2
Needed: An Information Enterprise to Drive Knowledge and Population Health Improvement

The national preoccupation with the cost of clinical care is well founded, and changes in the system are essential and urgent. However, improving the clinical care delivery system’s efficiency and effectiveness is likely to have only a narrow effect on the overall health of the population. Other factors, or determinants of health—genes, behaviors, social and economic conditions, and environmental exposures—influence health outcomes. The national emphasis on clinical care (largely to the exclusion of other contributors to health) has not led to health outcomes that are commensurate with investments. A landmark 1974 Canadian government report provided one of the earliest acknowledgments that clinical care alone is neither responsible for poor health outcomes nor the sole solution to health problems (Lalonde, 1981). In the ensuing decades, the evidence supporting that thesis has grown (see Chapter 1 for further discussion).

In the present chapter, the committee discusses the information needs of the health system (broadly conceived) and the capacities and limitations of the nation’s population health statistics and information system, which consists of an array of public-sector and private-sector entities that collect, analyze, and study data and communicate information relevant to population health. The system’s familiar components include vital-records systems; surveillance systems (for example, for acute conditions); and such clinical care data sources as administrative claims databases, electronic health



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2 Needed: An Information Enterprise to Drive Knowledge and Population Health Improvement The national preoccupation with the cost of clinical care is well found- ed, and changes in the system are essential and urgent. However, improving the clinical care delivery system’s efficiency and effectiveness is likely to have only a narrow effect on the overall health of the population. Other factors, or determinants of health—genes, behaviors, social and economic conditions, and environmental exposures—influence health outcomes. The national emphasis on clinical care (largely to the exclusion of other con- tributors to health) has not led to health outcomes that are commensurate with investments. A landmark 1974 Canadian government report provided one of the earliest acknowledgments that clinical care alone is neither re- sponsible for poor health outcomes nor the sole solution to health problems (Lalonde, 1981). In the ensuing decades, the evidence supporting that thesis has grown (see Chapter 1 for further discussion). In the present chapter, the committee discusses the information needs of the health system (broadly conceived) and the capacities and limitations of the nation’s population health statistics and information system, which consists of an array of public-sector and private-sector entities that collect, analyze, and study data and communicate information relevant to popula- tion health. The system’s familiar components include vital-records systems; surveillance systems (for example, for acute conditions); and such clinical care data sources as administrative claims databases, electronic health 35

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36 FOR THE PUBLIC’S HEALTH: MEASUREMENT records, and federal surveys that summarize population health outcomes (NCVHS, 2010).1 Helping communities to understand the local conditions for health and outcomes is a necessary (but not sufficient) precursor of the work of im- proving unfavorable socioeconomic and physical environments. Accurate, timely, locally relevant information is crucial for the implementation of population-focused interventions of established effectiveness and for imple- menting and evaluating promising new strategies. In the pages that follow, the committee discusses three sets of challenges, endeavors in which changes are warranted to strengthen the population health statistics and information system: adopting the determinants-of-health perspective at a fundamental level (to complement the health system’s predominantly biomedical orienta- tion); enhancing responsiveness to the needs of end users; and coordination and cross-sector collaboration at the national level, beginning with the primary federal health-statistics agency—the National Center for Health Statistics (NCHS)—and with federal health data and statistics activities in general.2 An additional, overarching challenge, and one to which the com- mittee intends to return in its later report on funding, is the extreme inad- equacy of resources available for statistical and data-gathering activities of governmental public health agencies at all levels in general (Friedman and Parrish, 2009b; HHS et al., 2002) and NCHS in particular (NCHS, 2008, 2009; Population Association of America, 2010). Several related terms are used to describe concepts in the field of health statistics and information. In common professional usage, the terms statis- tics and measures are often used interchangeably to refer to an aggregate data point (or set of data points) about a phenomenon, such as disease- specific mortality in a particular age group over a given period. (Statistic is also used in the field to indicate a type of measure, such as a mean, a median, or a proportion.) A specific statistic or measure is commonly called an indicator when it is widely acknowledged to be useful for monitoring something of concern to policy-makers or to the public. Examples include the monthly unemployment rate and the annual poverty rate as indicators of the health of the national economy. Such indicators can be simple statis- tics or can be quite complex; for example, many data sources go into the 1 The system includes 57 vital registration jurisdictions in the United States and the entities represented by the National Association for Public Health Statistics and Information Systems (Schwartz, 2008). 2 The Department of Health and Human Services (HHS) Data Council plays a key role in fa- cilitating intradepartment coordination on data and statistics issues. The council has supported the development of the HHS Gateway to Data and Statistics (HHS, 2010d), which represents one of several HHS efforts to make federal health data more available and accessible. The council’s role in coordinating HHS data systems has also been discussed in a meeting of the HHS secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020 (HHS, 2009).

