Presentation on theme: "HI*TRACK: Solving Newborn Hearing Screening Tracking Issues Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University."— Presentation transcript:
HI*TRACK: Solving Newborn Hearing Screening Tracking Issues Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University
Percentage of Newborns Screened Prior to Discharge
Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence Site Size Per 1000 Rhode Island (3/93 - 6/94) 16, Colorado (1/ /96) 41, New York (1/ /96) 27, Utah (7/ /94) 4, Hawaii (1/ /96) 9,
Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of Refers Site Size Per 1000 with Diagnosis Rhode Island (3/93 - 6/94) 16, % Colorado (1/ /96) 41, % New York (1/ /96) 27, % Utah (7/ /94) 4, % Hawaii (1/ /96) 9, %
Examples 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 evaluation –that have a signed IFSP by 6 months of age % of infants with hearing aids receiving audiologic monitoring at least every 3 months
Data 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 infants –in a medical home –connected with family-to-family support # and age at which identified infants are enrolled in early intervention services (before 6 months)
CDC 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 laterality Average/median age at which hearing loss diagnosised # of infants receiving intervention by 6 months of age
Healthy People 2010 Increase to 100% the proportion of newborns served by state-sponsored early hearing detection and intervention programs Provide 100% of newborns access to screening Provide follow-up audiologic and medical evaluations before 3 months for infants requiring care Provide access to intervention before 6 months for infants who are hard of hearing and deaf
Good work, but I think we might need just a little more detail right here. OPERATING SUCCESSFUL EHDI PROGRAMS Then a miracle occurs out Start
Purposes of an EHDI Data System Screening Research Diagnosis Intervention Medical, Audiological and Educational Program Improvement and Quality Assurance
Nature and Use of Information is Different For: Hospitals State Departments of Health National Agencies
Computerized Patient/Data Management for Hospital-based UNHS Programs Tracking/scheduling related to screening, follow-up, diagnosis, and intervention Communication with stakeholders (e.g., parents, physicians, audiologists) Reporting to funding and administrative agencies Program management, quality control, and risk management
Statewide EHDI Data System Monitoring program status to identify in-service and technical support needs. Safety net for babies who "fall through the cracks" Assisting with follow-up / enrollment for diagnostic and intervention programs Access to data for public health policy and administrative decisions. Linking to other Public Health Information databases (e.g., Immunization, WIC, Vital Statistics, Early Intervention, Birth Defects)
Examples 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.
Utah EHDI Data System State Department of Health Hospital 1 Hospital 2 Hospital Hospital 21
Iowa EHDI System State Department of Health Hospital 1 Hospital 2.. Hospital 9 Hospital 10 Hospital 11.. Hospital 16 Hospital 17 Hospital 25 Hospital 26.. Hospital 35 Area Education Agency #1 Area Education Agency #2 Area Education Agency #9...
Hawaii EHDI System Hospital 1 Hospital 2 Hospital Hospital State Department of Health Zero-to-Three Project Early Intervention Programs
Hospitals Most Likely to Participate in a State EHDI Database If: it provides locally useful data gathering data is quick transfer to the state is trouble-free it reduces other reporting requirements It reduces risk
Who Needs the Data? Screeners and program coordinators Hospital administrators Health care providers Public Health officials
What Type of Data is Needed? CORE VARIABLES: OPTIONAL VARIABLES: RESEARCH VARIABLES: Collected continuously by everyone. Everyone agrees they would be nice, but some may not have resources to collect (may not be collected continuously). Some people think they are important; others should be aware that some are collecting them.
CORE VARIABLES OPTIONAL VARIABLES RESEARCH VARIABLES Infant's last name Medical ID# Date of Birth Mother's Maiden Name Birth Hospital Screening Hospital Inpatient Screen Result Outpatient Screen Result Diagnostic Result Age at Diagnosis Time of Birth Sex Nursery Type Birthweight Amplification Age at Amplification Gestational Age Specific Results of Diagnostic Tests Date and Time of Screening Test Type of Delivery Mother's Occupational Noise Exposure Days in NICU JCIH Risk Indicators Examples of Possible:
Options for Developing an EHDI Patient/Data Management System Develop your own Modify an existing system, for example o Heelstick data management system o Electronic Birth Certificate (EBC) Purchase an existing system Whatever system you choose, should it be web- based?
