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Low Health Literacy: A Barrier to EffectivePatient CareBy And r e a C . S eu r e r, MD and H . B r u c e Vog t , MD

Abstract BackgroundHealth literacy is defined in the U.S. Department of Health and Human Services initiative Healthy People 2010as “the degree to which individuals have the capacity to obtain, process, and understand basic health informationand services needed to make appropriate health decisions.”1 It is estimated that 48.8 million Americans are func-tionally illiterate, making health literacy a major obstacle for providing health care. Although communicating withphysicians is a small component of the tasks that are incorporated in a definition of health literacy, it remains themost important aspect of this concept contributing to personal health.

MethodsPrimary care clinics within the Sioux Falls area were provided with both English and Spanish patient educationbrochures on communicating with physicians. A survey was then distributed to determine how low health litera-cy was affecting physician practices and what they were doing to remove the obstacles that health literacy present-ed. Physicians were asked to evaluate the multiple skills and competencies required by patients to access healthcare services and resources they use to assist patients.

ResultsA total of 77 surveys were distributed. Twenty-two (28.6 percent) were returned. Of the physicians who returnedthe survey, the majority (77 percent) thought that low health literacy is a moderate obstacle in their practices.Several physicians stated that their offices had at least one method in place to assist those with low health litera-cy, but none of them were using a formal test of health literacy. Only six physicians could name a communityresource to assist patients with low health literacy.

ConclusionLow health literacy is an unavoidable barrier to effective patient care for physicians across the country. If the fullspectrum definition of health literacy is understood by physicians and carefully considered in the context of theirown practices, it is likely they would come to the realization that health literacy is a greater obstacle to providinghealth care than they previously considered. In order to communicate more effectively and better serve ourpatients, we need to resist stereotyping patients when estimating (e.g., over estimating or under estimating) theirhealth literacy. We also need to identify educational resources and methods of communication that will ease theburden of health illiteracy. With nearly half of patients having low health literacy nationwide, it is essential tounderstand health literacy and acknowledge this problem in all of our practices.

Introduction/BackgroundHealth literacy is defined in the U.S. Department of Healthand Human Services initiative Healthy People 2010 as “thedegree to which individuals have the capacity to obtain,process, and understand basic health information and serv-

ices needed to make appropriate health decisions.”1 Healthliteracy is often misunderstood as being the same as generalliteracy because it is a fairly new topic in the health careworld. “Health” literacy is certainly more specific than“general” literacy, but it is also broader than what it may

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imply – the ability to understand medical jargon. Rather, itencompasses all of the tasks necessary to most effectivelyreceive health care. The spectrum of health literacyincludes the ability to make an appointment, read a calen-dar to record the date and time, read a bus schedule or roadmap to get to the clinic or hospital, navigate within theclinic or hospital, understand the physician’s diagnosticimpression and instructions and follow a treatment regi-men. A 2004 report published by the Institute of Medicineestimated that 90 million Americans, nearly half of theU.S. adult population, had low health literacy or were func-tionally health illiterate.2 Although communicating withphysicians is only one component of the tasks that areincorporated in the definition of health literacy, it remainsthe most important aspect of this concept with regard tocontributing to one’s personal health.

In order to assess the health literacy in a population ofSouth Dakota patients and physician understanding of rel-evant issues in this regard, a three-part study was conducted.The first part of this study tested the health literacy level ofpatients in both rural and urban primary care clinics in east-ern South Dakota. This study was completed in 2008through the collaboration of the University of SouthDakota Undergraduate Honors Program, the SanfordSchool of Medicine Department of Family Medicine andRush-Net, the Rushmore practice-based research networkin South Dakota.3 The patients were evaluated with twovalidated tools that measure health literacy – the short formof the test of functional health literacy in adults (S-TOFH-LA) and the Newest Vital Sign (NVS). Results suggestedthat South Dakota’s patients follow national trends, withapproximately one-third of patients at each participatingclinic demonstrating marginal or limited health literacy onat least one test. Improving health literacy, as well asimproving communication in health care settings, is veryimportant to the future of health care in South Dakota andnationwide. Part two of the study consisted of distributingpatient education brochures to the clinics to help educatepatients about methods to effectively communicate withtheir physicians. Part three of the study, reported in thispaper, was a survey of local physicians to understand whatthey knew about health literacy and how well they thoughttheir patients understood physician instructions.

