One of the main objectives of the State Systems Development Initiative (SSDI) is to build and expand NY MCH data capacity to support Title V MCHSBG program activities and contribute to data-supported decision making in MCH programs, including assessment, planning, implementation and evaluation. The importance of NYSDOH data capacity is recognized as critical to identifying needs of the MCH population, including the impact of structural racism. Improving data integration and utilization allows for greater ability to assess trends in outcomes, including health disparities. With the changing landscape of NY’s population, services and resources, coupled with health reform changes that seek to improve outcomes and reduce disparities while not increasing costs, there is an increased demand for quality data that is available to MCH decision makers, program administrators and staff who are monitoring and evaluating programs and their impact.

i. Contributions of the SSDI grant in building and supporting accessible, timely & linked MCH data systems, as documented on Form 12 

NY has a strong commitment to data systems development and invests in infrastructure to promote data linkages and timely reporting. The following data sources are provided by partners to allow SSDI and other Title V staff to assess, monitor, and evaluate Title V programming in NY: Newborn Screening Program data; Vital Records (births, deaths); New York City Vital Records; Statewide Perinatal Data System; Children with Special Health Care Needs Database; Early Intervention Program Data; Behavioral Risk Factor Surveillance System; Centers of Disease Control and Prevention (CDC) Pregnancy Risk Assessment Monitoring System; Immunization Information System; Medicaid; Quality Assurance Reporting; Statewide Planning and Research Cooperative System; National Survey of Children’s Health; Early Hearing Detection Intervention; CDC Breastfeeding Report Card; National Immunization Survey; Sexually Transmitted Disease Surveillance; United States Current Population Survey; National Pediatric Nutrition Surveillance System; National Survey of Children with Special Healthcare Needs, Statewide Health Information Network in New York; Psychiatric Services and Clinical Knowledge Enhancement System; and United States Census data.

The SSDI Principal Investigator (PI), who is the DFH Medical Director, the SSDI Program Research Specialist (PRS), and other DFH research scientists have initiated several efforts to increase data capacity and advance the development and utilization of linked information systems between key MCH datasets in NY to improve access to electronic MCH health data. Updates on these various data linkage projects are as follows:

NY and NYC Linked Birth and Infant Death Data: Linked birth and infant death data sets for infant deaths occurring between the years 2002 and first quarter of 2020 (provisional data) are currently available for use by the Title V MCHSBG program. In this statewide linked data set, information from the death certificate is linked to information from the birth certificate for each infant under one year of age who was born and died as a NY resident. Title V MCHSBG staff uses linked birth and infant death data to identify mortality patterns during the neonatal and post neonatal time periods and risk factors present at birth needed for prevention planning to lower the burden of and decrease disparities in infant mortality (IM) rates.

Statewide Perinatal Data System (SPDS): SPDS is an electronic maternal and newborn data collection system established and maintained by NYSDOH with the purpose of improving prenatal, obstetric, and newborn care for NYS mothers and infants. The SPDS was developed to make data available to NYSDOH and hospitals for monitoring and quality improvement. Web-based and modular in design, the Core module comprises the electronic birth certificate (EBC) that captures birth data in hospitals outside of NYC, and an additional Neonatal Intensive Care Unit (NICU) module that captures data on high risk newborns admitted to neonatal intensive care units across NY. EBC data for births in NYC hospitals are captured in a separate coordinated system. The SPDS links individual-level data elements related to clinical measures and interventions, participation in public programs, demographics, and psychosocial and socioeconomic characteristics from various data sources including the NY/ NYC live birth certificate and other sources specific to maternal and newborn health and care in hospitals and birthing centers. The SPDS has been used to conduct public health surveillance of birth outcomes, to develop and implement an expanded plan for analysis and reporting of IM and selected morbidity data, and issue initial data reports.

