Health Program (MIHP) to update IBIS indicators and develop new indicators to fill data gaps.

Capacity for MCH/CSHCN data collection and analysis is expanded through the Data Resources Program (DRP). DRP provides analytic resources and statistical expertise to division offices and programs for assessing the health status of the MCH population and planning and evaluating services. DRP is headed by a program manager experienced in epidemiology, who oversees three additional epidemiologists and one health informaticist/programmer. DRP assists staff with survey development, database development, data analysis, and report writing and receives data requests from the Division’s Offices (mostly within MCH and CSHCN), and outside state agencies, local colleges, and universities.

DRP also conducts surveys and data analysis including, but not limited to, Oral Health Surveys, WIC Participant Satisfaction Surveys, Developmental Screening Surveys, and the Commodity Supplemental Food Programs Customer Satisfaction Survey. DRP routinely links Vital Records Birth Certificate data and Medicaid Eligibility data for the annual Maternal and Child Health Block Grant. DRP also links datasets to assist several programs, such as Hospital Discharge data with Vital Records Birth Certificate data; Vital Records Birth data with Infant Death linkage and Death data; Hospital Discharge data with the Utah Birth Defect Network (UBDN) data; and Vital Records Data with the WIC data.

DRP is in the process of developing a Severe Maternal Morbidity (SMM) indicator in the IBIS-PH system. SMM is a topic of growing interest at the national and state levels. DHHS has provided periodic reports on SMM, but has not historically had a consistent surveillance system. Having this IBIS-PH indicator will help fill a data gap for future program planning and surveillance.

DRP is also working with the Office of Early Childhood in DFH to conduct an equity focused analysis of the DHHS developmental screening program using Ages and Stages Questionnaires (ASQ). This analysis will involve calculating the likelihood that children in rural and frontier communities, children in poverty, and children who are racial/ethnic minorities are receiving this important screening using 2010-2022 data. This analysis will be included in the Early Childhood Utah program’s strategic plan.

Annual coordination of the Title V MCH Block Grant Application and Report is the responsibility of DRP. A web-based application titled Web Enabled Systematic Tracking Tool (WESTT) was developed by DRP to capture and maintain block grant information from numerous sources in one single location, thus increasing efficiency and decreasing the number of person-hours devoted to this effort. WESTT has also increased efficiency and communication among contributors by allowing them to edit data and narratives and communicate with system administrators directly all in one secure place. Program staff members have welcomed the system and have reported satisfaction with utilizing the system which has reduced overall assignment completion time. Each year after the Title V Block Grant Application submission, DRP conducts a WESTT User Survey to gather feedback from Block Grant contributors and continuously seeks to improve WESTT through training and updates to the system. Some new areas of focus for WESTT in 2023 include mapping Evidence-based Strategy Measures (ESMs) to strategies for National Performance Measure (NPM) targets and uploading supporting documents to be included in the state action plan narrative for Title V Block Grant domains.

In 2022, DRP also worked with staff in MCH and CSHCN to create a new collaborative group called the Data Integration Workgroup (DIW). The purpose of DIW is to provide analytic support to Division staff and a forum for understanding the many data systems that MCH and CSHCN programs work with. Meetings are held every other month with presentations by members of DIW and others in the Agency. The merger of the Department of Health with the Department of Human Services resulted in two additional offices falling under the Division of Family Health: Office of Early Childhood (EC) and Office Coordinated Care and Regional Supports (CCRS). DIW now has members representing all Division Offices and is seeking ways to bridge data silos and work more closely together. Over the past year, several presentations have been given by DIW including topics such as: High Fidelity Wrap-Around (CCRS), EHDI Diversity and Inclusion Plan (EC), The Independent Assessment Program (CCRS), Data Quality Analysis of Birth Defect Surveillance data (UBDN), and a training from the Office of Vital Records and Statistics on the different forms and components that go into creating a birth record. As DIW grows, continued opportunities for collaboration are anticipated within the Family Health Division on data projects.

Data Systems

The Division of Family Health has several data systems used for surveillance and other projects. The Child Health Advanced Records Management (CHARM) system securely integrates public health data within DHHS, and external agencies to coordinate care, and improve efficiencies and health outcomes of children and families. The CHARM system creates a consolidated electronic health record for every child in Utah. This record increases the effectiveness of child health care services by providing a secure, confidential way for authorized health care programs, providers, and partners to share public health data and track the health status of children. The health record can be printed and given to parents/guardians to assist MCH/CSHCN populations and programs with continuity of care and follow-up.