The purpose of the final part of this study was twofold: todetermine how low health literacy was affecting physicians’practices, and to educate physicians about health literacyand how it can affect patient-physician communication,which can greatly impact health care.

MethodsParticipants for this study were Sioux Falls area physicianmembers of the South Dakota State Medical Association.This was a convenience sample; however, an effort wasmade to include primary care physicians from different clinic locations, hospital affiliations, clinic size and withpatients of variable demographics. Physicians chosen forparticipation were practicing full scope family medicine(with the exception of some who were not practicingobstetrics) or general internal medicine. In the fall of 2009,these physicians’ clinics were provided with patient educa-tion brochures. The brochures where printed in bothEnglish and Spanish and attempted to educate patientsabout methods to effectively communicate with their physi-cians. Approximately one year later, a survey was created bythe authors as a follow-up to the distribution of thebrochures. The survey had been submitted to theUniversity of South Dakota Institutional Review Board(IRB) and determined to be exempt via the procedures ofthe IRB. Physicians were asked to evaluate the multipleskills and competencies required by their patients to accesshealth care services. The ultimate goal was to assist thephysicians in future interactions with patients to ensurethey could accurately estimate their patients’ health litera-cy levels. A total of 77 physicians were mailed the surveyalong with a cover letter explaining that participation wasvoluntary and including participants’ rights as outlinedaccording to the University of South Dakota IRB andOffice for Human Subjects Protection. Survey responseswere anonymous; therefore, the physicians and their clinicswere not correlated with their answers to the survey questions.

The survey was comprised of 10 questions of various types.There were questions requiring responses using a five-pointLikert scale, questions requiring free-text answers and multiple-choice questions allowing respondents to selectsingle or multiple items that applied. The survey was con-sidered to have face validity and the sample of physicianssufficiently representative of the target population to bevalid given the research question. As surveys were returned,the data was entered into a computer by the first author.

ResultsOf the 77 surveys distributed in a single mailing, 22 werecompleted and returned for a response rate of 28.6 percent.

The first question addressed the extent to which low healthliteracy was perceived as an obstacle to the physician’s practice.Almost one-third (32 percent) of physicians who respondedconsidered low health literacy to be a major obstacle.

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The second question asked physicians to estimate thehealth literacy level of their patients. The majority of physi-cians (77 percent) who responded considered their patientsas having moderate health literacy, but none of the respon-dents were formally testing the health literacy level of theirpatients.

The third query was a free-text question asking physiciansto estimate the percentage of their patients who had difficulty understanding instructions provided by them.Responses varied widely, ranging from 10 to 80 percent.

The fourth question asked physicians what their practiceswere currently doing to assist patients with inadequatehealth literacy. All but one practice had implemented atleast one method to assist patients. The methods chosen aredisplayed in Figure 1.

The fifth question was again a free-text question askingphysicians to whom they referred patients with health liter-acy issues in order to provide patients with further assis-tance. The responses are displayed in Figure 2.

The sixth question determined physicians’ awareness ofcommunity resources available to assist patients with low

health literacy. Of the 22 respondents, only six could iden-tify a community resource. These six physicians said theywould suggest that patients utilize the multicultural center,Sioux Falls Literacy Council, a local library, English classes,nurse educators and/or Internet resources.

The seventh question asked physicians if they thought theirstaff would benefit from training on how to effectively com-municate with patients who have low health literacy.Seventy-seven percent of respondents said that they believesuch training would be beneficial.

The eighth question asked physicians how they identifypatients who have difficulty reading and if they use anyreadability or health literacy measurement tools. Themajority of those responding (56 percent) indicated famil-iarity with the tools, but none used them. Many physiciansalso stated that they can identify those who have difficultyreading by observing the patient during an office visit.

The ninth question inquired about specific methods physi-cians used to communicate with patients. Several optionswere provided, as well as an option to fill in a method notlisted. Respondents could select all that applied. Of the 51responses to the question (due to respondents choosing

Figure 1. What is your practice currently doing to assist patients with Inadequate health literacy?

Figure 2. Where do you go for assistance if you need furtherinformation for patients who display health literacy issues?

Figures do not equal 100 percent due to rounding.