NYS and NYC Linked Birth, Death and Hospital Discharge Data for Maternal Mortality and Morbidity:  The Maternal Mortality Review (MMR) initiative identifies maternal deaths through complex linkages between NYS death records of women ages 10-65 years old, birth records, and Statewide Planning and Research Cooperative System (SPARCS) hospital discharge records. A statewide file which contains comprehensive information from each data source is provided to DFH staff to prepare cases for the Maternal Mortality Review Board (MMRB). The MMRB completes a comprehensive review of factors leading to maternal deaths and provides recommendations to prevent these deaths. DFH staff works closely with the OQPS to improve data quality and completeness of administrative state databases for this initiative. DFH obtained access to preliminary statewide death records for 2019 deaths and the first quarter of 2020 death records. Quarterly linkages between statewide vital records (VR) (death and birth file) and SPARCS hospital discharge data provide additional sources of data for our maternal and IM and morbidity efforts. Title V staff have not received the linked VR to SPARCS data from OQPS during this reporting period due to data issues with SPARCS and COVID priorities.  Title V MCHSBG staff gained direct access to the Office of Mental Health’s Psychiatric Services and Clinical Knowledge Enhancement System (PSYCKES) which provides behavioral health information related maternal death cases.  The newly hired SSDI-funded PRS is learning the early death identification process in support of MMR activities and will be assisting with this process during the upcoming year.

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. The APD includes hospital discharge (i.e., SPARCS), VR death data, Medicaid claims and encounter data, and will ultimately integrate VR birth and commercial claims data, other public health registries and electronic health records. The APD is an invaluable source of comprehensive and longitudinal MCH data for the Title V MCHSBG program and will allow for more direct access to vital statistics, hospital discharge and Medicaid data. This platform will be the basis on which Title V MCHSBG builds a Perinatal Data Module which will allow NYS birthing facilities access to timely data for monitoring their outcomes, including maternal mortality, and support quality improvement. This module will be modeled after California Maternal Quality Care Collaborative.

Linked NY Early Intervention Program (EIP) and Children and Youth with Special Health Care Needs (CYSHCN): The comprehensive statewide EIP, part of a national EIP, serves over 65,000 infants and toddlers with developmental delays, with a focus on both child and family outcomes and strong commitments to better addressing children’s social-emotional developmental needs as well as family-centered practices and outcomes. To strengthen coordination and collaboration between EIP and CYSHCN programs on the local level, Title V staff have facilitated ongoing discussions between staff of both programs to ensure coordination of services for families of CYSHCN, including supports and services after the child has aged out of EIP. As part of program efforts, staff can see how many referrals EIP makes to CYSHCN Program. CYSHCN staff worked with EIP about referring to the CYSHCN Program. Our data is showing that this is working.

Early Hearing Detection and Intervention-Information System (EHDI-IS): This platform allows healthcare professionals to document results and details of newborn hearing screening, follow-up screening, audiological diagnosis, and referral to EIP. EHDI-IS’ connection to the NYS Immunization Information System allows NYC and Rest of State VR systems to initiate a child profile so healthcare professionals (e.g., audiologists, EHDI staff at birth hospitals and pediatricians) can review prior results, document new results, and determine the best care for children with hearing loss in a timely manner. Updating code that produces the screening, diagnosis, and referral information allowed the data analyst to produce results more efficiently. Time for monthly data downloads have decreased from 150 to approximately 20 minutes.  Over the past year, the EHDI Team came across two system-related challenges – one related to updates sent to the system from NYC VR and the other when merging multiple profiles for the same infant in NYSIIS – that affect the accuracy of EHDI-IS. Both challenges are under discussion with leadership to address and resolve.

Pregnancy Risk Assessment Monitoring System (PRAMS) Data Linked to NYS Birth Data: New York State PRAMS (excluding NYC) is combined with NYC PRAMS data each year to create a statewide PRAMS dataset that is used to update the PRAMS Dashboard. The dashboard includes data from 2004-2017 that is presented as single year indicators in charts and tables as well as ten-year trend charts. Total prevalence as well as demographic breakdowns are available for 64 maternal and child health indicators. The PRAMS dashboard is used by Title V MCHSBG staff for the tracking of various programmatic activities, including oral health care during pregnancy, infant sleep positioning, and breastfeeding practices.

ii. The role SSDI plays in enabling ongoing Title V program assessment, monitoring and reporting.

