Key Words: health literacy, literacy, health information literacy, readability
Health literacy has been receiving increased attention as a critical component for managing personal health. Recognition of the pervasiveness of functional illiteracy, along with studies highlighting how illiteracy negatively impacts health, make health literacy a central health issue for our times. Health providers and health care systems are called upon to increase their awareness of the literacy competencies of their patients and to take action to provide more meaningful interaction and information to overcome patient limitations. This column will highlight the issues surrounding health literacy and recent initiatives to address the problem.
What is health literacy?
Selden, Zorn, Ratzan, and Parker (2000) provide a good overview of health literacy in their narrative and extensive bibliography on this topic. They identify "health literacy" as first appearing in the literature in 1974. The American Medical Association (AMA) in the late 1990s undertook a review of the literature relating to the effects of health literacy. The AMA Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs reviewed 216 published articles and conferred with researchers in the area to reach consensus on a linkage between health literacy and patient health.
The Committee’s report in 1999 defined health literacy as "a constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment. Patients with adequate health literacy can read, understand, and act on health care information." The second sentence of that definition is the one commonly used today. The AMA report went on to acknowledge the disparity between the skills needed to be health literate and the literacy skills of many Americans and the need for improved communication between patients and health care providers.
The Overall Picture of Illiteracy in America
Health literacy is highly dependent on being functionally literate with written information. The National Assessment of Adult Literacy (NAAL) in 1992 and 2003 termed literacy as "using printed and written information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential" (National Assessment of Adult Literacy, 2003). In the 1992 study, functional literacy was measured across three skill areas: prose (both expository and narrative), document (short forms or graphically displayed information), and quantitative (graphs/charts or numerical display). Tasks in each skill area were rated in one of five levels—from simple (Level 1) to complex (Level 5).
The specific results by grade level follow with examples of the skills tested.
- Fill in the blanks on a job application form.
- Complete a deposit slip that lists two checks.
- Level 1: Functionally illiterate—21 to 23%
Level 2: Marginally illiterate—25 to 28%
- Given a wage and tax statement that comes with a paycheck, identify the gross pay for this year to date.
- Locate an intersection on a street map.
Level 3: 31 to 32%
- Answer simple questions relating to a newspaper article.
- Interpret a simple bar graph to answer a question.
Level 4: 15 to 17%
- Read a bus schedule to determine the next available bus for a given location.
- Compute a 10% tip for a dinner restaurant bill.
Level 5: 3 to 4 %
- Interpret a lengthy magazine article.
- Compute the total interest to be paid on a home equity loan.
Although illiteracy is found in all socioeconomic groups, the 1992 study found that adults consistently scoring in Level 1 were likely to be older, less educated, in lower paying jobs, poor, and a member of an ethnic or racial minority group (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993). NAAL does not relate its functional competency levels to reading levels. However, Doak, Doak, and Root (1996) give as a rule of thumb that those in Level 1 read below a 5th grade level. Given this measure, 20% of all adults read below a 5th grade level, as do 40% of inner-city minorities and those 65 years and older. Three-fourths of those with chronic physical and/or mental health conditions scored in the lowest two levels.
The average American (represented between Levels 2 and 3) reads at the 8th to 9th grade level. The NAAL was repeated in 2003, and results should be available in 2005.
The Problem of Health Illiteracy
Low functional literacy has serious consequences for individual health and places added demands on the health care system. People in this group are less likely to understand written or verbal information from their health care providers, to follow medication directions or appointment schedules, or to navigate the health system successfully to obtain needed care. A number of studies of patients lacking functional health literacy have found that those individuals lack essential information about their specific conditions (Williams, Baker, Honig, & Lee, 1998; Williams, Baker, Parker, & Nurss, 1998), are at risk for increased hospitalization (Baker, Parker, Williams, & Clark, 1998), and feel shame further hampering their access to care (Baker et al., 1996). Low functional health literacy among the elderly is of particular concern. This has been identified an issue even for those elderly that are more affluent and educated than the national norm (Benson & Forman, 2002).
