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 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

Office of Information Technology

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.

Office of Information Technology

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

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 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

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 1st

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 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

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 1st

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 1st Staff.

Office of Information Technology

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.

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) 657-4657

smgilchrist@dhr.state.ga.us