Presentation on theme: "Virginia’s Newborn Hearing Screening Program"— Presentation transcript:
1Virginia’s Newborn Hearing Screening Program Tracking From BirthPat T. Dewey, M.Ed.Program ManagerVirginia Department of Health
2Virginia’s Program Mandated by Code of Virginia Hospitals screen and inform parentHospitals report to VDHVDH responsible for trackingConfidentiality also in the CodeConsent not required
3VISITS A Web-based, Integrated Data Management and Tracking System Virginia Infant Screening and Infant Tracking SystemA Web-based, Integrated Data Management and Tracking System
4VISITS: General Information web-based, integrated tracking and data management systemdeveloped 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.
5General Information VISITS supports the following statewide programs: Newborn Hearing Screening ProgramVaCARES (Virginia Congenital Anomalies Reporting and Education System)Newborn Metabolic ScreeningsAt-Risk (Child Find for Part C)
6VISITS: 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.
7Primary FeaturesAllows immediate access to all infant records without the need for exporting or transferring data.Facilitates information sharing and improved communication among VDH programs.
8Primary FeaturesProvides 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.
9VISITS: Confidentiality FirewallEncryptionPassword ProtectionAssigned security rightsFirewall: 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 dataAssigned 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
10Data Items Test/equipment used Screener’s name Screening results, each earSettingReason not screenedRisk indicators for hearing lossThe 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 nameRisk indicators - Use JCIH recommendations; specification required,such as for family history, who?specify the neonatal indicators or the syndrome
11Record Identifiers System assigns a unique number No master index Linkages with birth certificate data is being pursueEach 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 iftheir hospital entered the infant originally or,Infant was reported as born at that facilityThere is no master index other than that used by the integrated systemWe 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.
12Primary Care Providers Hospitals required to inform PCPVDH contacts PCP on infants who refer and infants lost to follow-upPCP has no access to VISITSFollow-up and tracking information entered by VDHThe 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.
13Audiologists Regulations require reporting to VDH Follow-up forms distributed statewideForm can be mailed or faxedCan be completed on line (program Web site) and sent viaNo access to VISITSWe 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.
14ParentsCode of Virginia gives responsibility to VDH to establish and maintain the identification and tracking systemCode allows VDH to contact familiesVDH sends letter to parent to remind them of the need for follow-upVDH sends letter when child identified with hearing lossThe 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.
15Collaborations Children with Special Health Care Needs Program Part C of IDEANew Pediatric Screening and Genetic Services UnitThe 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
16Pediatric Screening and Genetic Services Newly created within VDH, Division of Child and Adolescent HealthDirector is Nancy Ford, MPH, RNWill ultimately include the following genetics-related programs, some of which are currently within Division of Women’s and Infants’ Health:VaCARESVirginia Newborn Screening ServicesVirginia Newborn Hearing Screening ProgramVDH representation to Part C – IDEA.