7
Conclusions and Recommendations

The health of children is a product of complex, dynamic processes produced by the interaction of external influences, such as children’s family, social, and physical environments, and their genes, biology, and behaviors. Because children are rapidly changing and developing in response to these interactions, the developmental process plays an important role in shaping and determining their health. Nonetheless, the routine approaches to defining and measuring health in many national, state, and local data collection and measurement efforts are adult-based and capture neither the developmental essence of nor the multiple influences on children’s health.

In the committee’s view, healthy development is both a component of children’s health and a manifestation of it. It is often the case that existing health measurement strategies and systems neither account for the developmental variability of children’s health nor include components specific to children. This leads to incomplete measurement of health characteristics, capacities, and influences and a diminished capacity to effectively characterize and adequately monitor the health of children.

Recent rapid increases in scientific information about the development of health, the role of prenatal and early childhood health on adult health outcomes, and the importance of predisease pathways that begin in childhood provide powerful evidence about what is likely to be learned from more detailed, systematic, and longitudinal efforts to measure the multidimensionality of children’s health. This growing body of empirical evidence also suggests that as more is understood about how different internal and external influences program the development of biopsychosocial pathways, more effective and appropriate prevention and intervention strategies can be designed, targeted, and implemented.



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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health 7 Conclusions and Recommendations The health of children is a product of complex, dynamic processes produced by the interaction of external influences, such as children’s family, social, and physical environments, and their genes, biology, and behaviors. Because children are rapidly changing and developing in response to these interactions, the developmental process plays an important role in shaping and determining their health. Nonetheless, the routine approaches to defining and measuring health in many national, state, and local data collection and measurement efforts are adult-based and capture neither the developmental essence of nor the multiple influences on children’s health. In the committee’s view, healthy development is both a component of children’s health and a manifestation of it. It is often the case that existing health measurement strategies and systems neither account for the developmental variability of children’s health nor include components specific to children. This leads to incomplete measurement of health characteristics, capacities, and influences and a diminished capacity to effectively characterize and adequately monitor the health of children. Recent rapid increases in scientific information about the development of health, the role of prenatal and early childhood health on adult health outcomes, and the importance of predisease pathways that begin in childhood provide powerful evidence about what is likely to be learned from more detailed, systematic, and longitudinal efforts to measure the multidimensionality of children’s health. This growing body of empirical evidence also suggests that as more is understood about how different internal and external influences program the development of biopsychosocial pathways, more effective and appropriate prevention and intervention strategies can be designed, targeted, and implemented.

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health As reiterated throughout this report, the committee contends that it is in the national interest to place a higher priority on children’s health. In the short term, this will result in children whose health and quality of life is improved and who are more ready and able to learn. Children have important value in their own right and are worthy of this type of societal commitment. It is also in the national interest to optimize children’s health for two reasons that have longer term implications. First, the continuing viability of society depends on a citizenry and a workforce that are properly equipped to be productive and committed to serving the nation. Second, failure to improve children’s health will have substantial long-term consequences for the health of the adult population, especially in terms of the incidence, timing of onset, and severity of chronic conditions. Events in early childhood can contribute to the physical and mental health morbidity that is often evident and only measurable later on. Thus, society has a choice between addressing that morbidity early in children’s lives or dealing with its future consequences. In the committee’s view, investing now is the better alternative for all the reasons above and because it is the right thing to do. DATA AND INFORMATION Important improvements in children’s health will require new data to inform policy and practice. Filling data gaps requires knowledge about the gaps that exist, understanding which gaps are important and how they can be filled, and appreciating what new research and methodologies must be developed to accomplish this. This report has provided a framework for national, state, and local policy makers to identify and fill data gaps and thus secure information needed for consistent, focused, responsive, and effective policy. The committee also assessed what is currently in place to measure children’s health at the national level, as well as approaches that facilitate use of data by states and localities. Over the past century, the United States has instituted important health monitoring and surveillance activities that increased the number of measures of personal and public health delivery systems and initiated important research strategies to better understand the influence of various factors on health outcomes. However, much of this new capacity has been created without adequate attention to the measurement and monitoring of children’s health and to the factors that influence it. Inadequate and incomplete measurement obscures the ability to identify important influences on and changes in children’s health, including influences that may adversely affect immediate and long-term health outcomes. The lack of information on children’s health and its influences can allow harmful exposures (e.g., environmental toxins, damaging social conditions) to go undetected, resulting in missed opportunities to improve prevention, health promotion, and treatment interventions. Building on what has already been achieved, the committee puts forward an

