Today’s patient often has to overcome a number of hurdles — poor access to primary and specialist health care, high costs and bureaucratic gatekeepers — just to make it into the physician’s office. Once there, another obstacle can loom large: Will patient and health care provider have a meaningful dialogue about the patient’s health, or will it be a consultation of misunderstanding and mistrust? Recent research suggests that improved health literacy and patient-physician communications are essential for quality health care.

• Healthy People 2010 defines health literacy 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.” [1]
• An average general practitioner conducts between 120,000 and 160,000 patient interviews during a 40-year professional career. [2]
• The Institute for Healthcare Advancement estimates that the average annual health care costs of people with very low literacy may be four times greater than the general population’s. [5]


• Low-literacy diabetes patients are nearly twice as likely as high-literacy patients to have poorly controlled blood sugar and serious long-term diabetes complications. [6]
• Low health literacy is particularly common among older adults and low-income patients. More than 66 percent of U.S. adults age 60 and older have inadequate or marginal literacy skills, and about 45 percent of all functionally illiterate adults live in poverty. [7]
• A study of 2,659 outpatients at two hospitals found that 42 percent did not understand instructions to “take medication on an empty stomach,” and 49 percent could not determine whether they were eligible for free care from reading a hospital financial aid form. The same study also found a 52 percent increase in the risk of hospitalization among patients with inadequate literacy compared with patients with adequate literacy. [8]
• Racial and ethnic differences can contribute to communication breakdowns. As many as 20 percent of Spanish-speaking Latinos say they do not seek medical advice due to language barriers. [3] A 2001 survey of 6,722 adults found that minority populations are more likely to have difficulties communicating with their healthcare providers compared with whites. [4]
• Lack of diversity among health care providers can be a barrier to culturally competent communication. Minorities make up 28 percent of the U.S. population but only 3 percent of medical school faculty, 16 percent of public health school faculty and 17 percent of all city and county health officers. [10]
• Female primary care physicians tend to engage in longer visits and have more “patient-centered” consultations than their male colleagues do. [9]

Law of Averages: Casting a Wide Net in Health Literacy Efforts with Rima Rudd, Sc.D.

Rima Rudd, Sc.D., is a lecturer on health education in the Department of Health and Social Behavior at the Harvard School of Public Health. She is also a researcher and principal investigator with the National Center for the Study of Adult Learning and Literacy. Her work centers on the design and evaluation of public health programs for planned social change, including health and literacy links and collaborative strategies for learning.

Q. What kind of person is likely to have problems with health literacy?

A. To answer this, we have to become familiar with the literacy skills of the average U.S. adult, because if people can become familiar with what “average” means, there won’t be so much emphasis on who or what kinds of people have problems with literacy. It’s the average U.S. adult who has limited functional literacy skills.

Q. What are the literacy skills of the average U.S. adult?

A. Forty-nine percent of adults can’t interpret instructions or describe contrasting views in a newspaper editorial. Fifty-one percent of adults find it difficult to consistently and accurately read tables and graphs, use a map, use a bus schedule, fill out a job application or understand their payroll forms. That’s what average is.

Literacy also has to be defined by how people use materials in their own context. I’m a highly literate person, but if you gave me a textbook in neuroscience or car mechanics, you would find that I have low functional literacy with these texts.

Q. Does health literacy require a special set of skills different from general literacy skills?

A. I think so. It seems that when I’ve gone through materials used in health settings, aside from materials written especially for patients, most of these health materials are not prose. Materials on nutrition, or prescriptions, are sometimes not written in full sentences. Or the information appears in graphs and charts. These are harder to grapple with than prose, because with prose, if you don’t understand any one particular word, you might be able to figure out its meaning from context. Health materials are sometimes presented in ways that take away some of that context.

Q. Should physicians find some way to test the literacy of their patients before they proceed with a consultation, to gauge their level of understanding?

A. I don’t think I could say this strongly enough: No!

Q. Why not?

A. There are two reasons. First, people with very good literacy skills still appreciate plain language. In a study of physician conversations with white- and blue-collar patients in the HMO setting, where the researchers compared how the physicians spoke to each group, they found that the physicians tended to use more plain and simple language with their white-collar patients. Language can be used as a cultural divide. When people are not like you, you tend to be more formal in your presentation.

