Health Information Literacy: An Introduction to the Issues and Solutions By: Florence Paisey

Table of Contents

Introduction: Information Literacy.3 Information Literacy: A Brief History....4 Health Information Literacy Defined..8 Why Health Literacy? 12 Barriers to Health Literacy..15 The Demographics of Health Literacy....19 Health Information-Seeking....26 Approaches to Building Health Literacy.35 Consumer Health Informatics: Medical Informatics or Public Health47 References....50

Introduction: Information Literacy

Information literacy can be concisely defined as the ability to recognize the need for information, formulate questions based on those needs, locate relevant information, access it, assess it, organize it, synthesize it, and communicate it within a broader context, imparting meaning and significance. Christina Doyle (1992) set forth the basis for this abridged definition in her landmark report to the National Forum on Information Literacy. This report drew on earlier studies by Kuhlthau (1987) who integrated library skills with computer literacy, forming the concept of information skills. The publication of Information Power (1988) set national guidelines for school media programs and validated the educational merit of an information literate person. Information literacy is not a new skill. It was preceded by bibliographic skills, a set of basic library or information skills that have been widely accepted as core competences in educational programs since the early twentieth century (2001). Information literacy is a re-modeling and adaptation of bibliographic skills, providing skills necessary to meet the information challenges of the Information Age. In contrast to bibliographic skills, a discrete array of library skills, an information literacy program is process-oriented, requiring a systematic, sequential, and cohesive course leading to a contiguous repertoire of information skills. Information Literacy emphasizes learning outcomes as the result of a curriculum that enables one to selectively manage information. It may also be viewed as a holistic skill set, varying with the sophistication of needed information. For that reason, teaching information literacy extends beyond basic education and has become part of the core

4 curriculum in many institutions of higher education, progressing as the complexity of information and information needs evolve. Information literacy creates an information literate person, one who is equipped to learn and investigate subjects effectively throughout their life, or in the jargon of information literacy, a lifelong learner. Rockman (2004) describes an information literate person or a lifelong learner as one who is knowledgeable about finding, evaluating, analyzing, integrating, managing, and conveying information to others efficiently and effectively.

Information Literacy: A Brief History

The term information literacy came about as a result of Christina Doyles monograph, Information Literacy in an Information Society: A Concept for the Information Age. This work moved the ERIC Clearinghouse to adopt the term information literacy as a search term (Doyle, 1994). Though the term has relatively new acceptance, vestiges of its origins are evident from the late 19th century to the early 20th. In 1956, while working on her doctorate, Patricia Knapps prescient article titled Suggested Program of College Instruction in the Use of the Library stated that students must learn basic principles or concepts which can be generalized to many information-seeking situations (Knapp, 1956). Knapp developed her view and advocated a unifying theoretical concept of the library and one which embraces the bibliographic organization of scholarship (Knapp, 1966). Her instructional philosophy recognized the value of teaching how to retrieve information systematically as evidenced in her conclusion that library instruction should teach the information processes in the retrieval of information and ideas from the

5 complex system our society uses to organize its stored record (Knapp, 1966). Her concept-based model of library instruction emphasizes an information-seeking process, beginning with a research question and proceeding with a search for information that addresses the question. Knapp implicitly criticized the mechanistic nature of acquiring discrete bibliographic skills when she stated, Competence in library use, like competence in reading, is clearly not a skill to be acquired once and for all at any given level in any one given course. It is rather a complex of knowledge, skills, and attitudes which must be developed over a period of time through repeated and varied experiences in the use of library resources (Knapp, 1956). This view becomes more compelling as one considers the extent of electronic information available, its increasing scope and the skills required to access information in all formats along with the ability to evaluate information within the context of a particular discipline. Information literacy gained recognition in 1989 when the American Library Associations Presidential Committee on Information Literacy reported that information literacy is a survival skill and stated that Information literate people are those who have learned how to learn. They are people prepared for lifelong learning because they can always find the information needed for any task or decision at hand (American Library Association, Presidential Committee on Information Literacy: Final Report, 1989). Patricia Breivik chaired that committee, anticipating her establishment of the National Forum for Information Literacy, an alliance of education, government offices, businesses, international groups, workforce organizations and others who have intended to raise awareness and explore the role of information literacy in society (Rockman, 2004).

6 Five years later, in 1995, the California State University created its Information Competence Initiative, chaired by Susan Curzon. This extensive initiative addressed the fundamental issue of defining information competence, justifying the importance of information competence, stating specific goals and objectives, and suggesting methods by which an information competence program could be implemented within a university system, with varying levels and with regard for specific disciplines. The initiative also bought up factors that would deter and those that would promote the development of a program, as well as assessing the information competence of students and assessing achievement of information competence (Information Competence at CSU: A Report, 1995). This far-reaching initiative anticipated issues that have been the repeated subject of information literacy program development debate since its inception. The California Information Competence Initiative resulted in the implementation of information competency programs throughout California State Universities and the development of Web-based tutorials, workshops for faculty, outreach to high schools, community colleges, teacher/librarian collaboration, and support for an online information competency graduation requirement. As California has the largest state university system in the United States with twenty-three campuses, its endorsement and development of information competence/literacy programs boosted the involvement of key players in support of implementing information literacy programs and exploring the role of information literacy in society. In 2000, the Association of College and Research Libraries endorsed the educational role of information literacy in higher education when it published Information Literacy Competency Standards for Higher Education. These standards are now viewed as core competencies by accrediting agencies and standards on

7 which libraries in higher education are intended to develop programs, curricula, and activities. It is now widely accepted that one needs to be information literate in order to be gainfully employed in information rich societies. Information literacy has become a necessary skill for work, rather than simply an ivory tower indulgence. Terry Crane, former vice president for educational products at America Online, (2000) is cited in Rockman (2004), Young people need a baseline of communication, analytical and technical skills. We are no longer teaching about technology, but about information literacywhich is a process of turning information into meaning, understanding, and new ideas. Students need the thinking, reasoning, and civic abilities that enable them to succeed in and ultimately leada democratic economy, workforce, and society. Information Literacy may be regarded as a set of general research skills, but the individual who acquires the most enlightened and accurate information within a discipline will have knowledge of the language usage, specific sources of information within that discipline and possess the ability to critically evaluate those sources. Studies (Kickbush, 2001) have shown that individuals who are information literate make more productive decisions in each domain of life, such as business, finance, research, medical needs, and parenting. In its foresight, the California Information Competency Initiative recognized that individuals have needs for varying levels of information competence as well as needs for discipline specific information competence. To this end, the Initiative drew up ten general information competency skills and outlined what competencies discipline specific efforts need to address (Information Competence at CSU: A Report, 1995). Discipline specific

8 competencies include understanding the core body of literature for the field. This body of literature would include books, journal literature (print and electronic), conference proceedings, government publications, reference sources, Web sources, technical reports, and any other peer-reviewed or peer-supported literature such as doctoral dissertations, conference proceedings, or monographs. Computer skills were also included in the requirements for discipline specific competencies. One should be adept in efficient electronic transmission of information such as downloading, emailing, importing, and presentation modalities common to the discipline. One such discipline is medicine. It is the relationship of information literacy, health information literacy, and health literacy that will occupy the remainder of this paper.

