6

Interface of the Public Health System,
the Health Care System, and the
Non–Health Care Sector

INTRODUCTION

An aligned system with a strong interface among public health, health care, and the community and non–health care sectors could produce better prevention and treatment outcomes for populations living with chronic illness. In part, these systems are natural allies, as they often serve the same populations and see themselves as contributing to the public’s health, and they often share the burden of poor chronic disease outcomes. They could serve as powerful partners because only together can they achieve the goal of living well across populations and across chronic illnesses.

Imagining how public health, health care, and community-based organizations could align to improve outcomes in chronic disease led the committee to develop a conceptual model that frames the interaction among the factors and systems associated with chronic disease and its management. We examined how these various factors and systems produce better health for individuals and populations living with chronic illness. Many of these factors in the model impact health outside traditional health care settings and are understood at the population level rather than through an individual focus. Interventions at the population level can be implemented to prevent disease and promote health, and the committee was interested in the roles and effectiveness of organizations that do now or could in the future contribute to living well with chronic illness. This chapter reviews how public health, health care, and community and non–health care organizations approach the prevention and management of chronic disease and opportunities for improvement.



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6 Interface of the Public Health System, the Health Care System, and the Non–Health Care Sector INTRODUCTION An aligned system with a strong interface among public health, health care, and the community and non–health care sectors could produce better prevention and treatment outcomes for populations living with chronic ill- ness. In part, these systems are natural allies, as they often serve the same populations and see themselves as contributing to the public’s health, and they often share the burden of poor chronic disease outcomes. They could serve as powerful partners because only together can they achieve the goal of living well across populations and across chronic illnesses. Imagining how public health, health care, and community-based orga- nizations could align to improve outcomes in chronic disease led the com- mittee to develop a conceptual model that frames the interaction among the factors and systems associated with chronic disease and its manage- ment. We examined how these various factors and systems produce better health for individuals and populations living with chronic illness. Many of these factors in the model impact health outside traditional health care settings and are understood at the population level rather than through an individual focus. Interventions at the population level can be implemented to prevent disease and promote health, and the committee was interested in the roles and effectiveness of organizations that do now or could in the future contribute to living well with chronic illness. This chapter reviews how public health, health care, and community and non–health care orga- nizations approach the prevention and management of chronic disease and opportunities for improvement. 229

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230 LIVING WELL WITH CHRONIC ILLNESS PUBLIC HEALTH SYSTEM STRUCTURES AND APPROACHES Perhaps the programs that impact chronic disease that are least well understood lie within the constellation of agencies that serve the public’s health, working primarily across populations. Governmental public health agencies (GPHAs) are the primary providers of these programs. In many cases, community-based organizations (CBOs) also provide care. Govern- mental public health agencies have been and likely will be important in helping people live well with chronic disabling conditions and other chronic illnesses particularly in their shared role with clinical services to education and support the transition of care. Over the past 25 years, these agencies have moved from a focus on clinical care for the underserved to improving population health, and they have changed their role from doing to leading. The Institute of Medicine (IOM) helped to encourage this redirection of focus through two reports on the future of public health. The first report (IOM, 1988) focused almost exclusively on GPHAs. It documented their disarray and attributed it to their being torn between trying to improve population health and serving as care providers, of last resort, of clini- cal care to the underserved, including the uninsured, all with inadequate resources. The report emphasized both population health and leadership as it described three roles for GPHAs: (1) assessment—to “systematically collect, assemble, analyze, and make available information on the health of the community”; (2) policy development—to “serve the public interest in the development of comprehensive public health policies by promoting use of the scientific knowledge base in decision-making about public health and by leading in developing public health policy”; and (3) assurance—to “assure their constituents that services necessary to achieve agreed upon goals are provided, either by encouraging actions by other entities (private or public sector), by requiring such action through regulation, or by provid- ing services directly” (IOM, 1988). The second report (IOM, 2002) was much less focused on government and placed the role of GPHAs in a broader context as one of many public health partners with an important role in improving population health. These partners include communities, the health care delivery system, em- ployers and businesses, the media, and the academic community. Specific recommendations to GPHAs again emphasized leadership and included “1) adopting a population health approach that considers the multiple determinants of health; 2) strengthening the governmental public health infrastructure, which forms the backbone of the public health system; 3) building a new generation of intersectoral partnerships that also draw on the perspectives and resources of diverse communities and actively engaging them in health action; 4) developing systems of accountability to assure the quality and availability of public health services; 5) making evidence the