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health ambitious but attainable vision for the goals of a measurement system for children’s health that would need to develop and evolve over the next decade. Such a system would be able to: Measure and monitor important trends in children’s health and its influences. These measures would span the stages of childhood in order to capture appropriate developmental trajectories. They would also measure trends and influences within important subgroups defined by ethnicity, income, geographic region, and special needs. Provide a surveillance and early warning capacity for the detection of significant changes in health, the effect of changing influences on children’s health, and identify the need for specific services, interventions, policies, and more detailed evaluations of services and interventions. Improve understanding of the mechanisms of children’s development and guide evaluations of how changes in behavior, new health practices, and new policy interventions affect children’s health. Provide indicators of the performance of the personal medical care system, the community health service system, and the broader public health system and how they each operate and interact to influence children’s health. Such activities would not only measure the quality of services in the health care systems, but also encourage the integration and coordination of personal, community, and public health services. Achieving the envisioned comprehensive children’s health measurement system will take a gradual, concerted effort over many years. The remainder of this chapter outlines the committee’s conclusions and recommendations to begin to move the nation toward this ultimate goal, beginning with establishment of a new definition and framework for understanding children’s health and its influences and strengthened national leadership on children’s health measurement. We then outline several specific recommendations to address gaps in current children’s health measurement efforts and improve state and local use of existing data. We conclude by identifying specific research needs. A NEW DEFINITION AND FRAMEWORK Recommendation 1: Children’s health should be defined as the extent to which individual children or groups of children are able or enabled to (a) develop and realize their potential, (b) satisfy their needs, and (c) develop the capacities that allow them to interact successfully with their biological, physical, and social environments. The committee’s review of prevailing definitions of health produced few child-based definitions that could incorporate the growing consensus of health as

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health a developmental capacity of the individual child. Existing definitions do not capture the dynamic mechanisms that underlie children’s health. The report’s conceptual framework builds on the following principles: the rate and course of development are fundamental to children’s health; a broad range of biological, behavioral, and environmental factors affect children’s health; these influences have cumulative and interactive effects and become embedded in children’s developing biological pathways that further affect developing biological systems and predisease pathways, with both immediate and long-term consequences; the relative effect of different influences shifts across a child’s life span, which calls for attention to the timing of experiences and exposures in understanding children’s health, particularly in relation to critical and sensitive periods of development; and children’s health has a fundamental impact on the course of adult life. Recognizing that the measurement of health depends on its definition and the first principles about how different factors affect health, the committee sought to develop and adopt a definition of children’s health that was compelling and scientifically appropriate. We began with the definition of health that was adopted as part of the 1986 Ottawa Charter, because of its utility in guiding population health measurement efforts and because it not only encompasses diseases and functional deficits and disabilities, but also accounts for those positive attributes, capacities, and reserves that determine how well an individual or population is able to respond to the challenges that life presents. The committee modified the Ottawa definition in light of what research says about developmental processes that influence health, especially for children. The committee also proposes a set of principles that encompass the processes and pathways that result in different domains of children’s health, including health conditions, functioning, and health potential. In considering the growing literature on factors that affect health, the committee recognized that a comprehensive range of influences interact dynamically with each other. Therefore the committee sought to classify influences in a comprehensive way, encompassing biological, behavioral, and environmental factors. Environment is broadly defined to include community demography and organization, family process, physical environment, and culture. Furthermore, the committee sought to acknowledge the relationships and interactions among influences, as well as how the larger service environments and policies structure those influences. While much has been learned about children’s development and how specific factors affect it and are embedded in biopsychosocial pathways, increased understanding of how these pathways develop is critical, if cost-effective service and

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health policy interventions are to be developed, targeted, and implemented to improve the healthy development of all children. Many have recognized the importance of creating measurement mechanisms that do a better job of capturing these influences and closing the gap between understanding of the influences on health and actions that mediate and modify those influences, in order to improve children’s health. The committee began its work with the general model of the multiple determinants of health adopted by the Healthy People 2010 report. We moved from this generic model of the determinants of health to a more interactive and developmentally appropriate model that captures the interaction of multiple influences and acknowledges changes in the relative weight of those influences in relation to developmental stage. This common framework of children’s health should be adopted by the diverse group of federal, state, and local agencies with some purview over children’s health (e.g., delivery, assessment, assurance, and policy development functions). Each agency should be responsible for developing plans to address relevant health influences within its purview. A NATIONAL PRIORITY Recommendation 2: The secretary of the U.S. Department of Health and Human Services (HHS) should designate a specific HHS unit with a focus on children to address development, coordination, standardization, and validation of data across the multiple HHS data collection agencies, to support state-level use of data, and to facilitate coordination across federal agencies. The designated agency’s long-term mission should be to monitor each of the domains of children’s health (i.e., health conditions, functioning, and health potential) and its influences over time; develop the means to track children’s health and identify patterns (e.g., trajectories) in it over time, both for individual children and for populations and subpopulations of children; and understand the interaction and relative effects of multiple influences on children’s health over time. The responsible federal agency should (1) translate recommendations on domains, subdomains, and dimensions of children’s health and its influences into improved data collection strategies; (2) identify duplication and gaps in data collection and data display strategies and make data collection efforts more economical and standardized; (3) ensure that all data collection activities are accompanied by data validation; (4) ensure that as many data collection activities as possible are usable at the state and local levels and facilitate state- and local-level use of data; (5) ensure that thoroughly documented data are released on as timely