The Institute of Medicine (2003) published Priority Areas for National Action: Transforming Health Care Quality. The book identified twenty priority areas for improving health care quality over the next five years and that might "serve as the starting point for restructuring our health care delivery system." Two of the priority areas—care coordination and self-management/health literacy--were identified as crosscutting. That is, improvements in these areas could benefit patients with many different health problems. Improved health literacy was put forward as a condition necessary to enable active self-management by patients for most conditions. An example given was a recent study by Schillinger et al. (2003) that found diabetics with poor health literacy could not read or understand labels on pill bottles and had worse blood sugar control and higher rates of preventable vision impairment. The Institute of Medicine calls for strategies at both the micro (individual) and macro (population) levels to improve health literacy.
The National Academy on an Aging Society (n.d.) estimated that low health literacy skills are responsible for increasing annual health care expenditures by $73 billion. Those individuals with low health literacy have higher medical costs due to more medication and treatment errors, more hospitalizations, longer hospital stays, more doctor visits, and lack of necessary skills to obtain needed services.
Strategies for Health Professionals
Identifying patients who may have limited health literacy can be difficult. Years of schooling may not be a reliable indicator. Doak et al. (1996) report that typically adults read three to five grade levels below the highest grade of schooling completed. Also, patients with low levels of literacy may not recognize the problem or, if they do, may be too ashamed to reveal it to others. Parikh (1996) found in a study of patients with low functional literacy, that 40% felt shame; 67.4% had never disclosed their situation to their spouses; 53.4% never told their children; and 19% had never told anyone.
Identifying Literacy Problems
Often patients with low literacy develop ways to hide their inadequacy. Their strategies may include phrases such as "I forgot my reading glasses" or "I’ll read this when I get home." Davis, Meldrum, Tippy, Weiss, and Williams (1996) offer suggestions for health care providers to identify a possible literacy problem:
- Watch for a chronic pattern of noncompliance.
- Take note if forms are incompletely filled out, possibly only with name provided.
- Observe if a surrogate reader accompanies patient.
- Be alert for possible vision and/or hearing problems.
Available Screening Tests
Screening tests have been developed to aid health providers in identifying patients with low functional health literacy. These include:
- REALM (Rapid Estimate of Adult Literacy in Medicine): word recognition test that uses medical terms of various levels of difficulty; estimated 2 minutes to administer.
- S-TOFHLA (short form Test of Functional Health Literacy in Adults): measures reading and comprehension of health-related materials; estimated 12 minutes to administer.
- WRAT-R-III (Wide Range Achievement Test-Revised): another word recognition test, but not specific to health care; estimated 2-3 minutes to administer.
Taking Care with Oral Communication
Patients will rely on their listening skills to compensate for poor reading skills. Health care providers should speak clearly, slowly, and with appropriate vocabulary, avoiding medical jargon when possible. An important follow-up step is to verify the patient’s understanding by having them repeat what they are to do and why. A very useful source with tips for establishing effective communication with patients is the book by Osborne (2001), Overcoming Communication Barriers in Patient Education.
Creating More Readable Health Information
Most written health materials are written at the 10th grade level or above. Informed consent information is typically at the 15th grade reading level or above. Thus, most of this material is incomprehensible to a majority of the population. These readability concerns extend to the World Wide Web. A study of authoritative pediatric Web sites (D’Alessandro, Kingsley, & Johnson-West, 2001) found their average reading level was also at a 10th grade or higher level, prompting a call for improving the readability of materials and stating a suggested reading level.
