Plain Language: A Strategic Response to the Health Literacy Challenge S U E S TA B L E F O R D * a n d W E N D Y M E T T G E R ABSTRACT Low health literacy is a major challenge confronting American and international health organizations. Research in the past decade has documented the prevalence of limited literacy and limited health literacy skills among adults worldwide. This creates a major policy challenge: how to create text-based health information – a common method of health communication – that is accessible to the public. Plain language is a logical, flexible response. While touted by American, Canadian, and European health policy makers, adoption and promotion of plain language standards and skills in health-focused organizations have lagged. Most text-based health information continues to be too hard for most adults to read. Barriers to more rapid diffusion of plain language are reflected in a set of myths perpetuated by critics. These myths are identified and refuted. While plain language is only one of many broad-based solutions needed to address low health literacy, the benefits to everyone demand increased use by health organizations.

Journal of Public Health Policy (2007) 28, 71–93. doi:10.1057/palgrave.jphp.3200102 Keywords: literacy, health literacy, low health literacy, health communication, plain language, reading skills

INTRODUCTION

Low health literacy is a major challenge confronting healthcare systems. Hundreds of research studies conducted over more than 30 years have documented the wide gap between reading levels of written health information and the levels of adult reading abilities (1,2). While the term health literacy encompasses more than reading skills, written information offers one clear reflection of the communication gap between health professionals and the public. This gap has serious health consequences for individuals and populations (3).

* Address for Correspondence: AHEC Health Literacy Center, University of New England, 11 Hills Beach Rd., Biddeford, ME 04005, USA. E-mail: [email protected]

Journal of Public Health Policy 2007, 28, 71–93 r 2007 Palgrave Macmillan Ltd 0197-5897/07 $30.00 www.palgrave-journals.com/jphp

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The concept of plain language also has deep roots. Reading researchers long ago recognized text characteristics that create reading ease – characteristics now internationally labeled as plain language (4). While health policy leaders are promoting adoption of plain language for communication with the public, adoption is much slower than warranted by the scope and urgency of the issue. This paper examines the evolution of low health literacy as a compelling health policy issue grounded in national and international literacy surveys; links this evolution with policies recommending plain language; and examines why plain language has not been more quickly and widely adopted to create accessible written health communication. We counter the myths about plain language with facts, and urge increased attention, resources, and plain language skill development within health organizations and health profession education programs. H E A L T H L I T E R A C Y: A N A M E R I C A N H E A L T H P O L I C Y CHALLENGE

In April 2004, the Institute of Medicine (IOM) and the Agency for Healthcare Research and Quality (AHRQ) – two major players in United States healthcare – both issued health literacy reports, placing this topic at the forefront of the nation’s health agenda (3,5). Both reports cited results of the 1992 National Adult Literacy Survey (NALS) as cause for concern (6). In that survey, nearly half of American adults had overall proficiency scores in the lowest two, out of five ability levels. That is, they demonstrated only limited abilities to read, understand, and use information from text (prose literacy), solve mathematical problems (quantitative literacy), or use information in charts and tables (document literacy). Abilities at NALS levels 1 and 2 were widely judged as inadequate to meet the everyday demands of a technology-based, information-rich society (7). The NALS did not directly measure health literacy (defined here as the ability to apply literacy skills to health tasks), but it did include health-related tasks as part of the overall survey. Researchers reanalyzed results from these tasks (and from similar tasks on the International Adult Literacy Survey (IALS) cited below), linked the results to the original NALS database, and published a new direct measure of health literacy – the Health Activities Literacy Scale

