Georgia’s Newborn Surveillance & Tracking System (NSTS) Akilah Heggs, MA, CCC-A Susan Bertonaschi, M.S. Elisa Stamey, R.N. Georgia Division of Public Health Family Health Branch Atlanta, Georgia

Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA or if you will be discussing unapproved or “off-label” uses of pharmaceuticals or devices.

Office of Information Technology NSTS is … An integrated Web-based system for the collection, management, and analysis of newborn, child health and case management information with secure access by a range of approved private and public health care providers in Georgia.

Office of Information Technology NSTS is … (con’t) Encompasses: –Children 1 st –Universal Newborn Hearing Screening and Intervention (UNHSI), –Genetics Services Program, –Georgia Birth Defects Reporting and Information System (GBDRIS) and –Georgia’s Childhood Lead Poisoning and Prevention Program –Expandable to include other health conditions

Office of Information Technology NSTS Vision Newborn Surveillance and Tracking System (NSTS) is envisioned as the information backbone for Children 1 st that will serve as the catalyst for ensuring that all children and families receive the appropriate screenings, referrals, and follow-up services to which they are entitled. The ultimate goal is to create a health profile for every child within the public health system with access to this profile for clinicians, interventionists, and public health officials.

Office of Information Technology NSTS Users and Roles Hospitals –98 birthing hospitals Newborn hearing screening Children 1 st risk factors Metabolic screening Public Health –State Level Epidemiologists and Program Managers Surveillance and program management –District Level Program Managers and County Health Department Staff 18 districts & 159 counties Identification, monitoring, follow up, referrals Primary Care Physicians –Pediatricians and Family Practitioners Identification, monitoring Audiologists Identification, intervention

Office of Information Technology Collaborative Effort  Georgia Division of Public Health  Epidemiology Branch, DPH  Family Health Branch, DPH  Vital Records Branch, DPH  Georgia Immunization Registry, DPH  Georgia Public Health Laboratory, DPH  District and County Health Departments  Hospitals  Private Providers  Office of Information Technology, DHR  Georgia Technology Authority

Office of Information Technology Children 1 st Single Point of Entry –Birth to age 5 –Infants and children at risk for poor health and developmental outcomes Core Functions –Identification/Screening –Assessment –Linkage/Referral –Monitoring –Tracking Newborn Hearing Screening

Office of Information Technology Universal Newborn Hearing Screening and Intervention Program (UNHSI) State Infrastructure –Public Health –Hospitals –Private Providers District Infrastructure –Referrals –Follow-up –Intervention

Office of Information Technology Project Goals Population Based Surveillance  Integrating metabolic screening data and electronic birth data with NSTS to create a population-based system Identification and Tracking of At Risk Children through:  Children 1 st Surveillance and Intervention of:  Newborn and Child Hearing Loss  Blood Lead Levels  Birth Defects  Genetic and Metabolic Conditions

Office of Information Technology Project Goals Data Integration, Deduplication and Matching  Newborn screening results  Birth and fetal death records from EBRS  Automated hospital hearing screening test results  Laboratory reports of blood lead test results  Electronic birth defect records abstracted from hospital medical records

Office of Information Technology Project Objectives Implementation in Series of Releases based on Public Health Needs  Year 1:  Children 1 st and Newborn Hearing Functionality (UNHSI)  Integration of EBRS and Hearing Screening Data  Users: District Health Departments (Children 1 st and UNHSI Coordinators), State Staff, Hospitals, Audiologists, Primary Care Providers

Office of Information Technology Project Objectives Implementation in Series of Releases based on Public Health Needs  Year 2:  Genetic and Metabolic Conditions, integration with GPHL Newborn Screening Data  Birth Defects Functionality (GBDRIS)  Users: State Staff; Hospitals; Genetics Services Program and Contracting Agencies (Emory, Grady, Medical College of Georgia), Children 1 st

Office of Information Technology Project Objectives Implementation in Series of Releases based on Public Health Needs  Year 3:  Georgia Lead Poisoning Prevention Program (GLPPP) functionality including Geospatial analysis.  Users: State Staff, Regional Lead Coordinators, Children 1 st Staff.

Office of Information Technology Project Status April Limelight Technologies awarded contract May-August Gap Analysis and Requirements Gathering Completed Sep–November 2005 –System Design Completed –Pilot Sites Recruited Nov 2005-March 2006 – System Build April–June 2006 – System Testing July-August 2006– Pilot Go Live anticipated ~ September 2006.

Office of Information Technology NSTS at the Local Level Current district data collection and tracking process Engaging potential users and community partners How NSTS will improve the tracking and monitoring process

Office of Information Technology Pilot Selection Process How pilot participants were selected Process for engaging pilot participants Pilot Activities

Office of Information Technology NSTS Pilot Sites 2 District Health Departments –Fulton –Dalton 2 Hospitals 2 Audiology Clinics 2 Pediatric Practices

Office of Information Technology NSTS Strengths & Values Seamless integration of NSTS and EBRS in Year 1 And with Newborn Screening Reports in Year 2 Hearing Screening Data transfer from Hospital equipment Probabilistic Data Matching and Deduplication Electronic submission of all Children 1st Forms Work Center –To-Do list Automated queues to streamline the work load –Follow-Up or interval Letters Child Health Status Page Tracking of children in foster care Preserving history of important demographic data and up-to-date data Automated geo-coding of child’s addresses for Lead module Standard and Customizable Reports Data Export

Office of Information Technology Sample Work Center

Office of Information Technology Sample Child Health Status Page

Office of Information Technology Sample Child Demographic History

Office of Information Technology Probabilistic Data Matching and Deduplication

Office of Information Technology Questions? Contact Information: Siobhan Gilchrist (404)