White paper: the potential of scorecards/gauge/health self ... · Box 2: Diabetes facts 21 Preventing and Controlling Chronic Disease through Health Literacy 23-23 Scorecards—A

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

The Potential of a Scorecard for Promoting Health Literacy - White Paper - April 26, 2010 √

______________________________________________________________________

1

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


______________________________________________________________________

2

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


______________________________________________________________________

3

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


______________________________________________________________________

4

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


______________________________________________________________________

5

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


______________________________________________________________________

6

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:


______________________________________________________________________

7

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.


______________________________________________________________________

8

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)


______________________________________________________________________

9

• 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.


______________________________________________________________________

10

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


______________________________________________________________________

11

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


______________________________________________________________________

12

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


______________________________________________________________________

13

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


______________________________________________________________________

14

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.


______________________________________________________________________

15

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


______________________________________________________________________

16

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


______________________________________________________________________

17

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:


______________________________________________________________________

18

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.


______________________________________________________________________

19

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

http://www.cdc.gov/nchs/data/nvsr/nvsr57/nvsr57_14.pdf

http://www.cdc.gov/nchs/fastats/lcod.htm


______________________________________________________________________

20

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.


______________________________________________________________________

21

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.


______________________________________________________________________

22

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


______________________________________________________________________

23

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


______________________________________________________________________

24

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.


______________________________________________________________________

25

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.


______________________________________________________________________

26

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


______________________________________________________________________

27

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


______________________________________________________________________

28

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,


______________________________________________________________________

29

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


______________________________________________________________________

30

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


______________________________________________________________________

31

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


______________________________________________________________________

32

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


______________________________________________________________________

33

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


______________________________________________________________________

34

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


______________________________________________________________________

35

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


______________________________________________________________________

36

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


______________________________________________________________________

37

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.‖


______________________________________________________________________

38

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


______________________________________________________________________

39

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


______________________________________________________________________

40

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?


______________________________________________________________________

41

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


______________________________________________________________________

42

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-


______________________________________________________________________

43

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


______________________________________________________________________

44

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


______________________________________________________________________

45

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.


______________________________________________________________________

46

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.


______________________________________________________________________

47

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


______________________________________________________________________

48

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


______________________________________________________________________

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.


______________________________________________________________________

50

References

American College of Cardiology. (2010). Learn about heart disease. Retrieved from

http://www.cardiosmart.org/heartdisease/cttbrowser.aspx?category=risk%20facto

rs.

American College of Cardiology. (2010). Am I at risk? Retrieved from

http://www.cardiosmart.org/CardioSmart/AmIAtRisk.aspx.

American Diabetes Association. (2008). Economic costs of diabetes in the U.S. in 2007.

Diabetes Care, 31 (3), 596-615.

American Diabetes Association, (2008). Position statement: Standards of medical care

in diabetes. Diabetes Care (2008):31(Suppl 1):S12-S54.

American Heart Association. (2009). ABCs of preventing heart attack, stroke and heart

disease. Retrieved from

http://www.americanheart.org/presenter.jhtml?identifier=3035374.

American Medical Association. (2008). Assessing the Nation’s Health Literacy. Key

Concepts and Findings of the National Assessment of Adult Literacy (NAAL).

Chicago: American Medical Association.

American Medical Association. Health literacy. http://www.ama-

assn.org/ama/pub/about-ama/our-people/affiliated-groups/ama-foundation/our-

programs/public-health/health-literacy-program.shtml. Accessed, May 11, 2009.

Ancker, J. S., & Kaufman, D. (2007). Rethinking numeracy: multidisciplinary literature

review. Journal of American Medical Informatics, 14(6), 713–721.

http://www.cardiosmart.org/CardioSmart/AmIAtRisk.aspx


______________________________________________________________________

51

Apfel, B., Jacobson, K. L., Parker, R. M., Taylor, J., Boyle, T., Groves, & Allinson, C.

