1HI*TRACK: Solving Newborn Hearing Screening Tracking Issues Karl R. White, PhDNational Center for Hearing Assessment and ManagementUtah State University
2Percentage of Newborns Screened Prior to Discharge
3Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample PrevalenceSite Size Per 1000Rhode Island (3/93 - 6/94) 16,Colorado (1/ /96) 41,New York (1/ /96) 27,Utah (7/ /94) ,Hawaii (1/ /96) 9,
4Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of RefersSite Size Per with DiagnosisRhode Island (3/93 - 6/94) 16, %Colorado (1/ /96) 41, %New York (1/ /96) 27, %Utah (7/ /94) , %Hawaii (1/ /96) 9, %
5Tracking "Refers" is a Major Challenge (continued)Initial RescreenBirths Screened Refer Rescreen ReferRhode Island53,12152,6595,3974,575677(1/ /96)(99%)(10%)(85%)(1.3%)Hawaii10,5849,6051,204991121(1/ /96)(91%)(12%)(82%)(1.3%)New York28,95127,9381,9531,040245(1/96-12/96)(96.5%)(7%)(53%)(0.8%)
6Examples of JCIH Benchmarks and Quality Indicators % of infants screeened during birth admission% of infants who do not pass birth admission screen% of families who refuse hearing screeening% of infants and families whose care is coordinated between the medical home and related professionals% of infants with completed audilogic and medical evaluations by 3 months of age% of infants with confirmed hearing loss :referred for otologic evaluationthat have a signed IFSP by 6 months of age% of infants with hearing aids receiving audiologic monitoring at least every 3 months
7Data Required for MCHB Project Annual Reports # of infants screened (95%)# of infants referred for audiologic diagnosis# and age of infants receiving audiologic diagnosis (before 3 months)# of infantsin a medical homeconnected with family-to-family support# and age at which identified infants are enrolled in early intervention services (before 6 months)
8CDC EHDI Reporting System # of live births# screened prior to discharge# screened before 1 month of age# referred from screening for audiologic evaluation# with audiological diagnosis by 3 months of age# with permanent congenital hearing loss (0-7 years)Hearing loss classified by type, degree and lateralityAverage/median age at which hearing loss diagnosised# of infants receiving intervention by 6 months of ageNumber of live births reported by calendar year by the state entity responsible for reporting vital statisticsNumber of infants receiving a physiological hearing screening test bilaterally prior to discharge.The number (in addition to those screened prior to discharge) screened before 1 month of ageDiagnostic audiological evaluation defined as the use of a battery of audiologic procedures to determine the type of hearing loss by obtaining frequency and intensity specific information on each ear.
9Healthy People 2010Increase to 100% the proportion of newborns served by state-sponsored early hearing detection and intervention programsProvide 100% of newborns access to screeningProvide follow-up audiologic and medical evaluations before 3 months for infants requiring careProvide access to intervention before 6 months for infants who are hard of hearing and deaf
10Good work, but I think we might need just a little more OPERATING SUCCESSFUL EHDI PROGRAMSoutThen amiracleoccursStartGood work,but I think we mightneed just a little moredetail right here.
11Purposes of an EHDI Data System ResearchProgram Improvementand Quality AssuranceScreeningDiagnosisInterventionMedical, Audiological andEducational
12Nature and Use of Information is Different For: HospitalsState Departments of HealthNational Agencies
13Computerized Patient/Data Management for Hospital-based UNHS Programs Tracking/scheduling related to screening, follow-up,diagnosis, and interventionCommunication with stakeholders (e.g., parents,physicians, audiologists)Reporting to funding and administrative agenciesProgram management, quality control, andrisk management
14Statewide EHDI Data System Monitoring program status to identify in-service and technicalsupport needs.Safety net for babies who "fall through the cracks"Assisting with follow-up / enrollment for diagnostic andintervention programsAccess to data for public health policy and administrativedecisions.Linking to other Public Health Information databases (e.g.,Immunization, WIC, Vital Statistics, Early Intervention, BirthDefects)
15Examples of Benefits from Linking EHDI Database with Other Public Health Information Systems An infant referred from the hospital-based UNHS program, but lost to follow-up, could be identified and provided with EHDI services when he or she comes in for the DPT Immunization at eight weeks of age.By linking the Birth Defects Registry and EHDI data, children with birth defects that make them substantially more likely to develop late onset losses could be monitored and provided with assistance at a much earlier time.Many of the children who become “lost” for immunizations or birth defects tracking are the same children who are lost for EHDI. By sharing information, fewer resources are needed to more successfully find and provide services to “lost” children.Linking the EHDI and vital statistics allows a population-based system to be created so that every live birth in the state is included in the EHDI system.
