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White paper
The Potential of a Health Scorecard
for
Promoting Health Literacy
Talya Miron-Shatz, PhD, MA
Commissioned by Global Health, Johnson & Johnson
To be presented April 26, 2010, Washington, D. C.
at the Health Literacy Action Metrics Workshop:
Enhancing individual, systems, and policy maker quality performance
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Health Literacy Action Metrics Workshop:
Enhancing individual, systems, and policy maker quality performance
Franklin Apfel, MD, Managing Director, World Health Communications Associates
Lawrence G. Mondschein, Ph.D., Johnson & Johnson Government Affairs & Policy
Ruth M. Parker, MD Emory University School of Medicine
Scott C. Ratzan, MD, MPA, MA, Johnson & Johnson Government Affairs & Policy
James M. Sherry, MD, Ph.D., Professor and Chair of the Department of Global Health,
George Washington University
William A. Smith, Ed.D., Senior Fellow, Innovations Management, Academy for
Educational Development
Myrl Weinberg, MA, President, National Health Council
Michael S. Wolf, Ph.D, MPH Feinberg School of Medicine, Northwestern University
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TABLE OF CONTENTS
Executive Summary 4-9
Health Literacy 10-14
Definition 10-11
Prevalence 11-12
The Cost of Low Health Literacy 12-14
Barriers to Health Literacy 14-17
Lack of statistical training, knowledge and skills 15-16
Social construction of roles– 16
should a patient pursue medical information?
Non-standardized reporting of health information 16-17
The Prevalence and Cost of Chronic Disease 17-21
Box 1 Number of Deaths for Leading Causes of Death (US) 19
Box 2: Diabetes facts 21
Preventing and Controlling Chronic Disease through Health Literacy 23-23
Scorecards—A Simple Solution 23-27
A Definition and a Suggested Health Scorecard 23
Box 3: The proposed Health scorecard ―Take Care – 7 Steps
for Better Health‖ 26
Why Should Scorecards Work? Theoretical Support 27-31
Why Should Scorecards Work? Empirical Support 31-32
Positive ―Side Effects‖ of Scorecards 32-38
Creating a mental model of health 33-34
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Promoting patient participation 34-35
Increasing the participation of low health-literacy groups 35
Promoting trust in the healthcare provider and the health system 35-36
Facilitating a health and well-being yardstick and footprint 36-37
Figure 1: Benefits of Health Scorecard 38
Considerations in Creating the Scorecard 38-43
Who is the health scorecard intended for? 38-39
Is the general population interested in a health scorecard? 39-40
Why use numbers to convey information on health? 40-41
Adding an emotional subtitle 41-42
All-or-none vs. incremental scores 42-43
Potential Hurdles and Criticism 43-46
Is a health scorecard oversimplified? 43-44
Presenting scorecard information in a stratified manner 44-45
Patient discrimination based on scorecard results 45-46
Some patients may not understand the scorecard 46
For Future Development 47
Conclusions 47-49
References 50-60
Appendix: Converging Evidence for a Health Scorecard 61-70
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Executive Summary
This report proposes a scorecard to address two major challenges of the
American and global health systems: health literacy and chronic disease. These
are inextricably linked, so that an intervention alleviating their burden needs to
take both of them into account. A health scorecard, combining important
indicators of medical state, alongside lifestyle choices, can assist large
populations, including those with low health literacy, to better manage their
health, thereby preventing or controlling chronic disease, and reducing costs.
Other significant benefits of the scorecard are engaging patients in health-related
decision making and legitimizing patients taking charge of their health, as mental
representations of health become clear and coherent.
A recent report (2008) by the American Medical Association (AMA)
documented that over 89 million American adults have limited health literacy
skills. Improving the health literacy of the population is one of the stated goals of
Healthy People 2020 (Health Communication/Health Information Technology
Objectives). Chronic disease – obesity, cardiovascular disease, stroke, diabetes,
and asthma – has consistently been on the rise, and is one of the few central
risks that threaten global economy and development over the next decade. The
Milken Institute (2007) defines avoidable costs of diseases as those that could
have been prevented with reasonable improvements in behavior and treatment.
They estimate the economic impact of heart disease in the United States (in direct
health costs, as well as indirectly, in lost productivity) at slightly over 200 billion
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dollars. The economic impact of hypertension is a little under that. In both cases,
more than half the impact is avoidable.
Health literacy is at the center of both preventing chronic
disease and adhering to treatment plans once diagnosed. To illustrate, obesity-
related conditions account for 9.1% of American medical spending, or $147
billion. The additional expenses of diabetes and other ailments which are more
common in an overweight population could be addressed with health literacy
interventions. The confluence of disease and low health literacy also has social
implications: Health disparities and inequalities attributed to chronic diseases are
on the rise among those patients who have low health literacy.
A health scorecard is a user-friendly, efficient tool outlining what it means
to optimize one’s health, in terms of medical testing and lifestyle behaviors. A
scorecard aggregates medical information, allowing for a quick assessment of
where one stands medically, as well as for follow-up, and for comparisons over
time and across providers, insurers, even nations. Despite the considerable
potential benefits of a health scorecard, none exists today that is broadly
accepted, applied, and disseminated.
The objective of this was to determine whether a health scorecard could
promote health literacy in the sense of helping people ―process and understand
basic health information…needed to make appropriate health decisions‖ (IOM,
2009; Ratzan & Parker, 2000). Theoretical and empirical evidence suggests that,
given the complexity of multi-faceted diseases, a scorecard can provide a simple
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yet effective means of promoting health literacy, and, consequently, increasing
health.
The report recommends developing a scorecard that will be relevant
primarily to chronic diseases, and will include medical and behavioral measures,
the monitoring of which is associated with chronic disease prevention and
control.
What will the health scorecard do: The health scorecard will display a person‘s
ratings on several basic health measures that are associated with preventable disease.
These include BMI, blood sugar and cholesterol levels, and behavioral factors such as
smoking and exercise. The scorecard will provide information on each health measure,
allowing users to keep track of their health and monitor risk factors. The most prominent
feature of the health scorecard is its ability to capture one‘s overall health (or
preventable disease risk) with a single, easily comprehensible number, and with clear
affective implications.
What will be the benefits of the health scorecard: The obvious benefit of the health
scorecard will be in improving major health indicators for reasons, detailed below. The
report further elaborates on having the scorecard help overcome barriers to health
literacy through developing coherent mental models and constructing an active patient
role, encouraging patient participation
Benefits of the health scorecard on an individual level:
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1. A health scorecard, especially when it generates a single number, provides an
easy means for people to keep track of their health.
2. A health scorecard will provide a rating that will be easily comprehended and will
also have clear affective meanings. Compare a score with, for example, an LDL
cholesterol level of 170, which is not immediately interpretable as good or bad.
3. A health scorecard that provides a comprehensive list of medical indicators and
behaviors comprising ―health‖ helps patients create a mental model of what
health means, and how various diseases and lifestyle choices are connected.
4. Having the scorecard reflect the degree to which one subjects him or herself to
preventable diseases will highlight the potential health losses associated with
various health conditions, and people will be more motivated to initiate a
change.
5. Linking the health scorecard rating to fluctuations in health measures, particularly
ones that are actionable, provides an incentive to improve those, so as to see
the improvement in the health scorecard rating.
Benefits of the health scorecard on a national level:
1. A health scorecard, especially when it results in one number, allows anyone who
is interested in monitoring and promoting health, and healthy behavior, whether
insurers, governments, agencies, pharmaceutical companies, or global health
organization officials to keep track of health indicators at every level. This will
allow for detecting areas of either excellence or need.
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2. An agreed-upon and broadly disseminated health scorecard will allow each city,
county, and state to know its ―health‖ ranking, both relative and absolute. This
provides a benchmark and an incentive for improvement.
3. An agreed-upon and broadly disseminated health scorecard will translate to a
unified national concept of health that can be accepted and hopefully pursued.
Who should use the scorecard: The scorecard will be available to all individuals
(adults), and will also provide their doctors with a quick way of arriving at a health status
assessment. Future developments may include a variation of the health scorecard for
women, including, for example, mammogram and PAP smear tests, for the appropriate
age groups. Elderly are another target group. Even children could benefit from their own
health scorecard. Similarly, when globally adopted, the scorecard might be tailored to
the unique prominent and preventable health risks of each country.
What will go into the health scorecard: Deciding what goes into a health scorecard to
be broadly disseminated is a major responsibility. For the sake of moving forward the
scorecard idea in an action-driven way, we list several tentative criteria that should be
included in the scorecard. Most of these were included in a recent IOM presentation
(Ratzan, 2009), though for some indicators (e.g., cholesterol), a target value was left
out:
• Fasting Blood Sugar (diabetes)
• Body Mass Index (obesity)
• Cholesterol (cardiovascular disease)
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• Blood pressure (hypertension)
• Smoking/tobacco use (cancer and CVD)
To compile those indicators, this report incorporates materials from several
sources, both from the medical literature, and from authoritative online tools for chronic
disease prevention and calculation. Immunizations and screenings are also important,
as are healthy nutrition and moderate alcohol consumption. The Appendix details the
medical evidence and recommendations supporting the tentative criteria included in the
scorecard. It suggests that, despite divergence of medical views, guidelines and
recommendations, a convergence can be found, such that will help push forward the
implication of the ideas hitherto presented.