Last year, the CHARM system was selected to be the state system to collect and share the Ages and Stages Questionnaire (ASQ-3) and ASQ Social and Emotional-2 (ASQ SE-2) developmental screening results. The CHARM Program is currently working to integrate the ASQ data through the CHARM system and make the results available to early care, development, health care, and education providers, as well as clinicians. This will ensure that more effective and consistent referrals, services, treatments, and interventions are provided to children with potential developmental delays. The CHARM system has shown that it improves services to children, reduces the number of children lost to follow-up, reduces duplicate services, promotes timely access to needed services, and improves patient care. It supports programs and medical home providers that serve MCH and CSHCN populations statewide.

Utah Birth Defect Network (UBDN) is a statewide population-based active surveillance system administered by DHHS that monitors all pregnancy outcomes (i.e. live births, stillbirths, pregnancy terminations, and miscarriages) for birth defects since 1994. UBDN also oversees the Critical Congenital Heart Disease Screening (CCHD) program for the state. Birth defects are the leading cause of death in the first year of life and account for millions of dollars spent each year on healthcare costs, making birth defects common, costly, and critical. UBDN data provides a unique opportunity to respond to emerging threats to mothers and babies. UBDN is collaborating with ISP to identify children who could benefit from transition to adult healthcare services. The two programs are establishing a data-sharing agreement to share data to work on outcomes related to NPM 12.

PRAMS is a surveillance project of the Centers for Disease Control and Prevention (CDC) and state health departments. PRAMS is an ongoing, state-specific, population-based survey designed to collect information on maternal experiences and behaviors prior to, during, and immediately following pregnancy among mothers who have recently given birth to a live infant. PRAMS data informs Title V programs by providing information on changes in maternal and child health indicators such as maternal mental health, unintended pregnancy, prenatal care, breastfeeding, insurance status, among many others. The PRAMS data also provides important context for these measures. PRAMS data is the source for several Title V National Outcome Measures.

SOARS is a joint surveillance project between the CDC and Utah. SOARS is an ongoing, state-specific, population-based survey designed to collect information on maternal experiences and behaviors prior to, during, and immediately following pregnancy among mothers who have recently experienced a stillbirth. Stillbirth is defined as the in-utero death of a baby at 20 weeks of pregnancy or later. SOARS was initiated to learn more about why stillbirths occur. Understanding the potential causes of stillbirth can lead to recommendations, policies, and services to help prevent them. SOARS data also helps us learn what support women and families need after such a loss. In 2022, DRP programmed a REDCap database for SOARS data entry.

The Perinatal Mortality Review (PMR) Program reviews maternal deaths and infant deaths related to perinatal conditions. Information on deaths is collected from various sources. A multidisciplinary PMR committee reviews these deaths to examine contributing factors and make recommendations for prevention. Data related to maternal deaths is collected via the Maternal Mortality Review Information Application (MMRIA), hosted by the CDC. Infant death information is entered into the National Fatality Review Case Reporting System (CFRP) housed at the Michigan Public Health Institute. Utah’s Child Fatality Review program also uses the CFRP system.

The mission of the Utah Early Childhood Integrated Data System (ECIDS) is to better coordinate policy, programming, and funding among all participating programs in Utah through data-driven decision making. To accomplish this aim, the Utah ECIDS works with early childhood programs across Utah to secure data use agreements and to align and strengthen data systems in order to integrate early childhood services data. The integrated data helps Title V programs by improving system-wide coordination and collaboration and works to improve the quality of early childhood programs. Additionally, it allows Title V programs to promote data-driven decision making.

The MotherToBaby Utah program provides information about medications and other exposures during pregnancy and breastfeeding. This database collects information on all inquiries made to the program through calls, emails, text messages, and web chats from the public and medical providers. The program also conducts customer satisfaction surveys.

Key challenges

To date, there has been limited funding for data and data infrastructure development beyond current funding with the Title V Block grant and SSDI. As a result, Utah had limited staffing capacity to expand beyond current efforts.