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State Grants > CDC 2001 > New Hampshire |
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Centers for Disease Control and Prevention's EHDI Grants (2001): GRANT ABSTRACT Grant Program Title: Cooperative Agreement for Early Hearing Detection and Intervention (EHDI) Tracking, Research, and Integration Project Summary: This application is for Level 1 funding. The overall purpose of this project is to develop, under the leadership of the New Hampshire Department of Health and Human Services, Office of Community and Public Health, Bureau of Maternal and Child Health (NHDHHS, OCPH, BMCH) a high quality, efficient, sustainable and centralized Early Hearing Detection and Intervention (EHDI) tracking and surveillance system to monitor infants through the three program components, screening, detection and intervention.While the primary purpose of the project is the development of a hearing tracking system, project staff is cognizant of the need to consider other child related data systems, which may be integrated with such a system. The Title V Maternal and Child Health Director will supervise the project. The BMCH houses the UNHSP, and other projects which may be considered for the purposes of data integration including, the Newborn Metabolic Screening Program, the Neural Tube Surveillance Project and the Preschool Vision and Hearing Screening Project. The primary person responsible to carry out the project is the Information Services Specialist in collaboration with the UNHSP Project Coordinator, Consulting Audiologist, a Systems Development Specialist with the Bureau of Vital Records and the Project Advisory Committee, which includes parents and professionals.The first major project activity is to select a software solution from a number of commercial and non-commercial PC and internet based systems capable of tracking infants who have been screened for hearing loss. Once selected the software will be pilot tested and then launched statewide following training of all system users including hospitals, diagnostic centers, physicians, and intervention service providers. The tracking system will be known as the EHDI-IMS, Early Hearing and Detection and Intervention -Information Management System.The project will work with the Bureau of Vital Records to integrate with the electronic birth certificate to assure that all children born in the state are screened for hearing loss. Plans for linking with other data systems such as the Newborn Metabolic Screening Program and Part C will be explored and pursued as feasible.The project staff will utilize the EHDI-IMS as the tool to support the UNHSP quality assurance activities. The EHDI-IMS will monitor individual screening program and statewide performance on measures such as: infants born in New Hampshire but not screened, false positive rates, referral rates, incidence of hearing loss, and follow-up evaluation and intervention. Periodic and annual program reports will be produced and disseminated. |
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GRANT NARRATIVE Project Purpose: The overall purpose of this project is to develop, under the leadership of the New Hampshire Department of Health and Human Services, Office of Community and Public Health, Bureau of Maternal and Child Health (NHDHHS, OCPH, BMCH) a high quality, efficient, sustainable and centralized Early Hearing Detection and Intervention (EHDI) tracking and surveillance system to monitor infants through the three program components, screening, detection and intervention. This tracking and surveillance system is critical to the optimal functioning of the New Hampshire Universal Hearing Screening Program (UNHSP). When fully operational, it will enable the UNHSP to monitor the hearing screening status of all New Hampshire born infants, to monitor all children with positive screenings through diagnosis and intervention and will serve as a quality assurance tool by examining data such as false positive rates screenings at the hospital level. While the primary purpose of the project is the development of a hearing tracking system, project staff is cognizant of the need to consider other child related data systems, which may be integrated with such a system. 1. Understanding the Problem and Current Status The Problem: The literature is clear and compelling relative to the social and educational benefits of universal early hearing screening and subsequent intervention. Such programs have, however been criticized due to high false positive rates and excessive costs. These criticisms have been aptly refuted in the literature when programs are well run and recommended protocols are followed. However, in order to assure attain low false positive rates and subsequently avert excessive costs we must know where they are occurring. To reap the benefits of early detection by assuring timely referrals and interventions we need to have a system to monitor infants who have been screened. As more infants are screened in New Hampshire, the need for a tracking system is increasingly critical. Current Status: The New Hampshire Department of Health and Human Services, Office of Community and Public Health, Bureau of Maternal and Child Health was