Health Literacy Policy Challenge

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M a r k e t W a t c h

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

Creating a health-literate America may not be easy, but it is the right

goal for health policy.

by Ruth M. Parker, Scott C. Ratzan, and Nicole Lurie

ABSTRACT: Health literacy, at the intersection of health and education, involves more than

reading ability. Studies of health literacy abilities show that many Americans with the great-

est health care needs have the least ability to comprehend information required to navigate

and function in the U.S. health care system. This paper defines health literacy as an impor-

tant policy issue and offers strategies for creating a health-literate America.

Ed u c a t i o n i s e s s e n t i a l to a thriv-ing society. Not only does it provide thebasis for successful participation in our

economy and democracy, but it is an essentialdeterminant of health.1 While policymakers

frequently 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 literacythedegree to which people have the capacity toobtain, process, and understand basic healthinformation and services needed to make ap-propriate health decisionsis a policy issueat the intersection of health and education.2

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 differentphases of life. Health literacy is central to mul-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 ofthe 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 disparitiesover time and that disparities will be larger forsicker, older, and more vulnerable groups.3

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. Patients

who are better informed about their optionsand who understand the evidence behind cer-tain approaches to care may have better healthoutcomes.4 Those without adequate under-standingwithout adequate health literacycannot function successfully in a market de-signed for active, informed consumers. Theyare the ones most likely to be left behind.

Problems with healthliteracy are extremelycommon and costly; millions of Americans


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2003 Project HOPEThe People-to-People Health Foundation, Inc.

Ruth Parker is faculty in the Department of Medicine, Emory University School of Medicine, in Atlanta. ScottRatzan is vice-president, Government Affairs, Europe, at Johnson and Johnson, based in Belgium. Nicole Lurie issenior natural scientist and the Paul ONeill Alcoa Professor at RAND in Arlington, Virginia.


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struggle to read and understand the informa-tion needed to function in the health care sys-tem.5 Many current health policy debates per-taining to Medicare and Medicaid, various

patients bills of rights, and privacy of healthinformation are built on an assumption of ade-quate health literacy. How can elderly Medi-care beneficiaries calculate their need for andthe affordability of supplemental insurance ifthey cannot read and understand a bus sched-ule? Proposed patients bills of rights wouldprovide managed care enrollees with access toan external appeals process for disputedclaims. Can patients with low health literacy

skills take advantage of this and other rightscreated under this legislation?There is a widening policy discussion re-

lated to health literacy. It is recognized as oneof the nations Healthy People 2010 objectives.6

It is a vital part of the World Health Organiza-tions (WHOs) new health promotion strat-egy.7 Further, it is mentioned in a prominentEuropean Commission health policy report.8

The Institute of Medicine (IOM) listed health

literacy as one of twenty priority areas inwhich quality improvement could transformhealth care in America.9 The IOM recognizedthat sharing the same knowledge between cli-nicians and patients and their families is fun-damental to successful self-management. Itidentified self-management and health literacyas 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.10 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.11 In 1993 NALS iden-

tified some forty-four million Americansabout one-fourth of the adult populationashaving low functional literacy skills. Thesepeople cannot reliably enter background in-

formation on a Social Security application. An-other fifty million adults have limited literacyskills, meaning they have difficulty using a busschedule. 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-mal daily activities. These same Americans usethe health care system.

The term health literacy was first used in

a 1974 paper that discussed how health educa-tion affects the health care system, the educa-tional system, and mass communication.12 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 contributedto poor health literacy, the roots of these prob-lems are not just in the history of our educa-

tional system. Advances in medical science,changes in the delivery of care, and increasedconsumerism 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.13 Unfor-tunately, there is a growing gap between thedemand for skills and the actual skills of many

Americans.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/NLM definition emphasizes the functional na-ture of health literacy.14 It helped set theagenda and objectives for Healthy People2010.15 People with adequate health literacycan read and understand prescription bottlelabels and warnings, appointment slips, in-formed consent documents, insurance forms,and other essential health-related materials re-quired to successfully function as a patient.16

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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.17

How Big Is The Problem?

