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Communicating Health: Priorities
and Strategies for Progress

Office of Disease Prevention and Health Promotion logo

Objective 11-2. Improvement of Health Literacy

Drafter
Rima Rudd, Sc.D., Harvard University

Small Group Participants
Marin Allen, National Institute on Deafness and Other Communication Disorders, National Institutes of Health, U.S. Department of Health and Human Services

Elaine Arkin, Consultant

Terry Davis, Louisiana State University School of Medicine

Sue Martone, Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services

Ron Pugsley, U.S. Department of Education

Joanne Schwartzberg, American Medical Association

Yvonne Thayer, Virginia Department of Education

Note taker: Stephanie Smith, Johns Hopkins Bloomberg School of Public Health

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Text of Objective
Improve the health literacy of persons with inadequate or marginal literacy skills.

Scope
The objective is intended to represent an important aspect of health literacy but cannot encompass all issues raised by and related to the subject. The objective means to serve the specific purpose of providing data on progress for health literacy improvement and the general purpose of stimulating discussion about a wide range of health literacy issues.

Measurement
The objective is developmental and will become measurable with data from the Health Literacy Component (HLC) of the 2003 National Assessment of Adult Literacy (NAAL). The NAAL is administered by the National Center for Education Statistics (NCES), U.S. Department of Education. The NAAL is the third literacy assessment of American adults. The first assessment of adult literacy, the Young Adult Literacy Survey, was administered in 1985, followed by the National Adult Literacy Survey in 1992. Data from the NAAL, which will be available in late 2004, will be used to establish a baseline and target for the objective and to complete the Healthy People 2010 data template.

The HLC, which is the first-ever national assessment of health literacy, was jointly developed by the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Education. As the lead agency for the health literacy objective, the Office of Disease Prevention and Health Promotion (ODPHP), HHS, organized a multiagency collaboration to identify stimulus materials and items for the HLC. In addition, ODPHP consulted with established health literacy experts outside the Federal Government about the appropriateness of the selected stimulus materials and items. NCES has overall responsibility to harmonize the HLC with the NAAL.

Currently, the NAAL is scheduled to be fielded only once between 2000 and 2010. If additional measures for the decade are required, either the NAAL will need to be re-administered or a different instrument will need to be identified.

The NAAL and its predecessors assess functional literacy—that is, people's ability to apply reading skills to everyday tasks involving prose, documents, and numbers. The mundane tasks include reading a newspaper, filling out an employment form, reading a bus schedule, adding a bank account entry, or computing a tip in a restaurant. Skills are measured against commonly used materials in society. The HLC of the 2003 NAAL will similarly focus on functional literacy; health-related activities, part of adults' typical experiences, will be incorporated into the functional literacy assessments. The NAAL will provide data on the percentage of persons with inadequate or marginal literacy skills who can perform specific health literacy tasks.

The HLC includes three types of health information and services: clinical, prevention, and navigation of the healthcare system. They are key types of health and healthcare information and services that the general population in the United States might be likely to encounter. The stimulus materials and the associated items in the HLC were selected to fit these types.

  • The clinical type includes those activities associated with interactions between the healthcare provider and the patient, clinical encounters, diagnosis and treatment of illness, and medication. Examples include filling out a patient information form for an office visit, understanding dosing instructions for medication, understanding steps for the self-management of acute and chronic illness, following a healthcare provider's recommendation for a diagnostic test, and providing accurate information in a medical history, either verbal or written.
  • The prevention type includes those activities associated with maintaining and improving health, preventing disease, intervening early in emerging health problems, and engaging in self-care and healthy behaviors. Examples include following guidelines for age-appropriate preventive health services, identifying signs and symptoms of health problems that should be addressed with a health professional, and changing eating and exercise habits to decrease risks for the development of serious illness.
  • The navigation of the healthcare system type includes those activities related to understanding how the healthcare system works and individual rights and responsibilities. Navigation requires being familiar with the vocabulary, concepts, and processes needed to use the healthcare system. Examples include understanding covered and noncovered benefits for health insurance plans, determining eligibility for public assistance programs, and being able to give informed consent for a healthcare service.

The question has been raised as to whether the objective should be reworded as a population objective so that data on the health literacy skills of the entire U.S. population, instead of only those with marginal or inadequate literacy skills, would be measured and reported.