16Utah EHDI Data System State Department of Health Hospital 1 Hospital 2 ....Hospital 21
17Iowa EHDI System . . . . . State Department of Health Hospital 1 Area Education.Agency #1Hospital 9Hospital 10Hospital 11Area Education.Agency #2.State Department of HealthHospital 16..Hospital 17.Hospital 25Hospital 26Area Education.Agency #9.Hospital 35
19Hospitals Most Likely to Participate in a State EHDI Database If: it provides locally useful datagathering data is quicktransfer to the state is trouble-freeit reduces other reporting requirementsIt reduces risk
20Who Needs the Data? Screeners and program coordinators Hospital administratorsHealth care providersPublic Health officials
21What Type of Data is Needed? CORE VARIABLES:Collected continuously byeveryone.OPTIONAL VARIABLES:Everyone agrees they would benice, but some may not haveresources to collect (may not becollected continuously).RESEARCH VARIABLES:Some people think they areimportant; others should beaware that some are collectingthem.
22Examples of Possible:CORE VARIABLES OPTIONAL VARIABLES RESEARCH VARIABLESInfant's last nameGestational AgeTime of BirthMedical ID#Specific Results ofSexDiagnostic TestsDate of BirthNursery TypeDate and Time of ScreeningMother's Maiden NameTestBirthweightBirth HospitalType of DeliveryAmplificationScreening HospitalMother's OccupationalAge at AmplificationNoise ExposureInpatient Screen ResultDays in NICUOutpatient Screen ResultJCIH Risk IndicatorsDiagnostic ResultAge at Diagnosis
23Options for Developing an EHDI Patient/Data Management System Develop your ownModify an existing system, for example“Heelstick” data management systemElectronic Birth Certificate (EBC)Purchase an existing systemWhatever system you choose, should it be web- based?
24Combining EHDI Data Management with Existing Systems is Logical Because : Combining EHDI with Heelstick is attractive because:Both do initial screening of babies in the nursery prior to hospital dischargeBoth do 2nd stage or outpatient screening for a significant number of babiesPoor follow-up is currently the biggest challenge for EHDI programsHeelstick programs have been extremely successful with follow-upThe infrastructure for Heelstick follow-up system is already in placeCombining with Electronic Birth Certificate is an attractive option because the EBC is:Legally required for every birthContains wealth of demographic and medical dataEHDI information management looks deceptively simple at first glance.
26Heelstick Screening Procedures Small sample of blood collected and put on Heelstick form (filter paper) prior to discharge, but after 24 hours of ageForm sent to laboratory within hours or days for analysisA significant number of initial screenings need to be redone because of poor techniqueResults reported to State Follow-up Coordinator who contacts physicians and parents about “abnormals” (urgency depends on disease)Depending on state, about 1% to 2 % are abnormal. Additional blood is collected for these babies to confirm the screening result (diagnosis).EHDI information management looks deceptively simple at first glance.
28Inpatient Hearing Screening Multiple attempts are very commonDifferent screeners often attempt the same babyScreening can be done any time from shortly after birth to minutes before dischargeUse of both OAE and AABR becoming more commonSuccessful management requires more than knowing whether baby passed or referred
29Outpatient ScreeningDepending on protocol, outpatient screening required for 2-10% of all birthsUsually done between 2-14 days following dischargeSometimes done at a different location from inpatient screeningRequires coordination with baby’s doctor
30Audiological Diagnosis Often done at location other than screening hospitalRequires coordination with baby’s doctor and ENTOne visit often not sufficientAdvantages in coordinating with Part C, IDEA Child Find activities
31Enrollment in Early Intervention Continued need for data management and tracking because:Early Intervention requires ongoing, multidisciplinary servicesCoordination is needed with the baby’s medical homeImportant to link late-identified children with original screening results
32Issues to Consider Before Combining EHDI and Heelstick Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspotNBHS screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic proceduresWhen, where, how, and by whom NBHS screening is done is quite different than Heelstick
33Issues to Consider Before Combining EHDI with Heelstick or EBC Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspotScreening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic proceduresWhen, where, how, and by whom NBHS screening is done is quite different than HeelstickTiming of data collection and entryIdeal if Heelstick or EBC is always followed by NBHS, but it doesn’t happen that wayWhen are you finished with NBHS?How are outpatient NBHS screenings updated?
34Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Will hospital’s staff have timely access to the data for program improvement and follow-up?Screener performanceScheduling outpatient screening, referring for Diagnostic Assessments, confirmed hearing lossCan hospitals update dataWho decides which data is most accurate?
35Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Will the Heelstick or EBC form include all the “fields” you need?Heelstickor EBC forms with NBHS fields usually only include type of test, left ear result, right ear result. Do you need….?Screener IDMother’s languageType of insuranceWho decides if and when you can add or modify “fields”Hearing loss risk factorsResults for multiple tests or attemptsOutpatient screening results
36Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Will the Heelstick or EBC form include all the “fields” you need?Heelstick and EBC forms with NBHS fields usually only include type of test, left ear result, right ear result. Do you need….?Screener IDMother’s languageType of insuranceWho decides if and when you can add or modify “fields”Can you transfer data from screening machines directly to the Heelstick or EBC?Duplicate data entryTransmission errorsHearing loss risk factorsResults for multiple tests or attemptsOutpatient screening results
37Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Combining EHDI with Heelstick or EBCisn’t freeCosts of modifying and reprinting forms is very smallCost of adding fields to Heelstick follow-up software and generating new letters / reports can be substantial ($50K+)Cost of developing software to process EBC data for EHDI data management system can be even more expensiveCosts and risks of duplicate data entry are significant (screener records info, transfers to Heelstick form, lab personnel keypunch)
38Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Follow-up of babies requires substantial personnel resources whether or not NBHS is combined with Heelstick or EBCAlthough it varies widely, Heelstick follow-up typically requires about 1 FTE per 30,000 births expect similar resources for NBHS2% to 10% of babies will require some type of follow-up for NBHSDo Heelstick follow-up staff understand EHDI issues well enough to do follow-up?
39Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Sources of information are quite different for diagnostic confirmation of screening resultsFor Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick CoordinatorFor NBHS: Information is reported in various forms toPhysician, hospital, and / or state EHDI coordinatorfrom hospitals, community-based audiologists, physicians
40Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) Sources of information are quite different for diagnostic confirmation of screening resultsFor Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick CoordinatorFor NBHS: Information is reported in various forms to hospital or state EHDI coordinator from hospitals, community-based audiologists, physicians
41Is a Web-based System the Answer? Access?Speed?Linkages with existing data?Flexibility?Security?
42Demonstrations of: Stand Alone system Web-based system (Demos of HI*TRACK are also available at
43Thin-Client Architecture BenefitsIssuesInstallation on the client machine is not required.Software updates do not require any maintenance on the client machines.Cheaper to deploy.Reduced user interface functionality.Slower response times for user interactions.If network stops, work stops.Difficult to integrate with third party screening software.Database ServerThin ClientSoftware = UI (user interface) is Web BrowserPresentation & Business Rule Layers
44Medium-Client Architecture BenefitsIssuesBetter responsiveness than thin-client.More feature rich user interface.“Business rule” changes require no change on clients.Better integration with third party screening software.Client requires software to be installed.If network stops, work stops.User interface changes require the clients to be updated.Database ServerMedium ClientBusiness Rule LayerSoftware = UI & Presentation
45Fat-Client Architecture BenefitsIssuesFull feature user interface.Even better user responsiveness.Good integration with third party screening software.Software changes require the clients to be updated.If network stops, some features not availableDatabase ServerFat ClientSoftware = UI & Presentation & Business Rules
46Stand-alone Architecture BenefitsIssuesFull feature user interface.Best user responsiveness.Work is not dependent on the network.Best integration with third party screening software.Software changes require updates to be installed.Can only be accessed from the user’s machineStandAloneSoftware = UI & Presentation & Business Rulesand Data Base
47Good work, but I think we might need just a little more OPERATING SUCCESSFUL EHDI PROGRAMSoutThen amiracleoccursStartGood work,but I think we mightneed just a little moredetail right here.