The literature documents that problemswith health literacy are common and are asso-ciated with poor outcomes.18 Those with inad-equate health literacy have less knowledgeabout their medical conditions and treatment,worse health status, and a higher rate of hospi-talization than the rest of the population.19

In one large public hospital study, more

than one-third of English-speaking patientsand 61 percent of Spanish-speaking patientshad inadequate or marginal health literacy.20

This study used actual materials from com-mon health tasks to define patients health lit-eracy. Forty-two percent did not understanddirections on a pill bottle for taking medica-tion on an empty stomach, 43 percent did notunderstand the rights and responsibilities sec-tion of a Medicaid application, and 60 percentcould not understand a standard informedconsent form.21

Literacy problems are especially commonamong the elderly; NALS reported that 44 per-cent of adults age sixty-five and older scored atthe lowest of five skill levels.22 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.23 Although health literacy abilities andyears 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.24

According to NALS, 75 percent of Ameri-cans reporting a long-term illness (of sixmonths or more) had limited literacy.25 This

may mean that they know less about their con-ditions or how to handle them. A national sur-vey of chronically ill people found that almosthalf did not understand services they were eli-

gible for, and most did not know who providesneeded services.26

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, datasuggest that these skills markedly decline withage.27 The higher prevalence of health literacyproblems among the elderly is important be-cause they are also most likely to have chronic

health conditions. Approximately 80 percentof all seniors have at least one chronic condi-tion, and 50 percent have at least two.28 On av-erage, Medicare beneficiaries use 18.5 pre-scriptions annually.29 Those with a chroniccondition see eight different physicians yearly,on average.30

Since literacy problems are more commonamong the elderly, health literacy problemswill continue to expand along with the elderly

population. 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 2030.31

Health literacy is not solely related to immi-gration policy or language ability. Of theninety million Americans with limited literacy,only 15 percent were born outside the country,and 5 percent described themselves as having alearning disability.32 The majority of adultswith poor literacy are white, native-bornAmericans. However, language differences,cultural barriers, and different educational op-portunities place the growing populations ofminorities at relatively higher risk for low lit-eracy. In the Commonwealth Fund 2001 HealthCare Quality Survey, only 57 percent of morethan 6,000 racially and ethnically diverse adultssaid that they found it very easy to under-stand information from their doctors office.33

The CostThe nations growing rate of spending on

health has been well documented.34 Highhealth care costs are magnified for people with


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poor health literacy. Inadequate health literacywas an independent risk factor for hospital ad-mission among elderly managed care enrollees,even after demographics, socioeconomic sta-

tus, health behavior, chronic diseases, and self-reported physical and mental health were ad-justed for.35 To date, only one economic studyhas been conducted on the overall costs ofhealth literacy. The preliminary analysis, bythe National Academy on an Aging Society, es-timates that low health literacy costs thehealth care system $30$73 billion annually(1998 dollars).36 Sixty-three percent of the ad-ditional costs attributed to low health literacy

may be borne by public programs.37

In 2000 nearly half of the U.S. populationhad a chronic condition. Direct medical costsfor chronic conditions were $510 billion inthat year. By 2020 this is projected to double tomore than $1 trillion. In 2020 an estimated 157million Americans will have at least onechronic condition, and sixty million will havetwo or more such conditions.38 Those withchronic diseases have more health literacy de-

mands yet often have fewer health literacyskills. A recent study of patients with diabetesfoundhealth literacy independently associatedwith worse blood sugar control and higherrates of complications such as retinopathy,blindness, and cerebrovascular disease.39

Unanswered Questions

Despite growing information on the magni-tude and consequences of health literacy prob-lems, more research needs to be done on howto easily detect and improve health literacy. Todate there has been only a small research in-vestment in searching for strategies to addressthis issue. Current efforts focus mostly on re-vising written information to a simpler level,and a few studies have demonstrated thatmore simply written materials improveknowledge.40 Despite the obvious benefits ofsimplified written materials, though, a simplywritten pamphlet or consent document on its

own does not adequately inform a patient.Nonreading solutions, including cartoons,pictographs with spoken explanations, andvideos, also can increase comprehension and

should be considered.41

The nature of the relationship between ad-vancing age and declining health literacy skillsrequires further investigation. Longitudinal

cohort studies are needed to understand therelationships between prior educational at-tainment and cognitive decline during aging,and solutions will depend on understandingthe root causes. If cognitive decline is a largecontributor, school-based educational solu-tions alone cannot bridge the gap.