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231 INTERFACE foundation of decision making and the measure of success; and 6) enhanc- ing and facilitating communication within the public health system (e.g., among all levels of the governmental public health infrastructure and be- tween public health professionals and community members” (IOM, 2002). This redirection of GPHAs over the past 25 years—in content, from clinical care to population health, and in role, from doing to leading—has been echoed in the development of programs for chronic disease preven- tion. The Centers for Disease Control and Prevention (CDC) has led the development of these programs through its National Center for Chronic Disease Prevention and Health Promotion, initiated in 1989 (Collins et al., 2009). CDC’s initial focus was on state-level programs aimed at prevent- ing and controlling often-fatal chronic diseases. One of the first, and still largest, programs was a clinical prevention program, the National Breast and Cervical Cancer Early Detection Program, which promoted and paid for clinical screening for breast and cervical cancer for uninsured women (CDC, [e]). As of 2009, other fatal disease–oriented programs existing in all 50 states focused on diabetes and comprehensive cancer control (Collins et al., 2009). Less widespread programs focus on heart disease and stroke (Collins et al., 2009). From the beginning, CDC has also focused on state-level programs to measure and reduce leading chronic disease risk behaviors, in particular tobacco use, physical inactivity, unhealthy eating, and obesity (Collins et al., 2009; McGinnis and Foege, 1993). As of 2009, CDC-funded programs existing in all 50 states included the Behavioral Risk Factor Surveillance System and tobacco control (Collins et al., 2009). More recently, CDC has also initiated state-level programs focused on chronic disabling diseases, and one of the largest of these, begun in 1999, focuses on arthritis. CDC initially funded smaller arthritis programs in many states, ultimately 36; however, in 2008, after an external review, CDC began funding fewer states, now 12, with a minimum of $500,000 per year (CDC, [b]). These state arthritis programs “work to increase awareness that something can be done for arthritis and promote self-management education and physical activity” (CDC, [b]). An additional theme of the CDC programs in recent years has been a transition from state-level categorical programs aimed largely at com- munication and service provision to community-level integrated programs aimed more at policies and environments. This transition has accelerated with the recognition that many local GPHAs have had difficulty mounting chronic disease prevention (Frieden, 2004). The first such CDC program, Racial and Ethnic Approaches to Community Health (REACH), began in 1999 and has focused on community-level approaches to eliminating racial and ethnic disparities in chronic illnesses (CDC, [f]; Collins et al., 2009). Others that have followed include Steps, begun in 2003 and later

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232 LIVING WELL WITH CHRONIC ILLNESS transitioned to Healthy Communities, funding states and large and small communities to reduce fatal chronic diseases and related risk behaviors (CDC, [c]); ACHIEVE (Action Communities for Health, Innovation, and Environmental Change), begun in 2008 and focused broadly on reducing chronic diseases and risk behaviors in smaller communities (CDC, [c]); and Communities Putting Prevention to Work, begun in 2010 and focused on policy and environmental approaches to reducing obesity and tobacco use, through MAPPS (Media, Access, Point of decision information, Price, and Social support services) strategies (CDC, [a], [c]). These programs have had little or no explicit focus on arthritis or other chronic disabling diseases. An interesting new model from CDC is support for the development of work- force capacity for translating the CDC Division of Diabetes Translation (DDT) lifestyle intervention to be delivered by community organizations. This is a primary prevention initiative with CDC positioned in the role as a convener of commercial, CBO (e.g., the YMCA and others), and public health partners (diabetes prevention and control programs in 50 states) to scale the Diabetes Prevention Program (DPP) nationally. CDC funding through Emory University to run a national recognition center to publish standards for DDT delivery, data management of outcomes, and public reporting of results could motivate health payers and other third parties to offer payment to CBOs that offer the program (CDC, [d]; Diabetes Training and Technical Assistance Center, [a]). Going forward, the Affordable Care Act (ACA) promises to further redirect the focus of GPHAs and their work on chronic diseases. The avail- ability of near-universal health insurance may mean that GPHAs will need to focus even less on direct provision of care to the underserved. ACA- mandated coverage of clinical preventive services in health insurance should also decrease the need for GPHAs to deliver cancer screening and other preventive care. The ACA’s Prevention and Public Health Fund (PPHF) is slated to provide $2 billion a year that is heavily focused on chronic disease prevention. CDC is already using the PPHF to fund its Community Trans- formation Grants, a new set of integrated community-level programs with a focus on policy and environmental approaches to reducing risk behaviors. Even $2 billion a year in PPHF support to GPHAs, however, is grossly in- adequate for tackling fatal chronic diseases and their risk behaviors. As a comparison, the tobacco industry spends $10.5 billion a year on marketing its tobacco products (Campaign for Tobacco Free Kids, 2011). What is known about the effectiveness of many population-focused ef- forts to improve outcomes for individuals with chronic illness is somewhat limited. This has been a particular barrier to galvanizing changes in the fi- nancing and alignment of public health, health care, and community efforts.

