摘要：The Health Resources and Services Administration and All Kids Count (a national technical assistance center fostering development of integrated child health information systems) have been working together to foster development of integrated child health information systems. Activities have included: identification of key elements for successful integration of systems; development of principles and core functions for the systems; a survey of state and local integration efforts; and a conference to develop a common vision for child health information systems to meet medical care and public health needs. We provide 1 state (Utah) as an example that is well on the way to development of integrated child health information systems. BEGINNING AT BIRTH, INFANTS and young children undergo an array of preventive and other clinical services designed to give them an optimal start on a healthy life. Within the first 24 to 48 hours of life, each infant receives a dose of hepatitis B vaccine, undergoes newborn dried blood spot screening for heritable disorders, undergoes early hearing detection and intervention screening to detect congenital hearing loss, and has a birth certificate established. In addition, the infant may be registered with the Social Security Administration, evaluated for eligibility in Medicaid or the Women, Infants, and Children (WIC) programs, and registered in a birth defects surveillance system (if appropriate). Typically, a record of the performance of each of these services (and the subsequent results) is entered into a separate, single-purpose information system, and health care providers must go to each of these systems to get a comprehensive picture of the child’s status. Undoubtedly, children’s health and health care can be improved through the timely delivery of complete and accurate information. Unfortunately, too often, information available to the provider is not timely and is incomplete or fragmented. For example, newborn screening data reported to the National Newborn Screening and Genetics Resource Center 1 indicate that, in 2000, there were 3009 newborns with positive screening results for hyperphenylalaninemia in the 50 states, District of Columbia, Puerto Rico, and the Virgin Islands. Of these, 112 were lost to follow-up. Of the 2897 who were followed up, 274 were found to have classical phenylketonuria (PKU) or a clinically significant variant. Thus, approximately 1 significant diagnosis was made for every 11 newborns with positive screen results for PKU who were followed up. If that same rate held true for the 112 newborns who screened positive for PKU and were not followed up, 10 cases might have been missed. The information available to state health officials and clinicians is insufficient for us to know with certainty that these infants were never followed up nor diagnosed. A comparable calculation on data reported for congenital hypothyroidism indicates that, potentially, 52 cases might have been missed in 2000. Of the 1086 cases with known intervals between birth and initiation of therapy, 40% received therapy more than 14 days after birth, a suboptimal interval. In addition, a survey of primary care pediatricians by Desposito et al. found that fewer than half received notification of positive newborn screening results within 2 weeks, and 4.5% never received them. Perhaps even more disconcerting, 26% of primary care pediatricians never received negative screening results. 2 Thus, no news may be interpreted as good news, but one cannot be sure. Lack of timely and complete information has led both to missed opportunities to immunize some children and overimmunization of others. 3 Use of registries has been demonstrated to increase immunization levels and to increase timeliness of administration of vaccines. 4 Registries have also been shown to be save costs. 5 , 6 To prevent health problems and health care problems arising as a result of a lack of timely, accurate, and complete information and to reinforce the importance of a medical home (primary health care that is accessible, family centered, coordinated, comprehensive, continuous, compassionate, and culturally effective) for children that contains all information about the child, 7 the Health Resources and Services Administration (HRSA) and All Kids Count (AKC) have worked over the past several years to improve and integrate child health information systems. First, since 1999, the Genetic Services Branch of the Division of Services for Children with Special Health Needs in the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA/MCHB) has been supporting efforts to develop a child health profile that would capture accurate information from a variety of programs in a timely manner, support decision-making at the point of services, and support public health program needs. Bringing together information from a variety of sources into an integrated information system should facilitate assessment and prompt provision of appropriate services. Making comprehensive information readily available to authorized users will also facilitate entry into a community-based system of services for all children and their families, with the medical home at the center. 8 To date, 25 state public health programs have received funding through HRSA/MCHB Title V Special Projects of Regional and National Significance (SPRANS) grant support to improve the coordination and integration of newborn screening and genetic service systems with other maternal and child health systems. HRSA/MCHB has also supported the development of the key elements, principles, and core functions for child health integrated information systems. Second, from 1992 to 2000, The Robert Wood Johnson Foundation (RWJF) provided support to AKC (now a part of the Public Health Informatics Institute, also supported by RWJF) to stimulate development of immunization registries in the United States. As registries became more functional, the focus of All Kids Count shifted (2000–2004) to fostering the development of integrated child health information systems. 9 AKC’s goal was to work with stakeholders (families, health care providers, public health programs) to develop a vision and action agenda for child health information systems that meet medical care and public health needs and to develop resources and tools that assist public health agencies in developing information systems that help ensure timely delivery of child health services and follow-up. Since 2001, HRSA/MCHB and AKC have coordinated their efforts, and HRSA/MCHB has provided additional financial support to AKC. The efforts have initially focused on integrating information systems dealing with vital registration, newborn dried blood spot screening, early hearing detection and intervention, and immunization. These 4 program areas were chosen because they share several important characteristics: they are recommended for all infants and children; they are carried out or begin in the newborn period; they are time sensitive—delay can lead to unfavorable outcomes; they are primarily delivered in the private sector but have a strong public sector component; and they are mandated in most if not all states. AKC proposed a systematic approach to development of integrated child health information systems that includes first defining the business case (or value proposition) for how information systems can improve child health outcomes and developing a shared vision among stakeholders and plan of action on how to move forward in a collaborative way. Next, an analysis of functional, business, and workflow processes will enable requirements to be developed that meet the needs of the users whether they are clinicians, public health agencies, health plans, or consumers. Additionally, a comprehensive evaluation plan that will provide data on costs, costs savings, and changes in quality of care and outcomes is necessary so that supporters of integrated systems will be able to demonstrate a return on their investment. Throughout the development process, a communication plan is essential to educate stakeholders on progress and to document and disseminate best practices. 10 Selected activities were undertaken by AKC and HRSA to implement a strategy for integrated child health information systems. Additionally, 1 state (Utah) provides an example of integration efforts. We present a brief summary of future activities.