The SSDI PI, the SSDI PRS, and other program research scientists guide the collection and analysis of the data that forms the basis for the Five-Year Needs Assessment and the State Action Plan. Collectively these describe NY’s priority needs, key strategies and activities and National Health Status/Outcome Measures (NHS/OMS), National Performance Measures (NPMs), and State Performance Measures (SPMs) and structural and process measures. Staff partners with stakeholders to review and discuss relevant MCH data and recommend structural and process measures used to monitor progress in all MCH population domains.

In 2020, Title V staff guided the development, selection, refinement and/or tracking of data and performance measures that are associated with the MCHSBG priorities for the purpose of ascertaining progress towards achieving reported goals. SSDI and other Title V analytic staff assisted with the coordination of data collection for reporting minimum and core data set elements (M/CDS), NPMs, and SPMs both within and outside the DFH; contributed to ad hoc data analyses; and wrote summaries of data analyses relevant to the MCH population for the MCHSBG Application/Annual Report. These activities support Title V MCHSBG analysis of the NPMs and related structural/process objectives as part of the MCHSBG Application/Annual Report.

Staff are assisting with a plan to improve data linkages across the five-year SSDI funding cycle, particularly focusing on indicators from the Minimum/Core Dataset for Title V MCHSBG programs. In FFY 2018-2022, SSDI staff will implement the plan for overcoming identified barriers. New York State is currently reporting seven of the Core/National Dataset elements and six of the Core/State Dataset (CDS) elements as part of the MCHSBG. In 2021, staff will continue to perform a gap analysis based on amended or added CS elements. Staff will review the CDS gap analysis with Title V and Public Health Information Group (PHIG) and discuss strategies to improve NY’s capacity to report additional CDS elements.

iii. Key SSDI program activities, including any products or resource materials that were developed, which served to support State Title V program efforts

NYS Perinatal Quality Collaborative (NYSPQC)

The SSDI Program Research Scientist is assisting with data collection and analysis for the NYSPQC’s Opioid Use Disorder and Neonatal Abstinence Syndrome project with 47 birthing hospitals.  This collaborative aims to reduce maternal and neonatal morbidity and mortality through screening, referral, and management of pregnant women and affected newborns.

The NYSPQC conducted the Obstetric Hemorrhage project in collaboration with the American College of Obstetricians and Gynecologists (ACOG) District II, Healthcare Association of New York State, and Greater New York Hospital Association, with support from the National Institute for Children’s Health Quality (NICHQ).  Eighty-three NYS birthing hospitals from all levels of perinatal regionalization have participated.  The project aligns with the national Alliance for Innovation on Maternal Health led by ACOG.

NYS Safe Sleep IM Collaborative Improvement and Innovation Network (CoIIN)

Title V MCHSBG staff and 7 community-based organizations (CBOs), i.e. Healthy Start and Maternal and Infant Community Health Collaboratives, participated in the second national Safe Sleep IM CoIIN. Under the leadership of NICHQ, NYS and several other states worked to reduce disparities in infant mortality due to unsafe sleep.  Between July 2018 and May 2020, the CBOs provided safe sleep information to caregivers and administered a survey 30-60 days postpartum. Completed surveys were submitted to NYSDOH monthly for quality improvement purposes. Run charts were provided to the organizations to identify areas to focus their tests of change and assess whether the changes they made resulted in improvement.

Products or Resource Materials:

• New York State Maternal Mortality Review Report: A Comprehensive Review of the 2014 Cohort

• New York State Department of Health Infant Safe Sleep Toolkit

• Opioids and Neonatal Abstinence Syndrome: Language Matters (pamphlet)

• How to Care for a Baby with Neonatal Abstinence Syndrome (pamphlet)

• Perinatal Substance Use – 5 Ways You Can Improve Care During Pregnancy and Beyond (pamphlet)

• Your Pregnancy and Substance Use – 4 Ways to Get and Stay Healthier (pamphlet)

• ABCs of Safe Sleep Coloring Sheet

• Promoting Safe Sleep Practices in NYS – Information for Action