What is the best way to communicate im-portant health information to ensure adequateunderstanding? What actual content is re-

quired for patients with chronic illness toachieve self-management goals? How can mul-timedia technologies improve health literacy?How do screening and identifying patientswith inadequate health literacy affect thepatient-clinician relationships and health out-comes? In the current practice environment,time is equated with money, and practitionersare not reimbursed for educating patients.Whose responsibility is it to spend the extra

time and effort to ensure that patients have theunderstanding they need to take care of them-selves? Who will pay for this?

Implications For Policy

A two-year-old is diagnosed with an ear infec-tion and prescribed an antibiotic. Her motherunderstands that her child has an ear infectionand knows she should take the prescribed medi-cation twice a day. After looking at the label onthe bottle and deciding that it does not tell how

to take the medicine, she fills a teaspoon andpours the antiobiotic into her daughters ear.

Health practitioners are becoming aware of just how commonly people struggle withhealth literacy. Other examples include diffi-culty monitoring multiple medications by el-derly patients and overdosing a childwith a fe-ver reducer despite inclusion of an eyedropperto ensure proper dosage. Increased media at-

tention and the work of professional societies,including the American Medical Associationand the American College of PhysiciansAmerican Society of Internal Medicine Foun-dation, and voluntary health agencies such as

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the American Cancer Society have helped toraise awareness. Both the Joint Commission onAccreditation of Healthcare Organizations(JCAHO) and the National Committee for

Quality Assurance (NCQA) have focusedgreater attention on health communicationand developed guidelines about patients un-derstanding and the readability of patient ma-terials. Congress and the U.S. Food and DrugAdministration (FDA) have recognized foryears the need to improve patients under-standing of prescription drugs. So far, thatawareness has not extended to other areas ofmedical care and other parts of the federal leg-

islative or regulatory apparatus.n Link with quality improvement ef-

forts. In the effort to improve quality, one goalfor health policy should be to ensure a health-literate America. What would a health-literatepublic look like? Informed patients have betteroutcomes; they are more concordant with thepeople who provide health services; they seekcare earlier because they recognize warningsigns; they read and comprehend instructions;

they understand what their doctors advisethem to do; and they are not afraid to ask ques-tions when they do not understand. They areable to seek new information on the Internet,read the newspaper critically, and place newhealth studies in context. A high-qualityhealth care system is characterized by appro-priate use of drugs and services, not misuse,overuse, or underuse.n Role of education improvements. If

the literacy of all Americans is improved, theneducation probably will eliminate most of pa-tients reading problems. This will require atleast a generation, perhaps even longer. How-ever, in addition to reading, health literacy re-quires understanding and solving health is-sues, so simply counting on education to solvethe health literacy problem is not enough. Al-though education can improve general literacy,ensuring understanding of health and healthcare information is essential for any plan to im-prove health.n Improvement across generations.

Health literacy must be addressed across thelifespan, and progress will be incremental. Re-

search demonstrates that we retain much ofwhat we learn as youth, which makes it logicalto teach essential health literacy skills to youthand find ways to reinforce them across the life-

span. Because older people have more diffi-culty multitasking and learning new informa-tion, the process must start at younger ages.

As we improve the health literacy of newgenerations, we must simultaneously addressthe current health literacy problems of mil-lions of Americans. Systemic changes in theway we deliver care are required to address themisinformation, miscommunication, and mis-takes that characterize the health care experi-

ence of people with inadequate health literacy.

A Blueprint For Change

We estimate that at least one-third ofAmericans have major health literacy prob-lems; many are elderly, with chronic condi-tions. Envisioning a health-literate America re-quires a blueprint for change. We will need todevelop indicators and mechanisms by whichall sectorseducation, health systems, andproviderscan be accountable. Health liter-acy is an issue of ethics and equity and is es-sential to reducing disparities. Although westrive to treat all patients equally, it is impor-tant to remember that not everyone has thesame health literacy abilities. The followingare policy-oriented strategies for improvinghealth literacy.n Research and measurement. (1) Pro-

vide funding for much-needed mult i-disciplinary research on health literacy. Thisincludes creating indicators as a tool for mea-suring and gauging progress in addressing thissilent epidemic, as well as identifying mea-surement and reporting strategies. (2) Con-sider using existing tools, such as the MedicareCurrent Beneficiary Survey and NationalHealth Interview Survey, to gather informa-tion on the dimensions of health literacy, in-cluding its implications on use of services andcosts. Such measurement(s), if administered

regularly, also could gauge progress toward theHealthy People 2010 objective to improve thehealth literacy of persons with inadequate ormarginal literacy skills. (3) Stimulate federal