The health scorecard responds to the IOM Committee on Preventing the
Global Epidemic of Cardiovascular Disease: Meeting the Challenges in
Developing Countries (Fuster & Kelly, 2010) call for a ―uniform, parsimonious and
handy way of measuring and promoting health.‖ While the suggested medical
and lifestyle content of the proposed health scorecard is by no means binding,
the Appendix demonstrates that health information from various sources often
converges. Thus, indicators can be agreed upon and standardized for the
purpose of targeting broad populations. The potential benefits of a scorecard, as
the report outlines, alongside the reasoning why a scorecard would be effective
in achieving these benefits, should provide a motivation for developing a health
scorecard to curb chronic disease and promote health literacy.
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Health Literacy
Definition
Several definitions exist and will be listed below, as health literacy is a broad
social concept, although key components converge and reappear in most definitions.
The Institute of Medicine (IOM) defines health literacy (2004) as ―the degree to which
individuals have the capacity to obtain, process and understand basic health information
and services needed to make appropriate health decisions.‖ Ratzan and Parker (2000)
suggest that health literacy also involves ―the competence to use such [health]
information and services to enhance health.‖ The WHO (2009) definition reads: ―Health
Literacy has been defined as the cognitive and social skills which determine the
motivation and ability of individuals to gain access to understand and use information in
ways which promote and maintain good health.‖ The AMA (2008) defines health literacy
as ―the ability to obtain, process and understand basic health information and services
needed to make appropriate health decisions and follow instructions for treatment.‖
The U.S. Department of Health and Human Services (2010) included improved
consumer health literacy as Objective 11-2 in its Healthy People 2010 report. Health
literacy is essential for accomplishing one of the most influential ideas in medicine over
the past decades, that of shared decision making. Zarcadoolas, Pleasant & Greer
(2006) advocate an expansive view of health literacy. They define it as ―the wide range
of skills, and competencies that people develop over their lifetimes to seek out,
comprehend, evaluate, and use health information and concepts to make informed
choices, reduce health risks, and increase quality of life.‖ They further specify four
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domains of health literacy: a) fundamental literacy (which would include the traditional
view of literacy according to the IOM definition); b) science literacy; c) civic literacy,
which covers the domains of information acquisition and information source; and d)
cultural literacy, which includes the ability to recognize, understand, and use the
collective beliefs, customs, world view, and social identity of diverse individuals.
Scientifically literate individuals appreciate fundamental scientific concepts and
processes and have an understanding that technological relationships are often
complex and can change rapidly. Scientifically literate individuals also understand that
there is an inherent element of uncertainty to the scientific process. Yet Zarcadoolas et
al. (2006) suggest that only between five and 15% of the general public is considered
scientifically literate. Given this estimation, we believe it is advisable to convey
important medical information in ways that are easily intelligible to the population, even
at the risk of being considered simplistic.
The common element, which we italicized in the above definitions, is that the
information should be used to inform choices, improving health and life quality. This
emphasizes our focus on making health materials accessible and easy to comprehend,
so that while health literacy belongs to the individual, it can be enhanced by providing
suitable materials which take into account the level of ability in the population.
Prevalence
Health literacy levels have generally been found to be insufficient in large
segments of the population. A recent report by the American Medical Association (2008)
documented that over 89 million American adults have limited health literacy skills. This
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oft-cited estimate was based on the AMA‘s reinterpretation of the results of a 2003
National Assessment of Adult Literacy (NAAL) survey conducted by the National Center
for Education Statistics. The AMA reclassified anyone below basic (health) literacy as
―limited‖ and multiplied this percentage by the number of adults in the population. Note,
however, that the original survey assessed literacy in general, so the above is an
extrapolation pertaining to health literacy. Efforts to increase health literacy have been
advocated as a necessary condition for a better educated populace, capable of making
appropriate and informed health decisions and engaging in recommended health
behaviors. Increasing health literacy has even been called an ethical imperative for
health professionals to ensure that individuals process and comprehend relevant public
health messages, treatment options, and recommended regimens (Gazmarian et al.,
2005).
The Cost of Low Health Literacy
In this section we explore both the financial cost of low health literacy, as well as its
―cost‖ in the broad sense of the word, as is often done when evaluating the burdens of
poor health literacy. Adding the financial consequences of poor health literacy to the
medical, ethical, cultural, and legal ones, the AMA (2008) states that ―Individuals with
limited health literacy incur medical expenses that are up to four times greater than
patients with adequate literacy skills, costing the health care system billions of dollars
every year in unnecessary doctor visits and hospital stays.‖ Improving health literacy
would result in higher throughput, reduced collection costs expenses, and,
consequently, improved bottom lines for medical institutions. Limited health literacy is
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estimated to cost the nation between $100 and $200 billion a year (Vernon, Trujillo,
Rosenbaum, & DeBuono, 2007).
In addition to these financial costs, low health literacy also results in less knowledge
and increased morbidity and mortality. A review of the health impacts of education
found low educational levels were associated with increased risk of death from lung
cancer, stroke, cardiovascular disease, and infectious diseases, as well as a number of
illnesses including back pain, depression, dementia, asthma, and diabetes (Higgins et
al., 2008). While this study addresses education in general, others link education
directly to literacy levels (Kutner et al., 2006). These researchers find that literacy levels
are lower among the elderly, people with lower educational levels, the poor, minority
populations, and groups with limited English proficiency, such as recent immigrants
(Kutner et al., 2006).
People with limited health literacy have less health knowledge, access fewer
preventive services, and have poorer self-management skills (Williams et al., 1998a,
1998b). Further, the impact of health literacy goes beyond knowledge to actual health
outcomes. People with low health literacy were twice as likely to self-report poor health,
even after adjusting for age, gender, race, and markers of economic deprivation (Baker
et al., 1998). For example, health literacy has been found to be a significant,
independent predictor of average blood sugar in people with diabetes (as measured by
the A1C serum hemoglobin) (Schillinger et al., 2002). People with low health literacy
also had a higher prevalence of diabetes and congestive heart failure, and reported
worse physical and mental health and greater difficulties with daily activities and
limitations due to physical health (Wolf et al., 2005). Higher all-cause mortality risks
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were found in elderly people with lower health literacy, compared with those of
adequate health literacy (Sudore et al., 2006). Similarly, Baker et al. (2007) found low
health literacy to be significantly and independently associated with higher mortality risk
in elderly people.1 These findings highlight the association between health literacy and
health outcomes in general, and chronic disease specifically.
Another measure, which lies between the ethical imperative to improve health
and economic benefit (and indeed is used as an economic measure), is that of quality of
life. For instance, if health literacy is associated with reducing the severity of chronic
diseases, such as diabetes or hypertension, patients‘ lives become more bearable and
they avoid acute outcomes. Those with low literacy skills might benefit the most from
having materials cater to their reading and comprehension level. Their demographics
suggest that introducing such materials may also reduce social disparities.
Barriers to Health Literacy
The dangers of poor health knowledge go beyond the level of the individual, but
may be addressed through broader policy interventions, such as cultivating statistical
proficiency in schools. In addition to cognitive barriers to health literacy, other obstacles
may exist which deter patients from obtaining or making an effort to understand
information about their health. One such barrier which will be explored concerns
whether the social context supports patients in seeking and processing health
information. An additional social impediment may be the way materials are written and
1 This section is adapted from Apfel, B., Jacobson, K.L., Parker, R.M., Taylor, J., Boyle, T., Groves, J., Mwangi, J., Ratzan, S.C., & Allinson, C. (2010). Health literacy: Action
and guide part 2: evidence and case studies. World Health Communication Associates Ltd. Axbridge, UK.
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presented, and the degree to which this facilitates patients‘ dealing with medical
information. Note that all of these barriers can be overcome, or at least alleviated, by
insisting on health materials that are simple, user-friendly, and designed to engage the
patient in both dialogue and health-promoting behavior.
Lack of statistical training, knowledge and skills.