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(HALS). Adult proficiency scores on the HALS were the same or, for some groups, below those on the broader survey (8). Release of preliminary results from the second national literacy survey, the National Assessment of Adult Literacy (NAAL) in December 2005, renewed cause for concern (9). While this second national survey was scored somewhat differently from the first and certain groups achieved improved scores, overall results were similar to those a decade earlier. Nearly half of American adults scored ‘‘below basic’’ or ‘‘basic’’ on prose and quantitative literacy tasks. Two groups growing very quickly, elders and Hispanics, demonstrated especially limited skills. Results of the NAAL subsection that directly measured health literacy are scheduled for separate release in 2006. As the IOM report points out, the complexity of health and medicine compounds deficits in literacy skills. Health literacy challenges include: (1) having the specialized vocabulary, knowledge, and skills to manage one’s own health; (2) using multiple information formats in multiple locations to accomplish multiple tasks (e.g. reading food labels in the supermarket, medicine instructions at the pharmacy, safety regulations at work, consent forms in the hospital, etc.); (3) mastering the arcane American health insurance and health delivery systems; and simultaneously, (4) overcoming high levels of stress and anxiety associated with health decision-making. Viewed this way, it is likely that few adults have fully adequate health literacy skills. If an adult does not speak English fluently or does not know or accept the assumptions of Western medicine, understanding is further compromised. Health literacy challenges everyone, albeit in varying circumstances and to varying degrees. Collectively, the national reports and surveys paint a picture of a nation at risk. Both the IOM and AHRQ reports cite research studies documenting serious consequences of the gap between literacy abilities and the high levels at which health information is delivered, especially in writing. While causality is complex and multifactorial, adults with limited literacy skills know less about their health problems, are less likely to engage in certain preventive behaviors, less likely to comply with self-management regimens for chronic health conditions, and more likely to have poor health and more frequent hospitalizations (10–15).

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H E A L T H L I T E R A C Y: A N I N T E R N A T I O N A L H E A L T H P O L I C Y CHALLENGE

International and Canadian-based health policy organizations have also issued policy statements about health literacy. The World Health Organization’s (WHO) health promotion strategy embodied in background papers for the 6th Global Conference notes that: ‘‘It is a responsibility for the State and governments at all levels to provide equal learning opportunities for all people to achieve a basic health literacy.’’ (16) The report goes on to note that: ‘‘Open and transparent communication is a crucial process in health promotion. Not so much because health promotion is about bringing useful health messages to the people, but more because social mobilization for health promotion needs effective communication strategies.’’ European awareness of health literacy is evident by its mention in a 2002 European Commission health policy report about pharmaceuticals (17). That report states: ‘‘In particular, there needs to be greater flexibility in the way information for each medicine is presented y ensuring that citizens have access to harmonized, authorized and clear information which takes account of different levels of health literacy.’’ Statistics Canada in a recent report noted: ‘‘More than half of seniors in Canada report being in poor health and the average document literacy score for this group corresponds to the lowest level on the literacy scales.’’ (18) As in America, attention to health literacy may reflect anxiety about limited adult literacy skills. Two international literacy surveys conducted in the past decade revealed high proportions of both Canadian and European adults with the same limited skills as seen in the United States. Both surveys, the IALS in the mid-1990s and the Adult Literacy and Life Skills Survey in 2003 (ALL), measured results using the same five proficiency levels as the 1992 American survey (19,20). Reports from the IALS and the ALL document varying but prevalent levels of low literacy skills across countries – millions of adults achieving only proficiency levels 1 or 2. Only Scandinavian countries did better. The ALL report includes a chapter about literacy skills and health, created by linking health-related background questions to participant literacy skills. Not surprisingly, adults reporting poor health

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overall and lower work-related health had lower literacy skills (Organization for Economic Cooperation and Development and Statistics Canada (20), Chapter 11: Skills and Health). Thus, while patients in Canada and Europe may more easily access healthcare in nationalized systems and face fewer ‘‘navigation’’ issues than America, they also struggle to read, understand, and use information essential to preventing, treating, and managing complex health conditions. P L A I N L A N G U A G E : A N E F F E C T I V E C O M M U N I C AT I O N R E S P O N S E T O T H E H E A LT H L I T E R A C Y C H A L L E N G E