(2010). Health Literacy: Action and Guide Part 2: Evidence and Case Studies.

Axbridge, UK: World Health Communication Associates Ltd.

Bailey, S., Wolf, M., Jacobson, K., Parker, R., & Ratzan, S. C. (2009). Health Literacy: A

Brief Introduction. Geneva: International Council of Nurses.

Baker, D. W., Parker, R. M., Williams, M. W., & Clark, W. S. (1998). Health literacy and

the risk of hospital admission. Journal of General Internal Medicine, 13, 791-798.

Baker, D. W., Gazmararian, J. A., Williams, M. V., Scott, T., Parker, R. M., Green, D.,

Ren, J., & Peel, J. (2002). Health literacy and performance on the Mini-Mental

State Examination. Aging and Mental Health, 6, 22-29.

Bechara, A., Damasio, H., Tranel, D., & Damasio, A. R. (1997). Decision

advantageously before knowing the advantageous strategy. Science, 275, 1293-

1294.

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.

Bond, M. (2009). Risk school. Nature, 46, 1189-1192.

Bonds, D. E., Zaccaro, D. J., Karter, A. J., Selby, J. V., Saad, M., & Goff, D. C., Jr.

(2003). Ethnic and racial differences in diabetes care: The Insulin Resistance

Atherosclerosis Study. Diabetes Care, 26, 1040-1046.

Berkman, N.D., DeWalt, D.A., Pignone, M.P., et al. (2004). Literacy and health

outcomes, Evidence report/technology assessment. Report # 87. Rockville, MD:

Agency for Healthcare Research and Quality.

Briss, P., Rimer, B., Reilley, B., Coates, R. C., Lee, N. C., Mullen, P., …Lawrence, R.

(2004). Promoting informed decisions about cancer screening in communities

and healthcare systems. Am J Prev Med, 26(1), 67–80.


______________________________________________________________________

52

Cameron, L. D., Leventhal, H. (Eds.) (2003). The Self-Regulation of Health and Illness

Behavior. London: Routledge.

Center for Disease Control and Prevention (CDC). (2008). National Diabetes Fact

Sheet: General information and national estimates on diabetes in the United

States, 2007. Atlanta, GA: US Department of Health and Human Services,

Centers for Disease Control and Prevention.

Cleary, P. A., Orchard, T. J., Genuth, S., et al. (2006). DCCT/EDIC Research Group.

The effects of intensive glycemic treatment on coronary artery clarification in type

1 diabetic participants of the diabetes control and complications

trial/epidemiology and complications study (DCCT/EDIC). Diabetes, 55(12),

3556-3565.

Cochrane Collaboration. (2009). Higgins, J. P. T., & Green, S. (Eds.) Cochrane

Handbook for Systematic Reviews of Interventions. http://www.cochrane-

handbook.org.

Cooper, C., Anderson, P., and Harrison, O. (2010). Global Redesign Initiative—Chronic

Diseases and Conditions. A paper to be presented at the World Economic

Forum, Global Redesign Summit 2010 in Doha, Qatar, May 30-31, 2010.

http://www.weforum.org/en/initiatives/GlobalRedesignInitiative/index.htm

D5 http://www.thed5.org/ Minnesota Community Measurement. The 5 Goals for Living

Well with Diabetes.

Coulter A., & Magee, H. (Eds.). (2003). The European Patient of the Future.

Maidenhead: Open University Press.

Elwyn, G., Edwards, A., Kinnersley, P., & Grol, R. (2000). Shared decision making and

the concept of equipoise: defining the competences of involving patients in

healthcare choices. British Journal of General Practice., 50(460), 892-899

Finkelstein, E. A, Trogdon, J. G., Cohen, J. W., Dietz, W. (2009). Annual Medical

Spending Attributable To Obesity: Payer- And Service-Specific Estimates. Health

Affairs 28 (5). Web Exclusive, July 27, 2009. w822-w831.

http://www.weforum.org/en/initiatives/GlobalRedesignInitiative/index.htm

http://www.thed5.org/


______________________________________________________________________

53

Fuster, V., & Kelly, B. B. (Eds.). (2010). Promoting Cardiovascular Health in the

Developing World: A Critical Challenge to Achieve Global Health. Committee on

Preventing the Global Epidemic of Cardiovascular Disease: Meeting the

Challenges in Developing Countries; Institute of Medicine. Washington, D. C.:

National Academies Press.