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health a basis as possible; (6) develop a process for assessing the potential effect of key policy changes on children’s health; and (7) facilitate continued research on children’s health and its influences. It is necessary for a single federal agency to take responsibility for the measurement of children’s health. The majority of relevant data is collected by HHS, the lead federal agency on health issues. The secretary of HHS should designate and empower a specific unit of HHS and a senior staff person to take steps to make measurement of children’s health, broadly defined, a national priority. Several agencies within HHS have children’s health or data collection within their purview, including the Maternal and Child Health Bureau (MCHB) in the Health Resources and Services Administration, the National Center for Health Statistics (NCHS) and other offices in the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), the Office of Disease Prevention and Health Promotion and the Office of the Assistant Secretary for Planning and Evaluation in the Office of the Secretary, the National Institute for Child Health and Human Development and other units in the National Institutes of Health, and the Administration for Children and Families. The committee has not identified a preferred agency but stresses the importance of the designated agency having monitoring and promotion of children’s health as a core component of its mandate and having an established leadership role on children’s health in the department and with state and local partners. The designated agency should be charged with better integration of the existing portfolio of health surveys so that the identified gaps, particularly related to measures of functioning and health potential, can be addressed in a strategic and systematic fashion. Strategies to integrate measures and to compare and contrast data from existing surveys should be developed. Steps are needed to improve the health measures in surveys that do not have a primary health focus, but for which current collection of information about health influences could be substantially augmented by adding a parsimonious set of health measures. Many other federal agencies also fund services or research that affect children’s health, including the departments of Agriculture, Education, Transportation, Housing and Urban Development, Commerce, Labor, and Justice as well as the Environmental Protection Agency. Many of them also collect data on children’s health or its influences. Coordination among these agencies is essential to minimize duplication, improve standardization of data, increase efficiency, and ensure that data collection focuses on the most important variables. The existing Interagency Forum for Child and Family Statistics, if extended beyond its current authorization expiration date of 2007, provides a possible mechanism for this coordination. A lead agency for the multiple relevant HHS agencies will help to facilitate this coordination. Coordination and measurement would also be advanced if the forum adopted a broad conceptualization of health that mandates development of new measures rather than relying solely on existing data. The committee’s definition and model of health have several important im-

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health plications, most notably how measures of health are conceptualized, operationally defined, developed, applied, and implemented. The committee’s analyses of indicators of population health clearly point to the importance not only of measuring diseases, impairments, and functioning, but also of accounting for those positive attributes and capacities that are important determinants of an individual’s or population’s ability to respond to different experiences, challenges, and exposures. Similarly the committee reviewed how both negative and positive influences on health develop, aggregate, and interact to produce different levels of vulnerability or bestow greater health capacity and resilience. The committee also concluded that, since prevention and health promotion should be key goals of the health care system, better specification of the relative effect of positive and negative influences, and their origin and timing, would provide important information for improved targeting of prevention and health promotion strategies to optimize the healthy development of all children. In considering the current status of children’s health measurement, the committee recognized the need to articulate a compelling vision for what a children’s health measurement system should include; how it would function at the federal, state, and local levels; how it could be used to monitor and assess trends and changes in health, health influences, and health disparities; and how it can serve the important national policy goals of optimizing the healthy development of all children and the adults they will become. Given these compelling policy goals, the measurement of children’s health should serve as a sensitive surveillance and early warning system for potential threats to children’s health and development, as well as provide information for evaluating policies, services, and interventions in the personal, community, and public health systems. To meet these needs, the measurement system should attempt to provide comparable measures of health and health influences across time and at federal, state, and local levels. In articulating the importance of a broad, developmentally responsive, multifunctional health measurement system, the committee specified that measures and measurement approaches should be capable of capturing changes in individual and population health trajectories and specifying the importance and time-sensitive effects and interactive influences of different factors on health development pathways. This means that measures of a health characteristic or influence must be consistent and appropriate across developmental stages, and that greater attempts should be made to collect longitudinal information with the greatest likelihood of yielding information about causal relationships and differential trajectories. The committee reviewed evidence demonstrating that multiple factors, including community demography and organization, family process, physical environment, culture, health services, and policy, make a difference to children’s health. The effects of these various factors are known to accumulate over time. It is also known that early childhood conditions matter for adult health. Less is