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233 INTERFACE Structures that Support Population Health The structure and function of state and local public health agencies has been documented over time by public health–related associations, such as the Association of State and Territorial Health Officials, the National Association of County and City Health Officials, the National Association of Local Boards of Health, and the American Public Health Association. The data from these various surveys enumerate the workforce, financing, activities, and general structure of public health agencies. Data related to the structure and function of state-level public health agencies in 2001 and 2007 were compared to evaluate changes in program responsibilities. New areas of practice included bioterrorism preparedness, perinatal epidemiol- ogy, toxicology, tobacco control and prevention, violence prevention, can- cer and chronic disease epidemiology, and environmental epidemiology. At the same time that programs and services were increasing, funding for state public health agencies programs remained flat, with median state spending at approximately $29 per capita (Madamala et al., 2011). The extent to which these structures effectively impact outcomes of chronic disease is less well known. Much of what public health does to impact or prevent disease is structural in nature. Interventions, such as zon- ing regulations, building codes, infrastructure improvements, and policies, have been designed to address such factors as physical activity, exposure to tobacco, nutrition, and environmental hazards. These types of interventions have either not been widely implemented or evaluated because of lack of understanding or interest on the part of policy makers, lack of concern on the part of the business sector, and limited collaboration between public health agencies and organizations that develop structural interventions (Katz, 2009). Structures that are designed to assist in the evaluation of programs and interventions aimed at populations are essential to understanding which programs are of value in terms of outcomes and cost. Dilley, Bekemeier, and Harris (unpublished) completed a systematic review of the quality improvement literature related to interventions in public health. The types of quality initiatives included organization-wide efforts, program or service- related interventions, and administrative or management practice improve- ments. The authors concluded that the evidence for public health quality initiatives directed at improving public health practice and health-related outcomes is weak and the studies related to quality initiatives in public health contained a number of limitations, including the lack of a link to health outcomes. With the promise of a public health accreditation process (Public Health Accreditation Board) capable of reporting on a set of perfor- mance standards (National Public Health Performance Standards, [a]), the

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234 LIVING WELL WITH CHRONIC ILLNESS field may begin to move closer to outcome-level data at the public health organization level. Approaches That Support Population Health Setting priorities for population health requires a methodology for defining and measuring health status and a framework for intervention. One of the challenges for public health agencies in directing and focusing efforts has been the multiple and varied methods derived over time to cre- ate interest on the part of the public and policy makers in the economic, environmental, social, and ethical impacts of disease. An example of prior- ity setting that could influence the focus of public health on chronic disease prevention in selected areas and the alignment of public health and health care is the CDC report Winnable Battles (CDC, [g]). These priority areas with associated strategies could result in large-scale impact on improv- ing health throughout the nation. Another example of a methodology to set health priorities emerged from Wisconsin’s Division of Public Health (2010). The Division of Public Health developed a four-step process to identify major health conditions, prioritize those health conditions, identify risk factors, and prioritize the risk factors. The process aligned the mag- nitude and severity of major health conditions with their associated risk factors. The resulting report, Healthiest Wisconsin 2010: A Partnership Plan to Improve the Health of the Public (2010), contains focus areas for health, including policy initiatives, collaborative partnerships, necessary public health resources and infrastructure, needed research, and the data required to track progress. Indicators and Measurement of Population Health Measurement of population health status has traditionally been the role of public health agencies as part of their assessment and assurance func- tions. The infrastructure to measure population health and the tools and methods used to gather and analyze data are well described in the literature. Surveillance in most public health agencies is a high-priority practice, as it often drives decisions about the allocation of resources and programming. However, some activities in public health are important to the health of the public but remain difficult to measure. These include the quality of services and the performance of public health agencies. Thacker and col- leagues (2006) determined that beyond the current measures of mortality, morbidity, cost, and functional status are activities that, while difficult to measure, are essential to public health. The authors note when the burden of a disease or event on the population’s health is substantial but the meth- ods to measure the impact are difficult.

