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

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

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

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.

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)

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.

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.

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.

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 e-mail 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

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

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.

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.

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 e-mail 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.

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.

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

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.