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37 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE BOX 2-1 On Scorecards The term scorecards is sometimes used to refer to health-indicator sets that provide a snapshot of an area’s health (for example, How is X County compared with a national standard, compared with Y County in a given state, or compared with last year?). However, the term’s specific meaning in the business, educa- tion, and clinical care settings—as a tool for internal performance evaluation (for example, balanced scorecards)—is different from the meaning and purpose of many health-indicator sets. The committee struggled with achieving clarity about the seemingly overlapping meanings of the terms used in measurement and recognized that the purposes of performance measurement, public reporting, and mobilization are not necessarily independent or neatly separate from one another. The lack of semantic exactness regarding health indicators has led to a conflation of two primary meanings: “measures of health” and “measures of performance on health.” Many public health or population health data sets (as opposed to data sets used in the clinical care context) called scorecards or report cards are not, in fact, intended for or capable of measuring the performance of public health agencies in a county or state, of other organizations, or of communities in general. The com- mittee discusses this difficulty with use of the term scorecard further in Chapter 4, “Measurement and Accountability.” quarterly measure of gross domestic product. In this chapter and throughout much of the report, the committee will use the term indicators to denote components of data sets that convey information (comparative or ranked) about the health status of the country, states, and counties. Indicators will also refer to a variety of existing and potential metrics used to inform, mo- bilize, and advocate and in the context of a later discussion of measurement in accountability (in Chapter 4).3 The term scorecards is used to refer to some of these efforts and their indicator sets (see Box 2-1 and Chapter 4 for a discussion of this term). 3 On the difference between performance measures and outcome measures: The two types of measures may overlap in terminology and operationally. In ideal circumstances, it would be easy to draw a straight line between cause and effect in population health, elucidating a clear causal relationship between system inputs, such as programs or policies, and system outputs, such as health outcomes. Sufficient resources and other capabilities would be deployed in in- terventions supported by evidence, best practices, or strong theoretical arguments and would move public health agencies and their partners in the direction of achieving desired outcomes. However, health is the result of complex and dynamic interactions, data on which are often lacking. Because the evidence needed to elucidate the pathway from specific inputs to a given output is often incomplete, decisions as to which data to collect are challenging, and it is often difficult to collect the needed data. This is a topic in which research and analysis, including predictive and systems modeling, can help to elucidate the causal pathways, fill gaps in knowl- edge, and inform a variety of decision-making and policy-making.

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38 FOR THE PUBLIC’S HEALTH: MEASUREMENT THE NEED FOR A DETERMINANTS-OF-HEALTH PERSPECTIVE Strengthening the usefulness of the population health information system requires integrating the concept of social and environmental de- terminants of health (discussed in detail in Chapter 1) and adopting a population-based approach to improving health in all data-collection efforts and in the highest level of strategic planning for the statistics and informa- tion enterprise. Figures 2-1a and 2-1b illustrate the population health and clinical care approaches to the sample outcomes of infant mortality and cardiovascular disease (CVD). The figures depict how interventions and the stakeholders involved in two or more health outcomes may overlap and are intended to show a broader view of how population health is cre- ated (including but going well beyond clinical care). In the figures, clinical care delivery system interventions are depicted on the left (in blue) and interventions or actions rooted in the ecologic–multiple-determinants per- spective on the right (in green). As examples of the capacity of ecologic, population-based approaches to influence multiple health outcomes, some domains or stakeholders with potential multiple (and overlapping) effects are highlighted (in orange). Successful strategies for improving both infant and cardiovascular health require complementary interventions in multiple sectors to promote the desired change through the feedback loops that connect them. Of note are the synergies associated with combating the vastly different problems of infant mortality and CVD when the interventions are generated through a population health model. In moving from the left side of a figure toward the right side, one is reminded of the shift in the public health community’s perspective of the “actual causes of death,” traced in the work of McGinnis and Foege (1993) and later Mokdad and colleagues (2004), from a largely biomedical-model perspective (for example, with respect to heart disease, cancer, and stroke) to one that recognizes upstream causes, including un- healthy behaviors (for example, tobacco use, inadequate physical activity, poor nutrition, and alcohol abuse) and the environmental conditions that may precipitate them. Given the strong and compelling evidence of broad social and economic influences on health, contemporary researchers describe an even more upstream set of causes of death and poor health. It is high- lighted in the work of the Robert Wood Johnson Commission to Build a Healthier America (2009) and the commission’s high-profile messages that place matters and that the influence of ZIP codes (and the socioeconomic environments they represent) outweighs that of genetic codes. The actual causes of death as understood today could be described as place of residence, socioeconomic status, income inequality, discrimination, and other policy and environmental factors (see, for example, Braveman and Egerter, 2008; Egerter et al., 2009). Although the importance of the upstream factors is widely recognized