Health literacy is essential for communicating the risks and benefits of
procedures and treatments options. It is the cornerstone for eliciting informed patient
choices, as well as establishing comprehension of and adherence to treatment and
medication regimens. And although many lack health literacy skills, risk and benefit
information is often presented in formats that are difficult for many Americans to
process. (Lipkus, Samsa, & Rimer, 2001; Peters, Hibbard, Slovic, & Dieckmann, 2007;
and Ancker & Kaufman, 2007). Most medical information is presented as statistics and
probabilities, yet not everyone receives training in those concepts (Bond, 2009;
Gigerenzer, Gaissmaier, Kurz-Milcke, Schwartz, & Woloshin, 2007). Medical
information, including unconditional probabilities, is often misunderstood, both by
laypeople and by the healthcare professionals who are supposed to explain these
concepts to them (Miron-Shatz, Hanoch, Graef, & Sagi, 2009; Miron-Shatz, Hanoch, &
Saphire-Bernstein, 2010, respectively). A related concept indicates that numeracy, the
numeric equivalent of literacy (Lipkus et al., 2001; Peters et al., 2007), is required for
comprehending risk information, and the vast majority of risk and medical information is
indeed quantitative. Ancker and Kaufman (2007) take a less individual-based approach
toward developing numeracy skills. They define health numeracy as the individual-level
skills needed to understand and use quantitative health information, including basic
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computation skills, the ability to use information in documents and non-text formats such
as graphs, and the ability to communicate orally. Yet they suggest that two other factors
affect whether a consumer can use quantitative health information: the design of
documents and other information artifacts, and health-care providers‘ communication
skills. This finding further underscores that promoting health literacy and numeracy is an
interactive process, in which both patient and system need to participate actively.
Social construction of roles – should a patient pursue medical information?
Another barrier is the social construction of roles, specifically the ―sick‖ role,
which can determine whether a patient is a mere recipient of information or someone
who assumes an active role in health-related decision making, including the decision
whether or not to engage with the medical establishment. Construction of prevailing
narratives has been shown to be influential in selecting treatment options (Wong & King,
2008). The more complex medical information is, and the less accessible, the more it
can be inferred that it is not the patient‘s role to pursue it or try to gauge its meaning.
Conversely, accessible, intelligible information implies that patients can and should
pursue and attempt to act upon it.
Non-standardized reporting of health information.
Given the prevailing limitations in health literacy, a recent report (Miron-Shatz,
Bowen et al., forthcoming) suggested that for people to develop skills in reading and
understanding medical information, it needs to be reported in a way that is as uniform
and standardized as possible, allowing for little variation between providers, over time,
and across clinics. A scorecard offers such a standardized manner of conveyance, and
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can, if broadly disseminated, result in promoting increased health literacy and
experience in the community, across individuals, as the format is shared and
implications are discussed. Having the same scorecard over time will help engrain in
people‘s minds the components that are essential for preventing chronic disease.
In their research on shared decision making, Elwyn et al. (2000) note that
checking for comprehension is a skill required of the healthcare professional.
Introducing a user-friendly, efficient scorecard on chronic disease may be a step toward
ensuring comprehension, perhaps more effectively than face-to-face interactions.
The Prevalence and Cost of Chronic Disease
This report focuses on chronic disease because most of its causes are preventable,
or at least, if diagnosed and treated early enough, complications can be largely avoided.
Today, chronic diseases – such as cancer, diabetes, and heart disease – are among
the most prevalent, costly, and preventable of all health problems. Moreover, chronic
diseases are among the main causes of death in the United States (see Box 1) and
globally, leading to deaths of elderly, as well as to loss in productivity due to death of
people still in the workforce. Half of those who die from chronic diseases are in their
productive years, making the social costs and economic consequences in terms of lost
productivity considerable. Several characteristics suggest that chronic diseases need to
be managed at the population level:
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Prevalent: Chronic disease in on the rise: between 1997 and 2003 the incidence
of diagnosed diabetes in U.S. adults increased 41% - from 4.7 to 6.9 per 1000
(AMA, 2008).
Costly: in 2007, direct and indirect costs of diabetes were $174 billion, over half
for people over 65 (U. S. Department of Health and Human Services, 2010). The
Milken Institute (2007) defines avoidable health costs as those that could be
eliminated by ―reasonable improvements in behavior and treatment.‖ They state
that the avoidable indirect financial impact (i.e., productivity loss) of chronic
disease is four times as high as the direct cost. For example, the estimated
annual impact of heart disease is over $200 billion, with the impact of
hypertension being almost as high.
Self-managed: Diseases, chronic ones notwithstanding, are increasingly being
self-managed: the number of drugs (prescription and non-prescription) has
doubled between 1995-1996 and 2004-2005; there have been fewer hospital
stays since 2000 (Briss, Rimer, Reilley, et al., 2004). This presents a challenge
when dealing with low health literacy populations, who are now required to
manage their own conditions, sometimes in a multiple-disease situation.
Box 1 lists the leading causes of death in the United States, which illustrate the place
chronic disease has in mortality.
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While this report focuses on the U.S., chronic diseases remain near the top of the
global risk landscape as well. Globally, 60% of all deaths are due to chronic diseases,
with about 75% of such deaths occurring in middle- and low-income counties (Cooper,
Anderson, & Harrison, 2010). Thus, solutions developed in the United States, may, with
adaptations, also prove beneficial globally.
Box 2 further illustrates disease burden, prevalence, and association of chronic
disease with preventable behaviors, using diabetes, which is the sixth leading cause of
death in the United States. Yet because people die of the complications of diabetes
Box 1: Number of deaths for leading causes of death (US)
Heart disease: 631,636
Cancer: 559,888
Stroke (cerebrovascular diseases): 137,119
Chronic lower respiratory diseases: 124,583
Accidents (unintentional injuries): 121,599
Diabetes: 72,449
Alzheimer's disease: 72,432
Influenza and Pneumonia: 56,326
Nephritis, nephrotic syndrome, and nephrosis: 45,344
Septicemia: 34,234
Source: CDC report, Deaths: Final Data for 2006, table B
http://www.cdc.gov/nchs/fastats/lcod.htm
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rather than from the disease itself, diabetes is underreported as the underlying cause of
death (McEwen et al., 2006).
The facts below indicate that diabetes and pre-diabetes are highly prevalent and
often undiagnosed, so that a health scorecard, distributed widely, could prevent
morbidity and reduce complications, including among populations who would not
associate themselves with diabetes. Furthermore, disease burden is higher among low
socioeconomic status populations, which are also low in health literacy. These
populations might benefit the most from an accessible, comprehensive, and intelligible
gauge of their health.
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Box 2: Diabetes facts
Diabetes has been ranked among the ten leading causes of death in the
United States since 1932 (Harris, 1993).
Approximately 23.6 million people in the United States have diabetes. Over a
quarter of these, 5.7 million, are undiagnosed.
The estimated prevalence of diabetes in adults 20 years and older is 10.7%
and for adults 60 years and older 23.1%.
About 40% of the population has pre-diabetes, which progresses to overt
diabetes and occurs at a rate of about 10% per year.
Healthy lifestyle and pharmacological agents may delay progression by about
50% (CDC 2008).
For individuals born in 2000, the risk of developing diabetes during their
lifetime is 32.5% for men and 38.5% for women (Narayan et al., 2003).
Adjusted for differences in age and sex, medical expenditures were
approximately 2.3 times higher for those with diabetes. The number of
prescription and nonprescription drugs recorded during physician office visits
and outpatient department visits for patients who have diabetes more than
doubled between 1995-1996 and 2004-2005, while days of care in non-
federal, short-stay hospitals have declined steadily from 1990 (NCHS, 2007).
Lower socioeconomic status, as measured by income or education, is
associated with increased risk of diabetes (Geiss et al., 2006).
Lower socioeconomic status is associated with low levels of health literacy,
which affects health care and medical care (Berkman et al., 2004).
2 This box is adapted from Bishop, D. B., O‘Connor, P. J., & Desai, J. (2010). Diabetes. In Remington, P. L., Brownson, R. C. & Wegner, M. V. (Eds.).
Chronic disease epidemiology and control. 3rd Edition. Washington, D. C: American Public Health Association.
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Preventing and Controlling Chronic Disease through Health Literacy
Health literacy is at the center of both preventing chronic disease and adhering
to treatment plans once diagnosed. For instance, obesity-related conditions account for
9.1% of medical spending, or $147 billion. The additional expenses of diabetes and
other ailments which are more common in an overweight population could be addressed
with health literacy interventions. On an individual level, this can translate into significant
savings as medical spending averages $1,400 more a year for an obese person than for
someone of normal weight (Finkelstein et al., 2009). Most works examining the cost of
low health literacy have indeed measured it in the context of chronic disease, such as
diabetes and hypertension.
A number of specific outcomes have been associated with improved health
literacy. For example, adherence to diabetes treatment regimens increased after
patients received an intervention designed to improve their understanding of the
disease and its treatment (Muhlhauser, 2002). Other outcomes frequently mentioned
are the reduction of unnecessary care and its associated monetary savings (AMA,
2008).
Ratzan (in press) links chronic disease with health literacy, stating that
primary prevention programs and strategies that provide access to health information
that is clear, easy-to-understand and meaningful to the individual and that address
common risk factors for chronic disease such as obesity, physical inactivity and blood
pressure control could be addressed through a health literacy prism. Such programs
help individuals identify modifiable risk and protective factors for
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diseases/disorders/injuries; and assess risk, including genetic susceptibility.
