NYS’s Title V Maternal and Child Health Services Block Grant program relies on a number of robust data and information systems to inform priority setting, monitor health outcomes and disparities, and assess programs and policies. These systems include population-level data (e.g., vital statistics), representative surveys (e.g., Behavioral Risk Factor Surveillance System, Pregnancy Risk Assessment Monitoring System), and program data systems. The various data sources augment the data provided in the Federally Available Dataset during the Five-Year Needs Assessment to help set priorities and since then have been used monitor progress on improving the objectives and measures in the State Action Plan.

Data and information systems that inform Title V Maternal and Child Health Services Block Grant and Maternal and Child Health efforts overall are administered within the Division of Family Health or are administered by other NYSDOH organizational units and Division of Family Health staff maintain strong partnerships and formal data use agreements to access needed data.

Within the Division of Family Health, the following systems are maintained:

• The Division of Family Health maintains specific data systems to support individual program needs. These programs include the Family Planning Program; Maternal, Infant, and Early Childhood Home Visiting Program; Perinatal and Infant Community Health Collaborative; School-Based Health Centers and aligned with the Pediatric Mental Health Care Access (PMHCA) initiative which is working with School Based Health Centers; Adolescent Pregnancy Prevention Programs; Sexual Violence Prevention Programs; and the NYS Perinatal Quality Collaborative. Data particular to each program are collected for program monitoring and evaluation.
• For population surveillance for newborn hearing screening and follow-up, the Division of Family Health developed and maintains the Early Hearing Detection and Intervention System (EHDI-IS 2.0), which is a front-end web application integrated with the New York State Immunization Information System (NYSIIS) in 2018. It allows hospitals, audiologists, and primary care practitioners to document all hearing screening, diagnoses, and referrals to early intervention for all infants who are born in NYS.
• In addition, the Division of Family Health oversees the NYS Early Intervention Program under Part C of Individuals with Disabilities Education Act (often referred to as IDEA). Data from the NYS Early Intervention Program are linked with the Early Hearing Detection and Intervention Information System (EHDI-IS) to confirm referral of infants to the program when they have suspected and/or identified hearing loss. The NYS Early Intervention Program utilizes the New York Early Intervention System, which is a centralized, web-based system that electronically manages Early Intervention Program administrative tasks and provides for the exchange of information among municipalities, program providers and State administrators. The New York Early Intervention System is going to be replaced by the EI-Hub, which is a new solution designed specifically for the New York State Early Intervention Program. The EI-Hub will allow users across New York State to seamlessly manage the work they do for children in the Early Intervention Program. With a single sign-on through the Health Commerce System, EI-Hub users will be able to capture and report on child information from referral (intake) to transition, including managing provider data, provider management, claims creation, billing, and payments.

The systems outside of the Division of Family Health that staff access via partnership or formal agreements are:

• Vital Records (VR), two separate systems for NYS excluding NYC and for NYC
  • Core Electronic Birth Certificate: The Statewide Perinatal Data System (SPDS) is an electronic maternal and newborn data collection system which was established and is currently maintained by NYSDOH with the purpose of improving prenatal, obstetric, and newborn care for mothers and infants in NYS. The Statewide Perinatal Data System was developed to make data available for NYSDOH and hospitals for monitoring and quality improvement. Web-based and modular in design, the Statewide Perinatal Data System includes the Core Electronic Birth Certificate that captures birth data in hospitals outside of NYC, and the Neonatal Intensive Care Unit (NICU) module (see below). The Electronic Birth Certificate provides near-real-time data for use in vital records birth registration, rapid enrollment of eligible newborns in Medicaid, and maternal/child public health surveillance of hospitals and communities. In addition to meeting National Center for Health Statistics standards for collection of electronic birth data, the Core Electronic Birth Certificate Module also includes quality improvement variables.
  • NYS Electronic Death Registration System is a secure web-based system for electronically registering deaths for NYS hospitals, excluding NYC. The NYS Electronic Death Registration System simplifies the data collection process and enhances communication between health care providers and medical certifiers, medical examiners/coroners, funeral directors, and local registrars as they work together to register deaths.
  • Fetal death records used to identify pregnancy-related deaths.
  • NYC vital records system, eVital, allows all NYC hospitals to electronically submit birth and death registrations using mobile devices and facial recognition security. The eVital birth module captures the same birth data as the Statewide Perinatal Data System, using National Center for Health Statistics standards supplemented by the set of quality improvement variables, but does not provide NYC hospitals with access to the same statistical summary reports and data extraction capabilities as are available for upstate hospitals.
  • NYS Office of Mental Health Project TEACH and Psychiatric Services and Clinical Knowledge Enhancement System (PSYCKES) data.
• Neonatal Intensive Care Unit (NICU) Module is a module of the Statewide Perinatal Data System that captures detailed clinical information from all hospitals, including NYC, certified to provide specialty or intensive care to high-risk neonates, i.e., those designated as Level II, III or Regional Perinatal Center. The NICU Module captures data for all neonates admitted to special and intensive care nurseries for longer than four hours and includes information on newborns who die in the delivery room, or in transit to or within the neonatal special or intensive care units. Data include demographics for the infant and birthing person and diagnoses and treatments for the infant.
• Statewide Planning and Research Cooperative System (SPARCS) is a comprehensive all payer data reporting system established in 1979. It collects patient level detail on patient characteristics, diagnoses and treatments, services, and charges for each hospital inpatient stay and outpatient (ambulatory surgery, emergency department, and outpatient services) visit; and each ambulatory surgery and outpatient services visit to a hospital extension clinic and diagnostic and treatment center licensed to provide ambulatory surgery services.
• All Payor Database is a comprehensive health claims and clinical database aimed at improving quality of care, efficiency, cost of care and patient satisfaction available in a self-sustainable, non-duplicative, interactive, and interoperable manner that ensures safeguards for privacy, confidentiality, and security. Currently the All Payor Database includes the Statewide Planning and Research Cooperative System (SPARCS) hospital discharge data, vital records death data, and Medicaid claims and encounter data. Going forward, vital records birth data, commercial claims data, and other public health registries and electronic health records will be integrated.
• Newborn Screening Laboratory Information Management System (LIMS) is maintained by the Wadsworth Laboratory to record bloodspot samples received, demographics, results for the 50 different disorders tested, and follow-up.
• New York State Immunization Information System (NYSIIS) is the system where health care providers report all immunizations administered to persons less than 19 years of age and their immunization histories. It aims to establish a complete, accurate, secure, real-time immunization medical record that is easily accessible and promotes public health by fully immunizing all individuals appropriate to age and risk.
• Statewide Health Information Network for New York (SHIN-NY) facilitates the electronic exchange of clinical information and connects healthcare professionals statewide to improve patient outcomes, reduce unnecessary and avoidable tests and procedures, and lower costs. It ensures access to a patient’s electronic medical records wherever and whenever they need it. Health records are not publicly accessible. Only a patient decides who can see their records and may opt out at any time.
• Electronic Clinical Laboratory Reporting System (ECLRS) provides laboratories that serve NYS with a single electronic system for secure and rapid transmission of reportable disease information to NYSDOH, local health departments, and the New York City Department of Health and Mental Hygiene. It enhances public health surveillance by providing timely reporting; improving completeness and accuracy of reports; and generally facilitating the identification of emergent public health problems by monitoring communicable diseases, lead poisoning, HIV/AIDS, and cancer. The Electronic Clinical Laboratory Reporting System was particularly critical during the COVID-19 pandemic to record test results; public health law was changed to mandate reporting of SARS-CoV-2.
• LeadWeb is a NYSDOH-maintained system used by Local Health Departments to carry out the required case management and follow-up activities for children with elevated blood lead levels. All blood lead levels test results for children younger than 18 are reported to LeadWeb by laboratories, and Local Health Departments are notified of new cases identified in their county. LeadWeb also collects information on housing-related hazards and environmental follow-up for each child. Local Health Department staff are required to document when follow-up services are provided for each case, which they input directly into LeadWeb. As such, the system provides a real-time database of blood lead tests and follow-up activities.
• The Pregnancy Risk Assessment Monitoring System is an ongoing mail/telephone survey of mothers who have recently given birth to a live born infant, designed by the CDC. It collects information from mothers about behaviors and experiences before, during, and after pregnancy that are not available from other data sources. The goal of the Pregnancy Risk Assessment Monitoring System project is to make data available to inform policy and program investments to improve the health of mothers and infants by reducing adverse outcomes such as low birth weight, infant mortality and morbidity, and maternal morbidity. The Pregnancy Risk Assessment Monitoring System provides state-specific data for planning and assessing health programs and for describing maternal experiences that may contribute to maternal and infant health.
• Behavioral Risk Factor Surveillance System is an annual statewide random telephone and cellular surveillance survey designed by the CDC. The survey monitors modifiable risk behaviors and other factors contributing to the leading causes of morbidity and mortality in the population. Data from the Behavioral Risk Factor Surveillance System are useful for planning, initiating, and supporting health promotion and disease prevention programs at the state and federal level, and monitoring progress toward achieving health objectives for the state and nation. NYS’s Behavioral Risk Factor Surveillance System sample is representative of the non-institutionalized civilian adult population, aged 18 years and older.
• The Youth Risk Behavior Surveillance System, coordinated by the CDC, monitors students' health risks and behaviors in several categories, including weight and diet, physical activity, injury and violence, tobacco use, alcohol, and other drug use, and sexual behaviors.  The Youth Risk Behavior Survey is conducted every two years among a representative group of NYS students in grades 9–12. The NYS Center for School Health conducts the Youth Risk Behavior Survey in NYS on behalf of the NYS Education Department.

The Division of Family Health has partnered with NYSDOH’s Public Health Information Group to build the Maternal and Child Health Dashboard (https://www.health.ny.gov/MCHdashboard), which is comprised of select national and state performance measures related to the NYS’s Title V Maternal and Child Health Services Block Grant application. It was built to support the assessment of needs, monitor progress towards improving the health of NYS Maternal and Child Health populations, and reducing health disparities. It provides an interactive visual presentation of state and county data and for select measures, socio-demographic data. Where available, the most current data are compared to previous year data to monitor performance at both state and county levels. Trend graphs, tables, maps, and bar charts are available from the state and county homepage dashboard views. The Dashboard was updated in February 2023.

The Division of Family Health has a strong commitment to data systems development and utilizes Title V and State Systems Development Initiative funding to invest in infrastructure to promote data linkages and timely reporting.