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Infant Mortality Multiple-determinants Clinical approach approach Access Quality Behavior Clinical care Education Nutrition Income Environment Social support Determinants Income level, Prenatal: Quality Early Prenatal: care in Teen Sources of Social Parks and unemployment, measures, intervention frequency of first trimester fresh food, cohesion, green spaces pregnancy, food security programs, access prenatal visits. (BMI smoking, density of fast stress, safety for exercise, high school measures, Postnatal: assessment, food outlets, community walkable, diet, alcohol completion, patient access to blood tests, use (also existence of programs transportation higher education, activation specialists, vitamins, school see nutrition) health literacy neonatal ultrasounds). nutrition Measures intensive standards and Postnatal: care breastfeeding policies measure, care for low birth weight infants Providers, Public health Schools, school Political and Medical care Reproductive Retailers, Government, Planners, hospitals, boards, legislators, social agencies, organizations care providers, legislators, employers government payors, community community legislators, (public and community public health departments organizations, organizations, academia employers, private), clinics, insurers, agencies parent-teacher faith-based schools neonatologist, payers, quality associations, organizations pediatric organizations Department of Stakeholders surgeon Education, school districts FIGURE 2-1a Contrasting the multiple-determinants and clinical approaches to addressing infant mortality. 39

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40 Cardiovascular Disease (CVD) Clinical Multiple-determinants approach approach Behavior Education Nutrition Income Access Quality Clinical care Social Environment support Domains Quality Income level, Cardiovascular Preventive: Obesity, Early Sources of Social Parks and green unemployment, measures, physical disease Routine blood intervention fresh food, cohesion, spaces for : food security, access activity, specialists, tests (monitoring), programs, density of fast community exercise, job security measures, smoking surgery blood pressure high school food outlets, programs, walkable, patient screening/ completion, alcohol use stress transportation, (also see activation treatment, advising health literacy bike paths nutrition) smokers to quit. Measures Treatment: beta blockers, cholesterol management Medical care Medical care Providers, Schools, school Retailers, Government, Political and Planners, Public organizations practitioners, hospitals, boards, legislators, employers social government health (public and insurers, payers, payors, legislators, public health community agencies, agencies, private), CVD quality community agencies organizations, architects, academia legislators, specialists organizations organizations, employers, community employers parent-teacher faith-based groups Stakeholders organizations FIGURE 2-1b Contrasting the multiple-determinants and clinical approaches to addressing cardiovascular disease.

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41 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE and is a subject of growing scientific research, local decision-makers who wish to assess these factors often find it difficult to do so because of lack of data. At the national and state levels, where more data are available on some determinants of health, such as income and poverty, the problem may be not a lack of data but the existence of “multiple data bases, multiple estimates, and uncertainty about which survey produces the best numbers” (O’Grady, 2006). The lack of accurate local data on social, environmental, and behavioral determinants of health not only impedes policy action but also obscures basic awareness of the issue and leaves the public uninformed about important trends. A common presumption is that health is defined by clinical care. How health really is improved and disease prevented or controlled remains largely invisible to most Americans, owing in large part to a failure to convey this information to the public. Although many organi- zations, individuals, and groups in communities all around the country are engaged in activities intended to target various aspects of the determinants of health—including employment, education, housing, access to healthy food, early childhood interventions, safe communities, livable (walkable and accessible) communities, and fair labor standards—the linkages among these activities and their influence on the broader health and well-being of communities are often not made. Inadequacies in public awareness of what creates good health and, in turn, the benefits of good health itself (such as greater potential for economic productivity and prosperity) can be addressed partially by the availability of reliable information about local health out- comes and their determinants and by an effective strategy to communicate the information to the public and decision-makers. Multiple factors influence a population’s health heavily, but the United States, unlike its neighbor Canada, lacks a systematic national strategy to identify and address the set of social and environmental determinants of health that are most responsible for health outcomes. Several European countries have for many decades collected health data according to detailed socioeconomic categories—for example, from income rankings to occupa- tional hierarchies (Braveman et al., 2010). Recent Canadian and British examples include the Canadian Senate Report on the Determinants of Health (Mikkonen and Raphael, 2010) and the report Fair Society, Healthy Lives: A Strategic Review of Health Inequalities in England Post-2010 (The Marmot Review, 2010). The Affordable Care Act of 2010 (ACA) includes components that pertain to population health and refers to the “social and primary determinants of health” (Public Law 111-148), but the national dialogue and federal activities that both preceded and have followed the act’s passage have not done enough to advance public understanding of the non-medical-care-related contributors to the health of Americans, such as housing, built and natural environments, income, education, occupation, culture, inequity, and discrimination. However, there are recent examples