As the WHO and European Commission reports point out, effective communication is critical to public understanding of health information. Similar to the Commission’s action call for ‘‘harmonized, authorized, and clear information,’’ the American IOM, AHRQ, and HALS reports stress the same point. The IOM speaks to ‘‘ycreating health information content in appropriate and clear languagey .’’ (3) The AHRQ states: ‘‘yWhat is availableysuggest that well-conceived interventions can at least improve the outcome of knowledge for participants with both higher and lower literacy levels.’’ (5) The HALS report notes: ‘‘Adults trying to apply health information would benefit from clearer written and oral communicationy .’’ (8) The term ‘plain language’ both describes and is implied in these calls to action. Plain language embodies clear communication. While some mistakenly believe that the term means just using simple words, or worse, ‘‘dumbing things down,’’ it actually refers to communications that engage and are accessible to the intended audience. The term is also used to describe the process of developing such communications, as in the phrase ‘‘using a plain language approach.’’ For text-based information, it means using evidence-based standards in structuring, writing, and designing to create reading ease. The resulting texts are variously described as easy to read, user-friendly, or reader-focused. Guidelines for creating such print and web-based texts are freely available on multiple Internet sites (21–23). Using plain language to communicate effectively is not a new idea. Clear, accessible, to-the-point writing has long been embraced by journalists and business professionals. But, as a recent report linking

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effective communication to business success notes, those in healthcare rank ‘‘yamong the least effective communicators.’’ (24) Plain language communication is part of the solution to major public health and health delivery problems. In America, these include reducing health disparities, increasing safety and quality of care, improving the prevention and treatment of chronic diseases, and increasing adherence to healthier lifestyle behaviors. As the US Surgeon General, Richard Carmona, M.D., has noted: ‘‘Low health literacy is one of the largest contributors to our nation’s epidemic of overweight and obesityyEvery morning people wake up and, while they’re sitting at the kitchen table, they read the newspaper and the cereal boxyThe labels list grams of fat. But do people know how many grams of fat they should eat in a meal? or in a day? or how many is too many?y’’(25) EFFORTS TO PROMOTE PLAIN LANGUAGE

In the United States, advocacy for plain language began in earnest with a 1998 Presidential memorandum requiring its use in all governmental communications with the public. That memorandum stated: ‘‘yBy using plain language, we send a clear message about what the Government is doing, what it requires and what services it offers. Plain language saves the Government and the private sector time, effort, and money.’’ (26) This policy has been reaffirmed by the current political administration, especially in the context of health and healthcare. The Surgeon General eloquently and repeatedly addresses health literacy and the need for plain language in public speeches to ‘‘ygive Americans information in clear terms that they can understandy(25)’’ This top-level leadership promotes and supports action in key federal health agencies. The Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and many other agencies are working to implement plain language. They sponsor conferences and train staff, develop standards for print materials and web usability, support extramural research in the field, and lead by example, publishing accessible print and web-based health materials. Other key players in the United States’ burgeoning health enterprise – professional associations, voluntary health organizations,

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universities, healthcare delivery systems, pharmaceutical groups – are also paying increased attention to health literacy and plain language. The following are brief examples.  The American Medical Association published a health literacy policy paper in 1999 and a textbook on health literacy in 2005 (27,28).  The Partnership for Clear Health Communication is a new nonprofit organization focused on spreading awareness of low health literacy and clear health communication to health professionals, healthcare organizations, and others (29).  Harvard University School of Public Health maintains a public website with extensive health literacy/plain language resources, and supports related graduate education programs (30).  Healthcare delivery systems are reviewing consent forms and patient information materials to comply with legal and accreditation requirements for understandable information (31,32).  In the commercial sector, Pfizer Inc. has led the way, sponsoring competitive health literacy grants, research, and conferences, and establishing company-wide, plain language standards for consumer information (33). Support for plain language is evident in Canada and Europe as well. The Canadian Public Health Association has provided leadership for over a decade in bringing high-level government attention to the connections between literacy and health. The Association provides plain language training and materials development services. Additionally, they have established a formalized national network of health and education organizations committed to addressing health literacy and convened international health and literacy conferences in 2002 and 2004 (34). The European Commission runs a campaign titled ‘‘Fighting the Fog’’ and has published its own set of writing guidelines with the same title. The campaign ‘‘ydraws attention to the dangers of FOG – that vague grey pall that descends on EU documents, obscuring meanings and messages, causing delays and irritation.’’ (35) Plain language movements are also prominent in Sweden, Australia, New Zealand, and other countries. Many are members of the Plain Language Association International, an organization