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235 INTERFACE A recent review of the U.S. Department of Health and Human Services (HHS) national agenda for Healthy People 2020 resulted in the renewal of a set of topics, indicators, and objectives for the nation’s health. The list of leading indicators includes chronic disease, with specific objectives for reducing coronary heart disease deaths, reducing the proportion of persons in the population with hypertension, and reducing the overall cancer death rate (IOM, 2011). This determination of a set of indicators for the nation can help set a course for public health agencies focused on the prevalence and mortality of specific chronic diseases and serve to provide opportunities for public health and health care to collaborate. Responses to Emerging Population Health Threats The response of public health to chronic disease has been varied across the nation depending on the infrastructure, workforce, and partners avail- able to the agency and whether they have the resources to pursue interven- tions at all levels of risk. Although work continues on the development of the evidence base for interventions aimed at risk factors associated with chronic disease, public health efforts to pursue the prevention of disease are complicated by the fact that they must respond at the policy and societal levels, where interventions to modify environments and laws are most ef- fective; at the community level, where public awareness, community cam- paigns, and school-based and workforce interventions are most effective; and at the individual and family levels, where clinical preventive services are delivered (Halpin et al., 2010). Rare is the public health system that has the resources to address each of these levels effectively all of the time. As policy makers have focused on the implementation of various fea- tures of the Affordable Care Act, the public health community may see this as an opportunity to refocus efforts on interventions at the population level essential to the prevention of chronic disease and reducing their role in interventions aimed at the management of chronic disease. The Afford- able Care Act has some provisions for the development of programs related to healthier nutrition choices, reduction of risky behaviors, and increasing healthy behaviors (Compilation of Patient Protection and Affordable Care Act, 2010). Orza (2010) argues that health reform efforts have not focused primarily on health care but rather on those dimensions of health—personal behavior, genetics, education, economic resources, neighborhood condi- tions, and the global and local environment—that are dominant contribu- tors to health status. Faced with the need to define, measure, and report to policy makers outcomes related to cost-effectiveness, public health has had a limited voice in the development of framing reform. Orza (2010) described the role of public health in the prevention of chronic disease and other diseases as “community population-based” and focused primarily on

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236 LIVING WELL WITH CHRONIC ILLNESS the alteration of community and environment to promote healthy lifestyles; development opportunities for screening; and, when needed, promoting self-care and disease management at home, work, and school. The author clearly distinguished between the roles of clinical prevention and commu- nity-level prevention. Alignment Among Structures and Approaches Aligning public health with potential and current partners, including community-based agencies, health care systems, voluntary health-related organizations, and policy-making bodies, has policy and political dimen- sions. To be a fully participating partner in the debate around health reform, it will take political and collective action to realize cost-effective strategies for reducing chronic disease; the transition of safety net services to the health care sector; and the strengthening of public health infrastruc- ture to respond to the heightened needs for measurement, surveillance, and population strategies to reduce the impact and development of chronic disease. Gostin and others (2004) discussed strategies for improving the public’s health from the perspective of past and current IOM reports on public health. They cite the report The Future of the Public’s Health in the 21st Century, which describes the need to strengthen the governmental public health infrastructure, engage nongovernmental actors in partner- ships for public health, and improve multiple conditions for the public’s health (IOM, 2002). The authors stress that this agenda may be seen as an overreach on the part of a public health agenda that strives to link causal pathways between determinants of health and disease. These links are not well understood or researched. At the same time, waiting until definitive evidence exists before public health is assured that poor health outcomes will respond to societal changes would result in undue delay in implement- ing health policies directed at socioeconomic conditions. The literature reporting efforts to structurally align public health and health care to achieve a balance among population and individually based interventions to impact chronic illness has primarily come from work in Canada. These reports described the literature on collaboration between primary care and public health, a framework for the prevention and man- agement of chronic disease, and the structural integration of public health and primary care. Although not developed as a set of evidence-based in- terventions at the system level, they nevertheless point to an important direction. A report to the Canadian Health Services Research Foundation (Martin-Misener and Valaitis, 2008) reviewed existing literature on struc- tures and processes for successful collaboration among public health and primary care, outcomes from collaboration among these two systems, and factors related to successful collaboration. Results of this review showed