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42 FOR THE PUBLIC’S HEALTH: MEASUREMENT of the federal government’s recognition of the importance of integrating a determinants-of-health perspective into the process of rethinking and ex- ploring innovative changes in data collection. For example, “in 2009, the Centers for Disease Control and Prevention (CDC), through the Behavioral Risk Factor Surveillance System (BRFSS), introduced a ‘social context’ module, which is being used by 12 states, the District of Columbia, and 20 communities and consists of eight questions intended to assess civic engage- ment and food, housing, and job security” (Friedman and Parrish, 2009b). Despite a long history of efforts to prepare a national report on so- cial (and cultural) indicators to measure progress and inform policy, the United States lacks such an accounting (GAO, 2004). In the 1960s, there were several attempts to prepare a national document on social indica- tors, beginning with the Social Indicators report prepared by the American Academy of Arts and Sciences (at the request of a federal agency) (GAO, 2004) and the 1969 publication from the Department of Health, Educa- tion, and Welfare (DHEW)4 titled Toward a Social Report (Department of Health, Education, and Welfare, 1969). According to a Government Ac- countability Office (GAO) report (2004), the DHEW document concluded that “indicators on social and cultural conditions were lacking, and recom- mended that the executive branch prepare a comprehensive social report for the nation with emphasis on indicators to measure social change that could be used in setting policy and goals.” In the 1970s and early 1980s, both federal and academic or nonprofit efforts in this subject continued, but no major centralized national or federal effort was established and sustained. (The new National Prevention, Health Promotion, and Public Health Council created by the ACA offers an opportunity for a “health in all” approach to population health improvement that potentially could in- volve interdepartmental attention to the underlying causes of poor health in the United States.5) A report by the Department of Health and Human Services (HHS) and NCHS, Health, United States, 1998, had a special focus on socioeco- nomic status and health (NCHS, 1998). Although a small subset of socio- economic factors have been addressed in its annual updates, HHS has not made an examination of an array of health-outcomes data by socioeco- nomic variables a major theme since 1998. Several other federal docu- ments focus on subjects related to determinants of health, including the series of annual Agency for Healthcare Research and Quality (AHRQ) Na- tional Healthcare Disparities Reports and the National Health Interview Survey Series 10 reports (AHRQ, 2007; CDC, 2010). However, the former 4 Predecessor of today’s HHS. 5 The health-in-all-policies approach refers to crosscutting analyses that examine ramifica- tions of all types of policy decisions for health outcomes by using such tools as health impact as- sessments. This approach is used extensively in Europe, and to some extent in the United States.

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43 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE focus on medical care, and the latter do not consider race and economic factors in combination (Braveman et al., 2010). Aside from those efforts, the United States does not have a federally led national-level annual report on the socioeconomic and environmental determinants of health.6 There have been several academic and nonprofit efforts to fill the gap in recent years. In 1999, sociologists Marc Miringoff and Marque-Luisa Miringoff published The Social Health of the Nation: How America Is Really Doing, which put forward an Index of Social Health, an effort that has not been sustained (Miringoff and Miringoff, 1999). More recently, the Social Sci- ence Research Council created the American Human Development Project, which publishes the annual report Measure of America (Burd-Sharpe et al., 2010), and the Virginia Commonwealth University established its Center on Human Needs, which gathers and communicates data on societal dis- tress7 (Virginia Commonwealth University, 2009). There is growing recognition of the importance of incorporating the determinants of health in the broadest strategies for health-data collection and for implementing effective policies to improve public health. What remains absent is a concerted and systematic effort to capture relevant data on the determinants and to make them easily accessible to policy-makers in ways that are useful for making decisions, especially at the state and local levels. The committee believes that this activity is most appropriately located within the federal government in an effort to gather and report data on health determinants, including disparities, which could serve as a compelling tool for informing Americans and mobilizing action. RESPONSIVENESS TO THE NEEDS OF END USERS Committee members heard about the data needs of communities and local decision-makers in its information-gathering sessions and at other meetings (IOM, 2010b), such as a launch meeting hosted by the Institute of Medicine (IOM) for HHS’s Community Health Data Initiative (CHDI), which has served as a platform for publicizing the HHS Data Warehouse operated by NCHS. Multiple participants asked about the availability of local (for example, county, ZIP code, and census-tract) data and learned that most of the federal population health data available currently lack that level of specificity. From the perspective of end users, such as local decision-makers in general and public health officials in particular, efforts must be made to improve the characteristics of available data, particularly completeness, 6 The Davos Conference report on competitiveness shows that the United States lags in determinants of health, signaling potentially worsening health outcomes in the future (Schwab et al., 2010). 7 Societal distress is measured in five domains: food, housing, health, education, and income.