Combining 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 discharge –Both do 2 nd stage or outpatient screening for a significant number of babies –Poor follow-up is currently the biggest challenge for EHDI programs –Heelstick programs have been extremely successful with follow-up –The infrastructure for Heelstick follow-up system is already in place Combining with Electronic Birth Certificate is an attractive option because the EBC is: –Legally required for every birth –Contains wealth of demographic and medical data
North Carolina Heelstick Form
Heelstick Screening Procedures Small sample of blood collected and put on Heelstick form (filter paper) prior to discharge, but after 24 hours of age Form sent to laboratory within hours or days for analysis A significant number of initial screenings need to be redone because of poor technique Results 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).
Inpatient Hearing Screening Multiple attempts are very common Different screeners often attempt the same baby Screening can be done any time from shortly after birth to minutes before discharge Use of both OAE and AABR becoming more common Successful management requires more than knowing whether baby passed or referred
Outpatient Screening Depending on protocol, outpatient screening required for 2-10% of all births Usually done between 2-14 days following discharge Sometimes done at a different location from inpatient screening Requires coordination with babys doctor
Audiological Diagnosis Often done at location other than screening hospital Requires coordination with babys doctor and ENT One visit often not sufficient Advantages in coordinating with Part C, IDEA Child Find activities
Enrollment in Early Intervention Continued need for data management and tracking because: –Early Intervention requires ongoing, multidisciplinary services –Coordination is needed with the babys medical home Important to link late-identified children with original screening results
Issues to Consider Before Combining EHDI and Heelstick 1.Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspot NBHS screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic procedures When, where, how, and by whom NBHS screening is done is quite different than Heelstick
Issues to Consider Before Combining EHDI with Heelstick or EBC 1.Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspot Screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic procedures When, where, how, and by whom NBHS screening is done is quite different than Heelstick 2.Timing of data collection and entry Ideal if Heelstick or EBC is always followed by NBHS, but it doesnt happen that way When are you finished with NBHS? How are outpatient NBHS screenings updated?
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 3.Will hospitals staff have timely access to the data for program improvement and follow-up? Screener performance Scheduling outpatient screening, referring for Diagnostic Assessments, confirmed hearing loss Can hospitals update data Who decides which data is most accurate?
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 4.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 ID Mothers language Type of insurance Who decides if and when you can add or modify fields Hearing loss risk factors Results for multiple tests or attempts Outpatient screening results
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 4.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 ID Mothers language Type of insurance Who decides if and when you can add or modify fields 5.Can you transfer data from screening machines directly to the Heelstick or EBC? Duplicate data entry Transmission errors Hearing loss risk factors Results for multiple tests or attempts Outpatient screening results
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 6.Combining EHDI with Heelstick or EBCisnt free Costs of modifying and reprinting forms is very small Cost 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 expensive Costs and risks of duplicate data entry are significant (screener records info, transfers to Heelstick form, lab personnel keypunch)
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 7.Follow-up of babies requires substantial personnel resources whether or not NBHS is combined with Heelstick or EBC Although it varies widely, Heelstick follow-up typically requires about 1 FTE per 30,000 births expect similar resources for NBHS 2% to 10% of babies will require some type of follow-up for NBHS Do Heelstick follow-up staff understand EHDI issues well enough to do follow-up?
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 8.Sources of information are quite different for diagnostic confirmation of screening results For Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick Coordinator For NBHS: Information is reported in various forms to Physician, hospital, and / or state EHDI coordinator from hospitals, community-based audiologists, physicians
Issues to Consider Before Combining EHDI with Heelstick or EBC (continued) 8.Sources of information are quite different for diagnostic confirmation of screening results For Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick Coordinator For NBHS: Information is reported in various forms to hospital or state EHDI coordinator from hospitals, community-based audiologists, physicians
Is a Web-based System the Answer? Access? Speed? Linkages with existing data? Flexibility? Security?
Demonstrations of: Stand Alone system Web-based system (Demos of HI*TRACK are also available at
Thin Client Database Server Thin-Client Architecture BenefitsIssues Installation 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. Presentation & Business Rule Layers Software = UI (user interface) is Web Browser
Mediu m Client Business Rule Layer Database Server Medium-Client Architecture Benefits Issues Better 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. Software = UI & Presentation
Fat Client Database Server Fat-Client Architecture Benefits Issues Full 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 available Software = UI & Presentation & Business Rules
Stand Alone Stand-alone Architecture Benefits Issues Full 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 users machine Software = UI & Presentation & Business Rules and Data Base
Good work, but I think we might need just a little more detail right here. OPERATING SUCCESSFUL EHDI PROGRAMS Then a miracle occurs out Start