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health known about the relative power of these influences, their interaction over time, and their precise effect on health. IMPROVING CHILDREN’S HEALTH MEASUREMENT Recommendation 3: National surveys of health and health influences, such as the National Health Interview Survey, the National Health and Nutrition Examination Survey, the Early Childhood Longitudinal Studies, and the National Children’s Study initiative, should address gaps in what is now collected and reported to reflect a more comprehensive, developmentally oriented conceptualization of children’s health and its influences. Particular attention should be paid to adding data on functioning and health potential. Many surveys in the United States collect periodic health information about children, while many more irregularly collect at least some health-related information. The committee is encouraged that many such efforts are under way. At the same time, it is clear that a number of important gaps remain between the data collected and the committee’s definition and model of children’s health and its influences, including gaps related to the domains of health, developmental stages, the range of influences, and subpopulations. The lack of data on developmentally appropriate functioning and health potential, two of the three domains of health articulated in this report, is particularly notable. Adding measures that capture data on these domains to the most comprehensive of current surveys would be a significant step in moving toward a comprehensive approach to children’s health measurement and should be a priority for new data collections. Existing data on the domain of health conditions should be analyzed in such a way as to provide information that relates to person and populations rather than to individual diseases. There is a vital need for health survey designs that capture health in more detail during different stages of development. At a minimum, this involves distinguishing the special developmental issues of infants and toddlers (ages 0–3 years), preschool children (4–5), elementary school-age children (6–11), early adolescents (12–14), and older adolescents (15–17). Data on toddlerhood through adolescence are especially lacking. Understanding of the constellation of both social (e.g., family, peer, neighborhood) and physical (e.g., toxins, violence) environmental influences on children’s health has grown rapidly in recent years, as has research on valid and reliable methods for gathering data on many types of influences in surveys. Since environmental influences can affect health in developmentally specific and interactive ways, the committee sees great value in surveys that attempt to measure multiple environmental influences. Thus, surveys directed at understanding children’s health should be strategically constructed and organized to capture as

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health many influences as possible, with particular attention paid to measures that cut across domains and are consistent across developmental stages. Similarly, analysts should adopt methods that examine the interactions among various levels and types of influences. For example, comprehensive surveys could include data on family process and neighborhood characteristics, through systematic social observation and parent report, as well as biological markers of health status, and environmental samples. Individual groups defined by race, ethnicity, low socioeconomic status, or special needs (e.g., children with a chronic physical or mental health problem, those in foster care) constitute a relatively small share of the total population. Consequently, a survey drawing its sample of respondents from the general population will have small numbers of respondents in these groups. It is straightforward to oversample respondents from these subgroups so that sufficient numbers will be included in the surveys. The committee attaches substantial value to these efforts. Most instruments and measures for assessing children’s health are standardized on a particular (usually white, middle-class) population, so it is often unclear how valid and reliable they are for other racial, ethnic, and class subpopulations. It is important that surveys attend to possible cultural biases by using measures of health and health influences that have proven to be reliable for subgroups whose health disadvantages are of interest. As new surveys or measures are developed, instruments and administration methods should be tested on groups that represent major population subgroups to assess validity and reliability. Regular and periodic surveys could greatly increase understanding of the role played by contextual as well as individual characteristics in overall health. In addition to funding new and independent longitudinal studies of children’s health, existing data collection vehicles, such as the National Health Interview Survey, can be used to conduct follow-back studies that provide useful repeated cross-sectional information. Longitudinal surveys of health and health influences should have high priority in research, since they alone are able to characterize and incorporate temporal and developmental dimensions of health and provide the data needed to construct developmental health trajectories. Ideally, such surveys would be conducted recurrently to enable assessments over time. The committee’s review of the importance of a wide variety of influences on health outcomes demonstrates a need for greater understanding of the effect, distribution, and changing character of different influences on children’s health. The committee reviewed many existing surveys and data collection efforts and found that many of the most salient and important influences on children’s health are often collected by surveys that were originally designed to measures changes in family life, income dynamics, or educational attainment. The committee determined that, with little additional response burden, health measures could be