awarded funds to establish the UNHSP from the HRSA, MCHB in March of 2000. Under the Title V Director, Joan H. Ascheim, MSN, a project core staff has been assembled consisting of Project Coordinator, Ruth Fox, RN, MS, a consulting audiologist, Mary Jane Sullivan, MA, CCC-A and a consulting information services specialist John A. Bernard (see resumes Appendix A). The program aims to establish a high quality, family-centered, universal newborn hearing screening program through objectives organized into four major areas: screening; tracking and follow-up; identification and intervention; and professional and public education. Activities to date have focused on developing hospital screening protocols, developing parent education materials and site visits to birthing facilities in New Hampshire to determine the status of screening and tracking activities and to provide technical assistance in choosing screening equipment and establishing program guidelines. Currently, eleven of New Hampshire's 24 birthing hospitals are screening newborns for hearing. Three have been screening for four years or more, with one of those screening only infants in the neonatal intensive care unit. It is estimated that approximately 60% of the 14,500 infants born annually in New Hampshire are currently being screened by these eleven hospitals. This estimate is based on the percent of infants the eleven hospitals report they are screening and the number of births occurring at those hospitals. The number of hospitals screening in the state has doubled since this project began with several more in the planning stages. Based on incidence rates cited in the literature, it is estimated that between 30-40 hearing impaired infants are born annually in New Hampshire. Lacking a central data system, it is unclear exactly how many infants are being screened, how many hearing-impaired infants are being diagnosed, how many false positives are occurring, what kind of follow-up is taking place and how many infants are lost to follow-up. However, observations made by project staff during visits to hospital-based newborn screening programs reveal that false positive rates and the number of unnecessary repeat screenings appear to be unacceptably high and that most hospitals have no system for tracking screening or follow-up. These observations point out the need for staff training, use of recommended protocols and a data tracking system to monitor improvement. Only one hospital is using a purchased EHDI Information Management System. The others are either not collecting data or have developed internal data collection systems using generally available software packages like Microsoft Access or Excel. Because all hospitals are aware that the State of New Hampshire is planning to implement a statewide EHDI-IMS, they are waiting for some direction before making any further investment in an IMS. Current Status of EHDI Tracking System: While there is no current EHDI tracking system in place the consulting information services specialist has been visiting birthing facilities in the state and communicating extensively with other states that have or are implementing tracking systems. The program is very close to moving from an information gathering to an implementation phase for the tracking component. Funds from this grant would enable the project to swiftly move to the implementation phase once a software solution is decided upon. Funds would be primarily used to purchase an existing system or to pay for the development of one, training, increased hours for the information specialist and for a staff member in the Bureau of Vital Records to assist with linkages to the birth certificate. The information gathered to date on existing tracking systems and some of the challenges are presented. This system will subsequently be referred to as the EHDI information management system or EHDI-IMS. Challenges: In order to achieve the goal of improving services to infants and their families, it is important that the EHDI-IMS be able to accept data from all service providers. These include hospitals, physicians, public health agencies, diagnostic centers and public and private education agencies. The EHDI-IMS must be able to provide accurate and timely information regarding outcomes for each infant screened and ensure that each infant is connected to the services he or she needs. The EHDI-IMS must also be capable of aggregating infant data from multiple service providers. This information will provide the basis for evaluating the effectiveness of the UNHSP program in meeting goals such as universal screening, prompt evaluation and early and effective intervention. Tracking families through the screening process will permit quantification of the number of infants requiring and receiving services, and document the types of services required and administered during specific periods. Tracking improves the ability to identify infants who have not had proper follow-up at any point in the EHDI process. In order for an EHDI-IMS to be completely effective, it must satisfy the needs of the local service providers, the statewide program and federal reporting requirements. If the system does not satisfy the needs of all these organizational levels, it could trigger