Gigerenzer, G., Gaissmaier, W., Kurz-Milcke, E., Schwartz, L. M., & Woloshin, S.

(2007). Helping doctors and patients to make sense of health statistics.

Psychological Science in the Public Interest, 8, 53–96.

Geiss, L., Engelgau, M., Pogach, L., Acton, K., Fleming, B., Roman, S., & Vinicor, F.

(2005). A national progress report on diabetes: successes and challenges.

Diabetes Technology & Therapeutics, 7 (1), 198-203.

Hallowell, N., Statham, H., Murton, F., Green, J., & Richards, M. (1997). ―Talking about

chance‖: The presentation of risk information during genetic counseling for breast

and ovarian cancer. Journal of Genetic Counseling, 6, 269–286.

Hanoch, Y., Miron-Shatz, T., & Himmelstein, M. (2010). Genetic testing and risk

interpretation: How do women understand lifetime risk results? Judgment and

Decision Making, 5(2).

Harris, M. I. (2001). Racial and ethnic differences in health care access and health

outcomes for adults with type 2 diabetes. Diabetes Care, 24, 454-459.

Harris, M.I.(1993). Undiagnosed NIDDM: Clinical and public health issue. Diabetes

Care,16:642- 652.

Harvard Medical School. (2010). 7 steps to be a star in heart health, from the Harvard

Heart Letter. Retrieved from

http://www.health.harvard.edu/press_releases/7-steps-to-be-a-star-in-heart-

health.

Health Improvement Collaborative of Greater Cincinnati. (2009). Getting the Best Care:

Improving Health and Health Care Across Greater Cincinnati. Cincinnati: Health


______________________________________________________________________

54

Improvement Collaborative of Greater Cincinnati.

Higgins, C., Lavin, T., & Metcalfe, O. (2008). Health impacts of education: A review.

Dublin: Institute of Public Health in Ireland.

Institute of Medicine. (2004). Health Literacy: A Prescription to End Confusion. Nielsen-

Bohlman, L., Panzer, A. M., Kindig, D. A. (Eds.) Washington, D. C.: Institute of

Medicine.

Jiao L., Mitrou, P. N., Reedy J., Graubard B. I., Hollenbeck A. R., Schatzkin A.,

Stolzenberg-Solomon, R. (2009). A combined healthy lifestyle score and risk of

pancreatic cancer in a large cohort study. Archives of Internal Medicine, 169(8),

764-770.

Kerr, E. A., Krein, S. L., Vijan, S., Hofer, T. P., & Hayward, R. A. (2001). Avoiding pitfalls

in chronic disease quality measurement: A case for the next generation of

technical quality measures. American Journal of Managed Care, 7, 1033-1043.

Kerr, E. A., Smith, D. M., Hogan, M. M., Hofer, T. P., Krein, S. L., Bermann, M., &

Hayward, R. A. (2003). Building a better quality measure: Are some patients with

‗poor quality‘ actually getting good care? Medical Care, 41, 1173-1182.

Kong, A., Barnett, O., Mosteller, F., & Youtz, C. (1986). How medical professions

evaluate expressions of probability. The New England Journal of Medicine, 315

(12), 740-744.

Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of

America‘s adults: Results from the 2003 National Assessment of Adult Literacy

(NCES 2006-483). US Department of Education. Washington, D. C.: National

Center for Education Statistics.

Laurent, M. R., & Vickers, T. J. (2009). Seeking health information online: Does

Wikipedia matter? Journal of the American Medical Informatics Association, 16


______________________________________________________________________

55

(4), 471–479.