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multiple answers), 31 percent stated that they drew picturesand/or provided clearly written instructions. Another 23percent of physicians stated that they have the patientreturn with a family member or friend who can assist thepatient in interacting with his or her physician. One out offive said that they have used the “Teach Back” method withtheir patients. None of the physicians had taught theirpatients to use the “Ask Me 3” method. Only 15 percent ofphysicians said that they provided educational materialswritten at an eighth-grade reading level or lower, and 5 percent stated that they did not have any methods for communicating with these patients.

The 10th and final question on the survey asked physicianshow they would like to assist patients with low health liter-acy if resources and time were not limitations. Most of therespondents left this question blank, but some suggestedthat another team member could repeat the physicians’instructions at a slower pace or the physicians could havelonger appointments in order to spend more time with thepatients.

DiscussionIt was not until the mid-1980s that health researchers pro-posed low health literacy as a major contributing factor toproblems in the health care system.4 Now that health careprofessionals have begun to understand the meaning ofhealth literacy, the diagnosis of low health literacy is usedto explain or at least contribute to many more health concerns and disparities than in the past. Just as in HealthyPeople 2010, there are again objectives for health commu-nication and health information technology that focus onimproving the health literacy of Americans in the HealthyPeople 2020 initiative. The first objective is to “increase theproportion of persons who report their health care provideralways gave them easy-to-understand instructions aboutwhat to do to take care of their illness or health condition.”5

The second objective aims to “increase the proportion ofpersons who report that their health care providers havesatisfactory communication skills.” In a 2007 survey, only60 percent of people reported that instructions wereexplained such that they could understand them. The targetfor 2020 is to improve this by 10 percent of people surveyed.

If the full spectrum definition of health literacy is under-stood by physicians and carefully considered in the contextof their own practices, it is likely they would come to therealization that health literacy is a greater obstacle to providing health care than they had previously considered.On several of the surveys in the present study, there seemed

to be a disconnect between the first question (extent towhich low health literacy is a barrier to practice) and thethird question (estimated percent of patients with lowhealth literacy), although correlative analyses were notcompleted. If a physician estimates that low health literacyhas little effect on his or her practice in question one, thenone would expect that the same physician would estimatethat a very small percentage of patients have difficultyunderstanding instructions (question three), and vice versa.This was not the case for many respondents. For example,one physician in response to question one indicated thathealth literacy was a major obstacle (five on a scale of oneto five). In question three, however, the same respondentindicated that only 20 percent of his or her patients had difficulty understanding instructions. There was lack ofcongruity, as demonstrated in this example, in several of thesurveys. If misunderstanding is an issue for patients, thenlow health literacy is likely having a negative impact onpatient well-being.

Although the majority of physicians stated that their practices had one or more methods in place to assistpatients with low health literacy, the question remains as tohow effective these methods are at improving patientunderstanding. If both verbal and written instructions areprovided, but the patient mishears the verbal instructionsand written instructions are illegible, then these methodswill be unsuccessful. If education materials are at an accept-able reading level, but not provided to the patient or thepatient doesn’t read them, this method will be unsuccessful.If communication methods are not used properly, they toowill be unsuccessful at improving health literacy of patients.

Several methods for improving communication with lowhealth literacy patients have been developed, but they areunderutilized by physicians in practice. The “Ask Me 3”method encourages patients to always ask three specificquestions at the end of a health care encounter to helpachieve effective communication.6 The questions are: 1) What is my main problem? 2) What do I need to do? and3) Why is it important for me to do this? Another way toimprove communication is for providers to use the “TeachBack” method.7 This method involves the physician askingthe patient to repeat the instructions for treatment and/orfollow-up. Asking the patient to summarize the instructionsallows the physician to determine if the instructions wereinterpreted correctly and to clarify the instructions beforecomplications occur. Simple changes in communicationlike these could have a significant impact on our care ofpatients.

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Many physicians mentioned using the American Academyof Family Physicians (AAFP) website as a source of furtherinformation when health literacy issues are identified. InSeptember 2004, a study in Family Medicine reported evaluations of the reading level of the patient educationmaterials distributed by the AAFP. The study revealed thatapproximately 75 percent of the 518 health topics forwhich educational materials are available on the Internetare written at the ninth- or 10th-grade levels, as determinedby the SMOG calculator.8 For example, one important linkfor patients, “Tips for Talking with your Doctor,” on theAAFP’s website is written at a 9.6-grade level, which is toodifficult for most readers.9,10 Although the AAFP has takensome steps to improve the readability of their website forpatient education, such as a link to increase the font sizeand another link to switch to Spanish, more importantly,the website still needs to lower the reading level in order toreach the majority of patients.