a duplication of effort as alternative solutions are implemented alongside the EHDI-IMS. This could jeopardize the timeliness and/or accuracy of the data in the EHDI-IMS and, in the end, its effectiveness. It is critical for the state to consider the EHDI-IMS needs at all levels before choosing and implementing a solution. Paramount to any client data system is the need protect patient confidentiality. Data security must be addressed throughout the implementation of the system. Information Gathered Electronic Birth Certificate The electronic birth certificate file contains the only complete record of the population to be screened for hearing. For this reason, it is imperative that any EHDI-IMS solution be able to link with the electronic birth record to identify infants who have not been screened. Preliminary discussions have occurred with the Bureau of Vital Records and the Office of Information Systems to identify data elements that could be used to link the EHDI-IMS with the birth record. Cross-coding of the two systems is necessary to establish a solid link and a tentative strategy for accomplishing that has been identified. Existing Commercial Software Packages The following three commercial software packages have been identified and are being analyzed as potential EHDI-IMS solutions for New Hampshire:
Non-Commercial Solutions The following non-commercial options have been identified and are being analyzed as potential EHDI-IMS solutions for New Hampshire:
The Bureau of Maternal & Child Health is currently applying for funds through the Health Resources and Services Administration, Maternal and Child Health Bureau (HRSA, MCHB) State Systems Development Initiative to explore the feasibility of linking the Newborn Metabolic Screening Program with birth certificate files. The Newborn Metabolic Screening Program resides within the Bureau of Maternal & Child Health as does the UNHSP and the same staff will be overseeing these two data related projects. Thus every effort will be made to integrate the two systems. Further options to move toward larger integrated data systems such as the Rhode Island KIDSNET system will be considered throughout the project development. Diagnostic and Intervention Services for Children with Hearing Loss Diagnostic Services - Currently Dartmouth-Hitchcock Medical Center is the only comprehensive diagnostic facility providing diagnostic audiology services for the infant population (OAE, ABR, behavioral and middle ear function tests). The University of New Hampshire is planning to provide this service by 2002 and possibly sooner dependent upon funding. Many New Hampshire families travel to Children's Hospital or Mass Eye and Ear in Boston for diagnostic services. It is the goal of the UNHSP and the University of New Hampshire to establish four 4 diagnostic follow-up centers for infants who are referred or are identified as at risk for progressive hearing loss. Intervention Services - The Multi-sensory Intervention Through Consultation and Education (MICE) Program is the educational support service for children birth to 3 identified with vision and/or hearing impairment. Families of children with hearing loss (birth to 3) are first seen at the local Early Support and Services Program (Part C) where the child and family develop an Individualized Family Services Plan for all services needed. A referral is then made to the MICE Program. 2. Goals And ObjectivesProject Goal: The goal of this project is to develop a high quality, efficient, sustainable and centralized Early Hearing Detection and Intervention (EHDI) tracking and surveillance system to monitor infants through the three program components, screening, detection and intervention. Linkages with other child related data systems will be considered throughout the development of this system. Project Objectives
The information management system, when fully functioning, will generate periodic and annual reports on outcome data such as, numbers and percentages of infants screened, rescreened, missed or lost to follow-up, referred for further audiological assessment and found to have confirmed hearing loss. These reports will provide descriptive information about the program as well as serve as the basis for the quality assurance and evaluation of the statewide program. The information services specialist will integrate all the systems necessary to gather the outcome data referred to above. The information services specialist will also gather the hospital screening information, follow-up information from primary care providers, diagnostic data from audiologists and intervention data from early intervention providers.By January 2003, the EHDI-IMS will have at least one year of data from the participating hospitals. The information services specialist will analyze all available data and trends and report on program activity and successes or limitations in meeting the screening and follow-up objectives. The report will be presented to the project advisory committee and program modifications will be made as necessary. 