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237 INTERFACE that collaboration between public health and primary care has grown since the 1990s, especially in Canada and the United Kingdom. The majority of the collaboration occurred in urban settings, and its purpose was primarily to improve quality and cost-effectiveness; identify community health prob- lems through clinical practices; and improve health care through collabo- ration focused on policy, training, and research. The Cochrane Database of Systematic Reviews (Hayes et al., 2011) reported a limited number of studies with results on the impact of local partnerships on health. Almost all of the 11 comparative studies reviewed had methodological problems, and none showed evidence of improvement in health outcomes due to col- laboration among governmental and health agencies. The Canadian Ministry of Health and Long-Term Care’s Ontario Framework (2007) is based on the Chronic Care Model and the Expanded Chronic Care Model described earlier in this chapter. The framework brings together efforts around developing individual skills necessary for health, the reorientation of health services to a stronger focus on prevention and health promotion, the development of public policy that promotes health and prevents disease, the creation of environments that support health, and extra strength to community action. These are common themes in the majority of the literature that call for a stronger focus on prevention and management of chronic disease. Rowan et al. (2007) report some evidence suggesting that models that integrate primary care and public health have successfully addressed indi- vidual and community-based approaches to influence population health. The prominent link among these systems is through data and surveillance systems poised to detect health events and changes in a variety of deter- minants of health and to rapidly communicate health information across sectors. The models ranged in development and focus from planning to integrate to fully integrating and evaluating basic chronic disease preven- tion into primary care settings. The models reviewed in the report were primarily outside the United States except for the Community-Oriented Primary Care (COPC) model. Iliffe and Lenihan (2003) reviewed COPC ef- forts to combine a primary care and a public health perspective in delivering care to communities. Much of the experience of COPC has been with an underserved population through targeting high-priority services to a select population. The results of this review revealed that participation on the part of community organizations has not been highly active or influential in developing the COPC targeted programs. The efforts have largely been through action in the health care sector. This is particularly true in examples in studies of COPC programs in North America. The major criticism related to efforts in the United States to align public health and primary care is that they were focused on balancing responsibilities between medical care and public health rather than true alignment (Iliffe and Lenihan, 2003).

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238 LIVING WELL WITH CHRONIC ILLNESS Although the literature supports new models and approaches to the prevention and management of chronic disease, much of it is not specific to chronic disease, and few of the models have been tested. A few emerging community-based models of care for people with multiple chronic condi- tions (MCCs) is described in this report (see Appendix B). HEALTH CARE SYSTEM APPROACHES The health care system has not benefited from or pursued in a compre- hensive way incentives to align with public health and community-based organizations in developing approaches and structures for the prevention and management of chronic disease. Given what is known about the contri- bution of nondisease determinants to health and disease, one would expect a comprehensive system of primary and tertiary care interacting continu- ally with the community, social, and physical environments and the public policy structure in seeking improved access, quality, and cost-effectiveness in the care and prevention of chronic disease. Instead, the current approach is often fragmented, costly, inefficient, difficult to access, and, at times, of poor quality. This has been documented extensively in the IOM Quality Chasm series (2000–2007), an 11-report series that includes Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001) and such workshops as The Healthcare Imperative: Lowering Costs and Improving Outcomes: Workshop Series Summary (IOM, 2010). One of the messages in Crossing the Quality Chasm is that “the goals of any payment method should be to reward high-quality care and to permit the development of more effective ways of delivering care to improve the value obtained for the resources expended” (IOM, 2001). System Design The design of health care systems can have tremendous impact on the costs and quality of care of persons living with chronic illness. The current health care system in the United States was designed to address acute disease rather than chronic disease. Health care systems are currently organized to respond to patients’ acute illnesses by relying primarily on patients to contact the health care system when they have a health problem or concern and on physicians to provide curative treatment with little or no patient participation in the process. Clearly these features are not sup- portive of the type of care needed for most chronic diseases. The quality of care of chronic diseases could be improved if health sys- tems were designed on the basis of the characteristics and needs of patients with chronic illnesses (Canadian Ministry of Health and Long-Term Care,