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dedicated to spreading understanding, research, and practice related to plain language (36). T H E R E S I S TA N C E T O P L A I N L A N G U A G E

While policy leaders advocate plain language as a strategic response to the challenge of low health literacy, few health-focused organizations or academic training programs have committed significant resources to retool workforce communication skills or prepare the next generation of healthcare professionals. Although not a ‘‘magic bullet,’’ evidence is growing that a well-executed plain language approach can improve consumer understanding of health and medical information, save time and money, and improve customer satisfaction (37–40). Yet, plain language has not become an accepted health-industry standard. The problem of implementing research and best practice across a broad enough spectrum of organizations to create observable and measurable change is variously described using the terms translation or diffusion. Resistance is often based on misunderstanding about what plain language is, how it contributes to effective communication, and ultimately to organizational success. Much of the resistance is based on myth and misunderstanding. In addressing these myths, we present the case for wider adoption of plain language as a key strategy to address the challenge of low health literacy. U N D E R S TA N D I N G P L A I N L A N G U A G E : M Y T H S A N D FA C T S

Myth: Writing in plain language insults skilled readers. It means ‘‘dumbing-down’’ medical and science-based information, minimizing or eliminating important technical details, and sacrificing accuracy. Critics of plain language suggest that this style of writing is grossly oversimplified, resulting in the loss of vital medical and technical information. They argue that plain language writers communicate in child-like language, which leads to short, choppy, and redundant sentences and, in turn, insults highly literate readers.

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Fact: Plain language writing is not about ‘‘dumbing down’’ information, writing in a condescending tone, or neglecting the need for accuracy.It is about writing for clarity and meaning. Skilled practitioners of plain language writing use Strunk and White’s classic, The Elements of Style, which makes, case for ‘‘ycleanliness, accuracy, and brevity in the use of English.’’(41) Vigorous writing is concise. A sentence should contain no unnecessary words, a paragraph no unnecessary sentences, for the same reason that a drawing should have no unnecessary lines and a machine no unnecessary parts. This requires not that the writer make all his sentences short, or that he avoid all detail and treat his subjects only in outline, but that every word tell.(41) Plain language is reader-friendly – designed to increase the individual’s understanding of the text. It serves as a portal through which consumers can access and understand medical and scientific information. Plain language writers decide on key messages to include, and delete unnecessary descriptive, bureaucratic, or jargon-filled language. They use words that are commonly understood, rather than difficult abstract terms and concepts. A friendly, conversational tone is used to engage the reader, rather than a formal, scholarly tone that distances the reader. Skilled plain language writers strike a balance between scientific information and the consumer’s needs and interests. They work closely with content specialists to ensure that the accuracy of the scientific information is retained. To illustrate good plain language writing, here is an example of a complex, hard-to-understand sentence and the rewritten, plain language version. Original: In order to be responsive to Member problems and concerns about HMO policies, programs, procedures, personnel, or benefits and services (their coverage, provision, or omission), the following grievance procedures have been established. Plain language rewrite: If you have a problem or complaint, here’s what to do. (42) Myth: Plain language is dull.

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Many in the health field share the misconception that plain language writing is ‘‘plain.’’ Their belief is that it is dull, bland, and pedestrian writing, stripped of its power and vitality, and does not engage the reader. Images of tax and insurance forms come to mind. Fact: Good plain language writing is creative, vibrant, and emotionally resonant. It captures the essence of the message in clear and compelling language. Here is an example from a National Institute of Aging’s piece on Alzheimer’s Disease. It illustrates the transformation of text from the impersonal and mundane to the personal and meaningful. Original: Is there help for caregivers? Most often, spouses or other family members provide the day-to-day care for people with AD. As the disease gets worse, people often need more and more care. This can be hard for caregivers and can affect their physical and mental health, family life, job, and finances. Plain language Rewrite: Is there help for caregivers? Yes. If you are caring for someone with Alzheimer’s disease, you may feel overwhelmed. It can take all your time and energy. There is help for you. Learn about support groups, adult day-care programs, home healthcare services and other helpful resources. You need to take care of yourself in order to take care of someone with Alzheimer’s disease. (43) Myth: Creating plain language materials is easy. It doesn’t require any special skills or training – it’s just about using common sense. This myth implies that it is a simple and quick process to create plain language materials. It suggests that anyone using a common sense approach can write clear and easily understood materials with minimal effort and a limited knowledge base. It also implies that there is no need to follow any particular set of evidence-based strategies to ensure success.