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health added to many of these existing surveys (e.g., the Early Childhood Longitudinal Studies), providing powerful additional information at marginal increases in costs. If these health measures were the same as those included in existing health surveys, findings across surveys could be usefully compared. Piecemeal additions to existing surveys will help advance understanding of the nature of children’s health and its influences, but they do not substitute for truly comprehensive data collection projects. Over the longer term, approaches need to be developed that incorporate the following elements: oversampling of disadvantaged groups; tracking of children early in life, collecting prenatal information; frequent interviews and assessments with these children throughout childhood and into adulthood; measurement of assets as well as deficits; comprehensive measurement of multiple contexts that affect children’s health, including the biological, demographic, and socioeconomic, at both the family and neighborhood levels, and services and policy environments; measurement of gene-behavior-environment and other developmentally specific contextual interactions; and charting of health and disease trajectories and the relative contribution of various influences on health outcomes. The National Children’s Study being considered by HHS and the Environmental Protection Agency is a possible vehicle for not only collecting data on the functioning and health potential domains, but also implementing a comprehensive, longitudinal assessment of children’s health and its influences as envisioned here. Such an approach could contribute greatly to understanding of the dynamics of children’s health and its influences. Monitoring Health Disparities Recommendation 4: National and state surveys and records-based sources of data on children’s health and its influences should gather systematic, standardized data on racial, ethnic, immigration, and socioeconomic classifications in order to measure the origins, distribution, and development of disparities in children’s health and facilitate linkage and analysis across multiple datasets. Although in the committee’s view policy makers should pay special attention to the needs of all children, subgroups of children, including those defined by race, ethnicity, and socioeconomic status, experience poorer health outcomes and poorer access to services in ways that affect their future potential for healthy, productive adulthood. Many of the factors leading to the development of health disparities and the gradients in these disparities across populations are poorly understood. The committee recognizes that reducing population health disparities in children and adults is an important national health policy goal. Research on the

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health origins and development of population health disparities in children demonstrates that many disparities result from prenatal influences or have their origins early in life. Disparities can continue to develop in a linear fashion, or their effects can be compounded as a function of a child’s age and developmental process. A key priority is to improve measures that focus on the origins, development, and compounding effects of health disparities. The growing body of research also demonstrates that most health disparities between populations defined by specific characteristics (e.g., race, income, geography, institutional home, disease state) are the result of differential influences that cut across the population characteristics of interest. Rather than existing as dichotomous measures, many disparities are the result of a gradient of continuous influences across a range of social, economic, ethnic, cultural, and geographic factors. In the committee’s view, over the longer term, measures should not be limited to ethnicity and income differentials but must also account for disparities in health outcomes for other vulnerable child populations. This includes those with special medical needs due to genetic defects, injury, abuse and neglect, residential turbulence (including foster care placement and homelessness), and to a range of other factors that lead to systematic differences in health. The committee identified the need to develop better information and more conclusive evidence to target interventions that have the greatest likelihood of decreasing population health disparities and in order to design effective policies to ameliorate these disparities. Differences in how various cultural and ethnic groups consider health and disease affect the interpretation of inquiries about health and services utilization patterns and therefore should be considered when evaluating the effectiveness of policies and interventions. To promote a more systematic understanding of the effects of culture, it is important to measure minority and socioeconomic status and acculturation in surveys and in health records and to ensure that measurements be consistent across measurement systems. In the case of race and ethnicity data, this can be accomplished by conforming to current guidelines of the Office of Management and Budget. In the case of immigration data, the committee recommends using such questions as those included in the most current waves of the Current Population Survey. Despite a large body of research on health disparities across subgroups defined by socioeconomic status, no standards have been established for how socioeconomic status ought to be characterized in surveys and administrative records. However, ample methodological research has led to thoughtful recommendations regarding how surveys and administrative records could gather reliable measures of the education, household income, or occupational dimensions of socioeconomic status. Such recommendations should be considered in the design of surveys and collection of administrative data.

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health Geographic Information Recommendation 5: Federal agencies and departments, particularly the Environmental Protection Agency and the U.S. Department of Health and Human Services, should promote the systematic collection, dissemination, and linkage of data on children’s exposure to toxins, air pollution, and other environmental conditions, as well as data on policies likely to affect children’s health. The Census Bureau should continue to collect and distribute local-area data and facilitate efforts to match these data to existing sources of information on children’s health and its influences. Recommendation 6: Government and private agencies and academic organizations that conduct health-related surveys or compile administrative data should geocode addresses (i.e., provide geographic identifiers) in ways that facilitate linkages to census-based and other neighborhood, community, city, and state data on environmental conditions. With adequate protections to ensure the confidentiality and security of individual data, they should also make geocoded data as accessible as possible to the research and planning communities. An emerging body of evidence demonstrates a clear association between geographic location and children’s health. Suggestive associations have been established for such environmental conditions as neighborhood, socioeconomic conditions, crime, community cohesion, ambient noise, traffic flow, and air quality. Efforts to monitor and understand environmental influences on children’s health are facilitated by the systematic collection of regional, neighborhood, and community-level information. Most importantly, demographic and economic information about neighborhoods (census tracts), communities, cities, and states has been collected and made available to planners and researchers every 10 years as part of the decennial census. Continued collection of most of this information is threatened by congressional plans to eliminate the long-form questionnaire from the 2010 census. The emerging American Community Survey (ACS) has been proposed as the vehicle for collection of long-form data. The committee supports the continued collection of these vital neighborhood data. Information at the census tract level on the demographic and economic characteristics of neighborhoods should continue to be collected at least once every 10 years and preferably more often, through the ACS, the decennial census, or in some other way. Other local and regional environmental data, such as neighborhood and community-wide crime rates, regional air quality, and doctor availability in a health services planning area, also hold great value for health planners and researchers. Such data can help specify gradients in the effect of different influences, in order to specify thresholds of concern and to better target prevention,