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239 INTERFACE 2007). The Ontario Framework emphasizes that “a more responsive ap- proach to chronic disease would recognize that chronic disease: • Is ongoing, and therefore warrants pro-active, planned, integrated care within a system that clients can easily navigate; • Involves clients living indefinitely with the [illness] and symptoms, requiring those persons be active partners in managing their condi- tion, rather than passive recipients of care; • Requires multi-faceted care which calls for clinicians and nonclini- cians from multiple disciplines to work closely together, to meet the wide range of needs of the chronically ill; and • Can be prevented and therefore warrants health promotion and disease prevention strategies targeted to the whole population, especially those at high risk for chronic [illness].” It should also be noted that individuals with chronic illness may have complications that can be prevented, and they are therefore able to live well with the support of health care, public health, community engagement, and self-management strategies. Considerable evidence already exists about ways to prevent chronic illnesses and to manage the care of those who already have them. As described earlier in this chapter, most of these pro- grams and policies are based on components of the Chronic Care Model, which summarizes the basic elements for improving care in health systems at the community, organization, practice, and patient levels. Ensure Access to Affordable Health Care Fundamental to the implementation of the Chronic Care Model is hav- ing a health care system that is designed to provide access to affordable care for all persons with chronic illnesses. According to a 2010 survey by the Commonwealth Fund (Collins et al., 2011), an estimated 52 million adults in America were uninsured at some point during 2010, up from 38 mil- lion in 2001. The prevalence of chronic illness is likely to be higher among those without insurance, especially since adults in families with low and moderate incomes are the most likely to be uninsured. In the 2010 survey, 54 percent of low-income adults (under $22,050 for a family of four) and 41 percent of moderate-income adults ($22,050 to $44,100 for a family of four) were uninsured for some time during the year, compared with 13 percent of adults with higher incomes.

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246 LIVING WELL WITH CHRONIC ILLNESS management for worksite cardiovascular risk reduction was more effective in reducing cardiovascular risk scores in those who received an HRA with- out disease management (Maron et al., 2008). Another well-designed trial evaluated the efficacy and cost-effectiveness of a 6-month worksite health intervention consisting of health education, nutritional counseling, smoking cessation counseling, physical activity promotion, and selected physician referral versus usual care among 308 employees. Health risk status was determined at baseline and after the intervention program, and total medi- cal claim costs were calculated for all participants during the year before and after intervention. Significant improvement was found in quality-of- life scores, body fat, high-density lipoprotein cholesterol, diastolic blood pressure, health habits, and total health risk. Of employees identified as high risk at baseline, more than half of them were downgraded to low-risk status, and the average employee annual claim costs decreased by almost half for the year after the intervention whereas control employees’ costs stayed the same (Milani and Lavie, 2009). There is very scant evidence of worksite programs targeted at people living with chronic illnesses, such as diabetes and arthritis. Although the feasibility of the Diabetes Prevention Program has been evaluated in a pre-post design (Aldana et al., 2005; Diabetes Prevention Program Group, 2002), there is limited evidence from well-controlled studies of its imple- mentation in worksites. The only evidence of such programs was a large quasi-experimental study of an employer-sponsored Internet-based nutrition program for employees with cardiovascular risk factors, including diabetes (Sacks et al., 2009). In both programs, the interventions led to significant improvement in cardiovascular risk reduction and diabetes outcomes. YMCA The YMCA is one of the largest not-for-profit community service organizations in the nation, serving thousands of communities. Through its health and well-being programs, the YMCA plays a significant role in health promotion and chronic disease prevention. The largest program at the YMCA to date is the CDC’s Pioneering Healthier Communities (PHC) program, which was created in collaboration with the YMCA to convene representatives from local government and the public health and private sectors. The focus of PHC is on changing the environment in a way that reduces community barriers for healthy living. Similar to worksite wellness programs, its effects on the quality of life and important health outcomes of people living with chronic illness are largely untested.

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247 INTERFACE Faith-Based Organizations There is growing evidence that wellness programs targeted at lifestyle behaviors in faith-based organizations are effective in improving weight loss and increasing intake of fruits and vegetable and levels of physical activity (Duru et al., 2010; Resnicow et al., 2001; Rucker-Whitaker et al., 2007), particularly for African Americans, given the central role that churches play in the lives of many. However, similar to worksite wellness programs, few of these interventions, often delivered by community health workers, target people living with chronic illness, such as diabetes and arthritis (Samuel- Hodge et al., 2009). One such program is the PREDICT project, which evaluated the effectiveness of a culturally appropriate, church-based diabe- tes self-management program among about 200 congregants with diabetes in 24 African American churches. At the end of the primary outcome assess- ment at 8 months, participants who were randomized to the intervention, consisting of 1 individual counseling visit, 12 group sessions, and monthly phone contacts, had lower HbA1c and higher diabetes knowledge and quality of life compared to those in the usual care who received standard educational pamphlets by mail (Samuel-Hodge et al., 2009). Senior Centers Similar to other community sites, the feasibility of interventions tar- geted at lifestyle behaviors among the physically active elderly in senior cen- ters is well proven (Fernandez et al., 2008; Sarkisian et al., 2007). In recent years, multipurpose senior centers have proliferated across the country and constitute a source for community-based social, medical, geriatric programs to help older Americans retain their independence and a high quality of life. Some initiatives and programs include health and wellness education, including health screenings; senior fitness programs; outreach services, pro- viding an array of services like transportation; meals and nutrition services; employment counseling; social networking opportunities; case management services; legal services; volunteer opportunities; and access to providers to render primary care services. However, the effectiveness of these programs on seniors living with chronic illnesses remains largely untested. Community Health Centers Community health centers have been the source of primary and mental health care for underserved communities since the 1970s. HHS (Hing and Hooker, 2011) reported that community health centers average 31.1 million visits annually, and the majority of these are by people who are poor or insured through public programs (Medicaid, State Children’s Health Insur-