The National Work Group on Literacy and Health (1998) recommends health materials be written at a 5th grade readability level with recognition that this is still too difficult for about 25% of the population. Actually, individuals at all reading levels have a preference for materials that are easy to read and comprehend. Numerous guides and resources are available to help in the creation of more readable health information. Several of these are:
- Doak, C. C., Doak, L. G., & Root, J. (1996). Teaching patients with low literacy skills (2nd ed.). Philadelphia: Lippincott. Included in this book is the Suitability Assessment of Materials (SAM) instrument. This tool can be used when developing consumer health materials to insure they are suitable for the intended audience. It guides development and provides a means to assess in six areas: content, literacy demand, graphics, layout and typography, learning stimulation and motivation and cultural appropriateness.
- U. S. National Cancer Institute. (2003). Clear and simple: Developing effective print materials for low-literate readers. Available at: www.nci.nih.gov/cancerinformation/clearandsimple
- U. S. National Institute of Aging and the U. S. National Library of Medicine. Making your Web site senior friendly: A checklist for recommended guidelines on creating web sites for older adults. Available at: www.nlm.nih.gov/pubs/checklist.pdf
Testing for Readability
A number of tools exist that make it possible for you to evaluate with relative ease your consumer health information materials for readability. These typically use a formula that considers the average length of sentences and the number of multi-syllabic words used and then calculates a reading grade level. Although these tools suggest a grade level, they do not examine the clarity of the writing, correct usage, or the appropriateness of the vocabulary. The readability tests used most often are the Fry Readability Graph, Flesch-Kincaid Formula, and McLaughlin 'SMOG' Formula. Descriptions of these can be found at www.healthsystem.virginia.edu/internet/health-education/read.cfm.
Developing Non-Print Resources
Non-print media can be an effective way to convey a health message to those with low functional literacy. These may take the form of pictures, audiotaped instructions, videotapes, or interactive computer programs. The Internet, with its capacity to incorporate multimedia, offers new possibilities as well. MEDLINEplus, for example, now offers 165 interactive health tutorials (www.nlm.nih.gov/medlineplus/tutorial.html). These enable individuals to view pictures as they listen to the accompanying narrative. Easy-to-read text is also provided. The viewer manages the pace of the tutorial and is able to repeat the narrative on any given page.
Similarly, the new NIH Senior Health Website (http://nihseniorhealth.gov/) has been designed specifically to address the needs of older citizens. Authoritative, up-to-date information is provided in the form of general background information, open-captioned videos, quizzes, and frequently asked questions. The site was tested for visual clarity, understandability, and navigability with adults 60 to 88 years of age. Visitors to the site will find large print, short, easy-to-read entries, simple navigation, and the capability to enlarge text or turn on high contrast.
Recent Initiatives and Available Resources
The Partnership for Clear Health Communication (www.npsf.org/askme3/PCHC/about.php) is a significant recent effort by a number of public health organizations, with sponsorship from Pfizer, to highlight the effect of low health literacy on health outcomes. The participating organizations include the American Medical Association Foundation, American Nurses Association, American Pharmacists Association, American Public Health Association, National Medical Association, and the National Council on the Aging). This coalition developed a campaign to reach both health providers and patients. Launched in May 2003, the "Ask Me 3" campaign centers on three questions that patients should ask and providers should encourage:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
The Partnership for Clear Health Communication provides a variety of tools for providers and patients, including:
- Printable brochures about the Ask Me 3 program for providers, patients, and organizations (in both English and Spanish) at www.npsf.org/askme3/pdfs.php.
- A presentation tool kit that includes a presentation targeted at health professionals (www.askme3.org/PFCHC/professional_presentation.ppt) and another for patients (www.askme3.org/PFCHC/patient_presentation.ppt).
- Literacy referral guidelines.
- "Words to Watch" fact sheet.
- NMA cultural competency primer.
The American Medical Association Foundation provides a powerful twenty-minute, online video of personal stories from patients who struggle with low health literacy, their embarrassment, and their strategies to try to cope. Entitled "Low health literacy: You can’t tell by looking," it is available at www.ama-assn.org/ama/pub/category/8035.html.
The Center for Health Care Strategies offers a set of fact sheets on different aspects of health literacy at www.chcs.org/resource/hl.html. These were funded by The Commonwealth Fund and Pfizer, Inc. and include:
- What is Health Literacy?