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Issues Pertaining to Measurement
The objective was formulated as an assessment of individuals' health literacy skills. Individuals' skills, however, are only one part of the complex health literacy phenomenon. Healthcare providers, creators of health information and education materials, and the healthcare and public health systems bear a large part of the responsibility for having created materials, ways of communicating, and systems that are far too technical and complicated to meet the needs of the vast majority of the populations they serve. Consequently, the burden for change, at least in the short term, lies with healthcare providers, public health professionals, and healthcare and public health systems, in partnership with adult literacy programs, to reach those with limited literacy. Long-term, educational programming can work to raise the general literacy levels of the population and to incorporate training in navigating health systems. Any assessment of individuals' health literacy skills, therefore, must be interpreted in light of the systemic factors that strongly influence individuals' capacity to demonstrate health literacy.

Shame associated with poor literacy skills may be an important factor in obtaining an accurate account of the population's health literacy skills. Individuals with poor literacy skills are often very uncomfortable that they cannot read well, and they develop strategies to compensate. Depending on the method of assessment, individuals may use these strategies to appear to have higher literacy skills than they actually do.

The assessment of health literacy in a population is also influenced by the reading levels of health materials, the skills of individuals, the communication abilities of health professionals, and the organization of delivery systems for health information and services. Although the literacy and verbal skills of individuals are of critical importance, so too are the demands made by the health materials themselves, the communication skills of those in the health field, and the complicated nature of the healthcare and public health systems. The dimensions of these additional factors are briefly examined in the following.

  • Functional literacy measures incorporating currently available health materials do not offer a sufficient assessment of health literacy.

    The NAAL's health literacy measures will be based on common, widely used health information materials. However, three decades of studies published in medical and public health journals indicate that most health materials fall into reading-level ranges requiring high school, college, or graduate degrees (Rudd, Moeykens, and Colton, 1999) and often contain jargon and scientific terms rather than everyday or plain language. Additional measures will be needed to monitor improvements in the format, content, and structure of health materials prepared for the public. The current reading level and demands of health-related materials should be compared with rewritten and newly formatted materials over time.

    Most currently used assessment tools are designed for examinations of prose materials presented in sentence and paragraph format. However, a good deal of health-related print materials are prepared in document format using phrases, lists, and bullets rather than full sentences and paragraphs. Published studies of health materials suggest that health researchers have not applied the document assessment tool developed by Mosenthal and Kirsch (1998).

    Many critical health-related materials are written in open-entry format (e.g., medical history forms, insurance forms, in-take forms, research queries). The field would benefit from the development of assessment measures and open-entry format for health documents.

  • Health literacy assessments are too narrowly focused on the ability of individuals to use the written word.

    Linguists and reading experts have established links among a variety of skills such as reading, verbal presentation, and oral comprehension (Snow, 1991; Cunningham and Stanovich, 1998). In medical care settings, patients are expected to offer health histories and descriptions of symptoms and to listen to and comprehend verbal instructions. Adults are expected to understand, navigate, and meet the demands of bureaucracies and institutions to access entitlement programs and services. In the community, adults are encouraged to be aware of and act on health-related news and announcements. Each of these settings presents its own set of health literacy demands and requires different mixes of skills, which should be assessed.

    Health communications routinely include written as well as audio and video materials, messages on radio and television, and verbal presentation for information, diagnosis, and consent. An expanded examination of health-related materials must include information presented on tapes, videos, compact discs, and the Web (Stauffer et al., 1978; D'Alessandro et al., 2001). Research is also needed to assess how easily these different materials are used by low-literate populations and how well they can understand messages in these formats.

  • Health professionals' skills and the burdens of medical jargon, technical language, and complicated bureaucratic processes affect health literacy.

    Patients' ability to understand health and medical issues and directions is related to the clarity of the communication. Consideration needs to be given to the verbal as well as written communication skills of medical and public health practitioners. Factors of class, age, race, ethnicity, country of origin, gender, geography, health status, and (because family members may be part of the healthcare episode) family dynamics and roles may affect how patients interact with their healthcare providers and their ability to take actions to improve their health.

    Official documents, including informed consent forms, social services forms, and public health and medical instructions, as well as health information materials often use jargon and technical language that make them unnecessarily difficult to use. Reductions in the assessed reading levels of forms, instructions, and informational materials are insufficient. The amount of jargon and technical language could be reduced with greater adoption of plain language.


