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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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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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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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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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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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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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253
INTERFACE
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