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Health Literacy: A Policy Challenge ForAdvancing High-Quality Health Care

Creating a health-literate America may not be easy, but it is the rightgoal for health policy.

byRuth M. Parker, Scott C. Ratzan, and Nicole Lurie

ABSTRACT:

Healthliteracy,attheintersectionofhealthandeducation,involvesmorethanreading ability. Studies of health literacy abilities show that many Americans with the great-est healthcareneeds havetheleast abilityto comprehendinformationrequiredto navigateand function in the U.S. health care system. This paper defines health literacy as an important policy issue and offers strategies for creating a health-literate America.

ducation is essential

to a thriv-ingsociety.Notonlydoesitprovidethebasis for successful participation in oureconomy and democracy, but it is an essentialdeterminant of health.

While policymakersfrequently search for ways to improve botheducation and health, they rarely appreciatethe relationship between the two. Most arealso not aware of a silent epidemic pertinentto both policy spheres. Health literacy—thedegree to which people have the capacity toobtain, process, and understand basic healthinformation and services needed to make ap-propriate health decisions—is a policy issueat the intersection of health and education.

Health literacy has many dimensions, in-cluding what it means to be able to read, un-derstand, and communicate important medi-cal and health information during differentphasesoflife.Healthliteracyiscentraltomul-tiple health system priorities, including qual-ity, cost containment, safety, and patients’ in-volvement in health care decisions.Active, health-literate consumers can goonline and get the latest information on so-phisticated technological innovations; theycreate demand for the latest technology. Pa-tients with low literacy sit on the other side of the digital divide and are not able to functionas “informed” consumers. Recent work on un-derstanding health disparities across educa-tion groups suggests that technological prog-ress in health care will exacerbate disparitiesovertimeandthatdisparitieswillbelargerforsicker, older, and more vulnerable groups.

Such forecasting bears ominous prediction.Health and health care in America are increas-ingly characterized by technological sophisti-cation, and choice by “informed” consumers isof growing importance in the market. Patientswho are better informed about their optionsand who understand the evidence behind cer-tain approaches to care may have better healthoutcomes.

Those without adequate under-standing—withoutadequatehealthliteracy—cannot function successfully in a market de-signed for active, informed consumers. Theyare the onesmost likely to be left behind.Problemswithhealthliteracyareextremelycommon and costly; millions of Americans

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RuthParkerisfacultyintheDepartmentofMedicine,EmoryUniversitySchoolofMedicine,inAtlanta.ScottRatzanisvice-president,GovernmentAffairs,Europe,atJohnsonandJohnson,basedinBelgium.NicoleLurieisseniornaturalscientistandthePaulO’NeillAlcoaProfessoratRANDinArlington,Virginia.

struggle to read and understand the informa-tion needed to function in the health care sys-tem.

Many current health policy debates per-taining to Medicare and Medicaid, variouspatients’ bills of rights, and privacy of healthinformationarebuiltonanassumptionofade-quate health literacy. How can elderly Medi-care beneficiaries calculate their need for and the affordability of supplemental insurance if they cannot read and understand a bus sched-ule? Proposed patients’ bills of rights would provide managed care enrollees with access toan external appeals process for disputed claims. Can patients with low health literacyskills take advantage of this and other rightscreated under thislegislation?There is a widening policy discussion re-lated to health literacy. It is recognized as oneof the nation’s Healthy People 2010 objectives.

ItisavitalpartoftheWorldHealthOrganiza-tion’s (WHO’s) new health promotion strat-egy.

Further, it is mentioned in a prominentEuropean Commission health policy report.

The Institute of Medicine (IOM) listed healthliteracy as one of twenty priority areas inwhich quality improvement could transformhealth care in America.

The IOM recognized that sharing the same knowledge between cli-nicians and patients and their families is fun-damental to successful self-management. Itidentifiedself-managementandhealthliteracyas a cross-cutting priority, representing an op-portunity for boosting quality of care for allother designated priority areas.Although health literacy is a salient issuefor health policy today, it has been largely ig-nored in political dialogue.

In this paper wedescribe the problem of health literacy, focus-ing on the elderly with chronic health condi-tions, because of their high health care costsand implications for the Medicare program;discuss policy implications; and offer a blue-print for change.

Defining The Problem

The National Adult Literacy Survey(NALS) provides the most comprehensiveportrait of Americans’ abilities to successfullycomplete everyday tasks.

In 1993 NALS iden-tified some forty-four million Americans—about one-fourth of the adult population—ashaving low functional literacy skills. Thesepeople cannot reliably enter background in-formationonaSocialSecurityapplication.An-other fifty million adults have limited literacyskills,meaningtheyhavedifficultyusingabusschedule. In other words, about half of theadult U.S. population has deficiencies in read-ing or computational skills that inhibit fullparticipation in what we might consider nor-maldailyactivities.ThesesameAmericansusethe health care system.The term “health literacy” was first used ina 1974 paper that discussed how health educa-tion affects the health care system, the educa-tionalsystem,andmasscommunication.