  • Special consideration should be given to the conduct of health literacy assessments of persons with limited proficiency in English.

    Assessments of health literacy for those with limited proficiency in English have some special challenges. Limited proficiency in English may make it difficult if not impossible for individuals to complete a health literacy assessment in English. Translation of the assessment into native languages is often not an adequate solution. Translators are typically from a different social class and speak different dialects or even languages than poor and working class individuals who are most frequently those with limited proficiency in English. In addition, limited proficiency in English is itself a barrier to accessing many types of health information and services, and, consequently, individuals may not have enough experience with a broad spectrum of health information and services to complete a standard health literacy assessment in English or their native language. Translation also is not an adequate solution because individuals may have limited literacy and oral communication skills in their native languages. Even translated materials may be too complex in presentation, writing style, and vocabulary for individuals with low levels of functional literacy in both English and their native languages.


  • Culturally based understandings of health and health care are relevant to the conduct of functional health literacy assessments.

    In addition to the assessment challenges presented by limited proficiency in English, cultural and linguistic considerations must be accounted for. Understanding the relationships among culture, language, and health is critical for the design and conduct of health literacy assessments in a multicultural society. According to the Office of Minority Health, HHS, culture and language may affect health, healing, and wellness belief systems; how illness, disease, and their causes are perceived; the behaviors of individuals seeking health care; and the delivery of healthcare services and provider behavior. Even if assessments of health literacy are conducted in the appropriate language for a specific population, instruments that are not sufficiently sensitive to cultural and linguistic differences may mischaracterize a population's ability to comprehend and act on critical health information and service recommendations.


  • Systemic factors affect individuals' health literacy skills.

    Healthcare and public health delivery systems are complicated bureaucracies with many procedures and processes associated with obtaining health care and public health services. Patients, clients, and their family members are typically unfamiliar with these systems and the associated jargon. Even highly motivated and educated individuals may find the systems too complicated to understand, especially when persons are made more vulnerable by poor health. Consequently, assessments of individuals' health literacy skills may actually reflect systemic complexity rather than individual skill levels. Studies of the complexity of healthcare and public health systems need to supplement and inform any assessments of individuals' health literacy skills.

Definition of Terms
Measures of health literacy must be based on clear articulation of terms, a selection of representative health-related activities, and a delineation of needed skills.

  • Functional literacy. The National Literacy Act of 1991 (National Institute for Literacy, 1991) offered the following definition of literacy:

    For purposes of this Act, the term "literacy" means an individual's ability to read, write, and speak in English, and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one's goals, and develop one's knowledge and potential.

  • Health literacy. Healthy People 2010 (HHS, 2000) cites and applies the following definition of health literacy:

    The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.

Various other definitions of health literacy have been proposed. Researchers note that health literacy must be understood as a dynamic characteristic that ebbs and flows in response to other factors, including health materials, communication skills of those delivering the message, changes in life experience, education, and the presence of comorbid conditions such as depression, mental illness, and functional status. Functional health literacy must also be understood in terms of having multiple antecedents or confounders. They include not only obvious factors such as educational attainment but also factors such as dyslexia, social deprivation, and mental illness.

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State of Knowledge About Issues Represented by the Objective
Education, traditionally used as a marker of socioeconomic status in the United States, has long been linked to health outcomes (Pamuk et al., 1998). Until recently, few inquiries had looked more closely at factors associated with education such as literacy. Health literacy, now squarely on the health agenda, emerged during the 1990s. Now, evidence is accumulating that persons with limited literacy are at risk for poor health outcomes.

Most medical and public health publications focused on literacy in the United States comprised findings from studies examining the reading level of print materials developed for patient education and for procedures and processes in healthcare settings (Rudd and Colton, 1998). Overall, researchers firmly established that the literacy demands of health materials exceeded the reading abilities of the average U.S. adult. Unique among the early health literature was a review article on health literacy in the 1989 Annual Review of Public Health, highlighting links between literacy and health outcomes. Based on research conducted in developing countries, Gross and Auffrey (1989) presented a body of evidence that the health of children was related to the literacy of their mothers. The findings noted in the annual review and the subsequent analysis of the National Adult Literacy Survey in 1993 spurred interest in the links between literacy and health outcomes in the United States.