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funding of interventional and health commu-nication science research aimed at bridging thegap in communication created by inadequatehealth literacy. (4) Use new technologies to

develop non-reading solutions, recognizingthat addressing health literacy goes beyondbetter-written communications. The SmallBusiness Innovation Research (SBIR) programis one potential funding source to consider.n Reducing health disparities. (5) In-

corporate health literacy improvements in ex-isting and future activities related to the elimi-nation of health disparities. Problems withhealth literacy can contribute to and be an un-

derlying factor for socioeconomic health dis-parities. (6) Establish health literacy learningstandards across the lifespan. These can be in-corporated into school-based education.n Engaging the federal government. (7)

Encourage federal funding of research in eachof the IOMs twenty priority areas for im-provement in health care quality to define thecritical health literacy tasks for each. Workwith target populations having low, marginal,

and adequate health literacy to identify howbest to communicate needed information to allpopulations. (8) Convene and educate stake-holders in HHS, the Department of Education,and other federal entities. As part of thisawareness raising, federal agencies should beencouraged to introduce health literacy intoappropriate aspects of their health-related ac-tivities. Health literacy should become a prior-ity in the federal governments communication

about health issues with the public. (9) Sup-port the recently announced IOM initiative tomap a national agenda and system solution tocreating a health-literate America. (10) En-courage the Centers for Medicare and Medic-aid Services (CMS) to conduct demonstrationprojects to further assess and address the im-pact of low health literacy among the benefi-ciaries of publicly funded programs, with par-ticular emphasis on Medicare and Medicaid.n Improving medical practice. (11) Stim-

ulate efforts to make health literacy a compo-nent of training for health professionals.Awareness of and assessment of health literacyshould be part of provider systems and quality

analysis. (12) Include health literacy in studiesof preventive services. The U.S. Preventive Ser-vices Task Force should study whether healthliteracy screening should be recommended.

Im p r o v i n g h e a l t h l i t e r a c y is a toolfor improving health and health care inAmerica. It is both a process and an out-

come. Creating a truly health-literate Amer-ica is a challenge requiring leadership, strat-egy, cooperation, and most importantly, ademocracy with citizens who are well in-formed. It may not be easy, but it is the rightgoal for health policy.

RuthParker received financial support from Pfizer Inc.during the time she prepared this manuscript. Theauthors thank Julie Gazmararian for her suggestionsand Elizabeth Terry for her research assistance.

NOTES1. I. Yen and N. Moss, Unbundling Education: A

Critical Discussion of What Education Confersand How It Lowers Risk for Disease and Death,

Annals of the New York Academy of Sciences 896(1999): 350351.

2. C. Selden et al., Current Bibliographies in Medi-cine 20001: Health Literacy, February 2000,www.nlm.nih.gov/pubs/cbm/hliteracy.html (11September 2002).

3. D. Goldman and D. Lakdawalla, UnderstandingHealth Disparities across Education Groups,NBER Working Paper no. 8328 (Cambridge,Mass.: National Bureau of Economic Research,

June 2001).

4. P. Ginsburg, Rough Seas Ahead for Purchasers

and Consumers, Navigating A Changing Health Sys-tem: Mapping Todays Markets for Policy Makers, July2002, www.hschange.org/CONTENT/452 (4September 2002).

5. AMA Foundation, Quick Facts about HealthLiteracy, www.ama-assn.org/ama/pub/category/8577.html (12 May 2003).

6. U.S. Department of Health and Human Services,Healthy People 2010, Section 11-2: Health Commu-nication Objective, Pub. no. 20402-9382 (Wash-ington: U.S. Government Printing Office, No-vember 2000).

7. Health Promotion, Report by the Secretariat, WorldHealth Organization, no.9, 30 March2001, www.who.int/gb/EB_WHA/PDF/WHA54/ea548.pdf(12 May 2003).

