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ABSTRACT INFORMATION
Title: 'Reimagining National Infant Hearing Tracking and Surveillance through Individual Data Reporting – A Pilot Study' Track: 5-Follow-up, Tracking, and Data Management Keyword(s): Data, Standardization, Quality Improvement, Assessment Learning Objectives: 1) Describe the benefits of de-identified, child-centric data over aggregate data in redesigning the national surveillance system for infant hearing loss. 2) Understand the benefits and challenges to states in creating a standardized data set to improve the quality and efficiency of healthcare services for children. 3) Describe implementation strategies for data sharing that protect privacy and ensure secure transmission. Abstract: The ability to document and assess progress through accurate data is essential for the delivery of high quality public health services. As part of public health’s commitment to children, Early Hearing Detection and Intervention (EHDI) Programs at the local, state, and federal levels need to be able to collect, analyze, and report data in an efficient and standardized way. Currently, each jurisdictional EHDI program has its own way of collecting, analyzing, and reporting, which has contributed to wide variation in the content and format of data. While the collection of aggregate data by the CDC has enabled generation of estimates about progress towards identifying infants with hearing loss, there are several limitations with this data. These include variations in the data that is reported and an inability to answer specific questions, including what factors are associated with over 40% of infants not receiving follow-up services. To address these limitations, the CDC engaged Indiana, Iowa, and other states in a project to reimagine national newborn hearing surveillance through individualized data reporting. Under this project, the CDC collaborated with the participating states to define and obtain limited data sets on infant hearing loss. These sets exclude direct identifiers but include information about the receipt of services and demographic data available from various public health sources. During this presentation, information about the implementation, benefits, and challenges of this project will be discussed from the perspective of both CDC and the collaborating states. This will include states discussing the methods adopted to improve data quality. In addition, information will be shared about how these efforts can assist programs in enhancing their infrastructure to support and benefit from electronic health records, health information exchanges and other initiatives. These findings should assist EHDI programs in identifying ways to advance the collection, analysis, and reporting of data. Presentation: This presentation has not yet been uploaded or the speaker has opted not to make the presentation available online. Handouts: Handout is not Available
SPEAKER INFORMATION
PRESENTER(S): Gayla Hutsell Guignard - Indiana State Dept. of Health      Credentials: MA, CCC-A/SLP, LSLS Cert AVT      Other Affiliations: NCHAM       Gayla Hutsell Guignard, M.A., CCC-A/SLP, LSLS Cert AVT is the Program Director for the Indiana Early Hearing Detection and Intervention (EHDI) program. Prior to coming to the EHDI program, Gayla was employed with the Alexander Graham Bell Association for the Deaf and Hard of Hearing. Gayla also spent several years of her career at the University of Tennessee Audiology and Speech-Language Pathology as a Clinical Supervisor in the Child Hearing Services section. In addition to her work with the Indiana EHDI program, Gayla has recently acted as a consultant to the Indiana Office of Management and Budget in its charge by the Indiana General Assembly to develop a transition plan that will establish the new Center for Deaf and Hard of Hearing Education in July, 2013. Gayla is also consultant with the National Center on Hearing Assessment and Management’s (NCHAM) EHDI Network. Tammy O'Hollearn - Iowa Department of Public Health      Credentials: LBSW       Tammy O’Hollearn, LBSW serves as the state coordinator for Iowa’s Early Hearing Detection and Intervention program and program director for the CDC EHDI grant. She has been in this role for the last seven and a half years. Ms. O’Hollearn oversees all grant activities including: infrastructure building; training and use of the EHDI web based data system (eSCREENER Plus), developing partnerships with early intervention, medical home and audiological service providers; program evaluation and analysis. Prior to 2006, she was involved with early intervention programming, contract management and program development within the Iowa Department of Public Health. Marcus Gaffney - CDC      Credentials: MPH       Marcus Gaffney is a Health Scientist and serves as the lead for the CDC EHDI Team. He has over 14 years’ experience working in the area of newborn hearing screening and is responsible for overseeing a range of activities, including supporting the development of jurisdictional EHDI Information Systems, assessing progress towards national goals, providing technical assistance, and supporting research efforts. He holds a Masters of Public Health from Mercer University.   AUTHOR(S): Eric Cahill - CDC      Credentials: M.S.       BIO: Eric Cahill, MS has been with the CDC EHDI Team since 2009. As a Health Scientist, Eric provides technical assistance to state EHDI programs and investigates public health related issues for the team. Before coming to CDC, Eric served in the EHDI program for the state of Kentucky. He originally trained as a clinical audiologist and has worked at Temple University Hospital, Temple University Children’s Medical Center and Children’s Hospital Boston. Xidong Deng - CDC      Credentials: PhD       BIO: Dr. Xidong Deng is a Health Scientist with the CDC EHDI Team. She holds a PhD. in Computer Science and Engineering from Pennsylvania State University. Dr. Deng’s work with the EHDI team includes helping to develop national EHDI data systems, identifying strategies for integration of EHDI systems with electronic health records and state based systems, evaluation of state based EHDI systems, and the identification of privacy and security solutions for information exchange between state public health registries. Her current interests are in ontology, controlled vocabulary and data standards, EHR and PHR systems, and evaluation of health information systems. Tammy O'Hollearn - Iowa Department of Public Health      Credentials: LBSW       BIO: Tammy O’Hollearn, LBSW serves as the state coordinator for Iowa’s Early Hearing Detection and Intervention program and program director for the CDC EHDI grant. She has been in this role for the last seven and a half years. Ms. O’Hollearn oversees all grant activities including: infrastructure building; training and use of the EHDI web based data system (eSCREENER Plus), developing partnerships with early intervention, medical home and audiological service providers; program evaluation and analysis. Prior to 2006, she was involved with early intervention programming, contract management and program development within the Iowa Department of Public Health. Stephanie Henry - CDC      Credentials: AS       BIO: Stephanie Henry is a Public Health Analyst with the CDC EHDI Team. Quansheng Song - University of Maine      Credentials: MS       BIO: Quansheng Song is a Database Administrator with the University of Maine. Gayla Hutsell Guignard - Indiana State Dept. of Health      Credentials: MA, CCC-A/SLP, LSLS Cert AVT      Other Affiliations: NCHAM       BIO: Gayla Hutsell Guignard, M.A., CCC-A/SLP, LSLS Cert AVT is the Program Director for the Indiana Early Hearing Detection and Intervention (EHDI) program. Prior to coming to the EHDI program, Gayla was employed with the Alexander Graham Bell Association for the Deaf and Hard of Hearing. Gayla also spent several years of her career at the University of Tennessee Audiology and Speech-Language Pathology as a Clinical Supervisor in the Child Hearing Services section. In addition to her work with the Indiana EHDI program, Gayla has recently acted as a consultant to the Indiana Office of Management and Budget in its charge by the Indiana General Assembly to develop a transition plan that will establish the new Center for Deaf and Hard of Hearing Education in July, 2013. Gayla is also consultant with the National Center on Hearing Assessment and Management’s (NCHAM) EHDI Network. Marcus Gaffney - CDC      Credentials: MPH       BIO: Marcus Gaffney is a Health Scientist and serves as the lead for the CDC EHDI Team. He has over 14 years’ experience working in the area of newborn hearing screening and is responsible for overseeing a range of activities, including supporting the development of jurisdictional EHDI Information Systems, assessing progress towards national goals, providing technical assistance, and supporting research efforts. He holds a Masters of Public Health from Mercer University.