The use of reading assessment tools in clinical settings and the development and use of the health-specific Rapid Estimate of Adult Literacy Measure (REALM) (Davis et al., 1991) and the Test of Functional Health Literacy in Adults (TOFHLA) (Parker et al., 1995) provided tools for health researchers interested in exploring these links. First, researchers were able to specifically compare the reading level of the health materials with the reading ability of members of the intended audience. Initial studies highlighted patients' difficulty in reading and understanding screening materials, appointment slips, directions for medicines, and informed consent documents. These studies more firmly established the disparities between the demand of health materials and the abilities of the people for whom the materials were developed, which had been noted in the publications of the 1970s and 1980s. In addition, researchers were now able to use these tools to examine health outcomes among patients with differing literacy skills.

A sparse but growing body of literature published during the mid- to late 1990s includes studies focused on the differences between various health-related measures in adults with limited literacy skills and those with literacy skills at or above the ninth grade level. For example, patients with low literacy report poorer health than do patients with high literacy (Weiss et al., 1992). They are less likely to make use of screening (Davis, Berkel, Arnold, et al., 1998), are more likely to present in later stages of disease (Bennet et al., 1998), and are more likely to be hospitalized (Baker et al., 1998). Numerous studies (Rudd et al., 2000) show that low literacy has been associated with poor health, poor understanding of treatment, greater use of health services, and low adherence to treatment regimens (a selection of studies are noted in the references). Finally, at the end of the decade, the American Medical Association's Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs (1999) published a white paper reflecting medicine's growing recognition of literacy and its role in health. An increasing number of national and international meetings on health literacy highlighted a growing recognition of the importance of literacy to those in the health fields.

Overall, the interest in health literacy has focused more on healthcare settings than on health actions and decisions at home, in the community, in the workplace, or in the policy arena. The published literature offers little evidence that public health practitioners have adequately met the challenges of limited literacy skills among populations of interest. The relationship between literacy and health promotion, health protection, and disease prevention activities has not been fully explored. For example, only one or two studies and reports have examined literacy and its relation to the purchase and use of food and home products, decisions involved in insurance and service delivery care options, or action related to occupational health and safety. Literacy links to health outcomes related to the care of children or elders, participation in community-based health action groups, or policy decisions have not been established. Little is known about how many individuals are lost to or excluded from health-related public assistance programs because of their limited literacy skills or because of inappropriately constructed documents, forms, and demands. Furthermore, few studies have examined health literacy links from the perspective of social justice and links to human rights; however, several studies have examined the informed consent process over time (Raich et al., 2001).

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Stakeholders
Organizations currently working on health literacy or related issues include, but are not limited to, the following:

  • AARP
  • Academy of General Dentistry
  • Ad Council
  • Adult Literacy Media Alliance
  • AMC Cancer Research Project
  • American Association of Medical Colleges
  • American Hospital Association
  • American Medical Association
  • American Medical Association Foundation
  • American Nurses Association
  • American Occupational Association
  • American Pharmaceutical Association
  • American Physical Therapy Association
  • American Public Health Association
  • Center for Medicare Education
  • Hudson River Center for Program Development
  • Institute of Medicine
  • International Literacy Network
  • Joint Commission on Accreditation of Healthcare Organizations
  • Latino Health Institute
  • Maine AHEC Health Literacy Center, University of New England
  • Managed Care Consumer Assistance Program, Community Service Society of New York
  • Massachusetts Department of Education: Operation Bootstrap, The Literacy Project, Read, Write, Now
  • Moffitt Cancer Center and Research Institute
  • National Academy on an Aging Society
  • National Association of Broadcasters
  • National Association of Science Writers
  • National Cancer Institute
  • National Center for the Study of Adult Learning and Literacy
  • National Committee for Quality Assurance
  • National Health Council
  • National Institute for Literacy
  • NVision (new adult literacy campaign)
  • Pfizer Corporation
  • Society of Professional Journalists
  • State Adult Education Programs Integrating Health Literacy (California, Georgia, Massachusetts, New Hampshire, Pennsylvania, Vermont, and Virginia)
  • State Health Literacy Coalitions (California, Maine, Massachusetts, New Hampshire, Ohio, Pennsylvania, and South Carolina)
  • The Robert Wood Johnson Foundation
  • U.S. Department of Defense, Tricare
  • U.S. Department of Education
  • U.S. Department of Health and Human Services (including Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Health Resources and Services Administration, Indian Health Service, National Institutes of Health, and Office of Disease Prevention and Health Promotion)
  • U.S. Department of Labor
  • U.S. Department of Veterans Affairs, Veterans Health Administration
  • World Education

Potential: Additional stakeholders should be identified; they would include agencies and organizations addressing health disparities as well as labor, industry, and environmental organizations.