On the other side, consider how humiliating this kind of test might be for someone with low literacy who comes in to see their doctor, especially if you’re already not feeling well. Most people with low literacy are very embarrassed about it. They don’t admit it even to their husbands and wives. Also, they don’t always know that they have limited literacy skills. They arrange their lives so that they read what they can.

Q. Why is it often difficult for patients to understand their physicians?

A. When pharmacists are trained, for example, they have to take a course in medical language. They have to learn how to talk to doctors, since they are literally speaking a foreign language. As is true of any profession, there is a vocabulary and a specialized jargon that goes along with medicine.

Also, the small percentage of people who have an M.D. or a Ph.D. or a master’s degree have learned a different language during their education. We’ve grown accustomed through education to use more formalized and esoteric vocabulary — “utilize” instead of “use,” for example, when “use” is still a perfectly good word.

This also happens with sentence structure. Think of a sentence with a clause set aside by commas. For a listener, this can be like walking down a road, taking a detour on a side road, and then coming back to the main road. After all that, you may have lost your understanding of where the main road was taking you. In language, this can be unnecessary and very demanding on people.

Q.How successful have multilevel interventions been in helping people change health behaviors?

A. There is growing evidence that multilevel interventions are successful in tackling hard-to-change behaviors. One example of this success has been smoking-cessation programs in some health care settings. These programs, shown to be more cost-effective than other types of smoking-cessation interventions and most other medical interventions, offer a kind of "stepped care" that targets specific services to people with different needs.

Q. How can a health care provider distinguish between poor literacy, or poor understanding, and noncompliance from a patient?

A. After offering instruction for care, health care providers should ask with regularity, “Was I clear? Is there some part I should go over again?” In this case, the burden of responsibility is on the speaker and not the listener.

Furthermore, researchers in this area as well as the American Medical Association highlight the importance of “teachback.” This happens when a practitioner says something along the lines of, “Now, to be sure we are in agreement, why don’t you show me what you would do when …”

Q. Is it getting harder to be health literate, so that even someone we might consider to be of better-than-average literacy is having trouble understanding health information?

A. Yes, because of chronic disease management. Thanks to good medical and public health practice and good medicines, people who might have died in earlier decades are now living and functioning longer. However, chronic disease management is complicated. The patient and provider must be partners. That means that there is a lot a patient with diabetes, asthma, heart disease or HIV/AIDS must do. Patients are expected to measure and monitor, to manage very complicated medicines or multiple medicines and to take precautions.

Where do they find help in this busy society? I inevitably forget an antibiotic here and there. What happens when my meds are more complicated? Someone with diabetes may carefully read food labels but, you know, sugar is often not listed, although sucrose is. Why do folks expect that the average person knows all the scientific terms for sugar?

Q. Do health care providers receive adequate training on literacy and physician-patient communications?

A. No. We have so much to read and to process, it is hard to keep up in our own field. Professionals rarely read material from other fields like educational theory and literacy. The major studies about literacy in the United States that were published in 1993 are still new to many practitioners in public health and medicine. I did a full literature review to see the growth in the number of studies over time, and only recently have literacy and health literacy reached the national agenda. There is not yet enough training in this area, although we offered the first graduate course in health literacy here at Harvard nine years ago.

Q. Is there a particular approach, such as community education or literacy training in the health care setting, on which we should be focusing our energies when it comes to improving health literacy?

A. Our action plan for health literacy under the Healthy People 2010 initiative (http://www.hsph.harvard.edu/healthliteracy/policy/hp2010_draft.pdf) contains information on several areas where we can begin address health literacy, but here are our general thoughts: For immediate action, we need to write and speak about health in plain language; for longer-term action, we need to support literacy education efforts and, most importantly, adult education. Also for long-term action, we need to support efforts to improve professional literacy training for health care professionals.

Q. Do you think there are other aspects of the health system that play a key role in undermining health literacy improvement efforts?

A. Continuity of care, which is often lacking in the current health system, is an essential element of good health communication. Recent research has shown that continuity of care is one of the most important predictors of good care, good communication and healthful outcomes.

I’d also like to point out that the very application process to enroll in health care is akin to a literacy test. My team and I just finished an assessment of the application process for Medicaid. The print (sometimes in eight-point type), the format (not enough room to write your answers) and the jargon and the vocabulary in the forms makes it almost impossible for the average person to adequately figure out or fill it out alone.

Doctor, Explain Thyself: Putting the Burden of Communication on the Provider with Dean Schillinger, M.D.

