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Dr.
Rima E. Rudd’s Dr. A.M. House Lecture on Literacy The Dr. A.M. House Lecture on Literacy I am honored to offer the Dr. A.M. House Lecture on Literacy. Dr. House, when he became Lieutenant Governor of Newfoundland and Labrador, highlighted the importance of literacy, noting:
Literacy and a good economy are tied together in this new century. The demands of our technological and computer age are bringing changes to the farm and to the factory, to all types of activities and work, and to the rural as well as the urban lifestyle. Literacy can indeed contribute to a good life. We celebrate the sheer pleasure of reading and writing for its own sake. Reading a poem, keeping a private journal, sharing a story across the divide of time and space are intimate moments of great value and joy. So too is that sense of full participation in our society – the freedom we can achieve when we are not dependent on someone else’s interpretation of events and attribution of meaning. And finally, we come to the link between literacy and a healthy life. This is the topic for this evening’s discussion. My interpretation of Dr. House’s statement included the personal delights derived from literacy as well as several examples of Functional Literacy. Functional literacy will be my focus as well – the ability of people to use the written word to accomplish tasks needed for full participation in our society and for insuring their rights within the society. Furthermore, I will speak about functional health literacy – the application and consideration of literacy skills for health related actions. I have derived the themes of my talk from some of the accomplishments and work of Dr. House. Health was his primary concern as a practicing neurologist and education as an academic. He was an innovator and leader in the development of the Telemedicine Program. He is an institution builder in his contribution to the founding of the Memorial University Medical School and is currently a policy leader as the Lieutenant-Governor of Newfoundland and Labrador. With reference to these accomplishments, I divide my talk into four themes: Functional literacy, as assessed in the early 1990s by the Adult Literacy Surveys in the United States, Canada, and other industrialized nations, measured people’s ability to apply reading skills to everyday tasks involving prose, documents, and numbers. Skills were measured against commonly used materials in the society. Though not specifically included, health related activities are part of adults’ daily experiences. In medical care settings, patients are expected to fill out forms and family history, sign consent forms, and read and follow directions. In this age of chronic disease, patients are expected to take medicines, monitor their disease at home, and make critical decisions. Adults are expected to be informed consumers – and foods and chemicals are some of the materials they buy. Adults are expected to understand and meet the demands of bureaucracies and institutions to access programs and services. In the community, adults are encouraged to be aware of and act on health-related news and announcements. Workers must employ safeguard against hazardous materials and procedures. We ask people to collaborate with us and take action to protect our social and physical environment. These are all functional literacy tasks. However, functional literacy must be understood as a dynamic characteristic that ebbs and flows in response to other factors. These include the materials in use, the communication skills of those delivering the message, changes in life experience, education, age, and the presence of co-morbid conditions such as depression, mental illness, and functional status. Functional literacy also has multiple antecedents and/or confounders. They include not only such obvious factors as educational attainment, but also such factors as dyslexia, mental illness, and/or social deprivation. Furthermore, we must consider skills related to literacy. 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]. Reading is part of a complex phenomenon. As people develop literacy, they develop a number of other skills, including reading for meaning (vs. decoding of individual words), ability to describe with accuracy, ability to give and understand instructions without relying on face-to-face interaction and shared context, a large working vocabulary, and an understanding of abstract concepts. All of these issues are of critical importance to this new
idea of health literacy. Let’s look briefly at the array of health related tasks facing adults. These tasks include those listed above. People must be aware of issues and are expected to take action at home, at work, in the community, and in the voting booth. My current research in health literacy is focused in a broad area I call navigation – with attention to the skills needed to protect one’s health and to make one’s way to and though the public health and medical systems. My research considers the barriers encountered by people with low or limited literacy skills. Our studies include:
Our work expands the current emphasis on health literacy. We move beyond the doctor patient encounter and examine the broader scope of activities people engage in as they maintain their health. For example, parents with a child who has asthma must understand chronicity, manage fairly complicated medications, and engage in regular monitoring of lung capacity. They must also reduce asthma triggers in their home. However, if they live in a multiple family dwelling, they must address issues in the apartment building as well. This requires information as well as advocacy skills. Landlords need to take action related to mold, mildew, and roaches. Tenants associations often have to push for such action. Schools and other indoor areas should concern these parents as should bus and car fumes and other community pollutants. Among our findings are some answers to the question: how do words get in the way? People with limited literacy skills often lose their way, run out of words, make errors, lose face, limit participation, lose entitlements, and lose rights. My work in health literacy began with a review of the literature in medicine and in public health. I’d like to share some of those initial findings with you and offer an overview of this emerging field of study people are now calling health literacy. Epidemiological studies have long offered insight into the relationship between health and income and health and education. Life expectancy is related to family income. Health status increases with each higher level of family income. Research studies offer evidence that low-birth weight and infant mortality are more common among the children of less educated mothers than among children of more educated mothers. Death rates for chronic diseases, communicable diseases, and injuries are all inversely related to education. Health damaging activities such as smoking, sedentary lifestyle, and heavy alcohol use are associated with lower income and lower education. Dental visits, screening, and avoidable hospitalization are associated with higher income and higher levels of education [Health Canada, 1996; Pamuk, et al, 1998]. Of course, most of these studies in Canada and in the United States use education and/or income as a marker of socioeconomic status. Until recently few inquiries had looked more closely at factors associated with education such as literacy. Health literacy, now squarely on the health agenda in Canada and in the United States, really emerged during the decade of the 1990s. Almost all of the early medical and public health publications focused on literacy were comprised of findings from studies examining the reading level of print materials developed for patient education and for procedures and processes in health care settings [Rudd, 2000]. Overall, researchers firmly established that the literacy demands of health materials exceeded the reading abilities of the average adult. Unique among the early health literature were an Ontario Public Health Association Report discussed in the Health Promotion Journal [Perrin 1989] and a review article on health literacy in the 1989 Annual Review of Public Health highlighting links between literacy and health outcomes. In the review article, Gross and Auffrey [1989] presented a body of evidence based on research conducted in developing countries that the health of children was related to mothers’ literacy. Health research studies and the subsequent findings of the Adult Literacy Surveys in the early and mid 1990s spurred interest in the links between literacy and health outcomes. Researchers interested in health literacy links were assisted by the development and use of the health specific Rapid Estimate of Adult Literacy Measure (REALM) [Davis, et al 1991] and of the Test of Functional Health Literacy in Adults (TOFHLA) [Parker, et al 1995]. Using these tools, 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 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 that had been noted in the publications of the 1970s and 1980s. In addition, with these tools at hand, researchers were now able 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 on various health related measures between 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, 1992]. They are less likely to make use of screening [Davis et al, 1998, 2001] 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]. Additional studies demonstrated an association between low literacy and lack of knowledge about their disease and treatment protocols and low adherence to treatment regimens [Rudd, et al, 2000; a selection of studies are noted in endnotes]. Finally, at the end of the decade, the Journal of the American Medical Association 1999 published a white paper by the AMA Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs [1999]. This publication reflected medicine’s growing recognition of literacy and its role in health. An increasing number of national and international meetings on health literacy served to highlight a growing recognition of the importance of literacy to those in the health fields. However, this concept is still new; research is growing but
still limited; and many of our colleagues have not yet attended to these issues.