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Fact: The process of developing plain language materials requires knowledge and skills; a clear understanding of the target audience; and the use of an evidence-based approach. It includes: 1. a planning process that uses a theory-based approach to develop materials (social marketing, health behavior, adult learning theory, etc.); specifies the purpose of the materials; and identifies target audience knowledge, concerns, and skills needed to carry out recommended behaviors; 2. clear, succinct, and reader-friendly writing; 3. strong design elements and an easy-to-read layout that increase and support text readability; 4. audience testing to ensure cultural appropriateness, understandability, appeal, and usability (44–56). Creating stellar plain language materials is an acquired skill that requires knowledge and experience. It is both an art and a science, requiring the ability to simultaneously think about the cognitive, emotional, and visual appeal of the piece as well as applying research-based strategies to ensure a truly easy-to-read and understand print material. Myth: There is no research base for plain language materials development. This myth suggests that plain language is simply a ‘‘nice idea’’ and that there is no evidence base to inform the strategies and approaches used to develop plain language materials. Fact: There is a wealth of research that supports plain language materials development. Plain language materials development draws from the fields of reading, adult learning theory, adult education, health education and behavior, cognitive psychology, social marketing, cross-cultural communications and cultural competence, document design, and health communication. Plain language strategies grow out of research that explains how people take in, process, remember, and act on information (44–64).

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Myth: Writing to lower reading levels is the answer. This myth suggests that if materials are written at the 4th, 5th or 6th grade reading levels, audience appeal and comprehension will automatically follow. Fact: Writing to achieve a certain grade level is no guarantee of clarity, appeal, or comprehension. It is true that writing at accessible reading levels is an essential part of the plain language materials development process. But reading levels are only one part of multiple strategies needed to ensure ease of reading and understanding (62). Reading grade levels are typically derived from readability formulas that measure the number of syllables in words and the number of words in sentences (63,64). These formulas are mathematical algorithms and do not assess audience appeal, background knowledge, cultural appropriateness, credibility, tone, clarity of writing, or motivation levels. A good plain language piece must attract and hold the individual’s attention, highlight the key messages, be culturally appropriate, look easyto-read, and summarize the actions to take. This means moving far beyond writing text at a certain grade level and attending to the interplay among text, graphics, layout, and audience response. Myth: Plain language materials have little effect on reader comprehension. Fact: Research results are mixed regarding changes in comprehension levels when standard materials are compared to plain language materials, although the weight of the evidence favors plain language (65–70). It is important to note that researchers who compared standard materials to simplified, plain language materials, often used different measures of comprehension. These different measures may account for some of the variability seen in the research results (71). In

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addition, the plain language materials used in comparison studies may vary in quality. As both the IOM and AHRQ reports state, the world needs additional research about which approaches are most likely to increase comprehension and improve health outcomes. Regardless of changes in comprehension levels, research has shown that both strong and emerging readers prefer easy-to-read and understand materials (44,70,72,73). Myth: Plain language won’t hold up in court. This myth reflects the dominance of lawyers within public health and healthcare delivery organizations. Lawyers as well as administrators posit that plain language sounds good in theory, but that it would not protect healthcare providers and institutions. Fact: The use of plain language does not put providers or organizations at increased risk for legal problems. In America, a contentious society, concern about legal issues such as malpractice suits and the Health Insurance Portability and Accountability Act regulations is not unreasonable. But, plain language does not contribute to medical or regulatory negligence (74). In fact, it protects against it by ensuring that the risks of a procedure or intent of a regulation are more clear to the consumer (75). In the case of medical consent forms, especially those used in clinical research trials, consumer understanding is legally required. As many studies have shown, the high reading levels of most such forms precludes this understanding, increasing rather than limiting legal liability (73). Both international and national legal organizations and experts advocate plain language. Here are just a few examples.  Clarity, an international association promoting plain legal language, claims members on most continents. They sponsor legal meetings and publish a journal with the same name (70).  The American Bar Association supports plain language as well. In 1999, the Association’s House of Delegates passed a recommendation that urges the use in plain language in writing regulations (76).