Dean Schillinger, M.D. is an assistant clinical professor of medicine at University of California, San Francisco, and San Francisco General Hospital. His interests include improving health care for diverse and vulnerable populations cared for in safety-net institutions. In particular, his work has focused on the impact of primary care for vulnerable patients with chronic conditions, the provider-patient relationship, domestic violence, language barriers and health literacy.

Q/ Your diabetes studies are among the first to link poor literacy with poor health outcomes. Why do you think there isn’t more research on this link?

A/ Well, I think the field is relatively new. That’s the main reason Robert Wood Johnson Foundation funded projects in the early 1990s to measure literacy in health care settings. Until we had those measures, there was no way of performing good science — we couldn’t study anything.

The second reason is that it’s been only recently in this country, and in Canada as well, that we now have a more subtle understanding of literacy, that it’s not a matter of literacy versus illiteracy. We are finding out that varying levels of literacy are important to many aspects of participating in society, including health care.

And the third reason is that measuring literacy is labor-intensive research. For example, in our recent diabetes study, we had to administer literacy tests to 450 patients in person.

Q/ Your recent diabetes study in the Archives of Internal Medicine showed that only 20 percent of physicians used an interactive technique of getting patients to recall and respond to new concepts.15 Were you surprised at how few physicians used this technique?

A/ In truth, I am not shocked at any study of physician-patient communication that shows that we do worse than we hope to be doing. But I think that one of the reasons this happens is that we doctors feel we have so much to accomplish in such a short time.

Q/ What are some of the other reasons so few physicians use these techniques?

A/ One of the main reasons why we may do a poor job is that we are not formally trained in educational techniques. It’s not part of medical school. No major medical schools that I am aware of teach their students to be better teachers for their patients.

Also, we physicians tend to overestimate how much patients are understanding. We think we’re speaking clearly and using the same language. But I think that patients, for a lot of reasons, including the power dynamic that exists in the doctor’s office, tend not to disclose when the physician is not speaking clearly. This may be particularly true for individuals with lower levels of literacy. I am struck to the extent that these patients are not challenging their doctors.

Q/ What sort of specific techniques for improving physician-patient communication are you studying?

A/ The techniques we are looking at now are about different ways of creating an environment that is nonthreatening, thinking of ways that we can make the milieu more safe and comfortable. We want it to become less unidirectional and more of a partnership.

Q/ Can you give an example?

A/ For diabetes, we’re looking at whether or not group visits can lead to improvement in care compared to one-on-one visits. These groups would have a health care professional as a facilitator, but would be essentially run by patients. The facilitator would be there to bring up certain key issues, but the communication would be driven by patients.

One can imagine that instead of a physician saying, “I want you to get vigorous exercise,” in a group session, someone might say “My nephew got me a stationary bike and I watch ‘Wheel of Fortune’ while I ride.” With people coming in with all kinds of ways to manage their diabetes, patients might be more motivated to change their behavior and change how they cope.

Q/ Are there specific communication techniques aimed at particular ethnic or cultural groups, or disease groups?

A/ There is of course a recent IOM report, Unequal Treatment Confronting Racial and Ethnic Disparities in Health Care, that addresses some of that. But for all people, there are two fundamental dimensions we need to attend to. The first is speak clearly and be an attentive listener. The second is express that you care. Empathy goes a long way in building trust and setting up a relationship so that communication is successful. With regard to minority populations specifically, increasing the workforce to include individuals from the same community and increasing language access has got to be more of a priority than it currently is.

Q/ What role can technology and multimedia play in patient-physician communications?

A/ With regard to chronic diseases, the need for ongoing communication is high, and this is one place where technology can help. We have done some work with automated telephone advice, and we quickly realized that we needed to change our style to become more narrative, to use something like, “If you want to hear how Mrs. Jimenez dealt with her depression, press 1.”

But people get caught up in technology and forget to make it accessible. We need to focus on using basic words and making the message clear. There was a study done at a VA hospital that employed CD-ROM-based information for prostate cancer treatments. It’s very hard in a brief clinical encounter to cover all the complex information needed to make a decision about that. So patients watched the CD-ROM a half-hour before meeting with their doctor, and lo and behold, the CD-ROM was associated with greater satisfaction among the overall population of patients. But when they surveyed those patients, they found that those with a lower level of literacy still had no greater knowledge about their condition.

Q/ What do patients say is the biggest barrier to understanding their physicians?