3. Description of Program and MethodologyEstablishing and Implementing and EHDI Tracking and Surveillance System: the information system specialist will carry out the establishment and implementation of the EHDI-IMS once the appropriate solution is determined in collaboration with the project staff, advisory committee, and end users. If a PC solution is selected, licenses and software will be purchased and distributed to screening hospitals, diagnostic centers and intervention services. Data will be entered, downloaded and submitted electronically or by disk. If a web based solution is chosen, licenses will be purchased and users will be instructed in how to access the program. Data submission will be automatic once entered. Pilot testing of the system will be run in two hospitals and intervention service provider offices and the one diagnostic center. Following successful piloting all screening hospitals, intervention service providers and the diagnostic center staff will be trained and the system will be launched. Technical assistance will be available from the information system specialist. No matter what EHDI-IMS solution is selected, data security and patient confidentiality will be a primary consideration. At no time will either be compromised. If a PC based solution is purchased, the transmission of data to the state data repository will be a function that will be scrutinized for potential security issues. The State of New Hampshire Vital Records Bureau is currently transmitting vital records information in this manner and their experience in this area will be invaluable. If an Internet based solution is selected, the security and privacy of patient information can be protected if the vendor's product meets the United States Health Care Financing (HCFA) requirements for sending health care data on the Internet. Patient confidentiality will be further protected by user identification and password requirements for access to the patient databases. In addition, patient records from one hospital or test center will not be generally accessible from any other physical location. Populating the Data Base: Population of the database will occur at three different levels: Level I Screening and Referral Information Initiation of the file on an infant will generally occur at the hospital. Data will be entered by the screener, nurse, or program coordinator and will include at a minimum the following data elements:
Staff at diagnostic centers will have access to the system only for children referred to them for audiological evaluation. They will be adding data to an already existing patient file including:
Level III - Intervention Services Intervention services in New Hampshire are provided by Early Supports and Services and the MICE program, serving children under age three with sensory impairment. Staff of these programs will also have access only to the files of children referred to them. They will be entering data relative to:
Standardizing Data from Multiple Data Sources: To assure consistency in the interpretation and understanding of the data elements across hospital sites, intervention sites and the diagnostic center, there must be procedures in place to standardize the data. Project staff will work with the selected vendor or will develop their own procedure manual for the data system that will clearly define each data element. The procedure manual will be reviewed in detail during training. Additionally, crosschecks will be built into the system that will only allow entries within a defined range for key elements. Methods for Collecting Data on Infants/Children with Late Onset or Progressive Hearing Loss Children with particular risk factors (such as family history of hearing impairment, concerns regarding speech or language, in utero and postnatal infections, exposure to ototoxic medications, various syndromes, hyperbilirubinemia, and recurrent and persistent otitis media with effusion) may pass initial screenings but are at risk for late onset or progressive hearing loss. These factors will be defined in the procedure manual and populated at Level I in the hospital or by the child's physician. If the child is not screened in the hospital, the program staff will need to obtain this information from the child's health care provider. These children will be identified through linkages with the birth certificate file. The system will be designed such that queries can be run on all children with risk factors by age so that their health care providers can be reminded to screen the children every six months until 3 years of age. It will be the responsibility of the program staff to track these children. Toxoplasmosis, an in utero infection is one of the screenings included in New Hampshire's metabolic screening panel. Linking the Newborn Metabolic Screening Program and the Newborn Hearing Screening Program would provide an additional crosscheck to be sure children who tested positive for Toxoplasmosis are screened for late onset hearing loss. Developing Strategies for Reporting Systems and Designing an Analytic Plan The project information services specialist will work with the project staff and advisory committee and the selected vendor (if pertinent) to define standard reporting systems to assure that no child is lost to follow-up. Such systems are in place for the Newborn Metabolic Screening Program. For example, periodic reports are run on those children who required a follow-up screening because the blood sample was taken too early. Additionally, reports are run on infants who tested positive for any of the six screenings of the panel to enable the project coordinator to determine if the child received appropriate follow-up from the primary care provider. For this program the timing and types of periodic reports to be run will be determined. Examples of reports to be generated include but are not limited to:
Reports such as this will be reviewed periodically and routinely by the project coordinator to assure minimal loss to follow-up and that children are receiving the services they require. The systems information specialist will develop and implement a detailed analytic plan to obtain program outcome data. Data will be reported for the state as a whole and by hospital, diagnostic center, and intervention service. Outcome data will be monitored over time to analyze trends such as false positive rates, which we would anticipate decreasing over time as programs become more proficient in screening. Comparisons on screening performance will be made between screening hospitals and the state as a whole. Such analyses will enable program staff to determine hospitals in need of technical assistance. Outcomes to be monitored include:
Findings from these reports can be utilized to make program modifications. Documenting Concerns of Parents and Professionals on the EHDI-IMS Process The UNHSP is fortunate to have on its advisory committee parents of hearing impaired children who are highly committed to the program. It is also fortuitous that one of the parents is a computer professional and can provide a unique perspective of a parent and an understanding of the need for a data tracking system. Parental feedback will be sought throughout the development and implementation of the EHDI-IMS system. The concerns of professionals that will be end users of the system will be solicited through the advisory committee and during the pilot testing phase of the system. Necessary modifications or safeguards will be implemented based on parental and professional feedback. Funds are included in the budget for system modification should an existing commercial product be used for this system. Plans for Integrating EHDI-IMS with Other Newborn Screening Systems Without having selected the particular software to be used for the EHDI-IMS system it is difficult to specify exactly how integration with other systems will take place. As previously stated, establishing linkages with the electronic birth certificate is a priority and funds have been set aside for a Systems Development Specialist in the Bureau of Vital Records to work with the project information specialist to accomplish this task. Funds have also been identified for system linkage programming for years 2, 3 and 4. This may be needed for linkage software or to pay a systems specialist to create such linkages. This will be clearer by the end of the first year. Other initiatives within the Bureau of Maternal and Child Health, such as the neural tube defects surveillance system and the SSDI federal Maternal and Child Health Bureau initiative which will aim to link the Newborn Metabolic Screening Program and the birth certificate may lend themselves to integration with the EHDI-IMS. Certainly, the latter project will be developed with system integration as a priority. Integration with other programs such as Part C is a second order priority at this time, as it will require more research. Part C staff is represented on the project advisory committee and will be well informed throughout the development and implementation of the EHDI-IMS system. 4. Collaboration Efforts Collaboration with Multiple Service Providers Collaboration of the service providers (hospitals, diagnostic centers, physicians, intervention programs) is critical in a successful EHDI-IMS program. During visits to hospitals, it appears that most are willing to collaborate with the state for data collection and are looking to the state to provide the system. Letters of support are included from the hospitals, the one diagnostic center, and intervention service providers in Appendix D. It is our intent to work collaboratively with all who will be providing data, to provide training and technical assistance and to incur the majority of costs associated with the system such as software licenses. Potential collaboration efforts with new or existing data systems Such collaboration has been discussed previously in several sections. A letter from the State Registrar stating his intent to collaborate with the project relative to birth certificate linkage is enclosed. Communication with other states The State of New Hampshire has benefited greatly from the experiences of other states and outside organizations during initial efforts to explore the establishment of a statewide EHDI -IMS system. Direct communications have been established with the State of Rhode Island regarding their KIDSNET program, the State of Connecticut regarding their statewide EHDI program, the University of Massachusetts regarding their metabolic screening program, the State of Massachusetts regarding their MASSCHIP program, the State of Massachusetts via the Hospital Association regarding their