NY’s Title V MCHSBG 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 augmented 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 MCHSBG and MCH efforts overall are administered within DFH or are administered by other NYSDOH organizational units and DFH staff maintain strong partnerships and formal data use agreements to access needed data. Within DFH are the following systems:

• Early Hearing Detection and Intervention System (EHDI-IS 2.0) 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.
• New York Early Intervention System (NYEIS) is a centralized, web-based system that electronically manages Early Intervention Program (EIP) administrative tasks and provides for the exchange of information among municipalities, EIP providers and State administrators. The system is designed to support the EIP's service delivery, provider approval, financial, administration, and management activities at both the local and state levels by recording all EIP activities, including initial intake, evaluation, eligibility determination, Individualized Family Service Plan development, service provision, collection of third party insurance information (Medicaid and Commercial Insurers) and entry of claims from providers requesting reimbursement for EIP services provided.
• Individual program data systems (e.g., Family Planning Program; Maternal, Infant, and Early Childhood Home Visiting program; School-Based Health Centers; Adolescent Pregnancy Prevention Programs; NYS Perinatal Quality Collaborative) where data particular to each program are collected for program monitoring and evaluation.

The systems outside of DFH that DFH staff access via partnership or formal agreements are:

• Vital Records (VR), two separate systems for NYC and Rest of State (ROS)
  • Core Electronic Birth Certificate (EBC): 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 SPDS was developed to make data available for NYSDOH and hospitals for monitoring and quality improvement. Web-based and modular in design, SPDS includes the Core EBC that captures birth data in hospitals outside of NYC, and the NICU module (see below). The EBC 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 (NCHS) standards for collection of electronic birth data, the Core EBC Module also includes quality improvement (QI) variables.
  • NYS Electronic Death Registration System (EDRS) is a secure web-based system for electronically registering deaths for NYS hospitals, excluding NYC. EDRS 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.
  • 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 SPDS, using NCHS standards supplemented by the set of QI variables, but does not as yet provide NYC hospitals with access to the same statistical summary reports and data extraction capabilities as are available for upstate hospitals.
• Neonatal Intensive Care Unit (NICU) Module is a module of the SPDS 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 also 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 currently 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 (APD) 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 APD includes hospital discharge (i.e., SPARCS), VR death data, and Medicaid claims and encounter data. Going forward, VR 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 (LHD), 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. ECLRS 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 LHDs to carry out the required case management and follow-up activities for children with elevated blood lead levels (BLL). All BLL test results for children younger than 18 are reported to LeadWeb by laboratories, and LHDs are notified of new cases identified in their county. LeadWeb also collects information on housing-related hazards and environmental follow-up for each child. LHD 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.
• Pregnancy Risk Assessment Monitoring System (PRAMS) 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 PRAMS project is to improve the health of mothers and infants by reducing adverse outcomes such as low birth weight, infant mortality and morbidity, and maternal morbidity. PRAMS 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 (BRFSS) 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 BRFSS 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 BRFSS sample is representative of the non-institutionalized civilian adult population, aged 18 years and older.
• The Youth Risk Behavior Survey (YRBS), 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 YRBS is conducted every two years among a representative group of NY students in grades 9–12. The NYS Center for School Health conducts the YRBS in NYS on behalf of the NYS Education Department.

DFH partnered with NYSDOH’s Public Health Information Group to build a MCH Dashboard (https://www.health.ny.gov/MCHdashboard), which is comprised of select national and state performance measures related to the NYS’s Title V MCHSBG application. It was built to support the assessment of needs, monitor progress towards improving the health of NYS MCH 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.

DFH partnered with OQPS to begin building a Perinatal Data Warehouse, which will house linked VR birth and death data and hospital discharge data (i.e., SPARCS) and provide summary reports of priority birthing outcomes to birthing facilities and DFH. The warehouse and its reports will aid the quality improvement efforts of the NYSPQC, with the broader aim of addressing health disparities in birth outcomes, particularly maternal mortality and morbidity. This project is ongoing after being delayed March 2020-February 2021 due to staff reassignment for COVID-19 pandemic response.