Lean, M. E. J., Mann, J. I., Hoek, J. A., Elliot, R. M., Schofield, G. (2008). Translational

research. British Medical Journal, 337, a863.

Leventhal, H., Diefenbach, M. A., & Leventhal, E. A. (1992). Illness cognition: Using

common sense to understand treatment adherence and affect cognition

interactions. Cognitive Therapy and Research, 16, 143-163.

Lewin Group. (2008). Quality Scorecards Project. Falls Church, VA: The Lewin Group.

Lipkus, I. M., Samsa, G., Rimer, B. K. (2001). General performance on a numeracy

scale among highly educated samples. Medical Decision Making, 21(1), 37–44.

Loewenstein, G. F., Weber, E. U., Hsee, C. K., & Welch, E. S. (2001). Risk as feelings.

Psychological Bulletin, 127, 267-286.

Mayo Clinic. (2009). 5 medication-free strategies to help prevent heart disease.

Retrieved from http://www.mayoclinic.com/health/heart-disease-

prevention/WO00041.

Mayo Clinic. (2010). Daily aspirin therapy: Understand the benefits and risks. Retrieved

from http://www.mayoclinic.com/health/daily-aspirin-therapy/HB00073.

McEwen, L.N., Kim, C., M. Haan, and The TRIAD Study Group. Diabetes reporting as a

cause of death: Results from translating research into action for diabetes

(TRIAD). Diabetes Care, 29(2):247-253.

Mechanic, D. (2004). In my chosen doctor I trust. And that trust transfers from doctors to

organizations. British Medical journal, 329, 1418–1419.

Milken Institute (2007). An unhealthy America: the economic impact of chronic disease -

- Charting a new course to save lives and increase productivity and economic

growth.

Miron-Shatz, T., Bowen, B., Diefenbach, M., Goldacre, B., Mühlhauser, I., Smith, R. S.

W.,& 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


______________________________________________________________________

56

doctors, better patients, better decisions: Envisioning healthcare 2020.

Strüngmann Forum Report (Vol. 6). Cambridge: MIT Press.

Miron-Shatz, T., Hanoch, Y., Graef, D., & Sagi, M. (2009). Presentation format,

numeracy, and emotional reactions: The case of prenatal screening tests.

Journal of Health Communication, 14(5): 439-450.

Miron-Shatz, T., Hanoch,Y., Saphire-Bernstein, S. (working paper). Presentation

matters, in spite of expertise: Presentation of risk-related information affects the

comprehension and risk assessments of genetic counselors.

Mozaffarian, D., Kamineni, A., Carnethon, M., Djoussé, L., Mukamal, K. J., Siscovick, D.

(2009). Lifestyle risk factors and new-onset diabetes mellitus in older adults: The

cardiovascular health study. Archives of Internal Medicine, 169(8), 798-807.

Nannenga, M. R., Montori, V. M., Weymiller, A. J., Smith, S. A., Christianson, T. J. H.,

Bryant, S. C.,& Guyatt, G. H. (2009). A treatment decision aid may increase

patient trust in the diabetes specialist. The Statin Choice randomized trial. Health

Expectations, 12, 38–44.

Narayan, K. M. V., Boyle, J. P., Thompson, T. J., et al. (2003). Lifetime risk for diabetes

mellitus in the United States. Journal of the American Medical Association,

290(14):1884-1890.National Center for Health Statistics (NCHS). (2007). Health,

United States, 2007. With chartbook on trends in the health of Americans.

Washington, D. C.: U.S. Government Printing Office. Library of Congress No.

76-641496.

National Institutes of Health. (2009). Brain basics: Preventing stroke. Retrieved from

http://www.ninds.nih.gov/disorders/stroke/preventing_stroke.htm.

Nolan T., & Berwick, D. (2006). All-or-None Measurement Raises the Bar of

Performance. Journal of the American Medical Association, 295(10), 1168-

1170.s

Okoro, C. A., Mokad, A. H., Ford, E. S., Bowman, B. A., Vinicor, F., & Giles, W. H.