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44 FOR THE PUBLIC’S HEALTH: MEASUREMENT usefulness, geographic relevance, and timeliness. The information needed by end users resides in different administrative structures, and the data are often not readily accessible. Federal activity, state and local contributions, and independent supplements to data collection could be enhanced by a more integrated approach overseen by a central body that more fully ascer- tains and addresses state and local needs (such as sample design, populations included, and health issues measured). Since the middle 1990s, federal health-statistics programs, such as the CDC National Health Interview Survey (NHIS) and the AHRQ Medical Expenditure Panel Survey, have made great strides in increasing the timeli- ness of reporting of data collected and, through partnerships with nonprofit organizations, have improved their ability to provide state and local data (Academy Health, 2004). Although there has been a consistent trend toward timeliness and local usefulness of federal data, gaps remain because of re- source limitations and other factors that are detailed below. Data are partly or largely lacking on some indicators that are needed to inform decisions and action, including environmental monitoring data (Luck et al., 2006); chronic-disease prevalence and prevention or con - trol (Goff et al., 2007a; Luck et al., 2006), with asthma as one example (Mendez-Luck et al., 2007) and diabetes another (Goff et al., 2007b); data on health behaviors, such as tobacco use; and data on aspects of the built environment, such as housing quality—for example, the Census Bureau’s American Housing Survey collects data every 6 years on housing quality in metropolitan areas, but few data are available on small areas or neighbor- hoods in some jurisdictions (Krieger and Higgins, 2002). The existing sets of indicators generally were not designed to convey information that can identify loci for intervention to improve health. They are therefore unable to provide actionable insights on health that a local official can put to use. There are also critical gaps in information where the evidence base suggests a relationship between a given determinant and an intermediate or distal outcome, but the methods of capturing or representing that determinant validly and reliably are not yet developed. In such a case, use of multiple, disconnected health indicators may not provide the appro- priate guidance for population-based strategies for which understanding of causal pathways between conditions and exposures and intermediate and distal health outcomes is critical. Communities and decision-makers need data that provide useful infor- mation for judging the health of communities. It is crucial that the popu- lation health statistics and information system adopt as its core mission serving decision-makers, not simply compiling or analyzing statistics or serving national-level planning needs. The system, and especially its federal- government core, must determine what kinds of information are needed at the community level (through broad consultation); ensure that such data

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45 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE are collected (both primary collection as items on population surveys and secondary aggregation from all relevant public and private sources into da- tabases and warehouses), updated, vetted for quality, and made accessible to users in terms of both ease of access and localization to the community level; and elicit feedback on completeness, usefulness, timeliness, and geographic relevance of data in a feedback loop to the first step. One important need is for a generic measure of health status (for example, health-adjusted life expectancy or the equivalent) because disease-specific statistics are not suf- ficient. The population health statistics and information system is producing a surplus of data and indicators that are not all conducive to the assess- ment of health. Through its CHDI and its NCHS-managed HHS Health Indicators Warehouse, HHS has made great strides in making its data more useful to the public by beginning to develop interactive interfaces and front ends that serve the needs of users. This ambitious effort to make an array of federal health data widely available (HHS, 2010a) and integrate them with additional federal data sources on factors that influence health, such as the US Department of Agriculture Food Environment Atlas, is intended to inform the development of independent and potentially health-supporting applications by multiple private-sector and public-sector (local government) programmers and others (HHS, 2010b). However, more is needed—for ex- ample, to develop mechanisms for collecting systematic decision-maker and public input on the data and on current and projected user needs. In general, the availability of statistical data decreases as one moves from the national level to the state level and then to the local level (see Figure 2-2 and description below for more detail). Some federal data provide only national-level information, and there are challenges to developing small-area estimates. Several changes could help, including additional methodologic research; the use of technologic innovations to facilitate rapid, inexpensive, and effective local data collection; and changes in national data-collection efforts to replace obsolete or less useful components with components of local relevance. Attention to the needs of federal statistical efforts in this endeavor is exemplified by the 2009 NCHS Board of Scientific Counselors programmatic review of the National Health and Nutrition Examination Survey (NHANES), which urged NCHS to explore “potential ways to im- prove the cost efficiency and screening efficiency for area probability sample recruitment by utilizing commercial data bases for household enumeration” and called for exploring the possibilities for integrating the design of NHIS and NHANES—a recommendation made by others (NCHS, 2009). The US vital statistics system provides an example of several persist- ing challenges. It is a decentralized system: localities collect data that are then compiled by states and submitted to NCHS. However, in recent years, delays in the availability of data have been caused by the combination of aging collection systems (including inadequate automation) and a change