Health Information Literacy Defined

The Medical Library Association recognizes health information literacy as the most critical life skill that helps patients and caregivers in making medical and health care decisions (MLA, 2005). It is viewed as a leading health priority, according to the Centers for Disease Control (CDC, 2005). Dr. Richard Carmona, a former U.S. Surgeon General, stated that health literacy can save lives, save money, and improve the health and well-being of millions of Americanshealth literacy is the currency of everything I am doing as Surgeon General (Carmona, 2003). The MLA advocates for health information literacy and defines it as the ability to recognize a need for health information, identify sources, assess the credibility of sources and their applicability to a particular situation, and utilize the information to make sound health decisions (MLA, 2005). It is a form of information literacy and draws on the general model of information literacy that the American Library Association

9 endorses. The Medical Library Association, the Centers for Disease Control (CDC), and the National Library of Medicines, Healthy people 2010, operationally define health information literacy as The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Ratzan and Parker, 2000). Specifically the MLA ((2005) identifies eight skills characterizing health literacy. They include: Recognition of a health need Identification of likely information sources Retrieval of relevant information Assessment of quality of the information Applicability of the information to a specific situation Ability to analyze the information Understanding the information Ability to use the information effectively

For patients, health literacy means the ability to identify when medical attention is needed, manage an illness, take preventive measures to promote ones health, and take medications correctly. For health care professionals, it means communicating with patients, helping patients understand health care information and act on that information (CDC, 2005). Health information literacy involves more skill than basic information literacy. It involves many social and individual factors cited by the Institute of Medicine as cultural and conceptual knowledge, listening, speaking, arithmetical, writing and reading skills (IOM, 2004). Health literacy also requires the additional skills of decoding instructions,

10 symbols, charts, and or in other words, quantitative literacy (Burnham & Peterson, 2005). The promotion of health is also linked to health literacy, it [health literacy] extends to the materials, environments and challenges specifically associated with disease prevention and health promotion (MLA, 2005). Health information literacy and health literacy fundamentally refer to the identical set of skills, though because health information literacy is a subset of information literacy it would encompass not only general information literacy skills, but also specific skills and understanding that enable a person to interact with health care professionals, follow a prescribed health regimen, and navigate the health system. Health information literacy arises from several quarters: public health initiatives, world health concerns, literacy organizations, and general information competency skills defined by the ACRL. Each organizations essential goal is to set standards or guidelines to develop programs resulting in health literacy. The IOM (2004) views a health literate person as one who has the opportunity to improve their health, use reliable, understandable information, has the ability to assess the quality of health information and understand health alerts, is culturally included in health care communication, has time for discussions between patient and doctor, can ask questions comfortably, and understands their rights and responsibilities in relation to health care. Sharon Grant, the Information Services Librarian at McGill University, presented Information Literacy and Consumer Health at the Information Literacy Meeting for Experts in 2002. This paper, prepared for UNESCO, the National Forum for Information Literacy, and the U.S. National Commission for Libraries and Information Science defines health literacy as the capacity of an individual to obtain, interpret, and

11 understand basic health information and services and the competence to use such information and services in ways which are health enhancing (Grant, 2002). She identifies two levels of health literacy: functional and advanced. Functional health literacy behaviors include following doctors instructions, taking medications properly, and recognizing the need for medical intervention. At a higher level, health literacy involves the ability to manage chronic illness, analyze risks and benefits of health care treatment, and provide informed consent. These definitions briefly identify what is expected of a health literate person. Helen Osborne, President of Health Literacy Consulting, states that, health literacy is not just about reading its about individuals finding better ways to understand health information given to them and becoming advocates for their own health to ensure they receive the treatment and services they need (Edlin, 2004). Kathy Ordelt, coordinator for Childrens Healthcare of Atlanta, refers to low health literacy as a silent epidemic which predicts health status more reliably than age, income, employment, education, or racial/ethnic groups (Edlin, 2004). She attributes limited understanding and low health literacy to the physicians office where patients are overloaded with information.

Why Health Literacy?

When addressing any form of illiteracy, including health, ignorance is the issue one confronts and the consequences of any form of it. When challenged with illiteracy in health, however, one is pitting life against those skills that will prevent disease, epidemics, and indignities created by prejudice borne of ignorance. One is also facing the issues of what promotes good health, how to discuss health issues, interact with health care practitioners, health care systems, and the management of ill health.

12 Ignorance in health has far-reaching and potentially devastating consequences. Consider Typhoid Mary. How many individuals know the story of Mary Mallon or as she came to be known, Typhoid Mary. How many know the genesis of the Typhoid epidemic created by this healthy carrier of bacterium causing the deadly illness of Typhoid the early twentieth century corollary to HIV. How many individuals still do not know how HIV is transmitted or take measures to protect themselves and others against being infected with this deadly virus? How many individuals are aware of the debilitating effects of osteoporosis, arthritis, or post-partum depression? How many know the potentially damaging effects of trans-saturated fats or the insidious consequences of fructose? How many individuals know how to find accurate information that will answer these questions? According to the Centers for Disease Control and Prevention nearly half of American adults can not understand basic health information, suggesting that at least half of American adults (90 million) could not answer any of the posited questions nor could they find answers to the questions. Taken to the next level, 90 million (or more) American adults are not deliberately taking measures to prevent any one of these illnesses from harming them, nor are they modeling healthy behaviors that would teach their children how to take care of their health. When one addresses the value of health literacy, one is really addressing the value of a healthy life. Paraphrasing Dr. Everett Koop, former U.S. Surgeon General, there is no prescription more valuable than knowledge (Edlin, 2004). And basic knowledge that engenders a quality life is what literacy and health literacy is all about.

13 Low health literacy has many other consequences. Edlin (2004) states that low literacy is associated with more hospitalization and emergency room use, increased adverse drug reactions, and a decrease in the use of preventive services. There is an accumulating body of research relating limited health literacy (as currently measured) to health knowledge, health behaviors, and health outcomes (IOM, 2004). Individuals with low health literacy and chronic illness have difficulty managing illness compared to those who are health literate. In addition, those with limited health literacy have decreased ability to share in decision making (Kim et al, 2001), lower adherence to therapies, and lower self reported health status (Arnold et al., 2001). The Institute of Medicine (IOM) has recently published a book titled, Health Literacy, A Prescription to End Confusion. This book addresses the problem of poor health literacy in the United States, verifying 90 million or half of American adults as illiterate in health. This report also includes another 50 million American adults who can understand easily identifiable information and make inferences using print materials, but have difficulty performing these tasks when complicated by sophisticated text. Though many individuals meet the definition and requirements of being health literate, understanding health information and direction is influenced by concentration, time, interest, intelligence, and circumstance. The stress of receiving a diagnosis of a serious illness can patently reduce concentration and thereby reduce understanding. Consider the example posed by the Centers for Disease Control: Your mammography showed a lump suggestive of cancer. A biopsy will be required to determine whether this is truly cancer or an artifact. If it is cancer, the biopsy will indicate whether it is malignant

14 or benign (IOM, 2005). Most patients receiving this information will see only cancer; the word will linger in their conscious thought and consume their attention. The patient will shutter with a wave of alarm any mention of this disease brings. Though the medical result simply said the physician wanted a biopsy, the patient is already dazed and preoccupied with issues relating to the possibility of declining health, the ardors of treatment, and potential death. The central idea of requiring a biopsy to determine the nature of the lump is lost in the alarming suggestion of cancer. Whether one is capable of completely understanding the message is irrelevant. As anxiety and alarm rise, so does the ability to focus, comprehend, and concentrate. Ones worse fears take charge, not only for the patient, but also for family members. Clear, simple, unambiguous health information must be presented to a patient. The physician should communicate empathically, on a level in which the patient can understand, and with less emphasis on information and more on humanity or how such information affects the patient emotionally. This quality of communication will not compromise the integrity of scientific findings; however, it will facilitate a patients ability to manage the report. Health literacy is a two-way street, both clinicians and patients need skills that will result in behavior identifiable as health literate or the ability to manage health needs and a potentially acute diagnosis.