This is a good time to introduce the third theme - that of innovation. A few studies now indicate that limited literacy is linked to untoward health outcomes. We know that almost half of all Canadians and US adults do not have the literacy skills needed to fully function in today’s society. We must all work together to improve literacy skills. However, can we really attribute poor health outcomes to people’s limited literacy skills alone? Are there other issues that must be attended to? People’s ability to understand health and medical issues and directions are related to the clarity of the communication. Professional jargon and scientific language may inhibit health literacy skill development and, alternatively, lay language and a change in the presentation of information may lead to increased health literacy. Consideration need be given to the verbal and written communication skills of medical and public health practitioners. Reading, writing, and presentation skills are finely tuned in institutions of higher learning but are geared for dialogue and discussion among members of highly educated and often specialized audiences. Plain language communication may be considered an innovation; it is a new professional skill. Thus, we must expand our focus and increase literacy for the population in general and, at the same time, increase communication skills of professionals. As we build on and expand the foundation work in health literacy, we need to expand our research agenda and the scope of our research. Public health and medical communications routinely include written as well as audio and video materials, messages on radio and television, verbal presentation for information, diagnosis, and consent. An expanded examination of health related materials should include information presented through tapes, videos, compact discs, and on the web. We need to examine the pathways from literacy to health outcomes more closely. Our studies need to include attention to literacy related verbal and auditory skills, working vocabulary, background knowledge, and abstract concepts. At the same time we must meet the challenge of disentangling literacy from a variety of related variables. Finally, we note that most health literacy work is very focused just now on activities that take place within health care. We need to be more innovative and expand the scope of our research. For example, in the United States, the relationship between literacy and health promotion, health protection, and disease prevention activities has not been fully explored. Scant attention has been paid to literacy and its relation to the purchase and use of food and home products, to access for entitlement programs, for action related to occupational health and safety, for decisions and actions related to the care of children and/or elders, or for participation in community based health action groups. Few studies have examined health literacy links from the perspective of social justice and human rights. We need to consider, across disciplines, leverage points
for change and provide persuasive documentation to support efficacious policy.
This brings us to the policy theme. We know that research findings build persuasive arguments. We know that our communication efforts have been limited but we have not yet explored approaches beyond the written word and have neither implemented nor evaluated the many innovative technologies now available to us. . As noted above, we have not yet rigorously studied the pathways linking literacy and schooling skills to health outcomes. Costs associated with incorrect use of medications, with the failure to comply with medical directions, and with safety risks in workplaces – for example, will support arguments in the policy arena. Cost benefit analysis will also support policy change and for the widespread adoption of recommended action. We certainly need to monitor and measure the effects of newly implemented policy such as plain language regulations and for actions such as literacy requirements for welfare, recently enacted in Ontario. We will want to follow court actions for suits related to the onerous demands of materials related to health access and decision making. In addition, policy change requires a strong collaborative base. To start, those of us in public health and medicine need to forge strong partnerships with colleagues in education. Skill building activities related to language and vocabulary acquisition, reading, writing, numeracy, oral comprehension, dialogue and discussion – have long been the focus of adult education professionals. Their expertise can support and enhance health literacy goals. As we work with our colleagues we must not be satisfied to focus on skill building related to forms, directions, and information packets. Becoming aware of new findings, gathering information, participating in community or work related action groups call for a broader skill base. Health related curricula incorporating attention to research, discussion, analysis, decision making, and action will enrich adult learning experiences and will support health literacy goals. These activities also require efficacy. Participatory pedagogy can enhance empowerment and can change the structure and tone of the relationship between teacher and learner in the classroom, between the doctor and patient in the medical office, and between the community and the lawmaker in the social and policy arena. We must bring other colleagues to the table as well – those focused on labor, the environment, and the economy, for example. As we continue to research the pathways between limited literacy skills and poor health outcomes, we must also work to increase awareness, to emphasize the importance of improved literacy skills, and to eliminate disparities and support social justice. In conclusion, we can find inspiration and direction from the work of Dr. House. We need, like him, to combine practice with academia. We must explore new communication frontiers. We need to build institutional support. We must enter the policy arena. We must contribute to these efforts through our practice, rigorous research, and sound policy. I look forward to our work together over these next two days, exploring innovative approaches to enhance health literacy, adding to a rigorous research agenda, and developing policy change strategies. I am eager to share and to learn. Thank you for the invitation and for your time and
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