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health intervention, and health promotion activities. Improving the availability of data at the neighborhood, community, or regional level can improve the ability of a local community to target their own efforts and institute community-specific interventions. Environmental data are valuable in and of themselves, but they also enhance the value of survey and records information. For example, survey-based reports of poor children’s health can be related to neighborhood socioeconomic conditions, or crime, or local or state policies regarding health care or welfare reform. Records-based data on substantiated reports of child abuse can be examined to see if cases cluster in certain neighborhood “hot spots.” But the geographic dimension can be exploited only if subjects’ locations (e.g., homes, schools, workplace addresses) have been coded with geographic identifiers. With proper safeguards, data collectors should make efforts to make these geocodes, which facilitate geographic linkages or the linked data themselves, more available to the planning and research communities. Balancing Confidentiality with Public Health Needs Recommendation 7: Administrators of survey and records-based sources of health information should take all necessary legal, ethical, and technical steps to ensure respondent or subject confidentiality while also promoting the availability of needed data to the research and planning communities. The committee recognizes the importance of maintaining the confidentiality and privacy of data, perhaps especially for children: data can follow them through various programs and systems and be perceived as potentially affecting the provision of benefits and services, and facilitating geographic analysis threatens subject anonymity. Administrative data can be integrated in a manner that prohibits the identification of specific children. Safeguards include obtaining appropriate parental consent for the collection and sharing of data, limiting access to integrated data, ensuring that data security protocols are in place, and in some instances reporting only aggregated data. The committee is encouraged by the many surveys and records systems that have developed geographic identifiers that both safeguard data and make them available to the research and planning communities. However, much more needs to be done to make data, such as that collected by the NCHS, readily accessible to the research and planning communities. Facilitating State and Local Use of Data Recommendation 8: The U.S. Department of Health and Human Services should formulate strategies to improve the capacity of state and local communities to monitor children’s health and its influences, including fund-

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health ing state or local demonstration projects, standardization of data elements, and technical assistance. Both federal and state governments should assist local efforts to measure trends in children’s health and development and to address disparities in children’s health, health influences, and access to and use of health services. Of greatest use to health planners are the collection and public distribution of data on health and health influences at neighborhood, community, county, and state levels. State web sites with aggregated data hold particular promise as ways of disseminating information inexpensively to large numbers of users without breaching confidentiality. Web sites designed for use by the public as well as public and private researchers with more sophisticated skills have greater usefulness. Because there are likely to be common technical, methodological, and measurement challenges at the state and local levels, the federal government has an obvious role in convening and supporting efforts to reengineer state and local health information systems. Collaborative strategies to identify and implement promising data system reform strategies should be supported by the federal agencies. Federal agencies—including but not limited to the CDC, the NCHS, the MCHB, and the AHRQ, operating under the auspices of the newly designated lead HHS agency—should assist states in their effort to improve and create more systematic approaches to measure children’s health. They should provide preferential funds for model demonstrations that use standardized data collection methods, aggregate data by local geographic units, and disseminate aggregated data on web sites designed with two to three levels of complexity to meet the needs of the public and researchers while simultaneously protecting confidentiality. Federal guidance and assistance are necessary but not sufficient for states and localities to realize the potential of records data to inform health policy and research. States and communities should establish a process for using the data on children in the allocation of limited resources, policy development, and the evaluation of strategies. Several areas of children’s health measurement are ripe for efforts to integrate data across age ranges, child service sectors, and geographic levels. Several of these areas would build on or be responsive to important and emerging children’s health issues that are supported under a range of different federal and state initiatives. In building and improving the function of data collection systems, it is also useful to institute data integration strategies that capture aspects of health across developmental stages. For example, a possible measure of health potential is profiles of school readiness that can be measured at school entry. Measures of school readiness usually capture several aspects of functioning, such as physical, social, emotional, cognitive, and language functions. Currently, some states and com-