It may be hard for health professionals to gauge the extent to which health
literacy affects medical outcomes, because sizeable portions of the patient population
lack disease-related knowledge which may be considered common knowledge or trivial.
The potential reduction in healthcare costs is exemplified in two chronic diseases: only
about 40% of diabetic patients of inadequate health literacy knew they should eat some
form of sugar if feeling sweaty, hungry, and shaky; a similar proportion of hypertensive
patients knew that exercise lowers blood pressure (Williams, Baker, Parker, & Nurss,
1998). Reducing emergency room visits through the simple means of consuming sugar
when hypoglycemic is perhaps the most extreme example of how seemingly prevalent
and commonly-shared knowledge is sometimes missing from people‘s behavioral
lexicon.
Studies that have looked at health outcomes of low-income individuals, controlling
for education, insurance, race/ethnicity, sex, language, depressive symptoms, social
support, diabetes education, treatment regimen, and diabetes duration have found that
those with higher health literacy had better health outcomes than those in the low-
literacy group (Schillinger et al., 2002).
Scorecards—A Simple Solution
A Definition and a Suggested Scorecard
Merriam Webster‘s Dictionary defines a scorecard as: 1: a card for recording the
score of a game; 2: a report or indication of the status, condition, or success of
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something or someone. This report suggests using scorecards for a similar purpose,
keeping track of one‘s health. This section mentions several examples of scorecards
that deal with chronic disease, and analyzes their mode of operation. Alternative terms
that can be considered are ―self-check,‖ particularly if the questions or action points are
more qualitative in nature. The term ―calculator‖ also comes to mind, and indeed there
are several risk calculators online. This report favors the term ―scorecard‖ over
―calculator‖ because of the implication that a score, as measured by a scorecard,
continually changes and needs to be monitored. Additionally, we term this the ―health
scorecard‖ (rather than, for example, ―chronic disease prevention scorecard‖), so as to
avoid having people dismiss the scorecard as irrelevant to them if they have not been
diagnosed with a chronic disease.
There are scorecards currently in use that target specific diseases. The D5, to
name one, is a health scorecard, designed for promoting complications, namely
cardiovascular disease, associated with diabetes. Interestingly, the D5 does not declare
its goal in medical terms. Rather, it promises ―living well with diabetes.‖ More
information is available for those who seek it, as the website elaborates ―the D5
represents the 5 goals you need to achieve to reduce your risk of heart attack or stroke
when you have diabetes.‖ The D5 asks patients to control blood pressure (less than
130/80 mmHg), lower ―bad‖ cholesterol (LDL less than 100 mg/dl), maintain blood sugar
(A1c less than 7%), be tobacco-free, and take aspirin daily. It is an all-or-none
scorecard, in the sense that a patient ―gets the D5‖ when they have accomplished all
goals, otherwise, nil. This report takes a slightly different approach toward scoring.
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Additionally, framing the card as diabetes-related means that undiagnosed patients, of
which there is a considerable portion, do not receive the scorecard.
Another diabetes-related example, titled ―Diabetes partnership record – know your
A1C!‖ comes from Primaris, This pocket sized card is divided in two – the top half
pertaining to direct indicators of diabetes: blood sugar level, A1C, weight, blood
pressure, eGFR (epidermal growth receptor, a term that some patients may be
unfamiliar with) and Microalbumin urine test (likewise). The bottom half of the card is
titled ―lipids‖ (which diabetics may not associate with themselves) and lists multiple
indicators such as cholesterol level (overall, LDL and HDL), triglycerides, a foot exam,
eye exam, flu shot, a pneumonia vaccine, smoking, exercising, and taking aspirin daily.
Including 16 indicators, using medical jargon, and not having an overall score or gauge
for how the patient is doing, do not go hand in hand with promoting health literacy and,
consequently, controlling or preventing disease.
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Box 3: The proposed health scorecard: ―Take care: 7 steps or better health.‖
Key Health Indicators Goal
Body Mass Index 19 - 25
Blood Pressure 120/80
Cholesterol under 200 mg/dl
Fasting Blood Sugar under 100
Smoking/Tobacco Use no smoking/using
Exercise 30 minutes 5 times a week
Immunizations, Cancer Screenings (gender/age)
Overall Health Score (how many √s)
7 Excellent Successful attainment of all indicators; continue to monitor
5-6 Getting there A few key indicators need to be attained
0-4 Take care! Immediate attention required to reach attainment for better health
“Take Care – 7 Steps for Better Health”
Get a √ for each indicator in recommended range
The principles guiding the creation of the health scorecard are elaborated on below. The
main area of development to be considered is that of the last indicator: immunizations
and age- and gender-appropriate cancer screenings. This is perhaps the greatest
challenge, as it involves tailoring the health scorecard to various populations, such as
the elderly, men over 50 (PSA screening, which may not necessarily be recommended
all over), fertility-age women, and more. For that matter, children may also benefit from
a parsimonious and readily available model of what it entails to be healthy.
The raison d'être of the health scorecard is to promote health literacy by being
consumer directed: user friendly, motivating, and easily intelligible. Whether it is
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perceived as user friendly, whether it is motivating and whether it really is easily
intelligible need to be experimentally tested. Ideally, preliminary examinations will
include patients and incorporate their feedback into the final formatting of the health
scorecard.
Why Should a Health Scorecard Work? Theoretical Support
Ratzan (in press) states that ―understanding what you need to do to ‗be healthy‘
and building systems of care and services that are navigable and accessible are
foundational and fundamental for improving population health.‖ He continues in what
can be interpreted as an invitation to create scorecards that will provide easily
accessible, interpretable, and actionable health information:
―Efforts to enhance population health literacy, primary and secondary
prevention are intricately linked and together create a double helix as a
foundation for health reform. Such a health literacy helix serves as the
fabric for improving health in America as it translates primary and
secondary prevention into (1) what we need to know and do to stay
healthy, and (2) detecting and treating disease early to get better and/or
live with disease.‖
The idea of a health scorecard, or at least the notion of presenting disease-
related information in a uniform way, has received support from various sources.
Proponents of delivering efficient health information have highlighted aspects ranging
from health literacy and cognitive limitations, to global comparisons of health
information. It follows that effective scorecards would focus on the main determinants of
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health, and would aspire for ease of comprehension, to be preferred over usage of
medical jargon and inclusion of excessive criteria.
The IOM Committee on Preventing the Global Epidemic of Cardiovascular
Disease: Meeting the Challenges in Developing Countries (Fuster & Kelly, 2010) refers
to cardiovascular disease as no less than an epidemic, and highlights the importance of
standardization and the global coordination of surveillance and evaluation systems. This
need for standardization and coordination, the authors demonstrate, has likewise been
recognized by the global HIV/AIDS community and is addressed in large part by the
United Nations‘ Joint Programme on HIV/AIDS (UNAIDS‘s) Monitoring and Evaluation
Reference Group (MERG) (UNAIDS, 2009). The scorecard approach facilitates just
that, by offering a unifying framework for considering risks, health indicators, and
desirable behaviors. A scorecard that will be broadly disseminated in the United States
and globally will allow for standardization of health state reporting, facilitating
comparisons within and across countries, as well as over time, with varying
interventions and policy emphases (e.g., cigarette prices). Interestingly, the IOM report
(Fuster & Kelly, 2010) does not make any reference to the concept of health literacy.
This implies that the potential effect of improving skills for comprehending medical
information on cardiovascular disease, and, likewise, the benefit of creating simple
materials and guidelines to fit varying levels of literacy in the population, are yet to be
more broadly endorsed by the medical community.
Bailey et al. (2009) ascertain that, to promote health literacy, formats need to be
simplified and more attractive than standard medical information. The health literacy
action guide (Apfel et al., 2010) lists several health literacy enhancement interventions,
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the first being provision of simplified and more attractive written materials. Based on
Bailey et al.‘s work (2009), they suggest producing information materials in simplified
language, with improved formats. Recommended formats involve more white space,
friendlier layout, short sentences, simple words, and large fonts. Another
recommendation is for written passages that are action and goal-oriented, and provide a
clear explanation of the purpose of the written material. Passages should clearly define
what actions should be taken by the reader and why these actions are necessary.
Work on cognitive limitations and information overload leads this report to
question whether simply providing more information leads to increased comprehension
(Shaughnessy et al., 1994, see formula below). It is clear that the existence of
information simply is not enough. For information to be utilized, it needs to be deemed
useful, a concept Shuaghnessy et al. defined as:
Thus, scorecards would be deemed highly useful, as they are a quick way to obtain a
snapshot of one‘s health. Their relevance is self-evident, and, if they come from a
reliable source and are backed by evidence, they are also highly valid.
