1. Virginia’s Newborn Hearing Screening Program
Tracking From Birth
Pat T. Dewey, M.Ed.
Program Manager
Virginia Department of Health

2. Virginia’s Program Mandated by Code of Virginia
Hospitals screen and inform parent
Hospitals report to VDH
VDH responsible for tracking
Confidentiality also in the Code
Consent not required

3. VISITS A Web-based, Integrated Data Management and Tracking System
Virginia Infant Screening and Infant Tracking System
A Web-based, Integrated Data Management and Tracking System

4. VISITS: General Information
web-based, integrated tracking and data management system
developed by the Virginia Department of Health through a contractual agreement with Health Informatics.
major funding provided by Virginia Department of Mental Health Mental Retardation and Substance Abuse Services (DMHMRSAS), lead agency for Part C of IDEA. Title V funds used for project management.

5. General Information VISITS supports the following statewide programs:
Newborn Hearing Screening Program
VaCARES (Virginia Congenital Anomalies Reporting and Education System)
Newborn Metabolic Screenings
At-Risk (Child Find for Part C)

6. VISITS: Primary Features
Tracks all infants born in Virginia.
Provides a single point of entry for infant records.
Provides a user-friendly mechanism to electronically transmit required data to a centralized database.
Establishes a statewide, web-based centralized Oracle database.

7. Primary Features
Allows immediate access to all infant records without the need for exporting or transferring data.
Facilitates information sharing and improved communication among VDH programs.

8. Primary Features
Provides ability to quickly and easily detect statewide trends and report statistics.
Generates letters to ensure that infants testing positive receive the necessary follow-up services and information.

9. VISITS: Confidentiality
Firewall
Encryption
Password Protection
Assigned security rights
Firewall: Defends against unauthorized users accessing a private network (Usually the first line of defense)
Screens all messages coming or going to meet certain security criteria.
Encryption: is the process of encoding data to prevent unauthorized parties from viewing or modifying it.
Up to 3.4 trillion billion billion billion--or 2 to the power of 128--possible combinations of zeros and ones.
Password Protection: Prevents unwanted access to data, documents, and message.
All users are assigned unique usernames and passwords.
Only those users with valid logins can access the data
Assigned security rights: Security rights limit a user’s ability to view, edit. update, and/or delete different types/levels of data.
Limits the level of detail for reporting

10. Data Items Test/equipment used Screener’s name
Screening results, each ear
Setting
Reason not screened
Risk indicators for hearing loss
The hearing screening data items are:
Was screening done in- or out-patient?
Reason not screened, if missed, refused, transferred out of state; if transferred, hospital name
Risk indicators - Use JCIH recommendations; specification required,
such as for family history, who?
specify the neonatal indicators or the syndrome

11. Record Identifiers System assigns a unique number No master index
Linkages with birth certificate data is being pursue
Each child is uniquely identified with a number assigned by the system when infant is first entered. There is a search capability to avoid duplicates being entered. Hospital users have access to infant’s record if
their hospital entered the infant originally or,
Infant was reported as born at that facility
There is no master index other than that used by the integrated system
We are working with the State Registrar to facilitate linkages with the Electronic Birth Certificate. The VaCARES program uses data from the birth and death certificates to produce annual reports.

12. Primary Care Providers
Hospitals required to inform PCP
VDH contacts PCP on infants who refer and infants lost to follow-up
PCP has no access to VISITS
Follow-up and tracking information entered by VDH
The regulations require that hospitals also notify the Primary Medical Care Provider of the infants status regarding newborn hearing screening. The NHS Program contacts primary care providers directly to alert them to infants who refer, infants who are at-risk and those with no follow-up information received by VDH after 6 months post discharge.
PCP has no access to VISITS.

13. Audiologists Regulations require reporting to VDH
Follow-up forms distributed statewide
Form can be mailed or faxed
Can be completed on line (program Web site) and sent via
No access to VISITS
We developed and disseminated follow-up forms to be completed and returned to the VDH program office. We will also contact audiologists on children reported on once, but on whom no further information is received.
Our biggest challenge is ensuring that all audiologists are reporting to VDH. Our education efforts will help with this.

14. Parents
Code of Virginia gives responsibility to VDH to establish and maintain the identification and tracking system
Code allows VDH to contact families
VDH sends letter to parent to remind them of the need for follow-up
VDH sends letter when child identified with hearing loss
The Code of Virginia allows VDH to contact families to assure that they have all the information they need to make decisions for their child.
The program is currently sending another reminder if no report has been received and the child is over 6 months of age. We may phase out this letter as we increase communication with PCP.
New integrated database will allow coordination of communication with families among the programs.
If this information is not given to parents by the hospitals, they do get the information in the letter from VDH.

15. Collaborations Children with Special Health Care Needs Program
Part C of IDEA
New Pediatric Screening and Genetic Services Unit
The Newborn Hearing Screening Program connects families and children with the CSHCN program (within the same Division) and provides direct referral to Part C Early Intervention services.
There is a new database for the CSHCN program that will be linked to VISITS.
And, Part C (DMHMRSAS is lead agency) is currently working on a new database that will facilitate direct linkages with VDH VISITS for child find activities.
And, a “plug” for our new unit

16. Pediatric Screening and Genetic Services
Newly created within VDH, Division of Child and Adolescent Health
Director is Nancy Ford, MPH, RN
Will ultimately include the following genetics-related programs, some of which are currently within Division of Women’s and Infants’ Health:
VaCARES
Virginia Newborn Screening Services
Virginia Newborn Hearing Screening Program
VDH representation to Part C – IDEA.