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248 LIVING WELL WITH CHRONIC ILLNESS ance Program). It is also of note that 21 percent of these health care visits are to nurse practitioners working in community health centers. Although nurse practitioners tend to see younger patients, nurse practitioners saw 39 percent of the patients with one or more chronic illnesses (Hing and Hooker, 2011). Voluntary Health Agencies Voluntary health agencies play a vital role in the prevention and treat- ment of chronic disease. These agencies tend to focus on a specific disease or group of diseases and contribute to prevention, management, and treat- ment in a variety of ways: • Providing services to individuals and families affected by chronic illnesses • Funding scientific research and promulgating scientific guidelines • Educating professionals and the public • Supporting quality improvement programs • Advocating for laws, policies, and regulations that impact individu- als and their families living with a particular illness Thousands of voluntary health agencies exist in the United States. Table 6-1 describes the mission and a sample of the activities of just three vol- untary health agencies: the American Cancer Society, the American Heart Association, and the Arthritis Foundation. TABLE 6-1 Three Voluntary Health Agencies Agency Year Est. Mission Activities American 1913 To eliminate • hoose You, an initiative that C Cancer “cancer as a major encourages women to eat right, Society health problem get active, quit smoking, and get by preventing regular health checks to fight cancer, saving lives, cancer and diminishing • eneration Fit, a program that G suffering from promotes more physical activity cancer through and healthier eating for children research, education, between ages 11 and 18 advocacy, and • eeting Well, a tool that helps M service” companies organize healthy meetings and events • ancer Survivors Network, a C network that offers support to cancer survivors

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249 INTERFACE TABLE 6-1 Continued Agency Year Est. Mission Activities • ancer Prevention Study-3 (CPS-3), C a prospective study of 300,000 people that aims to understand cancer prevention • merican Cancer Society Cancer A Action Network (ACS CAN), a cancer advocacy network American 1924 To “build healthier • o Red for Women, an initiative G Heart lives, free of designed to raise awareness about Association cardiovascular the impact of heart disease on diseases and stroke” women • tart! Movement, an initiative that S promotes walking for a healthier lifestyle • eart 360, an internet tool that H gives people the ability to track their weight, physical activity, cholesterol, blood pressure, and other factors that contribute to heart health • et With the Guidelines, a program G to ensure consistent application of American Heart Association/ American Stroke Association scientific guidelines in the in-patient setting • ou’re the Cure, a cardiovascular Y disease and stroke advocacy network Arthritis 1948 To “improve lives • et’s Move Together, a program L Foundation through leadership that promotes physical activity in prevention, to prevent and minimize arthritis control and cure of problems arthritis and related • rthritis Today, a magazine focused A diseases” on issues related to arthritis • rthritis Internet Registry, a study A in which people with arthritis fill out questionnaires to advance arthritis science • steoarthritis, rheumatoid arthritis, O and juvenile arthritis research