A/ I hear two things again and again: First, my doctor is asking me to do all these things, but she or he doesn’t understand the challenges in my day. And they’re not always talking about challenges like child care or a dying grandmother, although those are certainly part of it. They are really asking, where’s the opportunity for me to respond and give a “reality check” to these things that you’re asking me to do? They’re asking doctors to help them prioritize, to help them solve their problems in a true partnership.

The second thing reveals that we’re not being clear with our patients. Patients say “my doctor needs to break it down for me — what am I supposed to do? He says I’m supposed to eat a more nutritious diet, but how do I do that?”

Q/ When physicians and patients don’t communicate well, what is the risk? Are patients just not receiving the best possible care or are they actually putting themselves in immediate danger?

A/ In rare instances, communication breakdown in the walk-in setting can absolutely lead to serious errors. There are breakdowns that can lead to fatal or life-threatening problems, such as when a patient doesn’t understand about a dosage, or doubles up on medications that have different brand or generic names.

Much more common, however, are breakdowns of communication that lead to poor quality of care over the long haul. Patients who experience these breakdowns may be raising their risk of having disease complications compared to other patients.

Q/ Is it the patient or the physician who is most in need of better communication techniques?

A/ It takes two to tango — a good dance requires a good leader and a good follower to keep the dance going. The problem we get into in medicine, especially with a power dynamic of lower-literacy people versus those with advanced literacy, is that it’s very unidirectional. Doctors need to be more explicit in eliciting a patient’s understanding, and actually activating patients to respond. Patients need to come into visits more prepared to do that.

Q/ What’s your sense of how physicians and patients view these communication breakdowns?

A/ There has definitely been shared frustration over the last few decades, much of it projected onto managed care systems. While it may be appropriate, because these systems often do not support continuity and trust, I think we need to look within as well. Looking into the future, I hope that the frustration that patients and providers feel could be put to use productively.

If there could be a day when a patient can come into a room and say, “You know, doc, I appreciate all you’ve done for me, but I was kind of offended when you said this and that,” and a doctor can say, “Well, you’ve done really well taking care of your condition. But I think I said that because I felt that you should take more responsibility for these other parts of your disease,” then we would have a real relationship. We would have two people working on the same problem, dissecting why things are working the way they are, and trying to fix them. That would be wonderful.

Q/ How has your work on physician-patient communication affected your own practice?

A/ It’s remarkable to me that there are so many problems that go by that are completely invisible.

I recently had a patient whom I have been treating for 10 years for diabetes who finally admitted to me that he hadn’t been taking the medication that I prescribed for him all this time because he couldn’t swallow pills.

The mistake we make is that we assume patients are telling us everything, and that we are being clear to our patients, which is clearly not the case. We assume that there’s no veil to pull away, when clearly there are multiple layers of veils.

For nearly 47 million Americans who do not speak English at home, health care communication often requires a third party, a translator who can convey a doctor’s questions and instructions and relate a patient’s answers and concerns. Although some health care providers have professional translators on hand to assist them, most translators are “amateurs,” family members with varying degrees of English proficiency. Family translators work free of charge and may help set a patient at ease, but are they really the best choice for bridging the language gap between physician and patient?

In a recent Wall Street Journal article (Jan. 9, 2003) on medical translation, professional translators say that family members who translate incorrectly or incompletely can put patients at serious health risk. Several doctors interviewed for the article, however, say that family members can do a good job of translating and that there is not enough scientific evidence to suggest that professional translation leads to better health outcomes. Both groups agree that professional medical translation is underfunded. [12]

The debate over medical translation encompasses government standards for care as well. Responding to a Clinton administration order to tear down language barriers to federal services, the Department of Health and Human Services issued standards in 2000 that called amateur translation “life-threatening.” In April 2002, the Bush administration stepped back from this standard, saying that patients should be able to use any interpreters they choose.

Two patients in a hospital waiting room describe their pain to the attending physician: One patient says he’s experiencing a stabbing pain in the center of his chest, the other patient complains of a toothache and diffuse pain in her neck and arm. The patients describe their pain in such different ways that at first glance, the physician might not realize that both of them are having a heart attack.

Several studies have shown that women and men may experience and describe pain and other symptoms of a heart attack in different ways. In fact, the “classic” symptoms of a heart attack are symptoms that are mostly reported by men. As researchers take a closer look at patient communication, they are finding that these differences extend to other groups and other diseases.