Many physicians stated that they could quickly identifythose patients who have a literacy problem by observingthem in an office visit. This is a common misconception. Astudy of physician estimation of patient literacy levelshowed that physicians frequently overestimate patients’literacy level, especially that of minority patients.11

Physicians overestimated literacy level for more than half ofAfrican-Americans and more than one-third of other ethnicities.

As explained in the introduction, health literacy and gen-eral literacy are not synonymous. An individual who ishighly educated may have adequate general literacy whilehaving low health literacy at the same time simply becausehe or she does not have the skills or understanding requiredto navigate the health care setting. If we are overestimatinggeneral literacy, it is likely we are overestimating health lit-eracy to an even greater degree. Once a patient has success-fully completed the health literacy tasks that has broughthim or her to the clinic, he or she needs to understand whatthe physician says in order to improve his or her personalhealth.

A limitation of this study was a low response rate from thephysicians who received the survey. This does affect thevalidity of the results and questions whether or not theresults can be universally applied to clinics throughoutSouth Dakota. Of the physicians who did complete the sur-vey, several left questions blank, which further affects theresults of those questions. Future research could focus on aplan to implement better communication and educational

methods for low health literacy patients. Patients through-out the country could benefit from the development of a“best practice” plan for both rural and urban clinics facedwith the obstacle of low health literacy.

ConclusionSignificant research has been done on health literacy, butthe responses of physicians to this survey may suggest thatphysicians are probably unaware of how to address the problem. The more than half of physicians not respondingto the final survey question about how to better serve theirpatients with low health literacy suggests that physiciansand medical staff are struggling with low health literacy intheir patients and how to address the problem.

In order to communicate more effectively and better serveour patients, we need to resist stereotyping patients whenestimating their health literacy. With one-third of patientsnationwide having low health literacy, it is essential tounderstand that more than likely, low health literacy is rep-resented in all of our practices, and this must be acknowl-edged and addressed if we are going to improve the carethese patients receive.

REFERENCES1. U.S. Department of Health and Human Services. (2000). Healthy People 2010.

Retrieved from www.healthypeople.gov/document/html/volume1/11healthcom.htm.

2. Institute of Medicine. (2004). Health literacy: A prescription to end confusion.Washington, DC: National Academic Press.

3. Tjelmeland (Seurer), A. (2008). Northern plains health literacy in primary care: ARush Net pilot study. (Honors program thesis, University of South Dakota).

4. Scudder, L. Words and well-being: How literacy affects patient health. Journal ofNurse Practitioners. 2006;2(1):28-35.

5. Health Communication Objectives for Healthy People 2020.6. National Patient Safety Foundation. (1997). Ask me 3. Retrieved from

www.npsf.org/for-healthcare-professionals/programs/ask-me-3/.7. NC Program on Health Literacy. (2010). Health literacy universal precautions

toolkit. Retrieved from www.nchealthliteracy.org/toolkit/tool5.pdf. 8. Wallace, L.S. & Lennon, E.S. American Academy of Family Physicians patient edu-

cation materials: Can patients read them? Family Medicine. 2004;36(8): 571-574.9. American Academy of Family Physicians. (2010). Working with your doctor guide.

Retrieved from http://familydoctor.org/familydoctor/en/healthcare-management/working-with-your-doctor/tips-for-talking-to-your-doctor.html.

10.Online Utility. (2009). Readability calculator. Retrieved from www.online-utility.org/english/readability_test_and_improve.jsp.

11. Kelly, P.A. & Haidet, P. Physician overestimation of patient literacy: A potentialsource of health care disparities. Patient Education and Counseling.2007;66(1):119-122.

About the Authors:Andrea C. Seurer, MD, first-year resident physician at the Sioux Falls Family MedicineResidency, Sioux Falls, S.D.

H. Bruce Vogt, MD, Department of Family Medicine, Sanford School of Medicine ofthe University of South Dakota