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250 LIVING WELL WITH CHRONIC ILLNESS CONCLUSION Patients spend a relatively minuscule amount of time at their physician’s office; most time is spent at work and community-based settings like the YMCA, Senior Centers, faith-based organizations, and other recreation set- tings. This makes implementation of lifestyle interventions in these settings appealing especially given the proven efficacy of these interventions. These interventions mitigate the impact of chronic diseases on health outcomes for people living with chronic illnesses. Most of the literature related to population-based approaches to health improvement are not specifically focused on chronic disease and are limited in their evidence that these ef- forts produce the desired outcomes. Although numerous studies have evaluated the impact of worksite well- ness programs and lifestyle interventions on health outcomes, the efficacy of these studies is mixed and largely targeted at healthy employees, with only a handful of studies focused on people living with chronic illnesses. The few worksite programs that targeted people living with chronic illnesses were of short duration and small effect sizes. Also, the sustainability of worksite programs was not evaluated in these studies. Effective programs include those that targeted healthful behaviors rather than important health outcomes such as cardiovascular risk reduction or pain management. Similarly, the literature reviewed on community-based programs re- veals three important issues. First, there is ample evidence that wellness programs, like lifestyle interventions, are widely disseminated in commu- nity sites without adequate evaluation of their effect on quality of life and important health outcomes in persons living with chronic illnesses. Despite the scanty evidence that the interventions are targeted at people living with chronic illnesses, the implementation foundation for these programs does exist as reviewed in this chapter with regards to the YMCA, worksites, and faith-based organizations, especially when implemented by community health workers. For example, the YMCA has existing programs to target lifestyle interventions for cancer survivors, and it is increasingly involved with development of programs for other aging conditions such as arthritis. Given the above, there is a crucial need to utilize community sites as imple- mentation platforms for interventions targeted at improving quality of life and other important health outcomes in people living with chronic illnesses. Second, there are little or no data on cost-effectiveness of health improve- ment programs at community sites other than worksites. Community-based programs tend to be sponsored by various stakeholders, which makes it difficult to assess their cost-effectiveness. Finally, reimbursement issues are also less well addressed, including the need for clarification regarding

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251 INTERFACE sponsors of community-based care. In addition, models to align population based public health interventions with health care are largely untested. The type of payment system can have a significant effect on the effectiveness of chronic disease prevention and control services in health care systems. Regardless of the type of payment system, however, few systems provide incentives for chronic disease prevention or improvements in the health outcomes in patients with chronic illnesses. For example, memberships for YMCA clubs or other exercise facilities may be steep for some segments of the population, making generalizability of wellness programs at such sites difficult to interpret. There is a huge potential to leverage the infrastructure of wellness worksite programs and community-based sites like the YMCA and senior centers with regard to implementation of effective interventions and their sustainability. These organizations can serve as sites for community health workers to deliver evidence-based self-management interventions targeted at people living with chronic illnesses. In the context of the Frieden pyramid of the factors that affect health, ready access to community-based organiza- tions equipped with well-trained staff that can counsel and educate people living with chronic illnesses on recommended lifestyle changes and self- management interventions would certainly yield a far greater public health impact than the individual approaches in health care settings would. Such effort would of course require an efficient delivery of information between health care and non–health care entities and an appropriate reimbursement incentive, which can potentially be incorporated into the patient-centered medical home model. This could motivate health payers and other third parties to offer payment to those community-based organizations that of- fer the program. The discussion in this chapter continues to address the statement of task question presented in Chapter 4, specifically, which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability? • What is the evidence on effectiveness of interventions on these outcomes? • To what extent do the interventions that address these outcomes also affect clinical outcomes? • To what extent can policy, environmental, and systems change achieve these outcomes?

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252 LIVING WELL WITH CHRONIC ILLNESS RECOMMENDATIONS 13–15 The committee provides three recommendations. Recommendation 13 The committee recommends that HHS agencies and state and local government public health agencies (GPHAs) evaluate existing (e.g., chronic care model, expanded chronic care model), emerging and/or new models of chronic disease care that promote collaboration among community-based organizations, the health care delivery system, em- ployers and businesses, the media, and the academic community to improve living well with chronic illness. • CDC and state and local GPHAs should serve convening and facilitating functions for developing and implementing emerging models. • HHS agencies (e.g., the Health Resources and Services Administra- tion, the Centers for Medicare and Medicaid Services, the Admin- istration on Aging, CDC) and GPHAs should fund demonstration projects and evaluate these emerging models. • Federal, private, and other payors should create new financing streams and incentives that support maintaining and disseminating emerging models that effectively address persons living well with chronic illness. Recommendation 14 The committee recommends that CDC develop and promote, in part- nership with organizations representing health care, public health, and patient advocacy, a set of evidenced-based policy goals and objectives specifically aimed at actions that decrease the burden of suffering and improve the quality of life of persons living with chronic illness. Recommendation 15 The committee recommends that federal and state policy makers de- velop and implement pilot incentives programs for all employers, par- ticularly low-wage employers, small businesses, and community-based organizations, to provide health promotion programs with known effectiveness for those living with chronic illness.

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