A recent report (Miron-Shatz et al., in press) suggested that policy makers and
public communicators need to cultivate the skill of conveying health information so that
the patient, reader, consumer, or citizen understands it, without compromising the
evidence base. In the clinical encounter the patient and the clinician meet and exchange
knowledge, so a clinician needs to communicate health information to a patient and
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ensure comprehension. This can be done at an individual level, but is more efficient if
the information is created so as to maximize comprehension. We extend the notion of a
clinical encounter to encompass health facilitators (such as a health counselor at a local
pharmacy) and suggest that if all adopt a health scorecard, the skill of conveying its
meaning to patients will become more common.
Scorecards embody an emerging principle in medical practice and interventional
epidemiology – translational medicine, or the concept of knowledge translation (Davis et
al., 2003). This principle is generally characterized as taking research work ―from the
laboratory to the bedside,‖ improving the application of basic science research to clinical
research and practice (Lean et al., 2008). Translational medicine strives to optimize
patient care, but also preventive measures, thereby going beyond the provision of
healthcare services, such as medication, info lifestyle practices.
Indeed, our proposed scorecard corresponds to Norris et al.‘s (2003) definition of
chronic disease management in the clinical setting as an organized, proactive, multi-
component, patient-centered approach to healthcare delivery that involves all members
of a defined population who have a specific disease entity (or a subpopulation with
specific risk factors). Care is focused on, and integrated across, the entire spectrum of
the disease and its complications, the prevention of co-morbid conditions, and relevant
aspects of the delivery system.
Although we do not touch upon the delivery system directly, a scorecard would
facilitate (a) patients‘ knowledge of the tests they need, and (b) physicians‘ alertness to
poor or declining control of chronic disease. Furthermore, the scorecard will provide a
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unifying framework for discussing health, as, hopefully, both patients and physicians will
strive together to improve the indicators that appear on the scorecard.
Why Should Scorecards Work? Empirical Support
A white paper by The Lewin Group (2008), on the use of scorecards to give
patients information on the quality of healthcare providers, identifies several factors
affecting the impact of scorecards. These factors, despite apparent dissimilarities, are
highly relevant to our cause: awareness of Information; knowledge and Resources;
belief that Information is valid; public & political support for change; and consumer
health care literacy. The Lewin Group White Paper indicates that ―educating patients
about care guidelines was far more important than making comparative quality data
available to them.‖ The Aligning Forces for Quality Initiative in Cincinnati (Heath
Improvement Collaborative of Greater Cincinnati, 2009) reports that patients in the
Greater Cincinnati area had significantly higher levels of preventative health care
measures (e.g., 87% of diabetes patients had an annual A1c test, as compared to a
national average of 81%). There is similar evidence for many other chronic illnesses in
the report. This can be attributed to the use of scorecards on physician quality in this
study in a way that made the steps for maintaining good health publically known, and
perhaps broadly and openly discussed.
Additional evidence similarly indicates that supplying providers with clear
guidelines promotes patients‘ health. For example, Ward et al. (2004) have found that
Veterans Affairs medical centers (VAMCs) with higher levels of provider adherence to
diabetes guidelines had distinguishing organizational characteristics, including more
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frequent feedback on diabetes quality of care, designation of a guideline champion,
timely implementation of quality of care changes, and greater acceptance of guideline
applicability. VAMCs with better patient outcome measures for diabetes had more
effective communication between physicians and nurses and used educational
programs and Grand Rounds presentations to implement the diabetes guidelines. An
additional example of the effectiveness of simplified materials for the public can be
found in nutritional labels, which allow for comparison across products, as well as with
suggested daily consumption. Using a quasi-experimental approach to control for
unobserved selection effects, Variyam (2007) presents evidence that the Nutrition Facts
panel mandated by the Nutrition Labeling and Education Act of 1990 had a modest but
beneficial impact on the dietary intakes of Americans. Those who reported using the
NFP when buying food had significantly higher fiber and iron intakes compared with
those who rarely or never used the NFP. The researcher acknowledged the self-
selection factor, as more savvy and nutrition-conscious shoppers may be more likely to
use the labels. Finally, in the health domain, The Drug facts box developed by Woloshin
and Schwartz (2007) is intended for patients and compares outcomes with or without
treatment. It is efficient, modeled after food information boxes that appear, for instance,
on cereal packages. The idea is to use percentages to express risks and directly identify
benefits and harms from medications, allowing for both informed decision making and
choice among treatment options. While this is not directly related to chronic disease, all
these examples illustrate an emerging trend of engaging people in their health, through
simplified, standardized presentation of information.
Positive ―Side Effects‖ of Scorecards
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The obvious, most immediate benefit of health scorecards is improving health. Yet the
particular way through which a scorecard would help accomplish this is associated with
additional benefits as well. Some of these benefits might be sustained even if the
scorecard is no longer used.
Creating a mental model of health.
About 60% of hypertensive patients do not know that exercise lowers blood
pressure (Williams et. Al, 1998). Similarly, an American Diabetes Association (ADA)
survey found that two out of three persons with diabetes did not consider cardiovascular
disease a significant risk factor for diabetes (U.S. Department of Health and Human
Services, 2002). These examples are highly pertinent to the present discussion and to
the proposed scorecard, because they suggest that even diagnosed patients do not
necessarily have a holistic, coherent model of what affects their health. Thus, patients
might think of hypertension as a medical condition, to be detected, treated, and
monitored by a healthcare professional, solely through medication. Indeed, Okoro et al.
(2004) recommend that preventive programs and public awareness messages be
directed toward these risk factors to avoid diabetes complications and care costs. One
example of such a program is the ―ABCs of Diabetes‖ campaign of the Department of
Health and Human Services (U.S. Department of Health and Human Services, 2002),
which aims to promote a comprehensive approach to diabetes care (but see Persell et
al., 2004, who report that improved diabetes education is associated with improved self-
management behaviors but not better process of care or metabolic outcomes).
A scorecard that will include lifestyle factors, such as smoking cessation and
exercise, alongside medical indicators, such as blood pressure and cholesterol, will help
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create a unifying model, through which people can appreciate that maintaining their
health is a comprehensive task that takes place both at home and in the doctor‘s office
or clinic.
The self-regulation framework (e.g., Leventhal, 1970; Leventhal, Diefenbach,
Leventhal, 1994) postulates that health behaviors and health decisions are influenced
by cognitive representations of a health condition or symptom, such as beliefs about its
duration, causes, consequences, and curability (Leventhal, Diefenbach, Leventhal,
1992). In an effort to measure a person‘s overall understanding of a health threat more
specifically, an additional dimension, illness cohesion or comprehension, was added
(Weinman, Petrie, Moss-Morris, & Horne, 1986). A plethora of empirical evidence
demonstrates the effect of these mechanisms on screening and other health behaviors
(for a summary see Cameron & Leventhal, 2003). This suggests that a scorecard that
will generate a mental representation of health as a multifaceted concept may be an
effective means of motivating people to maintain and promote their health through
various behaviors.
Promoting patient participation.
Most prevention and control of chronic care is done in patients‘ homes, outside
the physician‘s influence, so that patient engagement is crucial. In a survey that
encompassed some 8000 citizens of European countries, Coulter and Magee (2005)
found that about 25% of participants said they would like their doctors to make all
medical decisions for them. Yet even people who prefer to be left out of decision making
appreciate having health information explained to them in a way they understand, and
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then prefer more involvement. The findings, while not focusing on health literacy, hint
that even low health literacy populations, who otherwise feel ill-equipped, will participate
in decision making if they feel they have the tools to do so (Coulter & Magee, 2003).
Increasing the participation of low health-literacy groups in medical
decision making.
Patient participation is crucial in chronic disease prevention, which requires daily
adherence to medication and lifestyle regimens. Yet patients do not always wish to take
part in decision making processes. This reluctance may result from a feeling of being ill-
equipped to deal with medical information. For instance, in a study on prostate cancer
patients (van Tol-Geerdink et al., 2006), about half of the patients (69 of 148) had a low
preference for participation in medical decisions. However, after having been informed
about treatment options with a decision aid, 75% of these patients with generally low
participation preferences wanted to be involved in choosing their radiation dosage. This
was only slightly lower than a group of patients who generally have a high participation
preference, where 85% wanted to be involved. This result suggests that patients may
refrain from seeking information or making health decisions and defer to professionals
because they fear they would not be able to understand the information. Once it is
presented in a clear and understandable way, however, they feel equipped, even eager
to participate.
Promoting trust in the healthcare provider and in the health system.
The British philosopher Onora O‘Neill (2002) claims that trust has fallen
dramatically in many institutions and across all areas of life. The remedy for mistrust is
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transparency. Scorecards offer a highly transparent, clear means of conveying health
risks and promoting action. Low health literacy, alongside the fact that doctors do not
always fully share medical information, create a foundation for mistrust. Seemingly
unrelated interventions that target information transparency, like scorecards, can help
generate trust. Nannenga et al. (2009) demonstrate, for instance, that a decision aid to
help patients decide about statin use was associated with both increased knowledge
and enhanced trust by patients. Trust also increased with patient participation.
