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

The UDHHS maintains numerous public health databases such as birth and death records, an immunization registry, child health registries, and a data warehouse that stores 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 UDHHS Master Person Index (DOHMPI) project uses a mix of 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 in UDHHS. The DOHMPI is designed to uniquely identify each individual in the state receiving healthcare or public health services to support healthcare and public health operations and research.

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 (legacy and current systems), DOPL - Professional Licensing, Utah Cancer Registry (UCR), 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 initiated the process of compiling medical and pharmacy claims data across health care 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, and special procedures, delivery of the baby and postpartum care of the mother. The Utah APCD represents a rich source of healthcare data.

Another major strength for the UDHHS data infrastructure is the on-line 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. IBIS-PH acts as the primary point of data access and houses numerous data sets all easily accessible for public use (http://ibis.health.utah.gov). The IBIS-PH system was developed to meet recognized public health assessment needs, including tabulation of vital statistics data, tracking of 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, BRFSS, PRAMS, YRBSS, hospital and emergency UDHHS data, population estimates, and the Cancer Registry. SSDI grant funds have been used to update IBIS with additional indicators corresponding to the MCH Minimum and Core data set indicators.

Capacity for MCH/CSHCN data collection and analysis is expanded through the DRP. The DRP provides analytic resources and statistical expertise to MCH and CSHCN Offices and Programs for assessing the health status of the MCH population, planning and evaluating services. The DRP is headed by the MCH Epidemiologist with two epidemiology staff and one programmer. The DRP assists staff with survey development, database development, data analysis, and report writing and receives data requests from the Offices of MCH and CSHCN, as well as from outside state agencies, local colleges, and universities.

DRP has assisted programs with survey programming in secure online platforms. For example, in the spring of 2022, DRP reprogrammed a REDCap database for the Maternal and Infant Health Program’s Study of the Associated Risks for Stillbirth (SOARS). This CDC sponsored study gathers essential data for monitoring stillbirth and related factors such as prenatal, obstetric, and postpartum health care after a pregnancy loss. This survey has been conducted since 2018 using a mail and telephone methodology among women who have experienced a stillbirth. The SOARS program needed to develop a data entry system for the survey data. Moving forward, should Utah choose to continue data collection for SOARS, DRP will make further changes to the REDCap database to enable a web-based response option for participants.

The DRP developed a RedCap reporting system for the Medications for Inmates pilot project. This system allowed participating facilities to report service data required under contracts. The information was easily compiled for reporting to the Department of Workforce Services, who provided funding for the pilot year.

The DRP also conducts surveys, including, but not limited to Oral Health Surveys, WIC Participant Satisfaction Surveys, Developmental Screening Surveys, and the Commodity Supplemental Food Programs Customer Satisfaction Survey. The DRP routinely links Vital Records Birth Certificate data and Medicaid Eligibility data for the annual Maternal and Child Health Block Grant. The DRP also links data sets to assist several programs, e.g. 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 Birth Defects Network data; and Vital Records Data with the WIC data.

The DRP is responsible for the coordination of Title V MCH Block Grant Application and Report each year. A web-based application titled Web Enabled Systematic Tracking Tool (WESTT) was developed 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 trainings and updates to the system. Some new areas of focus for WESTT in 2022 include: training contributors on applying an equity lens to FAD and program data, the development of logic models for work being done for NPMs, and training on using standardized Target Setting Methods (TSMs) for NPMs, SPMs, and ESMs.

In 2022, the DRP also worked with staff in MCH and CSHCN to create a new working group called the Data Integration Workgroup (DIW). The purpose of DIW is to provide analytic support to MCH and CHSCN 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. Presentations include overviews of programs and the populations they serve, practice runs for professional presentations, SAS/Stata/R coding shortcuts and tips, journal article discussions, and presentations around data security and policies. For example, during the May 2022 meeting the new DHHS Chief Data Privacy and Information Security Officer attended and answered questions about the merger regarding data security issues and protocols. DIW is also working on a Utah State legislative data brief that highlights the work being done by the Division for MCH and CSHCN populations, with the goal of having a report ready for the 2023 Legislative Session. As DIW grows, we anticipate many new opportunities for collaboration within the Family Health Division on data projects.

MCH/CSHCN Data Systems

The Child Health Advanced Records Management (CHARM) provides public health data through an integrated, secure electronic system to health care providers to coordinate care, and improve efficiencies and health outcomes of the children and families they serve. The CHARM program and system were established in 2000 as a coordinated, Department-wide effort within UDHHS to link identifiable child health data in real time among appropriate health care programs and state agencies. To date, CHARM has linked the databases from the Office of Vital Records (Birth and Death Certificates), the Utah Statewide Immunization Information System (USIIS), the Early Hearing Detection and Intervention (EHDI) Program, the Newborn Bloodspot (Heel-stick) Screening Program, the Baby Watch/Early Intervention Program, and the Office of Recovery Services. CHARM is also a conduit for the Office of CSHCN to connect to the Utah-wide clinical Health Information Exchange (cHIE) system. The CHARM system also provides a web interface/portal for providers and programs which enables authorized users to obtain newborn screening results (hearing, heel-stick, heart) and immunization histories for children to facilitate more complete and timely health care services. Lastly, it has been selected to be the State system to collect ASQ screening data. CHARM creates a consolidated electronic health record for children in Utah. This health record can be printed and given to parents/guardians to assist MCH/CSHCN populations (infants, children, teens, mothers, families) and programs with continuity of care and follow-up.

Utah Birth Defect Network (UBDN), is a statewide population-based active surveillance system administered by UDHHS 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, thus making birth defects common, costly, and critical. UBDN data provides a unique opportunity to respond to emerging threats to mothers and babies.

The Pregnancy Risk Assessment Monitoring System (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 many measures. PRAMS data is the source for several Title V National Outcome Measures.

The Study of the Associated Risks of Stillbirth (SOARS) is also 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 help health officials 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 will also help us learn what support women and families need after such a loss.

The Perinatal Mortality Review (PMR) Program reviews maternal deaths and infant deaths related to perinatal conditions. Information on deaths is collected from various sources. The 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. The Utah 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. This past year, American Rescue Plan Act (ARPA) funding has been provided to the State to improve data systems, data systems modernization, and data infrastructure. Discussions are taking place to determine what, how, and which systems to update.