Barriers to Health Literacy

Ninety million American adults, half of the adult population, can not obtain, understand, or act on health information that will prevent an illness, promote health, or manage ill-health. If health literacy is a primary factor in a healthy society, it would seem

15 that all Americans would be concerned. Ultimately, each person is affected. What is the problem? Why is it the silent epidemic? Who is responsible? American ideology makes it easy for societal agencies, policy makers, health care providers, and the general public to wag a finger at the individual adult and say, You are responsible for your own life; it is your responsibility to become health literate. This approach will promise that the issue and impediments to health literacy will be ignored. Illiteracy will continue to go unreported by patients, unappreciated by the general public, and finally by policy makers and health-care workers. Complications of becoming health literate will continue to be overlooked while the insurmountable responsibility will continue to be placed squarely and naively on individual shoulders. These attitudes, however, will not only perpetuate illiteracy, they will also impede scientific advancement as fundamental social, educational, medical, and regional obstacles go unaddressed. Medicine has advanced, the population has grown, the healthcare system changed, and the digital divide recognized; problems necessitate resolution, if we are to be a health literate people. Healthy People 2010 has identified health literacy as an important component of health communication, medical product safety, and oral health (HHS, 2000). The World Health Organization (WHO) has identified health literacy as a key factor in health promotion and a primary contributor to a healthier society (WHO, 2000). It is a concern to anyone interested in product safety, worker health, product labeling, environmental health, mental health, patient rights and responsibilities, quality of care, or access to information, insurance and services( Rudd, et al, 2003). So, whats holding us up?

16 Rudd reports that a mismatch exists between the reading levels of the materials [health brochures] and the reading skills of the intended audience (2000). Health information is written on a level that is significantly above the level at which most people read. The CDC (2005) refers to reading as a lose or use skill, meaning that if individuals do not read as a personal or professional habit, their level of reading skill will decrease. In other words, the level at which people read is not necessarily the level of the highest grade of school one has completed. The CDC states that most adults read three to five grade levels below their highest grade completed. Conversational skills are not indicative of reading level. They are deceptive. People generally speak a few grades higher than their reading skill. In addition to the mismatch between health information and reading levels, low health literacy parallels U.S. demographics and cultural interpretations of health messages and information. The fastest growing populations are those that are most likely to be affected, reports the Centers for Disease Control (2005). This includes people who are in minority populations, immigrants, the sick, poor, elderly, uneducated, and culturally influenced. Cultural resistance to scientific information is a powerful barrier and often interferes with how people interact with themselves, their perception of their own health and well-being, as well as the health care system. The Institute of Medicine (2004) states, Culture gives significance to health information and messages, and can shape perceptions and definitions of health and illness, preferences, language and cultural barriers, care process barriers, and stereotypes. A poignant example of the effect culture plays in the perception of health was offered by the Institute of Medicine.

17 The hoola said Mom should confess to me and before God Jehovah. She did. She asked me to forgive her and I did. I wasnt angryAnd later Moms sickness left her. Of course, she still had diabetes, but the rest being so confused and miserableall that left her (Shook, 1985). This excerpt illustrates the point that what is perceived as illness in a particular culture, may be very different from the reality of the illness. Culture shapes our attitudes, our expectations, our openness to receive health care, and willingness to manage illness as well as take preventive measures ensuring sound health. It is important to understand and raise ones awareness of the cultural impact on health and how people obtain health information and use that information. Other flagrant barriers to health literacy include challenges facing individuals with deafness, auditory processing disorders, medical jargon, and technical terms. Schillinger (2003) addresses health communication distinguishing between the talk back and teach back methods of communicating medical information. Do health care professionals talk at patients or teach? If patients require more direction than a physician has time to convey, is there provision for the patient to obtain instruction by a physicians assistant, nurse, or counselor specialized in facilitating the physicians recommendations? If a patient is confused, disoriented, alarmed, or unable to fathom the impact of an illness, is there appropriate counseling available immediately, on site? Time and place will significantly influence a confused patients ability to seek and accept guidance. Schillinger (2003) also raises the issue regarding access to information. Access to information, in simple terms, refers to the ability to obtain information that satisfies an information need. Barriers to access impede health communication in many ways. Such

18 obstacles include technical issues such as obsolete formats, physical or mobility restrictions, cultural limitations, economic obstacles when information is costly to obtain, and usability issues if understanding is complicated by ineffective organization of information. Schillinger has also cited communication problems with disinformation, multilingual perspectives, and visual presentation of information for multicultural populations (National Forum on Information Literacy Meeting, 2003). He identifies the problem of nonverbal communication and cultural meaning. Linguists and anthropologists have established that nonverbal behaviors and their meanings differ among cultures and, I speculate, can impact an individual more than what one may be hearing, particularly if a patient is confused, health illiterate, or both. Nonverbal signals include facial expressions, proximity, gestures, eye contact, and posture (BBC, 2005). Other problems for the individual with low health literacy include understanding informed consent, clinical trials, assumed knowledge, and disconnects or discrepancies among specialized vocabularies of specialist groups. The same vocabulary will not necessarily be employed by all physicians and specialists (Schillinger, 2003). And the professional vocabulary employed by practitioners is inconsistent in communicating with patients. One physician may refer to a nasty cold as Flu, a virus, or simply a cold. Some physicians will even, inappropriately, prescribe an antibiotic for a viral cold, while others, will explain that an antibiotic will not attack the virus and could strengthen an individuals tolerance for antibiotics, so that they are ineffective when necessary. How do the uninitiated deal with these contradictions?

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The Demographics of Health Literacy

Demographics differentiate among human populations and population segments when used to identify consumer markets. Levels of health literacy have been analyzed in terms of demographics or specific groups, and the health literacy level within these groups. It is not valid to generalize or expand results to all populations with characteristics of these specific groups as the samples have been too small and cultural considerations have not been addressed. However, the findings do offer information about the specific groups studied, suggesting the need for further investigation and yielding important insights about these specific groups. Primarily, however, the measures used for health literacy are inadequate; they are indicators of reading skills rather than the full range of skills needed for health literacy (IOM, 2004). As stipulated by Healthy People 2010 (HHS, 2000), current research tools do not differentiate among reading ability, lack of background knowledge, lack of familiarity with language, cultural differences in approach to health care, oral communication skills, and writing skills. And finally, no health assessment tool measures health literacy demands within different health contexts. When looking at demographics in health literacy, it is necessary to recognize that health literacy is a shared function of social and individual factors (IOM, 2004). Interdisciplinary literature consistently finds that health literacy is based on the interaction of individual skills within health contexts, the health-care system, the education system, and broad social and cultural factors at home, at work, and in the community (HHS, 2000). As such, responsibility for health literacy must be shared by these sectors.