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56 FOR THE PUBLIC’S HEALTH: MEASUREMENT health remains modest (Brownson et al., 2010); and even when there is a good understanding of measures of a particular risk factor or outcome, they are often not available at the requisite level of timeliness (Bilheimer, 2010), detail, or specificity: for example, measures of cardiovascular mortality and, in some cases, the prevalence of CVD and obesity are available locally, but the prevalence of hypertension and data on lipid concentrations are usually unavailable, as are measures of physical activity or nutritional status and habits (Goff et al., 2007a). Linking to Other Sources of Data In its 2010 concept paper, the National Committee on Vital and Health Statistics (NCVHS), a federal advisory committee to the secretary of HHS staffed by NCHS, observed that “new investments in electronic health records (EHRs) and health information exchanges are important contribu- tors, especially for clinical care, but the benefits from these investments will be limited unless the synergies with other types of health information are recognized and used” (NCVHS, 2010). The report also asked for “inclusion not just of traditional health-related data, but also of data on the full ar- ray of determinants of health, including community attributes and cultural context” (NCVHS, 2010). The 2002 HHS vision of the future of health statistics similarly noted that the “current health statistics enterprise lacks the ability to develop and articulate effective positions and to engage with the producers of non-health sources of data that is important to understanding health, and also lacks the ability to effectively pursue opportunities to use data that flow from these other producers” (HHS et al., 2002). In their review of implementation of the 2002 vision, Friedman and Parrish (2009a) found that expert key in- formants (including NCHS staff and former and current NCVHS members) believed that the health-information technology effort in medical care had had little or no effect on the population health statistics enterprise despite the 2002 recommendation urging exploration of ways to integrate personal clinical care data with other information streams. The limited interaction with the private sector may be due to the staff and resource limitations highlighted in NCHS program reviews and by others (see, for example, Population Association of America, 2010). However, EHRs and other data sources can both complement and be enriched by linkages to population health data. In addition to the rich stores of data available in HHS and other govern- ment agencies—and efforts are under way to make them more accessible to the public, under the Open Government Directive (Executive Office of the President, 2009)—other data needed for population health assessment reside in the private sector, and in many cases there is no established mechanism for

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57 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE sharing such data with the public sector, with communities, and with other stakeholders to yield novel and potentially useful insights. Other examples of domains of community-health measures and data sources include crime and safety (data could include injury surveys available from public health agencies and other data from law-enforcement agencies and private-sector neighborhood crime-tracking programs and could be used to assess the ef- fect of state and local gun-control laws and community policing activities); healthy housing (a subdomain of the built environment, on which data could include results of lead screening by public health agencies and data from the Department of Housing and Urban Development and other agency housing surveys, information from developers and real-estate databases, and free online sources, all of which could be linked to census-tract pre-1970 housing and school test scores); and transportation (public health agency data on bicycle use, pedestrians, and injuries; data from the Department of Transportation; and private-sector data on commercial bus, rail, and other transit—all of which could be used to assess the effect of helmet-use laws). The examples above show how data potentially available from the private sector could be used to augment information available from public agencies and, in some cases, be the exclusive basis of key information about factors that influence health in a community. Indeed, other sectors have of- ten developed and validated useful indicators. For example, banking institu- tions and financial-service companies may use the local ratio of full-service banks to check-cashing facilities as a proxy measure of economic develop- ment or at least of financial access in neighborhoods (FDIC, 2009).13 Ease in accessing such data varies from case to case. Data from public agencies and some commercial sources are sometimes readily accessible in publications, public-domain websites, and interactive interfaces designed to help users to locate information. Other relevant public health data are more difficult, and sometimes impossible, for a public health official to retrieve. Some difficul- ties are bureaucratic, such as procedural barriers imposed by agencies or companies that require paperwork, data-use agreements, payment of fees, account enrollments, or other special provisions to permit access. Some dif- ficulties are related to quality and privacy concerns, as when agencies censor data they consider invalid because of small samples, or to the potential to disclose confidential information or personal identities. Some companies consider the information proprietary and refuse to release it out of concern that it will disclose intellectual property or yield crucial data to competitors. Although proprietary concerns are a potential challenge to the sharing of private-sector data, the public today can already access much of this information readily on smart telephones, GPS devices, and Web browsers. 13 “Unbanked” persons are considered financially vulnerable because the costs of using informal financial services, such as those of check-cashing businesses, are far greater than the costs of using mainstream financial institutions, such as banks (see, for example, FDIC, 2009).