8. High Level Group on Innovation and Provision of Medi-

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cines in the European Union: Recommendations for Ac-tion, May 2002, europa.eu.int/comm/health/ph/key_doc/key08_en.pdf (4 September 2002).

9. K. Adams and J. Corrigan, Priority Areas for Na-tional Action: Transforming Health Care Quality

(Washington: National Academies Press, Janu-ary 2003).

10. E. Rogers, S. Ratzan, and J. Payne, Health Liter-acy: A Nonissue in the 2000 Presidential Elec-tion,American Behavioral Scientist 44, no. 12 (2001):21722195.

11. I. Kirsch et al.,AdultLiteracy in America: A First Lookat the Results of the National Adult Literacy Survey(Washington: U.S. Department of Education,National Center for Education Statistics, 1993).

12. S. Simonds, Health Education as Social Policy,

Health Education Monograph 2 (Baltimore:Johns Hopkins University, 1974), 125.

13. Selden et al., Current Bibliographies.

14. Ibid.

15. HHS, Healthy People 2010.

16. American Medical Association, Health Literacy:Report of the Council on Scientific Affairs, Jour-nal of the American Medical Association 281, no. 6(1999): 552557.

17. HHS, Healthy People 2010.

18. J. Gazmararian et al., Health Literacy among

Medicare Enrollees in a Managed Care Organi-zation, Journal of the American Medical Association281, no. 6 (1999): 545551.

19. AMA, Health Literacy.

20. M. Williams et al., Inadequate FunctionalHealth Literacy among Patients at Two PublicHospitals, Journal of the American Medical Associa-tion 274, no. 21 (1995): 16771682.

21. Ibid.

22. Kirsch et al.,Adult Literacy in America.

23. Gazmararian et al., Health Literacy among

Medicare Enrollees.24. AMA, Health Literacy.


26. InstituteforHealth and Aging, Universityof Cal-ifornia, San Francisco, Chronic Care in America: ATwenty-first Century Challenge, Report prepared forthe Robert Wood Johnson Foundation (SanFrancisco: UCSF, August 1996).

27. Gazmararian et al., Health Literacy amongMedicare Enrollees.

28. Centers for Disease Control and Prevention, Na-

tional Center for Chronic Disease Prevention andHealth Promotion, Chronic Disease Notes and Re-

ports, www.cdc.gov/nccdphp/cdfall99.pdf (12May 2003).

29. M. Davis et al., Prescription Drug Coverage,

Utilization, and Spending among Medicare Ben-eficiaries, Health Affairs (Jan/Feb 1999): 231243.

30. G. Anderson and J.M. Knickman, Changing theChronic Care System to Meet Peoples Needs,Health Affairs (Nov/Dec 2001): 146160.

31. U.S. Census Bureau, National Population Pro- jections, I. Summary Files, 13 January 2000,www.census.gov/population/www/projections/natsum-T3.html (4 September 2002).


33. K.S. Collins et al., Diverse Communities, CommonConcerns: Assessing Health Care Quality for Minority

Americans (New York: Commonwealth Fund,March 2002).

34. S. Heffler et al., Health Spending Projections for20012011: The Latest Outlook, Health Affairs

(Mar/Apr 2002): 207218.35. D. Baker et al., Functional Health Literacy and

the Risk of Hospital Admission among MedicareManaged Care Enrollees, American Journal of Pub-lic Health 92 (2002): 12781283.

36. R. Friedland, New Estimates of the High Costsof Inadequate Health Literacy, in Pfizer Inc. con-ference proceedings report from PromotingHealth Literacy: A Call to Action,New YorkCity,78 October 1998, 610; and AMA, Health Liter-acy.

37. Ibid.

38. Partnership for Solutions, Rapid Growth Ex-pected in Number of Americans Who HaveChronic Conditions, Statistics and Research:Prevalence, 2001, www.partnershipforsolutions.org/statistics/prevalence.cfm (21 April 2003).

39. D. Schillinger et al., Association of Health Liter-acy with Diabetes Outcomes,Journal of the Ameri-can Medical Association 288, no. 4 (2002): 475482.

40. AMA, Health Literacy.

41. T. Davis et al., Health Literacy and Cancer Com-munication, Cancer Journal for Clinicians (May/

June 2002): 134149.


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Health Literacy Policy Challenge