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Status of Selected Stakeholder Activities
A number of States have recently launched health literacy initiatives (Matthews and Sewell, 2002). Presentations at national organizations have increased. To date, however, few stakeholders have actively funded health literacy research or implementation initiatives. Several Web sites, conference reports, and other publications have reported on the status of health literacy-related activities. For example:

  • Health and Literacy Compendium, World Education, and National Institute for Literacy
  • Health Literacy Proceedings, published and distributed by
    Pfizer, Inc.
  • An initiative on health literacy, launched by the American Medical Association Foundation, to raise physicians' awareness of the issues.
  • Forthcoming evidence-based practice review, sponsored by the Agency for Healthcare Research and Quality, HHS
  • Forthcoming report from the Committee on Health Literacy, Institute of Medicine
  • Ongoing research, National Institutes of Health, HHS

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Factors That Can Influence Change
Barriers to Change
Some of the multiple barriers to change are noted below:

  • Poverty as well as minority and immigrant status are associated with limited literacy skills. The effects of literacy, income, poverty, and health are related and interdependent.
  • As noted in the section on issues related to measurement, limited proficiency in English and cultural and linguistic differences present important challenges and likely barriers for individuals and populations to receive appropriate health information and services.
  • Practitioners, researchers, or funding agencies in the public health and healthcare fields may be unaware of findings of functional literacy assessments of adults.
  • Reading, writing, and presentation skills are finely tuned in institutions of higher learning but are geared for dialog and discussion among members of highly educated and often specialized audiences. Plain language communication may be considered a new skill.
  • Although public health and medical practitioners work to increase awareness and provide information, neither field has assumed the task of fully educating the public about how the body functions, health research findings, health information, and the environment.
  • Many interventions aimed at low-literacy populations have been developed and implemented; however, little has been done to evaluate the effectiveness of these interventions in terms of meaningful long-term health outcomes.
  • The process of delivering healthcare information, whether oral or written, does not typically include a method to determine whether the information is understood by the recipient.

Leverage Points
Leverage points for actions that have worked or have potential to effect change are described below:

  • Federal and State legislation that promotes health literacy can effect change.
  • Research findings linking functional literacy to health status provide critical leverage points for action.
  • Costs associated with incorrect use of medications, failure to comply with medical directions, and safety risks in workplaces can be used to support changes in policies.
  • Government regulations, such as plain language requirements, can substantially effect changes in materials.
  • Legal action provides leverage points for change. To date, a few court decisions have been related to the literacy of clients or patients or the reading level of the materials—for example, see Wong (1998).
  • National initiatives to effect change include Leave No Child Behind, Plain Language, White House Initiative on Hispanics (and Immigrant Populations), Centers for Medicare & Medicaid Services campaign to improve communication with Medicare beneficiaries, Agency for Healthcare Research and Quality efforts to improve patient safety, and the Government Performance and Results Act.
  • Research and interventions in the field of health communication have improved communication between patients and providers.
  • Earlier diagnosis of reading and language disabilities would permit earlier interventions.

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Strategies and Solutions
All of the proposed strategies and solutions depend on building increased awareness of the magnitude of health literacy problems in the United States and on identifying systemic changes that will make U.S. health systems easier for individuals to understand and use. A critical link among literacy, health, and health status must be recognized at a broad societal level. Ensuring health literacy in the United States is a fundamental issue of fairness and basic human rights. No single public or private entity can improve the health literacy of individuals. Partnerships, both traditional and new, will be required to marshal the necessary resources to make progress on health literacy. Each population or stakeholder group needs to engage in skill-building to address both the supply side (e.g., those who create health messages, information, forms, and documents; those who staff the healthcare, public health, and health education systems) and the demand side (e.g., patients, clients, their families and caregivers, consumers). Stakeholders are likely to realize the benefits from health literacy improvements by way of improved communication, greater adherence to treatment regimens, greater ability to engage in appropriate self-care, improved health status, and greater efficiency and cost savings to the health system as a whole. Health literacy, therefore, is relevant not only as a single objective but as an element of all the Healthy People 2010 objectives.