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health munities are instituting school readiness measures that can be linked to other measures of specific influences, in order to describe the effect of services, service availability, and other factors that impact school readiness profiles. Measures of school readiness in comparable dimensions can be collected at ages 2, 3, 4, and 5 to establish school readiness trajectories for individual children and populations of children. Use of integrated data to produce school readiness trajectories could provide communities with powerful information to improve the delivery of various services and target prevention and promotion activities. It is also important to consider linking data across different service sectors (health, education, nutrition, child welfare). Such integration strategies using common identifiers can allow communities to understand questions such as whether 10 children are receiving one service each or whether one child is receiving 10 services. Improved integration of data across sectors would provide information to enable different service sectors to align their policies and programs to produce more effective and efficient outcomes. STATE AND LOCAL LEADERSHIP AND USE OF DATA Recommendation 9: Governors, mayors, and county executives should designate a central coordinating agency responsible for measurement and monitoring of children’s health across agencies, as well as an individual responsible for reporting on progress toward integrating data on children’s health. The state coordinating agency should facilitate use of standardized data at the local level. States and communities must also coordinate the efforts of multiple entities serving children and their families. It is necessary to have a single agency at the state and local levels responsible for evaluating children’s health and reporting the results to policy makers and the public. In many states and communities, this single entity would probably be the state or local health department, particularly the maternal and child health agency. However, some states and communities have empowered other structures or entities for this role. Some state governors have formed children’s cabinets that include the director or commissioner of each agency with services for children. A lead state agency may be appointed to coordinate efforts and report to the governor, or a senior official in the governor’s office may be given this responsibility. Some mayors have established offices of children’s services, children’s caucuses, and cabinets that report to the mayor to provide leadership on all issues relating to children. The benefit of having a lead state and community agency responsible for coordinating data efforts related to children is that the responsibility can be institutionalized and continue even with a change in administrations. How the elected official for the state or community achieves leadership for this effort on behalf of children will depend on how the governmental entity is organized and the exper-

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health tise available within his or her administration. The most important role of the governor, mayor, or county executive is communicating and demonstrating to the administration and the established leadership team that promoting and evaluating children’s health are priorities. The federal government can facilitate the development of state data systems by promoting standardization of data collection methodologies and coordinating data collection efforts among the many federal departments and agencies. Federal data also provide a benchmark against which states can compare their own performance and, if collected for all states, a standard to which states can compare one another. Recommendation 10: The designated state and local coordinating agencies should advance strategies for standardizing and integrating records, including available administrative records and survey data, to maximize their potential for monitoring children’s health and understanding its influences. Despite increased efforts to collect state- or local-level data through such programs as the maternal and child health block grants and an increase in the number of communities that produce report cards that include or are specific to children, comprehensive state and local-level measurement of children’s health is still relatively uncommon. Substantial administrative data, collected primarily at the state level, could serve as the foundation for efforts to analyze children’s health in a community and the factors that might explain health problems. Although improved data integration is not in itself sufficient to answer all questions related to children’s health, enhanced efforts to use existing data could advance children’s health in many places. Several states and localities have implemented efforts to integrate administrative data that have helped to inform policy and resulted in changes that benefited children. The strategy for a national health information infrastructure developed by the National Committee on Vital and Health Statistics and the National Electronic Disease Surveillance System discussed in Chapter 6 provide a partial framework for these efforts. As with surveys, record-based data sources on children’s health and its influences are most useful if they gather health data on multiple developmental stages, identify subgroups prone to poor health, collect and make available information on the geographic location and environmental conditions of subjects, and at the same time ensure the confidentiality of subjects. Key to maximizing the utility of records-based sources of information is standardizing given types of data and facilitating the linkage of different types of data. Data standardization would be facilitated through the development and use of national guidelines. The committee found value in aggregating all administrative data relative to children by multiple geographic units, including, if feasible and relevant to local