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 Joseph Kimble, a professor at Cooley Law School in Lansing, Michigan, an internationally known legal plain language writing expert, states the case best: ‘‘Please don’t conclude that a legal writer has to choose between precision and plain language – that legalese has the advantage of being more precise, and plain language is less likely to get the substance right. That’s just not true. In fact, it’s the biggest myth of allyLawyers continue to write in a style so impenetrable that even other lawyers have trouble understanding ity .’’(77) Myth: Print materials are dead. Everything is moving to the Web. This final myth argues that booklets, flyers, and other text-based forms of information are outdated and that no one uses these materials anymore. It suggests that individuals rely almost exclusively on the Web for health information. Fact: Most websites are text-based and about 1 out of 5 American adults have never used the Internet (78). Using the Internet requires high-level literacy skills, including the ability to read, understand, analyze, and use the information on different websites. Except for highly sophisticated users, adults have difficulty finding health sites with the information they seek, locating relevant information within sites, and assessing the credibility of what they find (79–81). Websites are typically difficult to navigate and use. Sites often require lengthy scrolling, present many competing graphic elements, reflect poor organization of information, or use long chunks of text with technical language. Typically, web text is written at the 10th grade reading level or higher (82–84). Most plain language strategies to develop print materials also apply to web-based information. For web developers, it will be essential to use plain language techniques to create more accessible information (85). Let us also remember that adults who need health information the most – including elders, certain minority groups, those with chronic health conditions – have the lowest literacy skills and are the least likely to use the web (78). Thus, many organizations still produce large quantities of printed materials for consumers who need and want them.

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DISCUSSION AND CONCLUSIONS

Low health literacy is a major challenge in health communication. Most adults in North America and Europe lack familiarity and ease with the vocabulary, physiological underpinnings, and mental constructs underlying health and medical information (3). Millions of adults with limited literacy skills are at an even greater disadvantage. And yet the demand for consumer understanding of text-based communication in both print and on-line applications is growing in importance (15). Adult populations in industrialized countries must take ever-increasing responsibility for managing their health and healthcare (86,87). They must be able to use information from a variety of sources, in many formats, across many locations. Time to read and apply health information is usually brief and rushed whether in a supermarket, a hospital, or a pharmacy. And, literacy abilities decline with age, just as the need to manage health conditions increases (6,9). The consequences of misunderstanding important health information are serious. Adults with diabetes, asthma, and heart failure who cannot follow self-care instructions are hospitalized for complications. Patients who take the wrong dose of medicine may end up in an emergency room or the hospital. Individuals who sign informed consents, not truly understanding what they have agreed to and what the risks may be, create legal risk. These consequences pose ethical, safety, and cost concerns. Plain language is a strategic response, a key part of the solution to the low health literacy challenge. Accessible health communication could become the norm. But this promise will be realized only with much greater understanding of what plain language is and how it can benefit both consumers and organizations. Professional expertise in plain language communication, successful materials and websites, training curricula, and institutional implementation models are available (44,45,88–96). We encourage health organizations and academic institutions to access and use these resources, to increase the use of evidence-based practices. Only in this way will clear communication become the accepted standard, and garner the policy and resource support necessary for broad, sustained diffusion.

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Without a doubt, more research is needed to establish the most effective interventions for reducing the impact of low health literacy. Without a doubt, inaccessible or ineffective communication is only one piece of the puzzle. And, without a doubt, text is not the only way to communicate. Reading is just one way to learn, and understanding is just one step in decision-making. But both are critical skills linked to better health (97). And, everyone will benefit from halting the burdensome struggle to understand.

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