Thisinitial discussion called for minimum stan-dards for health literacy for all school gradelevels, presenting an opportunity to link edu-cational and health competencies. Althoughfailures in health education have contributed topoorhealthliteracy,therootsoftheseprob-lems are not just in the history of our educa-tional system. Advances in medical science,changes in the delivery of care, and increased consumerism have created a culture of highhealth literacy demands. At the same time, pa-tients are increasingly encouraged to takemore responsibility for their health. Theirhealth literacy can be thought of as the cur-rency needed to negotiate the system.

Unfor-tunately, there is a growing gap between thedemand for skills and the actual skills of manyAmericans.“Health Literacy” listings in the CurrentBibliographies in Medicine, National Insti-tutes of Health National Library of Medicine(NIH/NLM) number over 450 citations re-lated to background and strategies. The NIH/NLMdefinitionemphasizesthefunctionalna-ture of health literacy.

It helped set theagenda and objectives for Healthy People2010.

People with adequate health literacycan read and understand prescription bottlelabels and warnings, appointment slips, in-formed consent documents, insurance forms,andotheressentialhealth-relatedmaterialsre-quired to successfully function as a patient.

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H e a l t h T r a c k i n g

Healthy People 2010 describes health literacyas being increasingly vital for navigating acomplex health system and for enabling peo-ple to better manage their own health.

How Big Is The Problem?

The literature documents that problemswith health literacy are common and are asso-ciated with poor outcomes.

Those with inad-equate health literacy have less knowledgeabout their medical conditions and treatment,worsehealthstatus,andahigherrateofhospi-talization than the rest of the population.

In one large public hospital study, morethan one-third of English-speaking patientsand 61 percent of Spanish-speaking patientshad inadequate or marginal health literacy.

This study used actual materials from com-mon health tasks to define patients’ health lit-eracy. Forty-two percent did not understand directions on a pill bottle for taking medica-tion on an empty stomach, 43 percent did notunderstandtherightsandresponsibilitiessec-tion of a Medicaid application, and 60 percentcould not understand a standard informed consent form.

Literacy problems are especially commonamongtheelderly;NALSreportedthat44per-centofadultsagesixty-fiveandolderscoredatthe lowest of five skill levels.

NALS did notinclude health-related items, and it is unclearhow many elderly people in the general popu-lation have inadequate health literacy. Amongcommunity-dwelling Medicare managed carepatients in four cities, 34 percent of English-speaking and 54 percent of Spanish-speakingseniors had inadequate or marginal health lit-eracy.

Although health literacy abilities and years of school completed were strongly asso-ciated, 17 percent of respondents with a highschool education and 10 percent with morethan that had inadequate health literacy. Thisis consistent with previous studies demon-strating that the number of years of educationcompleted is not an accurate indicator of adults’ literacy abilities.

According to NALS, 75 percent of Ameri-cans reporting a long-term illness (of sixmonths or more) had limited literacy.

Thismaymeanthattheyknowlessabouttheircon-ditionsorhowtohandlethem.Anationalsur-vey of chronically ill people found that almosthalf did not understand services they were eli-giblefor,andmostdidnotknowwhoprovidesneeded services.

There is a strong inverse relationship be-tween increasing age and health literacy. Al-though there have been no longitudinal stud-ies of individuals’ health literacy skills, datasuggestthattheseskillsmarkedlydeclinewithage.

The higher prevalence of health literacyproblems among the elderly is important be-cause they are also most likely to have chronichealth conditions. Approximately 80 percentof all seniors have at least one chronic condi-tion,and50percenthaveatleasttwo.

Onav-erage, Medicare beneficiaries use 18.5 pre-scriptions annually.

Those with a chroniccondition see eight different physicians yearly,on average.

Since literacy problems are more commonamong the elderly, health literacy problemswillcontinuetoexpandalongwiththeelderlypopulation. There were thirty-five millionAmerican age sixty-five and older in 2000;there will be forty million in 2010 and a pro- jected seventy million in 2030.

Healthliteracyisnotsolelyrelatedtoimmi-gration policy or language ability. Of theninetymillionAmericanswithlimitedliteracy,only15percentwerebornoutsidethecountry,and5percentdescribedthemselvesashavingalearning disability.

The majority of adultswith poor literacy are white, native-bornAmericans. However, language differences,culturalbarriers,anddifferenteducationalop-portunities place the growing populations of minorities at relatively higher risk for low lit-eracy. IntheCommonwealthFund2001HealthCare Quality Survey, only 57 percent of morethan6,000raciallyandethnicallydiverseadultssaid that they found it “very easy” to under-standinformationfromtheirdoctor’soffice.

The Cost

The nation’s growing rate of spending onhealth has been well documented.