David Mechanic (2004) reminds us that patients cannot always assess their
healthcare professionals‘ skills, and trust or mistrust them accordingly. He mentions
other bases for trust, however, which dovetail with the notion of professionals both
conveying information and eliciting patient-specific input: ―Patients‘ trust is how doctors
communicate and whether they listen and are caring. Patients do not expect intimacy
but they do seek respect and responsiveness‖ (p. 1419). Similarly, scorecards, which
provide a transparent means of conveying information, may increase trust in the
medical system.
Facilitating a health and well-being yardstick and footprint.
Modeled after the carbon footprint, the health and well-being footprint will provide
a summary metric, or, as Cooper et al. (2010) suggest, a yardstick, one that public and
private sector producers and service providers can use to align incentives for action on
health. The scorecard results, or the results of a similar, simple, and broadly applied
metric, can easily replace or support the footprint concept. The authors see the footprint
as measuring how much health and well-being is generated or diminished, thereby
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fulfilling two interrelated yet distinct goals, driven by different motivations. The first goal
is to incentivize the collection and measurement of health indicators, making them
salient, and ensuring
that the position of health and well-being as central and crucial to human,
business, and social capital development is fully valued; that the impact of
the economic burden due to chronic diseases on crowding out essential
monies for other critical global issues is mitigated; and that the true value
that people place on good health and well-being is fully recognized.
This is perhaps easier to accomplish when the vast and somewhat vague notion of
―health‖ is reduced to a single score. The second goal is to generate a ―health and well-
being corporate index.‖ It aims to motivate employers to create new ways of promoting
well-being and a healthier workforce, recognizing that ―healthy people equals healthy
profits.‖
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Figure 1: Benefits of Health Scorecard
Physical well-being
Standardized health communication
Global well-being yardstick
Employers
DialogueActive
participation
Healthcare providers
Insurers
Health promoting
actions
Considerations in Creating the Scorecard
Who is the health scorecard intended for?
A health scorecard should be aimed at all adults who wish to remain healthy or to
improve their health. By targeting the entire population, early prevention of chronic
disease can be achieved, as well as prevention of complications in diagnosed and
undiagnosed patients. Furthermore, such framing of the scorecard would remove any
stigma from its use, and make it suitable for all. In this respect the health scorecard
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differs from scorecards for diabetic patients, for example, which may not be perceived
by the general population as relevant despite being an effective means of prevention.
A particular challenge may arise from targeting so broad a population, especially
people who are neither diagnosed nor self-identified as patients. Mechanic (2004)
notes that patients may not trust information provided by a scorecard if it differs from
their personal experience. He examines this gap in the context of doctor ratings, where
a patient‘s experience might be that the healthcare provider is caring and polite, yet the
report measures success rates in treatment, which are not readily available to patients,
and which do not translate to personal experience. An equivalent situation may occur
with patients for whom the health scorecard suggests that health (or disease prevention,
whichever way it is framed) is sub-optimal, yet the person feels fine. This will need to be
addressed by physicians and perhaps also the media, explaining potential
consequences of low scores, and the effect of present behavior on future health.
Is the general population interested in a health scorecard?
Providing a direct answer to this question is difficult without extensive surveying.
Yet several indications exist showing that Americans routinely seek health information
outside of the clinical encounter, so that readily available materials may be searched for
and used broadly. When planning dissemination of the scorecard, the internet should be
considered, being a democratic arena for obtaining such information.
A report by the Pew Internet & American Life Project (2009) reveals that in 2009,
a staggering 61% of American adults looked online for health information. Indeed, a
2005 examination by the Pew Internet & American Life Project found that eight in ten
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internet users have looked for health information online, with increased interest in diet,
fitness, drugs, health insurance, experimental treatments, and particular doctors and
hospitals. More than 90% of those who seek health information search for material
related to physical illnesses. The information they find may influence medical decision
making and help consumers manage their own care. Interestingly, the most common
topics are the leading causes of death (heart disease and cancer). This suggests that
people are worried about their health and the potential harmful consequences of these
diseases. Yet, merely examining causes of death is not directly linked to action or
prevention.
These findings suggest that there is keen interest in material related to health, so
that perhaps if a scorecard were available online it could be validated, endorsed by
health professionals, and possibly have a favorable impact on health.
Further evidence suggests that the internet might be an effective channel of
dissemination for the scorecard. A recent paper (Laurent & Vickers, 2009) explored the
popularity, as well as the quality ranking of Wikipedia articles, finding that Wikipedia
articles were viewed more often than MedlinePlus Topic, though not significantly more
than MedlinePlus Encyclopedia pages. The authors conclude that, based on its search
engine ranking and page view statistics, the English Wikipedia is a prominent source of
online health information compared to the other online health information providers
studied. The findings suggest that broad dissemination of the health scorecard can be
done online, using popular, yet reputable, websites.
Why use numbers to convey information on health?
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Contrary to popular belief, studies report that a majority of patients prefer
numerical information to care only (Hallowell, Statham, Murton, Green, & Richards,
1997; Wallsten, Budescu, Zwick, & Kemp, 1993). Furthermore, verbal expressions of
risk are seldom standardized, and can carry various meanings in various situations, so
that, for example, ―rare‖ side effects can be expressed to mean 1/1000 for beta
blockers, or 1/5 for antihistamines (Kong et al., 1986). Thus, the suggested scorecard
will provide patients with a number evaluating their health, alongside an interpretation of
this number, what it means, what number they should aspire for, and how they may get
there.
Adding an emotional subtitle.
The importance of affect in information processing and decision making has been
documented in a number of recent papers (e.g., Loewenstein, Weber, Hsee, & Welch,
2001; Slovic, Finucane, Peters, & MacGregor, 2004), in which the cognitive view of risk
perceptions was reconceptualized as an affective construct. Such a ―risk as feeling‖
approach takes into account the multiple studies that found an association between
affect, information processing, and decision making (e.g., Bechara, 1997; Zajonc,
1980). These studies show that affect is an important factor in information processing
and subsequent health behavior. In light of these findings, it seems that the effect of the
scorecard on behavior can be boosted by using language that involves patients
emotionally. This can increase usage and the perceived benefit of the scorecard.
People often base their judgment on emotional cues, if these are present (Slovic et
al., 2002). Emotional encouragement is also available on websites where people enter
their health information to get a risk calculation. For example, the Mayo Clinic website
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tells people the following when their risk is low (emotional input in bold) ―Your blood
pressure and cholesterol levels are within the healthy range. Your age and sex still have
an effect on your heart disease risk score, but your controllable risk factors are well in
check. Keep up the good work!‖ The D5 communicates emotional support by offering
―5 goals for living well with diabetes.‖ There is a large difference between the emotional
impact of ―controlling‖ diabetes and ―living well‖ with it.
Similarly, in the health scorecard, the emotional benefit can be accomplished by a
means as simple as including a subtitle such as: ―Take care – 7 steps for better health.‖
Taking care of oneself implies being careful and responsible, and the term is often used
colloquially, especially in friendly parting. Additionally, ―take‖ is a verb, implying that
action is required.
All-or-none vs. incremental scores
A scorecard including several indicators can result in a score between zero and a
number equivalent to the maximal number of indicators, assuming a binary method of
assigning a one per checked indicator. How then should the indicator scores be
aggregated? The D5, as used in Minnesota to promote ―living well with diabetes,‖
applies a dichotomous criterion where patients ―pass‖ if they reach desirable levels on
all five health indicators, and ―fail‖ otherwise. The all-or-none approach is supported by
Nolan and Berwick (2006), who demonstrate its effectiveness in getting healthcare
professionals to perform all necessary steps when treating patients with, for example,
congestive heart failure or pneumonia. They find that hospitals that instituted an all-or-
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nothing approach for examining and determining the quality of care have increased the
number of necessary procedures performed on patients.
Nolan and Berwick‘s findings are of great importance from the perspective of
caretakers. The scorecard could serve a similar purpose, as a check list, ensuring that
health professionals assess relevant medical indicators and make sure their patients
take the necessary steps for maintaining their health (or at least encouraging them to do
so). However, from the perspective of patients, an all-or-none approach may be de-
motivating. What if a patient manages to lose weight, but her blood sugar level remains
above what is desired? Getting a flat zero in this case might discourage a patient from
putting more effort into improving her health. This empirical question can be tested with
various versions of the health scorecard.
Potential Hurdles and Criticism
Is a health scorecard oversimplified?
A claim can be made against the scorecard for oversimplifying health materials,
and leaving out important ethnic and genetic risk factors. Also left out are lifestyle
behaviors that are not easily explicable using such a tool, such as a fiber-rich diet and
moderate consumption of alcohol. There will, of course, be medical, evidence-based
justification for inclusion and exclusion of health criteria. Yet other justifications exist for
simplifying materials. Ratzan (in press) suggests that usability trumps
comprehensiveness and that
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it is the demands and complexity of health information and task… that
stop many from being able to do what they need to do for health.
Interventions to simplify and improve the demands and complexity are the
top priority for action, and we must work to systematically make health
more understandable and services more navigable for patients.
