Data capacity in the UDOH is strong and is focused around the Center for Health Data and Informatics (CHDI), which serves as the central point for state health data from many sources. The CHDI includes the Offices of Vital Records and Statistics, Public Health Assessment, Health Care Statistics, and Public Health Informatics. The CHDI oversees the legislatively mandated Health Data Committee which is responsible for oversight and publication of hospital performance data on various measures, such as Cesarean deliveries. The CHDI provides access to large data sets for analysis by UDOH staff and works with programs to assist in data analysis as needed.

The UDOH 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 Department of Health 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 UDOH. 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 birth certificates, death certificates, Medicaid eligibility records, and the All Payer Claims Database (APCD). Other source systems being added to the DOHMPI include Utah Statewide Immunization Information System (USIIS), Controlled Substance Database (CSD), Hospital Discharge (HD), and Emergency Medical Services (EMS).

The Office of Health Care Statistics (OHCS) is managing and enhancing 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 UDOH 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. This system was developed and is maintained by CHDI. 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 UDOH 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.

The Health Informatics program hosts the UDOH Informatics Network. The UDOH Informatics Network exists to promote collaboration, information sharing, and best practices among informatics professionals across all divisions at the Utah Department of Health. The group holds monthly meetings, has regular brown bag presentations, and promotes collaborative work projects. As an offshoot of the UDOH Informatics Network, the DRP and the Health Informatics Program are currently working together to facilitate the addition of maternal morbidity data to the Utah DOHMPI project.

The Maternal and Child Health (MCH) Bureau and the Bureau of Children with Special Health Care Needs (CSHCN) have strong working relationships with the four CHDI offices and many joint projects are conducted. Capacity for MCH/CSHCN data collection and analysis is expanded through the Data Resources Program (DRP). The DRP provides analytic resources and statistical expertise to MCH and CSHCN Bureau 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.

The Data Resources Program (DRP) currently handles data requests from the Maternal and Child Health (MCH) Bureau and the Children with Special Health Care Needs (CSHCN) Bureau, as well as from outside state agencies, local colleges, and universities. The DRP 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 coordination of Title V MCH Block Grant Application each year. The program developed a web-based application titled Web Enabled Systematic Tracking Tool (WESTT) to align better with MCHB TVIS. The use of WESTT has allowed the 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. By providing around-the-clock access, WESTT makes it more convenient for contributors to work on block grant assignments when it fits their schedules. Program staff members have welcomed the system and have reported satisfaction with the fact that the new system has reduced overall assignment completion time.

The DRP also formed a work group, the Data and Information Group (DIG), to bring together innovative ideas and data projects focused on the MCH/CSHCN populations. Opportunities for collaboration with other UDOH programs are achieved through this group. Staff from the MCH and CSHCN programs participate in the meetings, which provide a forum for establishing priorities, developing concepts for data studies, application of data analysis to program planning efforts, and so on. The meetings enable program staff to learn what the others are doing or would like to do, which leads to ideas for new projects or to contributions for other’s 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 UDOH 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 Program (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 CSHCN Bureau 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. It 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 UDOH 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 need after such a loss.

The Perinatal Mortality Review (PMR) Program reviews maternal deaths and infant deaths related to perinatal conditions. Information on deaths are 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 housed at the Michigan Public Health Institute. Utah’s Child Fatality Review program also uses the National 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 Mother To Baby/Pregnancy Risk Line 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

The MCH/CSHCN Bureaus continue to have ongoing challenges with funding for data systems improvement and staffing. Data systems are expensive to build and maintain and state dollars and grant opportunities are limited. Title V Bureaus are hopeful that the new merger between the Departments of Health and Human Services will provide more collaborative funding and/or consolidations of systems to allow for more data capacity.