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Action Steps
Develop a national focus and agenda for health literacy.

  • Convene an exploratory planning committee to assess the opportunities for a national conference, such as a White House Conference on Literacy with health literacy as a major component or a separate White House Conference on Health Literacy.
  • Convene a working group to collaborate on a national report on health literacy based on data from the 2003 National Assessment of Adult Literacy.

Change professional practice for healthcare providers and public health professionals, including health educators.

  • Encourage professional organizations to make health literacy issues a high priority on their policy, research, and practice agendas and to develop positions and issue policy statements and papers.
  • Secure commitments from professional organizations to become involved in health literacy issues and advocate for change.
  • Encourage and support effective communication skills of health professionals, including the development of curricula for health professional training and continuing education.
  • Engage the media to increase professional and public awareness of the issues.
  • Connect health literacy issues to ongoing efforts to improve the cultural competence of healthcare providers.
  • Emphasize and support health communication efforts that address the needs of low-literate populations.
  • Promote the use of plain language and encourage widespread development and use of health glossaries.
  • Encourage health practitioners to work with adult educators on the delineation of needed skills to support health literacy rather than on the transfer of health information. Adult education professionals have long focused on skill-building activities related to language and vocabulary acquisition, reading, writing, numeracy, oral comprehension, and discussion. Their expertise can support and enhance health literacy goals.
  • Develop and implement educational curricula in professional and continuing education programs.

Partner with adult education to improve literacy skills.

  • The adult education sectors within several States have launched health literacy initiatives (Matthews and Sewell, 2002). Adult education curricula have frequently included health lessons often related to hygiene, nutrition, healthful or harmful habits, and substance use. Two national surveys indicated that State directors and adult education teachers believed that health-related content would likely engage adult students and thereby increase learner interest, motivation, and persistence (Rudd and Moeykens, 1999; Rudd, Zahner, and Banh, 1999). Health practitioners working with adult education systems gained access to and communicated with adults not reached through traditional health outreach. Thus, adult education learning centers provided the health field with an ideal site for reaching poor, minority, and medically underserved populations. At the same time, teachers and directors were cautious about the appropriateness of asking adult education teachers to present lessons on health content, which is not, after all, their area of expertise. However, adult education systems, with the goals of building skills for full participation in society, could augment students' abilities to access and navigate the difficult pathways of health information for themselves, their families, and their communities.

Enhance access to health information.
Materials

  • Collect comprehensive baseline data on the clarity of existing health information materials.
  • Assess the readability of both prose and document health materials.
  • Simplify and clarify health information in both prose and document forms.
  • Evaluate the effectiveness of simplified health information.
  • Promote the use of plain language and encourage widespread development and use of health glossaries.
  • Promote the development of materials that are culturally and linguistically appropriate.
  • Evaluate the effectiveness of improving health literacy on healthcare outcomes and health status.
  • Develop best practices for health literacy.
  • Develop resources of patient education materials written in plain language that can be easily available to health professionals.

Media

  • Increase the media's awareness of health literacy issues and
    audience needs.
  • Work with the media to make scientific information easier to understand for all types of audiences.

Oral and other nonwritten forms of communication

  • Establish a baseline of oral communication.
  • Improve understanding of what is effective oral communication.
  • Promote the use of culturally and linguistically appropriate communication in oral and other nonwritten forms of communication.
  • Adapt best practices from written communication to all other forms of communication, including oral, signed, audio, visual, and alternative or assistive devices.

Collaboration among all professional groups

  • Adult education
  • Reading specialists
  • Mass media
  • Minority news organizations
  • Health communicators
  • Plain language specialists
  • Healthcare providers
  • Healthcare organizations and health plans
  • Public health professionals
  • Legal and regulatory experts

Enhance access to health services delivery system (e.g., surveys, forms, questionnaires, signs, and other explanatory materials in healthcare locations).

  • Assess the legal requirements of existing forms to determine how they can be simplified and rewritten within those requirements.
  • Develop appropriate tools to assess the comprehension of forms and other materials used in healthcare delivery.
  • Collect comprehensive baseline data on the comprehensibility of existing forms and other materials.
  • Use findings to simplify and clarify forms and other materials.
  • Increase the number of ombudsmen in healthcare facilities and enhance their roles to include assisting patients, clients, and their families and caregivers with literacy demands.