Patient-centered improvements in quality will result from the alignment of skills and
ability with the demands and complexity of essential tasks. This, Ratzan concludes,
advances a health-literate populace. Presenting scorecard-related information in a
stratified manner, as suggested below, is yet another means of ensuring that the health
scorecard does not oversimplify medical facts.
Presenting scorecard information in a stratified manner.
While some patients, perhaps most, would find the information provided by
scorecards sufficient, others may wish to know more and to understand the evidence
underlying their score. This can be accomplished by presenting the scorecard
information in a stratified manner, which is easily accessible online. The Cochrane
Collaboration, providing information about the effects of healthcare, is applying such a
layered structure and now offers a plain-language summary intended for consumers but
available to all. They restrict themselves to presenting one ―Summary of Findings Table‖
for the main comparison in the review which, perhaps in line with memory constraints,
includes no more than seven benefits and harms, or outcomes (Schuneman et al.,
2008). Similarly, scorecards can come with an online version displaying the evidence for
the ratings, potentially even including the relevant medical papers and reviews, for
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patients who want those. An online version may also provide visual presentations,
animation, and any other information that is deemed both interesting and beneficial in
promoting health. The effort to maintain such a resource is worthwhile as long as the
user base is broad, as would be the case should the scorecard be disseminated to as
many segments of the population as possible. Furthermore, an online version could
allow for fine-tuning and taking into account genetic and other risk factors (for example,
vaccination), which, for the sake of simplicity, are not included in the paper version.2
Such multi-layered presentation would allow users to access the evidence, to devise
their own formula for combining risk factors, and to generate their own impressions and
ratings.
While the suggested scorecard for chronic disease prevention is premised on
patients‘ limited health literacy, and attempts to facilitate comprehension across the
board, other challenges exist. Creating awareness — among healthcare professionals,
as well as the public — that the scorecard exists, is one. Assuring those that the
information presented in the scorecard is valid, is yet another, though this report has
attempted to cater to this by linking the scorecard with evidence and existing measures.
Success also depends on public and political support for change, as well as a climate
that encourages patient engagement, makes testing for various health indicators easy
and accessible, and offers physicians financial incentives for prevention.
Patient discrimination based on scorecard results.
2 This section is adapted from Miron-Shatz, T., Bowen, B., Diefenbach, M., Goldacre, B., Mühlhauser, I., Smith, R. S. W., Spiegelhalter, D., & Wegwarth, O. (In press). From blind
acceptance to active inquiry: Jumping the barriers to Health Literacy. In Gigerenzer, G. & Gray, J. A. M. (Eds.). Better doctors, better patients, better decisions: Envisioning
healthcare 2020. Strüngmann Forum Report (Vol. 6). Cambridge: MIT Press.
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A potential concern with the use of self-administered scorecards is that providers
might be penalized for patients with low scorecard ratings. This, in turn, may lead to an
implicit bias among providers for patients with better prognoses. This trend might be
combated by implementing process measures of provider effort in addition to patient
outcome measures (Kerr et al., 2003; Kerr et al., 2001). In support, Ward et al. (2004)
found that provider process measures in the VAMCs were not correlated with proportion
of black patients, though research conducted elsewhere indicated that black and
Hispanic patients were less likely to have their diabetes well controlled (Harris, 2001;
Bonds et al., 2003).
Some patients may not understand the scorecard.
A Healthy State campaign developed by Pfizer (Lewin Group, 2008) recognized
that many patients did not speak English fluently or at a very high level: materials were
literacy-adjusted and adapted for the fourth-grade level in both English and Spanish.
The materials focused on behavioral recommendations that would be favorably received
by the targeted groups of patients. Despite the effort in developing clear materials and
using print (rather than online) formats, in many cases these materials would not be
effective without assistance and explanation from a nurse or care manager who could
answer questions and clarify misunderstandings.
This finding suggests that some level of mediation is required, not just to
administer medical testing, but also to explain materials and ensure comprehension. It
needs to be determined who will give this support, to whom it will be made available,
and at what cost.
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For Future Development
Including testimonials, or making these available online and easily linked to the
scorecard. One of the powers of persuasion, as defined by Robert Cialdini of
Harvard, is that of social proof–realizing that others are doing what you‘ve been
told to do. Thus, if a scorecard were to show stories of people who have
followed the guidelines and managed to control their chronic illness more
effectively, this could add to the persuasiveness of the method.
Research looking at patients, and the ways they use the scorecard, can be
highly beneficial for designing improvements to the scorecard. Ethnographic
approaches examining how people live with various health conditions, and what
could improve their well-being, are carried out, for example, by Intel, to develop
ways of ensuring elderly people do not forget their medication, and demented
patients can recognize people‘s voices over the phone. Ethnographic methods
are often the best way to assess what people‘s needs are and how these can be
met, in their home environment, where most of the care, if not management, of
chronic disease takes place.
CONCLUSION
Recent trends in health point to the need to take action so as to reduce the
colossal burden of chronic disease, and the toll it takes on the health system, the
economy, and society. Health literacy is an important skill that may contribute to
reversing these burdens, yet many people lack it. A health scorecard is a simple,
efficient tool that can help. It can create a common vocabulary of what it means to be
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healthy, and what is required to get there – medically and in terms of lifestyle choices
and behavior. It can also emphasize the patient‘s responsibility for attaining better
health and being aware of their medical conditions, as well as of the implication of their
choices.
Granted, one health scorecard cannot be the only instrument for educating the
population. Complex notions, such as healthy eating, are hard to explain and prescribe
through a short health scorecard. However, given that the obesity epidemic is
spreading, alongside other chronic diseases, it seems that action needs to be taken
sooner rather than later. An imperfect and perhaps incomplete health scorecard, in the
sense that elements such as nutrition are left out, might still greatly benefit society by
promoting health literacy.
To go one step beyond the report, practical measures need to be taken so as to
achieve consensus or overarching agreement regarding health indicators, values, and
lifestyle behaviors to be included in a health scorecard. This will allow for creating a
health scorecard to be broadly disseminated throughout the health system and beyond.
Creating the vocabulary of health, and creating mental models of diseases that illustrate
how various health indicators and behaviors, such as exercise and blood pressure are
interconnected, are not trivial. They are imperative and may improve the health of the
United States population.
A potential strong driver of the health scorecard would be an examination of its impact.
Perhaps because of the popular nature of scorecards, as opposed to other, more
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49
experimentally controlled interventions, methodical examination of the effect of health
scorecards is scarce. To achieve its full impact, the health scorecard can first be piloted
with an insurer, state, or employer. This will be followed by debriefing, data collection on
both comprehension and medical indicators, and revising the health scorecard
accordingly prior to presenting it more broadly. Such an evaluation could demonstrate
the direct link between the health scorecard and health outcomes, alongside their
economic benefit. This would help engage stakeholders in overcoming differences, and
championing the health scorecard concept so as to promote health literacy.
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Appendix
Converging Evidence for a Health Scorecard
Deciding what goes into a scorecard to be broadly disseminated is a major
responsibility. How does one go about determining the medical indicators to be deemed
crucial enough for inclusion, or their prescribed levels? This task is of such monumental
importance, involving multiple stakeholders and incorporating professional views, that it
might seem insurmountable.
The IOM Committee on Preventing the Global Epidemic of Cardiovascular
Disease: Meeting the Challenges in Developing Countries (Fuster & Kelly, 2010) states
that ―the question of which indicators to use and how to prioritize them must be agreed
upon by the relevant stakeholders in the international community.‖ The committee
recommendations compellingly illustrate the challenge of juggling scientific accuracy,
global consensus, and practical considerations of generating a ―uniform, parsimonious
and handy way of measuring and promoting health.‖
The highlighted sentences below from the IOM committee represent the rationale
applied in creating the suggested scorecard:
―A number of key categories of metrics are crucial to measuring CVD and its
breadth of determinants and would need to be considered. These include
demographics; risk and risk mitigation including behaviors (e.g. smoking rates,
physical activity, diet and nutrition) and biomedical measures (e.g. weight and
height, blood pressure, cholesterol); disease outcomes (e.g. cardiovascular
events); cause-specific mortality; health provider and quality improvement
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measures; health systems performance; economic measures; intersectoral policy
measures (e.g. cigarette costs and sales data); and measures of global action.
Some of these measures need to be disease specific, while others need to be
harmonized and coordinated with measurement strategies for related chronic diseases
and for other areas of health and development.
While there may already be consensus within a few of these indicator categories,
far more are currently still being debated, and setting priorities within and across
categories to balance comprehensive measurement with feasibility will not be simple.