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58 FOR THE PUBLIC’S HEALTH: MEASUREMENT BOX 2-2 Innovative Techniques and Queries for Intersectoral Data-Gathering · oogle Searches—how many times users (in a given ZIP code) search for “flu” G or “rash” or “poison” (used by GoogleFlu [Google, 2009]). · etherlands—primary-care data-monitoring sites (rotating sample of practices N are compensated for daily or weekly input of patient and document data on symptoms, use rates, medications, and the like). · inkage of the Health Resources and Services Administration’s Area Resource L File and Bureau of Labor Statistics data by county and metropolitan and mic- ropolitan statistical area to data provided by health departments. · onitoring of select data on alcohol sales and “driving under the influence” M arrest frequency. · Visit rates at local gyms. · Sales of exercise equipment or by sporting goods chains. · unding of an “aggregator” agency (such as the Bureau of Economic Analysis, F which collects data on the gross domestic product and national income and product accounts). · umber of public health students in a county (data available from the Society N for Public Health Education). It is the government public health infrastructure that has not become “hard- wired” into the wide array of data repositories. The government public health infrastructure needs tools and resources to use this wide array of data repositories. Data that many marketing firms access and use could be used to improve health. Innovative data-gathering techniques (see Box 2-2) will include partnering with other sectors. Building connections between public health, private data sources, and modeling enterprises would allow an evidence base to be built that, over time, will inform and empower decision- makers in influencing local social and environmental factors that strongly affect the health of communities. In many cases, data are unavailable because a source agency or busi- ness has never been asked, does not view the sharing of such data as its responsibility, and has not invested any effort in organizing the information in ways that make it easy for others, particularly local community leaders, to retrieve it. That circumstance offers a potential opportunity for public health agency or community-organization outreach and collaboration with business. Making available data that can be used to build the evidence base and supporting appropriate local action and policies can give rise to logistical, resource, and proprietary challenges. To ease burdens on a source agency or company, such as clinical care providers that already have exten-

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59 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE sive administrative and reporting responsibilities, public health agencies and their partners must be thoughtful about the indicators requested. Requested data need to have a highly plausible relationship to health, and requests for more extensive or proprietary information should be avoided whenever possible. For example, local public health leaders may need to know only the number of fast-food restaurants in a community; industry sources may be glad to provide a regularly updated data set that includes the location of the restaurants but may oppose releasing data about ingredients and sales of individual products. The HHS’s CHDI described earlier has made valuable information available to users through a common platform—the HHS Data Warehouse (HHS, 2010a). Although openness and accessibility are two worthy ends, the committee noted that the initiative includes no intention to provide sci- entific direction or harmony to the world of indicators, to develop standards or unified guidance for those who use the HHS data, or to incorporate a forward-looking dimension to the initiative—one that gathers input from users and other information initiatives to feed into the evolution and con- tinuous improvement of government data sets and elements to meet both the needs of the present and those of the future. When asked about the idea of direction or strategy, HHS staff associated with CHDI have explained that government data should go to users without any interpretation or modifica- tion (Park and Bilheimer, 2010). Although the committee understood the intent of that perspective—to allow exploration and innovation from many sources—it asserts that there is a vast difference between interpreting data with an eye toward advocating for a specific cause or policy and a kind of “translational” role of providing guidance on the use of data (for example, on the development and selection of indicators), on evolving needs for data, and on standards and methods for developing measures that can inform public health agencies and stakeholders working to improve population health. As discussed earlier, NCHS already receives the advice of two federal advisory committees, but their membership could be expanded to include representatives of other key government agencies (such as those in educa- tion, environment, and housing), more representatives of data users (in- cluding more public health officials or other practitioners), and researchers (including methodologists); likewise, their channels of communication with users, including policy analysts and decision-makers, could be enhanced to ensure an optimal level of end-user feedback. CONCLUDING OBSERVATIONS One of the persistent challenges to measuring health outcomes and one of the obstacles to any attempt to nurture standardization in the field is that many phenomena may be measured, but the field is much more ad-