statewide EHDI program, and the States of Virginia, Colorado, Texas and Utah regarding their statewide EHDI programs. We would fully collaborate with any other state to assist them in their efforts to develop an EHDI. In addition, we would also collaborate with other CDC grant funded states in order to allow anonymized pooled data sets of standardized data as specified in the grant documentation. A timeline with activities and personnel responsible can be found in Appendix B. 5. Evaluation Plan The timeline and activities for the EHDI-IMS project support the goals and objectives of the larger Universal Newborn Hearing Screening Program. As such, the evaluation of EHDI-IMS implementation efforts will be under review by the EHDI-IMS program director and the EHDI-IMS advisory committee. The degree of success of the EHDI-IMS program will be judged on the success of the entire UNHSP, as it is an integral part of that program. The following goals have been established for the UNHSP:
6. Staffing And Management System Staff and the Project Advisory Committee The Bureau of Maternal & Child Health under the director of its chief, Joan H. Ascheim, will supervise the project. Placement of the project in the Bureau of Maternal and Child Health will facilitate integration with other related data systems as the Bureau oversees the Newborn Metabolic Screening Program, and the neural tube surveillance system, The UNHSP staff time devoted to the project will be as follows: Project Coordinator, Ruth Fox, RN, MS -.30 FTE (paid from the UNHSP grant) As the project coordinator, and primary user of the centralized system, Ms. Fox's participation will be critical. She will be involved in training and a liaison to the multiple sites using the system. Ms. Fox currently assists in the coordination of the Universal Metabolic Screening Program. She is experienced in generating program reports and utilizing them to monitor the screening and outcome status of newborns screened for metabolic disorders. This experience will be valuable as the EHDI-IMS system is developed, tested and implemented. She will assist in the quality assurance plan development and monitoring and making recommendations based on reports generated by the EHDI-IMS. Consulting Audiologist, Mary Jane Sullivan, MS CCC-A - .15 FTE (paid from the UNHSP grant) Ms. Sullivan will be a key link with the diagnostic center and the intervention programs. Ms. Sullivan will also assist in the quality assurance plan development and monitoring and making recommendations based on reports generated by the EHDI-IMS. Information Services Specialist - John A. Bernard - .20 FTE (70% UNHSP grant, 30% this grant) The consulting Information Services Specialist that has been hired to manage the EHDI program has an extensive background in project management. He has been employed in the technology field since 1977 and has been an Information Systems Manager for seventeen of those years with two different organizations. He has experience with database design, systems analysis and design, networking, communications and programming. His experience in working with people at all levels of an organization will be invaluable as the EHDI project matures and moves out into the service locations. Systems Development Specialist - .25 FTE this grant - to be hired (see Appendix C for a job description) Senior Health Policy Analyst - Ann Bracken, MD, MS .10 FTE (paid through SSDI grant, see Appendix A for her resume) Dr. Bracken is a pediatrician and PhD candidate at the Center for Evaluative Clinical Sciences at Dartmouth Medical School. As a Senior Health Policy Analyst with the Bureau of Maternal & Child Health, Dr. Bracken will assist in data analysis of the program reports generated. She also will be working on the Newborn Metabolic Screening Linkages project and will provide consultation to this project. 7.Organizational Structure And Facilities As previously stated the Bureau of Maternal and Child health administers a number of programs through which it has gained experience in surveillance and monitoring children to determine if they have received the services they need. Further these programs may lend themselves to integration with the EHDI-IMS system. These include: the neural tube defect surveillance system, the Newborn Metabolic Screening Program and the Preschool Hearing and Vision Program which screens and provides follow-up for preschoolers relative to hearing and vision. Thus the BMCH has experience in screening, tracking and case management for preschool children identified as having hearing loss. The Office of Community and Public Health also houses the Bureau of Vital Records, which oversees the electronic birth certificate, known as Vital Records Vision 2000. The role of this partner has been described relative to linking with the electronic birth certificate. Pertinent organization charts can be found in Appendix F. There is adequate office space and equipment in the Bureau for the project staff. Should the project proceed with a web-based solution to the EDHI-IMS system, the existing Internet and server has the capacity to support this project. 8.Human Subject Review - Not Applicable 9.Budget - Attached |
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