Although it was beyond the scope of this committee to do so, a minimum set of
indicators with clear definitions with guidance on prioritization needs to be
developed to allow for uniform and comparable data across countries and
systems. Developing an indicator framework of this kind could be achieved through a
consensus process involving key stakeholders such as researchers, practitioners,
economists, funders, and representatives from national health and public health
authorities from developing countries. This process would need to realistically
consider how to balance the need for comprehensive data collection with the
practicalities of timeliness and resources. In addition, a critical component for
any indicator framework is what the implementation and maintenance of each
measurement system would cost. The World Health Organization (WHO) has
convened an epidemiology reference group, drawing on headquarters and regional
offices, to develop guidance for chronic disease surveillance systems and to agree on
core indicators that will be used to monitor the major chronic diseases and their risk
factors (Alwan, 2009, personal communication). If this effort takes into account the
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considerations described here, it could be a first step in achieving an implementable
indicator framework (Fuster & Kelly, 2010).‖
For the sake of moving the scorecard idea forward, not just in abstract and
tentative format but in an action-driven way, this report has incorporated materials from
several sources, both from the medical literature, and from authoritative online tools for
chronic disease prevention and calculation. For example, information was incorporated
from the American Heart Association, Mayo Clinic, and the American College of
Cardiology. Granted, this is not an exhaustive list of sources, nor does this report claim
it represents the most scientifically sound sources. That said, the convergence of
recommendations, as is indicated in Table 1, suggests that the ordeal of determining
criteria and standards may be less arduous than it appears.
Recent research (Roberts, Ramnath, Fallows & Sykes, 2007) has examined
results from online heart risk calculators, as these are readily accessible and offer a
potentially powerful means of health education and risk awareness. The researchers
created seventy-two notional individual risk factor profiles, based on six combinations of
presence or absence of smoking habit, hypercholesterolaemia, mixed hyperlipidaemia,
hypertension and family history of premature coronary disease among males and
females in age groups 30, 40, 50, 60, 70 and 80 years. The term ―heart attack risk
calculator‖ was entered into the Google, Yahoo, MSN, AltaVista and Excite search
engines. The first five web pages purporting to contain heart attack risk calculators were
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included in the study. Again, the citations supporting our claim regarding the
convergence of risk indicators are highlighted:
―Different calculators often gave different absolute percentage risk scores for the
same notional risk factor profiles. However, the differences were clinically
insignificant in most cases when comparisons were made between bracketed risk
scores within 5% of one another. Only one calculator gave disproportionately high
risk estimates for women compared to men with the same risk factor profile and
compared to other calculators into which identical risk profiles were entered. The
researchers concluded that there was broad agreement across different calculators
for the range of risk factor profiles entered and that all calculators were based on
reputable risk assessment models.‖ This points to a convergence of calculation
methods across organizations, associations, and medical institutes.
Table 1 lists input from several risk calculators and recommendations as these
appear online, and suggests a model that incorporates agreed-upon means for health
promotion and prevention of heart disease. The table also includes recent medical
information on diabetes. Mostly it indicates that the literature on controlling/preventing
diabetes also converges with the literature on prevention of heart disease. This report
includes some of the raw materials at its conclusion. This also serves to demonstrate
the type of language that is habitually used on various health websites.
Recommendations on preventing heart disease, heart attacks, and stroke from
websites operated by reputable health organizations were compared to make the
scorecard in Table 1. Commonalities are indicated with an X, sometimes
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complemented by additional details (e.g., ―150 min/wk or more‖ supplements ―Exercise
more‖). The guidance given most frequently (3 tallies or more) is the following: maintain
blood pressure within normal range, keep proper weight, quit smoking, eat a healthy
diet, exercise more, and reduce blood cholesterol. Additional suggestions are to
manage diabetes, reduce stress, get regular health screenings, limit alcohol to
moderate amounts, and learn about major risk factors that cannot be changed (ACC,
2010a; 2010b; AHA, 2009; HMS, 2010; Mayo Clinic, 2009; NIH, 2009).
Note, however, that setting desirable indicator levels for a population is not only
difficult, but sometimes unadvisable. For example, whereas the D55 scorecard
advocates blood sugar (A1C) level of less than 7%, other sources suggest
individualizing these goals, based on tendency for hypoglycemia (American diabetes
Association, 2008).
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Table 1: Recommendations for preventing chronic disease
NIH1 AHA2 Mayo3 ACC4 HMS5 Jiao et al., Mukamal et al.6
Patterson et al., Cleary et al.7
Maintain blood pressure within normal range
X X
Goal is 120/80 mmHg
X
Goal is 120/80 mmHg
X X
Under 120/80 mmHg
X
Keep proper weight X X X
Keep BMI below 25
X X
Keep BMI below 25
X
Exercise more X X
150 min/wk or more
X
150 min/wk or more
X
150 min/wk or more
X
Quit smoking X X X X X X X
Eat a healthy diet X X X
Lower intake of saturated fats
X X
Reduce blood cholesterol X
Less than 200 mg/dl
X
Reduce LDL
Increase HDL
X
Less than 200 mg/dl
X
Control LDL
Manage diabetes X X
Keep fasting
X
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blood sugar under 100 mg/dl
Reduce stress X
Limit alcohol to moderate amounts
X X X
Learn about major risk factors that can‘t be changed
X X
Find out about health of relatives
Get regular health screenings X
NIH1 AHA2 Mayo3 ACC4 HMS5 Jiao et al., Mukamal et al.6
Patterson et al., Cleary et al.7
Maintain blood pressure within normal range
X X
Goal is 120/80 mmHg
X
Goal is 120/80 mmHg
X X
Under 120/80 mmHg
X
Keep proper weight X X X
Keep BMI below 25
X X
Keep BMI below 25
X
Exercise more X X
150 min/wk or more
X
150 min/wk or more
X
150 min/wk or more
X
Quit smoking X X X X X X X
Eat a healthy diet X X X
Lower
X X
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intake of saturated fats
Reduce blood cholesterol X
Less than 200 mg/dl
X
Reduce LDL
Increase HDL
X
Less than 200 mg/dl
X
Control LDL
Manage diabetes X X
Keep fasting blood sugar under 100 mg/dl
X
Reduce stress X
Limit alcohol to moderate amounts
X X X
Learn about major risk factors that can‘t be changed
X X
Find out about health of relatives
Get regular health screenings X
1. National Institutes of Health (NIH, 2009) 2. American Heart Association (AHA, 2009) 3. Mayo Clinic (2009) 4. American College of Cardiology (2010a; 2010b) 5. Harvard Medical School (2010) 6. Jiao et al. (2009); Mozaffarian et al. (2009) 7. Paterson et al. (2007); Cleary et al. (2006)
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Converging evidence for these measures also appears in diabetes research,
suggesting that glucose control (individualized for type 2 diabetic patients), smoking
cessation, aspirin use, blood pressure and LDL control are an effective multi-factorial
therapy for reducing diabetes complications (Paterson et al., 2007; Cleary et al., 2006).
The suggested scorecard does not advocate use of aspirin for all or for people over 50
as they pertain to a particular age group, and cannot be delivered as an overarching
recommendation as other sources suggest that the benefits of aspirin need to be
determined with one‘s physician (Mayo Clinic, 2010).
Additionally, two recent large studies published in the Archives of Internal
Medicine (Jiao et al. 2009; Mozaffarian et al. 2009) identified five lifestyle factors as
contributors to pancreatic cancer and diabetes. These five factors alone accounted for a
58% reduction in risk of developing pancreatic cancer, and attributability for diabetes
incidence in 90% of new cases. These five variables include smoking, alcohol use, diet,
body mass index, and physical activity. Once again we see that various lifestyle
interventions contribute to reduction of disease, and that recommended steps for
reducing, for example, cardiovascular illness, also aid in the reduction or prevention of
other dire medical conditions.
Finally, Ratzan (forthcoming) proposes a highly similar concept: ―the individual
scorecard would identify a limited number of key health indicators that are associated
with a healthy physical and mental state. A composite score could include Fasting Blood
Sugar (Diabetes), Body Mass Index (obesity), cholesterol (cardiovascular disease),
blood pressure (hypertension), smoking/tobacco use (cancer and CVD), immunizations
(vaccine preventable disease), and cancer screenings (age and gender specific).‖
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Adding immunizations and cancer screening increase the percentages of preventable
diseases, they do not directly prevent chronic disease.
To allow for examination of how risk information is currently presented, and what
the prevailing recommendations are for preventing risk of heart disease, we suggest
looking at unedited examples from reputable websites, such as the NIH, the American
Heath Association, and Mayo Clinic. These further illustrate the convergence of
information on preventing cardiovascular disease, especially when addressing broad
populations. They also illustrate the delicate balance between accuracy and general
recommendations, suitable for tool that address patients of all health literacy levels, with
or without the mediation of a healthcare professional.
Thus, the goal or promoting health literacy through an efficient health scorecard
pertaining to the prevention and control of chronic disease, may be less hard to
accomplish than it appears at first. Perhaps the decree of the IOM, as quoted above,
(IOM, Fuster & Kelly, 2010), to realistically consider how to balance the need for
comprehensive data collection with the practicalities of timeliness and resources, needs
to be cornerstone in the creation of an agreed-upon scorecard, that will allow for moving
global health forward.