(2004). Are persons with diabetes practicing healthier behaviors in the year

2001? Results from the Behavioral Risk Factor Surveillance System. Preventive

Medicine, 38, 203-208.


______________________________________________________________________

57

O‘Neill, O. (2002). Question of Trust: The BBC Reith Lectures. Cambridge: Cambridge

University Press.

Paterson, A. D., Rutledge, B. N., Cleary, P. A., et al. (2007). Diabetes control and

complications trial/epidemiology of diabetes interventions and complications

research group. The effects of intensive diabetes treatment on resting heart rate

in type 1 diabetes: The diabetes control and complications trial/epidemiology and

complications study. Diabetes Care, 30(8), 2210-2112.

Persell, S. D., Keating, N. L., Landrum, M. B., Landon, B. E., Ayanian, J. Z., Borbas, C.,

& Guadagnoli, E. Relationship of diabetes-specific knowledge to self-

management activities, ambulatory preventive care, and metabolic outcomes.

Preventive Medicine, 39, 746-752.

Peters, E., Hibbard, J., Slovic, P., & Dieckmann, N. (2007). Numeracy skill and the

communication, comprehension, and use of risk-benefit information. Health

Affairs 26(3), 741–748.

Primaris. Diabetes personal record card. Retrieved from:

http://www.primaris.org/node/1078

Ratzan, S. (forthcoming). Integrating Health Literacy into Primary and Secondary

Prevention Strategies. Paper presented September 15, 2009, at Meeting 8:

Roundtable on Health Literacy - Workshop on Integrating Health Literacy in

Prevention Programs, Institute of Medicine (IOM). Proceedings of the

presentation and paper are forthcoming from the IOM.

Ratzan, S. C., & Parker, R. M. (2000). Introduction. In National Library of Medicine

Current Bibliographies in Medicine: Health Literacy. NLM Pub. No. CBM 2000-1.

Bethesda, MD: National Institute of Health, U. S. Department of Health, U. S.

Department of Health and Human Services.

Roberts, E. B., Ramnath, R., Fallows, S., Sykes, K. (2007). ―First-hit‖ heart attack risk

calculators on the world wide web: implications for laypersons and healthcare

http://www.primaris.org/node/1078


______________________________________________________________________

58

practitioners. International Journal of Medical Informatics, 77(6), 405-412. Epub

2007 Oct 1.

Shaughnessy, A. F., Slawson, D. C., Bennett, J. H. (1994). Becoming an information

master: a guidebook to the medical information jungle. Journal of Family

Practice, 39, 489-99.

Schillinger, D., Grumbach, K., Piette, J., Wang, F., Osmond, D., Daher, C., Bindham, A.

B. (2002). Association of health literacy with diabetes outcomes. Journal of

American Medical Association, 288, 475-482.

scorecard. (2010). In Merriam-Webster Online Dictionary. Retrieved April 18, 2010, from

http://www.merriam-webster.com/dictionary/scorecard

Slovic, P., Finucane, M., Peters, E., & MacGregor, D. G. (2002). The affect heuristic. In

Gilovich, T., Griffin, D., & Kahneman, D. (Eds.), Heuristics and Biases: The

Psychology of Intuitive Judgment. (397-420). Cambridge: Cambridge University

Press.

Slovic, P., Finucane, M. L., Peters, E., & MacGregor, D. G. (2004). Risk as analysis and

risk as feelings: Some thoughts about affect, reason, risk, and rationality. Risk

Analysis, 24, 1-12.

UNAIDS. (2009). AIDS Epidemic Update 2009. Geneva: UNAIDS.