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health circumstances, at the census tract level. In cases in which administrative records are not sufficient to provide the needed data for policy development or planning of interventions, states and communities should consider conducting targeted surveys. Of most value would be surveys that model national surveys, thus allowing comparisons with a national standard, or state- or local-level application of national surveys, such as the Behavioral Risk Factor Surveillance Survey. When feasible, strategies to link data at the individual level and then aggregate to community levels should be a goal. PROMOTING RESEARCH Recommendation 11: The U.S. Department of Health and Human Services and the Environmental Protection Agency should prioritize research and training on emerging methods for characterizing children’s health and understanding influences on it, including research on: creation of improved measures of functioning and health potential; the relative importance of and interactions among the range of influences; biopsychosocial pathways of development; assessment of children’s exposures to environmental toxins and other environmental health hazards; reasons and remedies for health disparities; longitudinal methods that can identify causal relationships between developmental and functional levels and the health status of children; development of profiles and integrative measures of children’s health; and construction of trajectories for each domain of children’s health. Great strides have been made in conceptualizing the dynamic process by which many external influences interact with individuals’ biology and behaviors over the course of childhood to determine health. However, empirical studies of the nature and importance of these processes are suggestive but far from definitive. The research literature provides strong empirical evidence that children’s health results from developmental processes involving continuously changing and iterative time frames with differentially sensitive and critical periods of development for prevention and health promotion. At each developmental phase, children experience multiple influences, and their experiences in a given phase will in turn shape their response to influences in later stages of development. Yet current measures of children’s health capture neither the iterative nature of these factors nor their interdependence. Furthermore, the measures are generally not robust

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health across different developmental stages, so that health characteristics can be assessed across stages of development in a dimensionally consistent manner. An earlier section of this chapter delineated the elements of ambitious new surveys that would promote research efforts in this regard. The committee also highlighted important technical and methodological gaps in the ability to measure specific dimensions of health across developmental stages in a consistent and continuous fashion. Some of these gaps require more research on appropriate measures and measurement strategies. As basic science continues to elaborate the biological, behavioral, and environmental pathways of healthy development, new measures will become available based on how these pathways function. As more is learned about sensitivity genes, and genomic testing becomes more widespread, the value of biomarker assessment is likely to increase considerably. At the same time, the technologies for gathering biomarker data in routine surveys using noninvasive procedures are advancing rapidly. The current and future use of such biomarkers in isolation or in conjunction with other health or health influence (including genetic) measures demands increased research attention. Furthermore, given the complex interaction between genetic and multiple environmental factors, these assessment and predictive efforts should be integrated with measures of other influences and indicators of health to enable the development of composite measures of health. Given the large number of new chemicals introduced into the environment each year, and the lack of information about their effect on human function and health, particularly their potential effect on children, there is a growing need to measure the exposures of children to these agents more systematically and to understand better their potential effect on children’s development. In addition, the levels of agents currently in the environment known to pose an appreciable risk to children need to be monitored and child populations at greater risk of environmental exposures identified. The committee determined that, despite general awareness of the scope and nature of children’s health disparities across population subgroups, the reasons for such disparities are barely understood. A growing body of empirical literature indicates that many disparities begin early in life and increase or are compounded as a child grows. Much is to be learned from longitudinal research on the processes that lead to health disparities among specific subgroups and on the development of measures of health and health influences that are valid across population subgroups. Longitudinal studies that examine cultural processes—acculturation, daily routines, values and attitudes toward childrearing, and the effects of actual or perceived discrimination on health disparities—are needed. In addition, traditional methods for measuring health and social influences are not equally valid across subgroups. Efforts to develop reliable measures to assess the influence of culture and discrimination on children’s health need to be supported.

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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health Newly developed statistical strategies, such as growth curve analysis, provide promising ways to test dynamic models of health and health influences using longitudinal data. Here the needs are twofold: (1) to support efforts to develop these models so that they can be applied to conceptual advances in understanding influences on children’s health and (2) to support efforts to train new and existing cohorts of researchers in these methods. Finally, there is a great need for research that can translate what are potentially effective measures used primarily for research purposes into wider application for population health measurement and policy development. At present there is an enormous gap between what can be measured in controlled research environments and what is currently applicable for population and more general health measurement uses. Bridging this gap requires research that can address conceptual, methodological, and technical hurdles, many of which the committee has identified. These hurdles are eminently addressable but require dedicated resources, attention, commitment, and collaboration among researchers and public officials and agencies that could benefit from a more comprehensive and integrated measurement system and resources. CONCLUSION Much progress has been made over the past century in understanding the special attributes of children and the importance of their healthy development to the health of the population as a whole. Nevertheless, in the United States, the current failure to adequately consider, define, conceptualize, and measure the dynamic and multidimensional aspects of children’s health has profound implications for the entire population, with potentially compromising effects on the nation’s health. It is time—arguably overdue—to repurpose efforts at the federal, state, and local levels to focus on the nation’s most valuable national resource—children. The reasons for and the steps involved in this establishment of children and their health as a national priority have been described in this report; in short, it is time to develop ways of looking at and assessing children that will demand that the nation nurture and develop their inherent richness and potential across the multitude of geographic, racial, cultural, socioeconomic, and developmental spectrums. This effort requires a shared vision from local communities through the highest levels of national government and should be treated as an urgent national priority.