- Who Has Health Literacy Problems?
- Impact of Low Health Literacy Skills on Annual Health Care Expenditures
- Health Literacy and Understanding Medical Information
- Strategies to Assist Low-Literate Health Care Consumers
- Preparing Patient Education Materials
- Tools to Evaluate Patient Education Materials
- Health Communication and Cultural Diversity
- Resources for Health Literacy Information and Publications
Institute of Medicine (IOM) will publish a study in 2004 that reviews the current state of understanding regarding health literacy and recommends actions to create a more health literate society. IOM has created a Web site to provide updates and links relating to health literacy (www.iom.edu/project.asp?id=3827 ).
Pfizer Clear Health Communication Initiative at www.pfizerhealthliteracy.com/improving.html offers a variety of tools. This includes a Patient Education Handbook that can be downloaded in Adobe PDF format. Chapters include information on: the health literacy problem, understanding reading skills, principles for clear health communication, using readability formulas, words to watch, and a planning guide.
Health Information Literacy
Information literacy competencies complement the literacy skills of reading and comprehending written information. Information literacy enables health consumers to be able to discriminate between health messages. The Medical Library Association (2003) developed a working definition of health information literacy: "The ability to recognize a health information need; identify likely information sources and use them to retrieve relevant information; assess the quality of the information and its applicability to a specific situation; and analyze, understand, and use the information to make good health decisions."
An example of a tool to aid older adults in accessing, evaluating, and acting on high quality information was launched in October 2003 by the American Federation for Aging Research (AFAR) and the Merck Institute of Aging & Health (MIAH). Health Compass—Navigating Research Information on Health and Aging (www.healthcompass.org) is a Web-based, interactive, self-study program designed to guide older adults and their caregivers to quality, comprehensible information.
Health information professionals face the challenge of enabling all health consumers—including the functionally illiterate—to be able to find quality information to serve their health needs.
Current efforts offer promise that improving the health literacy of Americans is becoming a more widely embraced public health objective. Clearly participants in all sectors of the health arena have a role to play. This is the time for us to take stock as individual health providers and as representatives of health care systems as to how we can improve health information so that it is meaningful to a far greater percentage of the population.
Barbara F. Schloman, PhD, AHIP
Assistant Dean, Library Information Services
Libraries & Media Services
Kent State University
Kent, OH 44242
Email Address: firstname.lastname@example.org
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Baker, D. W., Parker, R. M., Williams, M. V., Pitkin, K., Parikh, N. S., Coates, W., & Imara, M. (1996). The health care experience of patients with low literacy. Archives of Family Medicine, 5, 329-224.
Benson, J. G., & Forman, W. B. (2002). Comprehension of written health care information in an affluent geriatric retirement community: Use of the Test of Functional Health Literacy. Gerontology, 48, 93-97.
D'Alessandro, D. M., Kingsley, P., & Johnson-West, J. (2001). The readability of pediatric patient education materials on the World Wide Web. Archives of Pediatrics and Adolescent Medicine, 155, 807-812.
Institute of Medicine. (2003). Priority areas for national action: Transforming health care quality. Washington, DC: National Academies Press. Retrieved November 13, 2003 from http://books.nap.edu/books/0309085438/html/index.html
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Schillinger, D., Grumbach, K., Piette, J., Wang, F., Osmond, D., Daher, C., Palacios, J., Sullivan, G. D., & Bindman, A. B. (2002). Association of health literacy with diabetes outcomes. JAMA, 288, 475-482.
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Williams, M. V., Baker, D. W., Honig, E. G., & Lee, M. L. (1998). Inadequate literacy is a barrier to asthma knowledge and self-care. Chest, 114, 1008-1015. Center for Health Care Strategies, Inc. (1998). Strategies to improve patient education materials. www.ches.org/resource/hl.html.
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 International Medicine, 158, 166-172.