20 The influence of culture, or ones experiential identity, in health and health literacy resonates clearly. Culture is acquired by individuals as members of a social group or society. It is often erroneously blended into categories of race; yet no scientific evidence indicates a causal or correlational relationship between the demographics of race and health literacy. The IOM report, Speaking of Health (2002) states that race is not a meaningful biological classification system for human populations, and even ethnicity can be interpreted too rigidly. The IOM bases its conclusion on current anthropological thinking that suggests both individuals and populations should be assessed in terms of the influences on their lives and cultural histories or in current jargon, experiential identity. According to the IOMs research, peoples knowledge and understanding of their health, and their health literacy, are based on a composite of these life experiences (IOM, 2002). Although research studies included in IOMs study of health literacy, identify racial or ethnic groups, these labels are terms used only to identify any population studies discussed or presented by the IOM (2002). They are not intended as definitive demographic categories that will identify those most likely to have high or low levels of health literacy. Culture, or patients varied perspectives, shared values, healing rituals, beliefs, and behavior, is continually found to be central to quality health care (IOM, 2002). Contemporary communities consist of individuals with multiple cultural experiences and can not be rigidly defined with racial or ethnic references. Culture serves as a powerful filter through which information is received and processed. The concept of culture as a composite of life experiences or experiential identity has replaced the traditional notion of acculturation. The IOM has researched culture, cultural processes and cross-cultural

21 interventions in an effort to learn about the ways of learning, beliefs and health and illness, and patterns of communication as they contribute to health literacy and affect communication, comprehension, understanding, and decision-making (IOM 2002, 2003a). Whorfs linguistic determinism hypothesizing the effect ones language has on ones world view has been strongly contested in recent years. Yet, when looking at health literacy, the relationship between ones [Im going to stop marking these apostrophe errors now, but you get the point.] language, conceptual thought and the way a patient may accept or deny an illness, adhere to a treatment regimen, or understand how a medication will cure, control, or prevent an illness brings Whorfs view into consideration. Current reference to linguistic influence on thought has been related to thinking styles and information processing, rather than linguistic determinism. In-depth scientific studies of language as the interface between cultural processes, behavior, literacy, and health literacy have not been performed, but would yield valuable information if conducted. The question of how a person constructs meaning or understands communication, whether through a linguistic framework, cognitive processing, and perception of experience, or the interaction of these variables and others offers fertile ground for interdisciplinary study. The relationship between language and cognitive processing is an unremitting debate. An example of how language influences communication between physician and patient is cited by the IOM (2004). When using the word epilepsy researchers found that both patients and neurologists use the word trauma, but connotations differ between neurologists and patients. Neurologists usually mean a

22 physical blow while patients understand the word to mean psychological damage. The same word used with Latino patients is further complicated as trauma has the same two meanings in Spanish, but usually refers to psychological harm (Long et al., 1992). One classic example of how language influences patient perspective is the many different words used to describe snow in the Inuit languages or dialects. In the Inuit culture, snow is a central influence on behavior and culture. Most words to describe snow in Inuit can not be translated into English, there are no related words. The IOM (2004) gives a keen example of the problem of language in health communication. The Hmong language has no word for cancer or even the concept of disease. Were going to put a fire in you, is how one inexperienced interpreter tried to explain radiation treatment to the patient, who as a result, refused treatment (Morse, 2003). A final example relates to an elderly Navajo man. Escorted by his granddaughter who was fluent in English, but limited in Navajo, this elderly man was taken to an internal medicine clinic for an infection in his leg. The physician prescribed an antibiotic for the infection. The elderly man did not understand the concept of infection or antibiotic. Both his granddaughter and a nurse tried repeatedly to convey the concepts and the necessity of taking the antibiotic as prescribed. After repeated unsuccessful attempts at communicating, the Navajo man agreed that he understood, out of frustration. He then told the nurse that he wanted a traditional ceremony performed and asked her to tell the doctor. Again, the doctor attempted to communicate. Again, the elderly man said he understood, rather than endure more frustration. The Navajo man, unable to understand, decided to go to a traditional medicine man. The medicine man did everything he knew,

23 but the elderly mans leg had to be amputated. The doctor ascribed the amputation to noncompliance. A linguistic and cultural barrier was not mentioned; health literacy was not identified as an issue and, as a case in point, was not reported as such. Similar examples relating to health literacy include how a fever is defined, how pain is expressed, and how body parts are identified (IOM, 2004). These examples of how language influences health literacy illustrate that for one to be health literate in the United States, one has to have the cognitive ability to understand Western biomedical thought. There is no doubt that health literacy must be understood in the context of culture and language. Given that the level of general health literacy can not be scientifically measured by race or ethnicity, specific populations can be described and the level of health literacy measured (with current, inadequate tools) within those populations. Report after report has emphasized that half of American adults are illiterate in health. Within this half (90 million), the largest health illiterate population of American adults are native born Caucasian speakers of English (57 million) according to the National Adult Literacy Survey (Kirsch et al, 1993). Health literacy requires a higher and broader level of literacy than general literacy; it may be inferred that subjects would perform at a lower reading level on a psychometric instrument that fully measures health literacy than on a measure designed to assess the level of general literacy. As no instrument that fully measures health literacy exists, the National Adult Literacy Survey (NALS) was employed. All findings stipulated below are results of that instrument.

24 Over and above the 57 million native English speaking Caucasian adults, groups with low literacy include the poor, ethnic and cultural minorities, those who live in the southern and western regions of the U.S., those with less than a high school diploma or GED, and those above the age of 65. Nearly all adults who did not finish the eighth grade were found functionally illiterate at the lowest level. Generally, 70 percent of immigrants scored at the lowest level on the National Adult Literacy Survey (NALS). Individuals who describe themselves as having a physical or mental challenge scored at the lowest levels of literacy. Over half of the individuals with hearing, vision, speech or learning disabilities also scored at the lowest levels of literacy. It is estimated that 7 out of 10 prisoners surveyed by NALS (IOM, 2004) scored at the lowest level of literacy. Other groups that were not specifically assessed by NALS are known to have limited literacy skills. These groups include the impoverished, homeless, and military recruits. As there are no assessment tools that fully measure health literacy, no population base is directly linked to literacy, health literacy, or of health literacy to health. However, correlations between measures of literacy and measures of reading in a health context suggest a strong link. Tests of the ability to read basic health vocabulary and numeracy include the Rapid Measurement of Health Literacy in Medicine (REALM, Davis et al, 1993) and the Test of Functional Health Literacy in Adults (TOFHLA, Parker et al, 1995). It is suggested that for current practice in health care settings, practitioners should use informal measures to identify health literacy (Doak, CC et al., 1998). Such informal measures would be infused into the dialogue between patients and care givers. Examples of informal measures or questions that might be used include: Can you tell me what this

25 medical test is and how are you going to prepare for it? Simpler questions could inform the practitioner of a patients skill level, or the extent of a patients ability or inability to understand, communicate, and follow medical direction. Such questions might be as basic as Did you take your temperature? How did you take your temperature, and Can you tell me what a normal temperature is? One may simply ask, How do you take care of yourself? If a physician prescribes a liquid antibiotic for an ear infection, teach the patient that the antibiotic should be taken orally and then gently ask the patient to explain or reiterate how the antibiotic should be taken. Though obvious to those who have functional health literacy, and previous experience with health care, these questions may seem absurdly simple. However, interfacing with practitioners and carrying out treatment involves many skills, and these skills, however simple to the literate, are confusing to those with no previous experience of medical care or pharmaceutical treatment. This is the reality that health literacy is addressing. The other side of the coin relates, not to the patient, but to the practitioner. Low literacy scores on NALS indicate that half of American adults perform at a very low reading level, indicating low health literacy. However, understanding medical information, treatment options, and a regimen of treatment affects more than those with limited literacy. Individuals who have high literacy may be adversely affected in multiple ways by complex literacy demands of the health care. With regard to this situation the IOM regards health literacy as a reciprocal function of the health care context and the individual (2004). Thus, no matter what level of literacy skill one possesses, once a person enters the health care context, health literacy, including all its dimensions, becomes an issue.