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60 FOR THE PUBLIC’S HEALTH: MEASUREMENT vanced with respect to distal health outcomes (such as mortality and cancer incidence) and intermediate outcomes (or individual-level and behavioral determinants of health, such as smoking and obesity) than with respect to developing a knowledge base and valid, useful indicators of more upstream determinants of health (such as social cohesion, social support, the quality of housing, green spaces, and stress). Although the determinants-of-health model is not formally understood by most members of the general public, people everywhere know what kind of community they would want to live in: one that is safe, with good schools, decent and affordable housing, access to healthful food, essential retail services, high-quality clinical care, and social and policy conditions that facilitate the financial and physical means to access all of these. Show- ing that some of the things people want can also improve their health is an important message in furthering the health of communities. Describing the evidence that links healthy communities to better health outcomes—that is, referring not to communities with healthy people but to communities that have the ingredients to support good health—must become part of the national and local narrative about health. Measurement provides the critical information for that narrative. Measuring health-improvement processes and determinants with fi- delity, understanding their relationship to the nation’s well-being, and designing effective interventions all rest on harvesting information in a manner that is understandable, valid, timely, accurate, and integrated. The committee believes that measurement and reporting of information on health determinants and their associated outcomes can play an important role in galvanizing action by the myriad stakeholders that are in a position to influence population health.14 The committee recognizes that measure- ment is a necessary but not sufficient ingredient for advancing population health. Other ingredients include addressing conflicting values, resource constraints, and a lack of political will at various levels of government and among stakeholders. Achieving population health will require a fundamen- tal reconceptualization of health by the public and, similarly challenging, by decision-makers informed by coherent, relevant measures that can be monitored and acted on at the national, state, and local levels. The committee has found that improved coordination and enhanced (for example, modernized) and new capacities are needed to strengthen the nation’s population health statistics and information system. Federal statisti- 14 Allocating a greater proportion of the US health dollar for population health would align national action with mounting evidence that socioecologic factors—the social and physi- cal environment and government policies (protections, prohibitions, defaults, rewards, and incentives) that lead to particular levels of income, educational achievement, environmental exposure, and access to such necessities as nutritious food—have far greater effects on a na- tion’s health than do actions at the individual level.

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61 NEEDED: AN INFORMATION ENTERPRISE TO DRIVE KNOWLEDGE cal agencies, especially NCHS, have a central role to play, but collaboration and communication are needed among geographic levels and among sectors, given the wealth of information available in the private and nonprofit sec- tors that is often not integrated with government information to inform end users. The population health statistics and information system as a whole can play a more robust role in supporting the development of standardized indicator sets to demonstrate high-profile facts about the health of the na- tion, state, or community. However, the nation’s population health statistics and information system will need revitalized leadership, including leadership by the nation’s primary health statistics agency. That would require updating NCHS’s mission to broaden its activities (going beyond improvement in its ability to perform its statutory duties to conducting more research on and interacting with users about, and providing scientific guidance pertinent to, its statistical work and translating NCHS and other data into indicators), enhancing the agency’s capacities and ability to coordinate, as well as ex- panding its resources. Chapter 3 discusses in detail some solutions (including six recommendations) to the three sets of challenges just described. REFERENCES Academy Health. 2004. Improving Federal Health Data for Coverage and Access Policy De- velopment Needs. Washington, DC: Academy Health. AHRQ (Agency for Healthcare Research and Quality). 2007. National Healthcare Disparities Report. Rockville, MD: HHS. BARHII (Bay Area Regional Health Inequities Initiative), and PHLP (Public Health Law & Policy). 2010. Partners for Public Health: Working with Local, State, and Federal Agen- cies to Create Healthier Communities. Oakland, CA: BARHII and PHLP. Bilheimer, L. T. 2010. Evaluating metrics to improve population health. Preventing Chronic Disease Public Health Research, Practice and Policy 7(4). http://www.cdc.gov/pcd/ issues/2010/jul/10_0016.htm (July 4, 2010). Boufford, J. I., and P. R. Lee. 2001. Health Policies for the 21st Century: Challenges and Recomendations for the U.S. Department of Health and Human Services. New York: Milbank Memorial Fund. Braveman, P., and S. Egerter. 2008. Overcoming Obstacles to Health: Report from the Robert Wood Johnson Foundation to the Commission to Build a Healthier America. Princeton, NJ: Robert Wood Johnson Foundation. Braveman, P. A., C. Cubbin, S. Egerter, D. R. Williams, and E. Pamuk. 2010. Socioeconomic disparities in health in the United States: What the patterns tell us. American Journal of Public Health 100:S186-S196. Brownson, R. C., R. Seiler, and A. A. Eyler. 2010. Measuring the impact of pulic helath policy. Preventing Chronic Disease Public Health Research, Practice and Policy 7(4). http://www. cdc.gov/pcd/issues/2010/jul/09_0249.htm (July 4, 2010). Burd-Sharpe, S., K. Lewis, E. Borges Martins, A. Sen, and W. H. Draper. 2010. The Measure of America: American Human Development Report, 2008-2009. Brooklyn, NY: Columbia University Press. CDC (Centers for Disease Control and Prevention). 2010. Series of Reports from the National Health Interview Survey. http://www.cdc.gov/nchs/nhis/nhis_series.htm (November 15, 2010).

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