For instance, a recent study of 1,124 stroke patients found that women were 62 percent more likely than men to use “nonstandard” terms when describing their stroke symptoms. Women were more likely to report severe hiccups, facial pain and nausea than men, which “could mean that there could be more delays in triaging and treating them,” says study author Lise Labiche, M.D., of the University of Texas Health Science Center at Houston. [13]

Another study reports that black and white asthma patients use significantly different terms to describe their asthma attacks. According to research by Susan Janson, D.N.Sc., R.N.-N.P., of the University of California, San Francisco, and colleagues, black patients were more likely to use upper-airway terms like “tight throat” or “itchy throat” to describe their asthma symptoms. White patients were more apt to describe their symptoms using lower-airway terms like “deep breath” or “hurts to breathe.” [14]

None of the patients, black or white, described their symptoms using the words “shortness of breath” or “wheezing” — traditional medical terms used frequently by clinicians.

Although the Journal of the American Medical Association published a landmark study on health literacy in 1999, its editors needed a reminder to make some of its own materials more patient-friendly. After examining JAMA’s “Patient Page,” an educational handout at the end of each issue specifically aimed at patients, several researchers concluded that the handouts would be too difficult for most Americans to read. Instead of being written at a fifth- or sixth-grade level, as recommended by the health literacy study, the average Patient Page was written at a 12th-grade level. [11]

For more information on physician-patient communication and health literacy, try:

1. U.S. Department of Health & Human Services, Office of Disease Prevention & Health Promotion. (2000) Healthy People 2010.

2. Lipkin, M, Jr. (1995) The medical interview. The medical interview: clinical care, education and research, M. Lipkin, Jr., S.M. Putnam & A. Lazare, eds. New York: Springer-Verlag, ix-xi.

3. IOM Committee on Understanding & Eliminating Racial & Ethnic Disparities in Health Care (2002). Unequal Treatment Confronting Racial and Ethnic Disparities in Health Care, B.D. Smedley, A.Y. Stith & A.R. Nelson, eds. Washington, DC, National Academies Press.

4. Collins, K. et al. (2002). Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. The Common-wealth Fund 2001 Health Care Quality Survey. The Commonwealth Fund.

5. Sarasohn-Kahn, J. (2002) Reducing health disparities through improved communication. IHealthBeat, http://ihealthbeat.org/members/basecontent.asp?oldcoll=&program=1&contentid=23616&collectionid=583.

6. Schillinger, D. et al. (2002) Associ-ation of health literacy with diabetes outcomes. Journal of the American Medical Association, 288, 475-782.

7. American Medical Association Foundation. (2000) Facts about health literacy. www.ama-assn.org/ama/pub/article/3125-3308.html.

8. Williams, M.V. et al. (1995) Inadequate functional health literacy among patients at two public hospitals. Journal of the American Medical Association, 274, 1677-1682.

9. Roter, D.L. et al. (2002) Physician gender effects in medical communication: a meta-analytic review. Journal of the American Medical Association, 288, 756-764.

10. Betancourt, J.R. et al. (2002) Cultural Competence in Health Care: Emerging Frameworks & Practical Approaches. The Commonwealth Fund.

11. Kellerman, R. et al. (1999) Health literacy and the JAMA Patient Page. Journal of the American Medical Association, 282, 525-527.

12. Newman, B. (2003) Doctors’ orders can get lost in translation for immigrants. Wall Street Journal, Jan. 9, 2003.

13. Labiche, L.A. et al. (2002) Sex and acute stroke presentation. Annals of Emergency Medicine, 40, 453-460.

14. Hardie, G.E. et al. (2000) Ethnic descriptors used by African-American and white asthma patients during induced bronchoconstriction. Chest, 11, 935-943.

15. Schillinger, D. et al. (2003) Closing the loop: physician communication with diabetic patients who have low health literacy. Archives of Internal Medicine, 163, 83-90.

The Center for the Advancement of Health is an independent nonprofit organization that promotes greater recognition of how psychological, social, behavioral, economic and environmental factors influence health and illness. The Center advocates the highest quality research and communicates it to the medical community and the public. The fundamental aim of the Center is to translate into policy and practice the growing body of evidence that can lead to the improvement and maintenance of the health of individuals and the public. The Center was founded by the John D. and Catherine T. MacArthur Foundation and the Nathan Cummings Foundation, which continue to provide core funding. Funding for this series was provided by the Robert Wood Johnson Foundation.

For Information Contact:
Kristina Campbell
Editor, Health Behavior News Service
Center for the Advancement of Health
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