26 Consider this nurse with advanced degrees who refers to herself as a total health illiterate and wonders how this is possible. She reports that she was diagnosed with a rare autoimmune disease that extended into several other diseases, one of which lymphomacould be fatal. She continues, reporting that despite her healthcare background, high literacy, and many resources, she doesnt understand what she needs to know about her condition. She added that she wrote to the researcher because with all her supposed advantages, she still doesnt understand her condition or prognosis (Mayer, 2003). Why? Has her physician made too many assumptions based on her healthcare background, or was the physician lacking the resources that would enable meaningful communication or understanding? Health literacy is reciprocal; any professional discipline that is discussed on a highly technical level will be abstruse outside of that discipline. Quantum physics is certainly out of my field of discourse. How many physicians know a motherboard from flash drive? Do healthcare workers assume that patients [educated patients] can and should understand technical medical information without benefit of translation into laymans language?

Health Information Seeking

We have looked at many aspects of health literacy including a definition of health literacy, the relationship of information literacy to health literacy, barriers to health literacy, the demographics of health literacy populations whose literacy level is too low to be recognized as health literate, and those who function professionally with a high level of literacy, yet often can not decipher medical information when very technical and

27 complex. Additionally, we have addressed culture and language as primary to understanding ones health, treatment, and promotion of health. However, a full appreciation of health literacy and its impact requires understanding how individuals obtain information about health, including health information sources, needs, information contexts, and the complexity of communication. According to a Gallop Poll in 2002, the most popular sources of health information include news media, advertising, family and friends, doctors, nurses, and the Internet. The same poll found that most people (70 %) obtain health information from doctors and television (64%), while the most trusted sources of information are doctors (93%), nurses (83%), and books (82%). These findings are compatible with the traditional view maintaining that most people gain health information from authoritative sources such as physicians and nurses. As the Gallop Poll is a national survey, the sample size would be extensive including most populations, particularly the poor, minority groups, and the elderly. Some studies that focus on health seekers who obtain health information through online sources (Pew Internet and American Life Project, 2002) affirm that few health seekers substitute online information for a physicians advice. The NALS literacy study (Kirsch et al, 1993) reported that individuals in the lower literacy level were unlikely to use print sources for health information. Currently, the National Cancer Institute is conducting one of the first national surveys on health information sources, the Health Information National Trends Survey (HINTS). The purpose is to provide data about models of information use,

28 particularly information use about cancer and opportunities to provide information relating to cancer. Results of this survey are not yet available (IOM, 2004). The six popular sources of health information include news media, advertising, family and friends, doctors, nurses, and the Internet with varying levels of trust for each source. The news media is an enormous, influential source of health information. Over a dozen magazines exclusively related to health are available at grocery stores, newsstands, bookstores, and various convenience stores. Newspapers carry health sections and reports that reach millions of people on all levels of literacy daily. Three quarters of readers with NALS level 1 literacy skills (ability to pick out information from magazines and newspapers) reported reading home, fashion, health, or reviews sections (Kirsch et al, 1993). Major broadcast and cable networks have health journalists, while many of TVs popular shows such as morning reports on the Today Show and the Morning Show as well as other talk shows including Oprah, Dr. Phil, and The View carry health information and advice. Advertising is a multi-billion dollar industry and a major source of health information. According to the Institute of Policy Innovation, direct consumer advertising was estimated at 1.8 billion dollars six years ago, in 1999 (Matthews, 2001). These advertising campaigns are intended to provide health information to consumers that will motivate specific health behaviors. Maguire (1999) reported that visits to doctors offices as a result of advertising rose drastically in 1998. A few specific concerns were smoking cessation, hair loss, impotence, and high cholesterol. Clearly these marketing efforts are not objective information campaigns, but a means of persuading consumers to buy into

29 their new products, services, and the potential of behavior change by understanding what pictures appeal and messages compel people to follow their suggestions (Wilke, 1994). The principal characteristic of social and commercial marketing is bias. The purpose of marketing is to persuade. Facts, stories, and images are carefully selected to produce a desired result, rather than present full information for an intelligent decision (Mazur, 2003). Many individuals are aware of the bias in advertising, yet they continue to act on marketing campaigns. Researchers have raised the question of whether patients actually want to participate in fully shared decision-making regarding their health. Shared decision-making requires thought, effort, and a willingness to take responsibility for ones role in decisions. Many issues relate to an individuals decision to act on objective information or on an advertisement. How often and how much practice do most people have in making completely objective decisions? Often, the most prudent, objective thing to do is not the most desirable. Personality, intelligence, and individual differences will play a key role in who will make objective, shared decisions. Further investigation in behavior science on this topic, within the context of health related decisions, would facilitate improved behavioral understanding. Family, friends or the lay network (IOM, 2004) is a significant source of health information. This means of attaining health information is shared through personal stories, ethnic media broadcasting, and print media coverage. Individuals with low literacy skills are particularly inclined to obtain health information from family and others who have had experience with a diagnosis, rather than read about the illness. Information derived from cultural folklore or religion would fall into this category.

30 According to the IOM (2004), seventy million Americans access online health information. A recent survey examining Internet use among the population group of 18 to 24 year olds, found that 90% of individuals within this group have been online, and 75% of that group have used the Internet at least once to find health information. Interestingly, it is reported that online searches for health information exceed searches for sports, online shopping, and participation in chat rooms (Rideout, 2001). Although many questions have been raised about the quality of health information online, it is clear that American adults use the Internet to seek health information; 6 million American adults go online for medical information daily. That number exceeds the number of persons who actually visit medical offices daily, according to the American Medical Association. Most of these health seekers access the Internet with no definite research plan. Experts recommend setting aside ample time to perform a quality search, visiting at least six sites. However, most searches begin with a search engine, rather than a medical site, and hit two to five sites (Pew Institute, 2002). The Internet and American Life Study (Pew Institute, 2002) reported that most health seekers go online to answer a specific health question and are generally cautious about making decisions based on that information. This study found that most health information gained online is shared with a physician and decisions regarding diagnoses and treatments are made with professional advice. Within the 70 million American adults who access the Internet, 72% are women and 51% are men. Of these online users, 71% are between 50 and 64 years of age, while 53% are between the ages of 18 and 29. Those individuals with more education and online experience are likely to search the Internet for health information (Pew Institute, 2002).

