Georgia’s Newborn Surveillance & Tracking System (NSTS)

1. 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

2. 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.

3. 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.

4. NSTS is … (con’t) • Encompasses: • Children 1st • 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

5. NSTS Vision Newborn Surveillance and Tracking System (NSTS) is envisioned as the information backbone for Children 1st 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.

6. NSTS Users and Roles • Hospitals • 98 birthing hospitals • Newborn hearing screening • Children 1st 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

7. 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

8. Children 1st • 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

9. Universal Newborn Hearing Screening and Intervention Program (UNHSI) • State Infrastructure • Public Health • Hospitals • Private Providers • District Infrastructure • Referrals • Follow-up • Intervention

10. 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 1st Surveillance and Intervention of: • Newborn and Child Hearing Loss • Blood Lead Levels • Birth Defects • Genetic and Metabolic Conditions

11. 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

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

13. 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 1st

14. 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 1st Staff.

15. Project Status • April 2005 -- Limelight Technologies awarded contract • May-August 2005 -- 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.

16. 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

17. Pilot Selection Process • How pilot participants were selected • Process for engaging pilot participants • Pilot Activities

18. NSTS Pilot Sites • 2 District Health Departments • Fulton • Dalton • 2 Hospitals • 2 Audiology Clinics • 2 Pediatric Practices

19. 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

20. Sample Work Center

21. Sample Child Health Status Page

22. Sample Child Demographic History

23. Probabilistic Data Matching and Deduplication

24. Questions? Contact Information: Siobhan Gilchrist (404) 657-4657 smgilchrist@dhr.state.ga.us