Support the adult education system, including literacy programs at work, in correctional facilities and job training, family literacy, and ESL and distance learning programs.

  • Promote the expanded availability of adult education programs, particularly in worksite and healthcare settings.

Support all forms of literacy skill development for all population groups (e.g., age 0 to 3 years, preschool, K–12, adult, family).

  • Expand and strengthen interventions after initial diagnoses for reading and language disabilities.
  • Increase funding and program availability for document and numeracy skill training.

Include health literacy as a fundamental consideration in health policy and program planning.

  • Identify financial constraints, such as lack of reimbursement for patient education, in the healthcare system.
  • Initiate cost-benefit studies examining the relationships among health literacy, health status, and healthcare system costs.
  • Provide incentives for recipients of publicly funded grants, contracts, cooperative agreements, and program funds to demonstrate how they address the health literacy needs of the populations studied or served.
  • Identify any needed regulations and appropriate agencies to monitor compliance.
  • Promote additional research, including formative research, and program funding to address health literacy needs.
  • Promote the use of plain language. The Canadian Public Health System has adopted plain language rules that may provide a model.
  • Expand definitions of at-risk population groups to include people without a high school diploma or with limited literacy skills.

Engage community organizations and the lay public in health literacy efforts.

  • Inform the lay communication network through community development approaches.
  • Encourage participatory health and education efforts.
  • Work with adult educators to develop communication skills broadly.

Skill-building related to forms, directions, and information packets is important but will not suffice. Activities such as becoming aware of new findings, gathering information, and participating in community- or work-related action groups require efficacy-building and skills related to research, discussion, analysis, decisionmaking, and action. Many of these broader communication skills are already being taught in some adult education programs. Health-related curricula incorporating attention to these skills can enrich adult learners' experiences and will support health literacy goals.

Enhance health literacy research and its translation into practice.

  • Support studies of effective communication tools and techniques. The American Medical Association's (AMA's) Ad Hoc Committee on Health Literacy identified only 38 published articles that discussed how to communicate with low-literacy populations. Of these, only 17 discussed the development or implementation of interventions to improve patients' knowledge or outcomes, of which only one was a randomized, controlled trial.
  • Emphasize, support, and study nonprint communication efforts.
  • Create standards for the use of nontraditional media.
  • Develop and apply new markers for quality effective communication.

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Lead Organizations and Responsibilities
Examples: AMA and the AMA Foundation are working to increase awareness of health literacy among physicians and other health professionals through the distribution of health literacy kits and materials and a campaign on health literacy to reach medical societies, medical schools, conferences, group practices, and hospitals. Led by Pfizer, Inc., a number of national organizations have recently joined together to launch a program to educate consumers and patients about how to communicate better with their healthcare providers.

Timeframe for Action Steps
National conference on health literacy: 3 to 5 years

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For More Information
Canadian National Adult Literacy Database
www.nald.ca

Health Literacy Literature
www.nlm.nih.gov/pubs/cbm/hliteracy.html
www.hsph.harvard.edu/healthliteracy

International Adult Literacy Survey
www.statcan.ca/english/freepub/89-552-MIE/free.htm

Literacy and the Web
www.usability.gov
www.cast.org/bobby

National Adult Literacy Survey
http://nces.ed.gov/naal

National Center for the Study of Adult Learning and Literacy
http://ncsall.gse.harvard.edu

National Institute for Literacy
www.nifl.gov

National Partnership for Reinventing Government
www.plainlanguage.gov

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References
Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Health literacy: report of the Council on Scientific Affairs. J Am Med Assoc 1999;281:552-7.

Baker DW, Parker RM, Williams MV, et al. The healthcare experience of patients with low literacy. Arch Fam Med 1996;5:329-34.

Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med 1998;13:791-8.

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Contents
Introduction to the Health Communication Action Plans
Objective 11-1. Internet Access in the Home
Objective 11-2. Improvement of Health Literacy
Objective 11-3. Research and Evaluation of Health Communication Programs
Objective 11-4. Disclosure of Information To Assess the Quality of Health Web Sites
Objective 11-5. Centers for Excellence in Health Communication
Objective 11-6. Healthcare Providers' Communication Skills
Acknowledgments/
Credits
Appendix. Examples of Stakeholders Involved in Technology Diffusion and Internet Access Initiatives