31 The Internet and American Life study (Pew Institute, 2002) carried out a special survey of 500 Internet users who go online for health information between June 19th and August 6th 2001. The survey found the following: Disease information, information about weight control, and facts about prescription drugs top the list of interests for online health searches. o 93% of online searches concern a particular illness or condition. o 65% of health searches focus on nutrition, exercise, or weight control. o 64% of health searches concern information on prescription drugs. o 55% of health searches focus on gathering information before visiting a doctor. o 48% have looked for information about alternative or experimental treatments or medicines. o 39% of health searches have targeted a mental health issue. o 33% of health searches focus on a sensitive topic or a topic that is difficult to talk about. o 32% have searched for information about a particular doctor or hospital. A representative individual searching for health information relies on search engines, multiple sites, and searches for medical information only occasionally. Survey respondents fell into three groups: twenty-five percent are vigilant about evaluating a health site; twenty-five percent are concerned, but casually search for information, and fifty percent rely only on their common sense and do not check the authority of the site, the last update, or the privacy policy.

32 o In an effort to explain this search behavior, the Pew committee found that individuals do not approach searching more vigilantly because they trust the online environment. 72% of the individuals searching for health information reported that one could believe all or most of the health information found online. 69% report they have not found any wrong or misleading information. 28% of the individuals obtaining health information online report that they have found wrong or bad information. When online health information seekers reject information from a Web site they cite the following three reasons: o 47% find a site too commercial and seemed more concerned with selling products than providing accurate information. o 42% have rejected a site because they could not determine the source of the information. o 37% have rejected a site because they could not determine when the information was last updated. o Other reasons include sloppy or unprofessional design, no visible professional approval, and the presence of incorrect information as assessed by the searcher or the searchers doctor.

33 While reports describe doctors irritation with patients who arrive with online information, respondents told a different story when asked to relate a recent interaction with a physician concerning online information. o Of the 37% who discussed online information with a doctor, 79% reported that the physician was interested in the information found online. o 13% brought up what health information they found online and were rebuffed or found the doctor not too interested. The Pew Project reported that of those health seekers who go online for health information, 72% trusted online health information, yet unreliable, misinformation, and malevolent information on the Internet is rampant (Murray et al., 2003). Eysenbach (2002) conducted a study to describe techniques consumers used to retrieve health information on the Internet. Twenty-one Internet users participated in three focus groups with 6 to 8 persons in each. Health professionals were not included in the focus groups. The median age was 37. The purpose of the study was to identify the needs, expectations, and problems of consumers searching for online health information. Emphasis was also placed on what criteria users employed in evaluating the credibility of a site. The participants retrieval process was observed as they searched for answers to about 8 questions in a usability laboratory. The questions were taken from the Heidelberg Database of Patient Questions. Participants were instructed that they had 20 minutes to answer each question, that they should find an answer they felt confident about and to use searching behavior as they would at home. The usability laboratory consisted of a computer with software that would log sites visited and a digital camera to record

34 behavior between the user and the computer screen. One or two observers sat in the background taking field notes. Participants were interviewed on how they assess web sites. Results indicated that users looked for sites that had a professional design, understandable writing, some official affiliation, and the citation of scientific references. A detailed search analysis was possible with 16 of the 17 participants. All participants visited a total of 646 unique web pages, from 271 unique sites. Eight different search engines were used with participants remaining on each site for slightly over one minute. None of the participants visited medical portals, sites of medical associations or libraries as a starting point, and only 99 of the 280 searches used more than one word to conduct a search. Participates usually chose the first results of a search and did not visit the second page of results. Rather they began another search. Most participants (97.2%) accepted a link in the first ten hits of a search, while 71.3% followed a link within the first five hits. Despite these poor, suboptimal search strategies, only 7 of the 136 questions posed were not answered. When asked about authority of the sites, participants did not know the source of the sites, how the information had been compiled, or visited the homepage. Most of the participants (80%) could not recall which sites they had visited or the organization behind the site, not because the site did not disclose this information, but because the users did not pay attention to the source of information. Eysenbach discusses several limitations of this study including the small sample size, an artificial environment, and the possibility that participants felt time pressure. I would add that the researchers observed the participants in the same room while searching; this can significantly affect behavior. Eysenbach (2001) also performed a

35 meta-analysis of empirical studies of consumer health information on the Internet and found that 70% of the studies evaluated concluded that quality of information was a problem. Accessibility, quality, and reading grade were salient barriers to understanding. Health literacy, information literacy, and consumer health information or the quality of information disseminated, are inextricably bound.

Approaches to Building Health Literacy

This paper has focused on definitions, effects, and assessments of health information literacy or health literacy, and sources of health information. The definitions of health literacy have been presented and the level of health literacy among American adults has been discussed, in general, and as it relates to specific populations. Half of American adults function at level 1 or level 2 of the NALS measure. As health literacy requires a broader skill base than general literacy, it can be deduced from this literacy measure that health literacy would be no higher. Various approaches are necessary to improve health literacy. The approach will largely be determined by the level of general literacy. Where general literacy and low education play key roles, it would seem that health literacy would be improved through education and outreach programs. The IOM (2004) supports this view stating it is important to note that training of educators and providers is one of the most important areas of current activity in the health literacy field. Integrating health-related lexicon and typical sentence structure employed by physicians and health care workers would approach the matter from a functional method. This method would teach reading skill through health-related vocabulary, and focus on issues that might arise within a health

36 context. These issues may involve asking questions about diet, exercise, treatment options, length of treatment, or prognosis. Rather than address health literacy from general reading passages, one would use medical excerpts at the appropriate level to efficiently raise health literacy. Immediate vocabulary might be suggested by that used on REALM and TOFHLA, tests of health literacy that, respectively, ask the participant to read a list of basic health-related words or select appropriate passages that the participant would complete, using a cloze technique. The TOFHLA reading passages could serve as a model for teaching and learning reading. The challenge of improving low literacy levels and relating them to health would be the province of adult education. It would seem appropriate and offer incentive to extend credit or a certificate for satisfactory completion of a health literacy class as part of adult basic education or continuing education. The role of the librarian in this effort would be to build supporting collections, resources, and teach information literacy as it applies to health literacy. The National Network of Medical Libraries offers suggestions on building supportive collections and provides a wide range of materials for use. These materials are freely available at http://nnlm.gov/ .The National Library of Medicine offers extensive tutorials on many illnesses and ailments. These tutorials can be accessed at http://www.nlm.nih.gov/medlineplus/tutorial.html . A collaborative relationship between educators and librarians apply at this level. A librarian collaborating with an adult educator would address issues typically found within an information literacy curriculum. Issues such as validity, reliability, and quality of information, particularly online health information, are essential to address.