U.S. Department of Health and Human Services. (2002). HHS, American Diabetes

Association renew campaign to help persons with diabetes know their

cardiovascular risks. New ADA survey shows many know little about risks of

heart disease, stroke [press release]. Retrieved from the U.S. Department of

Health and Human Services website:

http://www.hhs.gov/news/press/2002pres/20020219.html

U. S. Department of Health Human Services. (2010). Healthy People 2010, 2nd ed.,

Washington, DC: U.S. Government Printing Office.


______________________________________________________________________

59

Van Tol-Geerdink, J. J., Stalmeier, P. F. M., Van Lin, E. N., Schimmel, E., Huizenga, H.,

Van Daal, W., et al. (2006). Do prostate cancer patients want to choose their own

radiation treatment. International Journal of Radiation Oncology Biology Physics,

66, 1105-1111.

Variyam, J. N. (2008). Do nutritional labels improve dieatary outcomes? Health

Economics, 17(6), 695-708.

Vernon, J. A., Trujillo, A., Rosenbaum, S., & DeBuono, B. (2007). Low Health Literacy:

Implications for National Health Policy. National Bureau for Economic Research.

Wallsten, T. S., Budescu, D. V., Zwick, R., & Kemp, S. M. (1993). Preference and

reasons for communicating probabilistic information in numerical or verbal terms.

Bulletin of the Psychonomic Society, 31, 135–138.

Ward, M. M., Yankey, J. W., Vaughn, T. E., Boots Miller, B. J., Flach, S. D., Welke, K.

F.,& Doebbeling, B. N. (2004). Physician process and patient outcome measures

for diabetes care: Relationships to organizational characteristics. Medical Care,

42, 840-850.

Weinman, J., Petrie, K., Moss-Morris, R., & Horne, R. (1996). The illness perception

questionnaire: A new method for assessing the cognitive representation of

illness. Psychology and Health, 11, 431-445.

Williams, M. V., Baker, D. W, Parker, R. M., Nurss, J. R. (1998). Relationship of

functional health literacy to patients‘ knowledge of their chronic disease: A study

of patients with hypertension and diabetes. Archives of Internal Medicine. 158(2),

166-172.

Williams, M. W., Baker, D. W., Honig, E.G., Lee, T. M., & Nowlan, A. (1998a).

Inadequate literacy is a barrier to asthma knowledge and self-care. Chest,

114(4), 1008-1015.


______________________________________________________________________

60

WHO (World Health Organization). (2009e). World health statistics 2009. Geneva:

WHO.

Wolf, M. S., Gazmaranian, J. A., & Baker, D. W. (2005). Health literacy and functional

health status among older adults. Archives of Internal Medicine, 165, 1946-1952.

Woloshin, S., Schwartz, L. M., & Welch, H. G. (2004, April 28). The value of benefit data

in direct-to-consumer drug ads [Electronic Version]. Health Affairs Web

Exclusive, 234–245.

Wong, N. & King, T. (2008). The cultural construction of risk understandings through

Illness narratives. Journal of Consumer Research, 34 (5), 579-594.

Zajonc, R. B. (1980). Feeling and thinking: Preferences need no inferences. American

Psychologist, 35, 151-175.

Zarcadoolas, C., Pleasant, A. F., Greer, D. S. (2006). Advancing Health Literacy: A

framework for understanding and action. San Francisco: Jossey-Bass.


______________________________________________________________________

61

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


______________________________________________________________________

62

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


______________________________________________________________________

63

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

http://www.ncbi.nlm.nih.gov/pubmed?term=%22Ramnath%20R%22%5BAuthor%5D

http://www.ncbi.nlm.nih.gov/pubmed?term=%22Fallows%20S%22%5BAuthor%5D


______________________________________________________________________

64

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


______________________________________________________________________

65

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).


______________________________________________________________________

66

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


______________________________________________________________________

67

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


______________________________________________________________________

68

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)


______________________________________________________________________

69

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).‖


______________________________________________________________________

70

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.

Documents

White paper: the potential of scorecards/gauge/health self ... · Box 2: Diabetes facts 21 Preventing and Controlling Chronic Disease through Health Literacy 23-23 Scorecards—A