37 Information searching and retrieval skills as well as AMA or MLANET recommended health sites are crucial. Information literacy will foster a patient or consumers ability to ask the right questions in seeking health information and serve as a guide for dealing with questions and the ability to find answers. The process of information literacy can be applied at any level, including a low literacy level. Integrating literacy, health literacy and information literacy will serve individuals favorably and enable them to obtain sound information and communicate with health care practitioners more effectively, potentially making a difference in overall well-being. Beyond a functional literacy level, health literacy involves more than reading and obtaining information. It involves enablement, or individual empowerment that results in the capacity to fully communicate with ones physician and health care practitioners, making sound, responsible, patient-centered decisions. Such decisions require the capacity to navigate an abundance of information, make decisions based on that information, and live peaceably with the consequences of that decision. This skill, the ability to locate and manage an abundance of information on a topic or illness, and make decisions based on that information does not occur by chance. It involves learning principles of information literacy: Recognizing a need for information Locating appropriate information Evaluating and selecting information Synthesizing that information objectively Using the information effectively to address the issue

38 These principles have been defined by ACRL Standards (2000) for use in the academic setting, or by the AASL Standards within the K-12 setting. When related to health literacy, the selection and evaluation of information will involve more sophisticated skills, or additional skills, than general information literacy, as discussed previously. The ACRL has developed information literacy standards for science and technology. These standards reflect the difference between requirements for general information literacy and the skills needed to be information literate in science. When applied within an educational setting a librarian would work collaboratively with the professor or faculty member teaching related coursework. Outside of the education setting, the IOM committee (2004) is investigating several approaches or interventions. This committee focuses on program strategies around six categories: Provision of Simplified/More Attractive Written Materials Technology Based Communication Techniques Personal Communication and Education Combined Approaches Tailored Approaches Partnerships

Simplified, Written Materials

Various studies have been conducted on the effect of simplified, written materials (Davis et al, 1998c; Hussey, 1994; Jacobson et al, 1999; Powell et al, 2000). Settings for the studies ranged from university clinics, a VA outpatient clinic, a geriatric outpatient clinic, and an ambulatory clinic at an urban hospital (IOM, 2004). In general, no

39 significant difference was demonstrated between the control and experimental groups. This indicates that simplification of language does not increase understanding among those with low health literacy. Without examining the instruments employed in these studies, one can not identify principal issues that interfered with better understanding. There are many possible explanations for the lack of increased comprehension. Simplifying language, either written or spoken, will not result in improved reading scores if the medical concept is not possessed. If cognitive capacity does not meet the necessary level of conceptualization, the level of simplicity or sophistication of language is irrelevant. Possibly relating to capacity, Michielutte (1992) conducted a randomized trial using both a simplified reading brochure and an illustrated brochure. No significant difference in reading comprehension occurred with the written brochure. After analysis, it was found that the illustrated brochure was demonstrated to have been better comprehended than the written. Whether the comprehension level reached a significant level was not discussed. The use of pictograms or illustrations to convey medical information or pharmaceutical direction has been recently debated. Some issues of concern include the lack of FDA regulation of pictograms, whether a pictogram accurately conveys intended information, and interpretation that may vary by an individuals background and experiences (Rother et al., 2002). Pictograms are believed to be beneficial for communicating information to consumers who speak English as a second language and to those with low reading skills (USP, 2003). However, those with limited health literacy may have difficulty in correctly interpreting pictograms. Pfizer is conducting research to determine if pictograms aid patients recall of medication knowledge.

40 Culture has been identified as a primary influence in health behavior. If reading material conflicts with ones cultural roots, regardless of cognitive capacity, the subject is likely to avoid identifying answers that would conflict with what has been previously taught and accepted. The studies conducted using simplified language underscore the value and probable necessity of educational intervention. It would be interesting to conduct a similar study employing a pre-test/post-test experimental design with educational and cultural intervention. Intelligence testing and results have been questioned for decades on the basis of cultural bias. Health literacy does not exclude cultural antecedents either.

Technology-Based Intervention Techniques

Technology-based efforts to increase health literacy include the use of videos, CD ROMs, interactive multimedia, photography, audiovisual documentation and telephone based intervention (TDI). Other technology-based methods including video conferencing, streaming video, and chat may also be viable means of intervention, yet no studies have been conducted with the use of these technologies. The findings of various studies on the effect of technology use in increasing comprehension of health information were presented (IOM, 2004). There was no definitive, unequivocal, result on the effect of such intervention techniques. Some studies demonstrated positive outcomes such as increased knowledge or self-care ability, while others showed no change in knowledge. No details such as sample size, or instruments employed to assess the outcomes were offered. Such details are crucial in determining the validity and value of the studies. Kim et al. (2001) found no interaction between the technology-based intervention and the literacy level of individuals in the study. Simply transforming text based information of

41 disease-specific information to visually oriented media, while linked to patient satisfaction, showed no increase in knowledge among patients with low health literacy. This finding may suggest that the subjects perception of their knowledge increased, resulting in increased satisfaction, while no change in knowledge actually occurred. Were this notion true, the use of visual media may heighten morale, but result in an overestimation of health literacy and abilities associated with it. The Foundation for Informed Medical Decision Making (FIMDM) distributes decision-support materials to support the role patients play in selecting treatments for their medical conditions. They describe their mission as: Providing patients with various perspectives when they face decisions about medical decisions. Improving the quality of collaborative decisions. Fostering research to determine how to best help patients make tough health care decisions. The FIMDM has produced educational videos to foster patient decision-making as part of shared-decision making programs in clinics, hospitals, managed care settings and other settings (Kasper, 1992). Based on studies looking at what patient preferences are most likely to affect their choice, these videos include patient descriptions of treatment choices and the consequences of the treatment choice. A systematic review of patient choices indicated that these videos had increased knowledge, reduced decisional conflict, and motivated patients to become involved in decision making without heightening anxiety (OConner et al., 1999). These informational videos fostered shared decision-making. Whatever merit these videos have, the subjects in these studies did not have limited

42 health literacy, and no similar studies have been conducted with limited health literate subjects. Telephone delivered interventions (TDIs) in which health-related counseling is offered have been shown to be effective, but underused, particularly by diverse populations. TDIs vary by the sort of service provider, variables include whether the talk is scripted and how it varies according to the characteristics and responses of the individual (IOM, 2002c). The effect has not been evaluated among limited health literacy individuals.

Personal Communication and Education

Personal Communication and Education approaches include classes or health education sessions, communication techniques used by health practitioners, and patient navigator systems. Three studies cited by the IOM (2004) include the Paasche-Orlow educational intervention (2003), Rothman et al. educational intervention (2003), and Schillingers physician assessed patient recall and comprehension (2003b). The PaascheOrlow study found that all groups of asthma patients, health literate and limited health literate, benefited from one-on-one instruction regarding medications and inhaler techniques. The S-TOFHLA identified those with low health literacy, yet no difference in understanding after intervention was found between those identified with health literacy and those with low health literacy. Rothman et al. (2003) studied a group of patients with diabetes. The REALM test identified those with low health literacy. It was found that among those in the control group (receiving no intervention), those who were health literate were more likely to achieve glucose control after six months than those with low health literacy. Yet, among

43 those in the experimental group (receiving intervention) there was no difference in glucose control improvement between those with health literacy and low health literacy. These results indicate that educational intervention is successful at mitigating adverse effects of low health literacy. Schillinger (2003b) looked at the physicians use of an interactive communication strategy where the physician assessed patient recall and comprehension for individuals with low health literacy. This interactive strategy was found to be effective in gaining glycemic control, though higher health literacy (measured by the S-TOFHLA) was also associated with better glycemic control. Programs using patient health navigators have shown promise in mitigating the adverse effects of low health literacy in navigating the health system. Patient health navigators use one-on-one support to assist patients with health education, interpretation of health information, and assistance in obtaining access to health services. The patient health navigator programs are usually supported by hospitals or health care systems. Historically, they were designed for patients with cancer and the finding that poor people face specific barriers when seeking diagnosis and treatment, resulting in failure to seek care. Patient navigator programs seek to alleviate financial barriers, communication and information barriers, and medical system barriers (such as missed appointments and lost results), and fear and emotional barriers The navigator acts as the patients advocate and assists with such practical matters as help with paperwork for financial support, childcare, and transportation problems. A navigator may also translate medical terms into lay language, provide education about the disease and its treatment, listen to

44 patient concerns, and assist the patient in communicating with the physician and asking questions of the physician (Health Care Association of New York, 2002). Follow-up after the first two years of the program showed that 87.5 percent of patients with navigators completed recommended procedures, while 56.6 percent completed procedures without navigators (control group). The Patient Navigator Program has been established at several other sites and is now supported by the Washington Cancer Institute in Washington, D.C.

Combined Approaches
Other approaches to health literacy use a combined approach. One randomized, controlled study used a combined approach (Davis et al., 1998a). This investigation aimed to increase mammography use in ambulatory and eye clinics. The intervention approach combined a personal recommendation from one of the investigators, a simplified brochure, and a 12 minute education program using video. Results showed that this combined approach intervention was the only significant predictor of increased mammography use at six months after controlling for literacy and baseline knowledge. This study also controlled for race, but having discussed that specific behaviors characterize populations, rather than race, it seems that the validity of this control was questionable at the start. Regardless of the issue of controlling for race, the combined approach intervention in this study increased mammography use. Other studies have reported that combined approach intervention effectively increases the rate of healthy behaviors. Various programs have been established using a combined approach for health literacy. These programs usually use written materials, patient educators, communication techniques, and follow-up telephone calls. The University of North Carolina at Chapel Hill has developed several chronic disease

45 management programs that are designed to overcome limited literacy barriers to health care. Teaching techniques include one-to-one interaction with the patient during visits and feature: A teach-back method where the patient teaches content back to the educator. Discussion involving practical skills rather than complex physiology. Written educational materials designed for low literacy users. Follow up phone calls and educator visits to reinforce education when the patient returns to the clinic. A collaborative learning environment that emphasizes sensitivity to the role of literacy in communicating with patients.

Tailored Approaches
Tailored approaches to intervention emphasize how culture influences health information and messages. This approach considers the experiential identity or background and experiences of the individual when communicating information regarding health care or, in particular, informed consent. Research on patient perspectives on informed consent has offered insights how patients view the notion of informed consent. Ratzan (2001) emphasizes that the challenge in designing effective health communication is to determine optimal context, channels, and content which are grounded in peoples everyday lives. Or, in academic terms, communication rooted in the sociopolitical and environmental structures of the community. Project Toolbox is one of the approaches that bases program design on the viewpoints and perspective of the intended population. This project, funded by the State

46 of Florida in 1999, aimed to develop culturally, linguistically, and literacy relevant educational tools to reach the medically underserved with breast, cervical, and prostate cancer. Each toolbox contained a videotape, flipchart, educational brochures, and a facilitator guide. Reading materials were written at a third to fourth grade level and concepts were communicated using visuals, testimonials, and pictures that reflected the daily lives of the audience. Various other toolbox projects have been established around the country. A librarian with expertise in health literacy or consumer health literacy would have the skills required to collect and build multimedia toolbox collections for various populations. The National Network of Libraries of Medicine (NNLM) offers many resources, materials, online tutorials to support health literacy programs and individual needs. The Information Rx Project also offers literacy education and support to physicians in prescribing health care. These resources can be accessed at http://nnlm.gov/hip/ or the National Network of Libraries of Medicine. The American Association of Colleges of Pharmacy specifically endorses the teaching and acquisition of information literacy and health literacy. Competencies recommended parallel ACRL information literacy standards and include formulation of relevant questions, skills of inquiry, critical analysis, evaluation and organization of information. Skill in usage of disciplinary literature and the ability to integrate new information into their existing base are recommended abilities for incorporation into the degree program for Pharmacology. An awareness of ones knowledge, attitudes and skills that will improve ones knowledge has also been stated as central to the goals of the Association (Kaplan & Whelan, 2002).

47 The Massachusetts College of Pharmacy and Health Science has successfully implemented a discipline specific information literacy program. Evidence-based medicine and problem based learning have been supported by national trends within health science education. The strategies employed in evidence-based medicine parallel the strategies or standards of information literacy; as such the program has gained support and successfully grown. Other innovative programs have been developed. One noteworthy program, introduced and developed by Claudette Dalton, M.D., includes integrating health literacy instruction and with the medical school curriculum at the University of Virginia Medical School. A brief account of how Dalton came to the decision to offer health literacy is available at the AMA Foundation: http://www.amaassn.org/ama/pub/category/15386.html. After introducing the program and reviewing the outcome statistics, the program found widespread support and now includes training throughout the four years of medical school. Guidelines for building a health literacy curriculum are offered at the UVA Health System site: http://www.healthsystem.virginia.edu/internet/som-hlc/Curriculum.cfm. The National Network of Libraries of Medicine (NNLM) also offers an online manual with guidelines for developing a program in consumer health information which the NNLM associates with health literacy.

Consumer Health Information: Medical Informatics or Public Health?

Consumer health information (CHI) is directly associated with health literacy. Whereas health literacy reports and raises awareness of health communication problems by assessing the language and cultural problems of individuals who need to obtain health

48 information, consumer health information focuses on what kinds of materials and training will best foster understanding of health information, and the ability to navigate the health system. Eysenbach (2000) defines CHI as the branch of medical infomatics that analyzes consumers needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers preferences into medical information systems. Ferguson (2001) defines CHI as the study, development, and implementation of computer and telecommunications applications and interfaces designed to be used by consumers. Neither Eysenbachs definition nor Fergusons is complete, yet both emphasize meeting the consumers personal information needs. Houston et al. (2001) distinguishes CHI from medical informatics. First, because of its frequent patient-centered approach, consumer health informatics may have an even stronger overlap with public health. In addition, the design of consumer health informatics applications require more frequent input from patients and consumers. Definitions aside, CHI centers on patient needs, learning what barriers impede health care access, and developing strategies and programs to address those needs. This area of inquiry has only recently emerged and is the result of an ideological shift among health professionals and those they treat. The authoritarian nature of the medical profession has given way to a more liberal attitude, recognizing that patients or consumers have a right to participate in their healthcare and treatment. Patients or laypersons are no longer passive recipients of decisions independently made by their

49 physicians; many are now sharing power for this decision making by researching ailments, treatments, pharmaceuticals, and alternative therapies. It is this partnership between health care professionals, patients and laypersons that consumer medical informatics addresses. When and where one can find accurate, relevant health information is the subject of health information literacy. How to deliver this information, what technologies may be utilized optimally, how one can ensure privacy and provide consumers with a means to check the authenticity of a source, particularly an electronic source, is the subject of consumer medical informatics. Here we have two sides of the same coin: what are the skills needed to understand health information, locate it, and evaluate the information, and what technologies can optimally deliver health information? Consumers need the skills, the consumer medical informatician needs to know the users and the technologies that will offer information commensurate with those skills and effectively engage them.

50

References
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