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Health Literacy Research Contributions to the National Action Plan

THE ROLE OF HEALTH LITERACY RESEARCH IN THE NATIONAL ACTION PLAN

Terry C. Davis, Ph.D.

Louisiana State University Health Sciences Center


Goal 6 of the National Action Plan calls for the expansion of the size and scope of health literacy research and evaluation. Nineteen strategies are provided for research teams, program evaluators and funders. This goal raises several issues for consideration:

  • How do we translate effective research findings into practice? Will they be implemented reliably? Are they sustainable?

  • Do we understand why low literacy is related to worse health outcomes—is it more than knowledge, skills, capacity? What else is literacy a marker for?

  • What is the economic impact of inadequate health literacy? What is the cost of low health literacy?

  • What are the research opportunities and challenges?

  • What is the role of health literacy research in health care reform? What are critical questions that feed into policy?

It is time to broaden our research focus to include strategies to translate proven interventions into action. Attention must be paid to the practical details, the “how-tos” of successful implementation and sustainability



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7 Health Literacy Research Contributions to the National Action Plan THE ROLE OF HEALTH LITERACY RESEARCH IN THE NATIONAL ACTION PLAN terry C. Davis, Ph.D. Louisiana State University Health Sciences Center Goal 6 of the National Action Plan calls for the expansion of the size and scope of health literacy research and evaluation. Nineteen strategies are provided for research teams, program evaluators and funders. This goal raises several issues for consideration: • How do we translate effective research findings into practice? Will they be implemented reliably? Are they sustainable? • Do we understand why low literacy is related to worse health outcomes—is it more than knowledge, skills, capacity? What else is literacy a marker for? • What is the economic impact of inadequate health literacy? What is the cost of low health literacy? • What are the research opportunities and challenges? • What is the role of health literacy research in health care reform? What are critical questions that feed into policy? It is time to broaden our research focus to include strategies to trans­ late proven interventions into action. Attention must be paid to the practi­ cal details, the “how­tos” of successful implementation and sustainability 

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0 InnovAtIonS In HeALtH LIteRACY ReSeARCH in real­world settings in different communities. Knowing the cost of the problem may help drive policy. Additionally, there is a need to drill down on issues that are not clear. For example, why is low literacy related to worse health outcomes? The impact of poverty, social disadvantage, and poor quality of care on outcomes has been documented, but what else is going on? What is health literacy a marker for? It is likely a key, but not the only key. In addition, several crosscutting research themes offer exciting pos ­ sibilities. These include health care redesign, health insurance reform, improving navigation and community­based participatory research, removing health literacy barriers to clinical trials, addressing disparities, health literacy measurement in national and other surveys, and pre K through 12th and adult education and health education. Davis said that one of her long­standing concerns involves the pervasive national prob­ lems with K­12 education. Currently it is estimated that 30 to 40 percent of sixth graders will not graduate from high school. The markers are known—school attendance, behavior, scores, and grades. These children need more than better health literacy. Evidence is emerging that student achievement improves if there are high expectations, impassioned teach­ ing, provision of better reading and math skill building, more practice, and a lot of support. Attention to this challenging problem will also help address the health literacy of future adults and families. Crosscutting research themes are interesting opportunities, but are crosscutting agendas possible? And if so, who will be the responsible agency? The bureaucracy of research makes collaborations difficult. Fund­ ing is offered largely by disease, and researchers most commonly function and publish in silos. The good news is that health literacy research is evolving. The field has finally moved beyond assessing readability and individual literacy. Self­management interventions have moved beyond knowledge transfer to include patient behavior, support, and empowerment. Areas where work is still needed include outcomes research and identifying methods to make health numeracy more user­friendly. For example, in outcomes research focusing on preventive services utilization, patients’ comple­ tion of screening tests are most commonly self­reported and usually not tracked for more than 1 year. More longitudinal studies are needed. Another promising area is numeracy. Because of the work of Dr. Russ Rothman and others,1 it is now clear that numeracy is a pervasive prob­ lem even among younger adults with adequate reading skills. Ameri ­ 1 Dr. Russell Rothman and colleagues (2006) conducted a study that showed that those with low literacy and low numeracy skills have significant difficulties understanding food labels.

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 ContRIBUtIonS to tHe nAtIonAL ACtIon PLAn can adults do not perform well on math word problems; proficiency in this type of math skill is needed to understand and use food and drug labels and dose medicine correctly. What can be done to make health care math more understandable and usable? With National Institutes of Health (NIH) and Agency for Healthcare Research and Quality (AHRQ) support, cutting edge research is being conducted. The Institute of Medicine (IOM), the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administra­ tion (HRSA), the Joint Commission, and the United States Pharmacopeia (USP) are increasing attention on this issue, and new initiatives are being developed. Many health care providers—in state health departments and public and private health care systems—now understand why health literacy is important, and they are eager to initiate programs. They are eager to initiate programs, yet they lack clear understanding on how to practically implement them. The new toolkits will help, but some prac­ tices need more than a toolkit. They need guidance on implementation—a navigator or a coach. Putting health literacy research into practice has challenges. The Health Literacy Universal Precautions Toolkit designed to help health care practitioners learn how to communicate more effectively with their patients has 20 very practical tools. But can they be reliably implemented and sustained? Darren DeWalt, a coauthor of the toolkit, tested it in eight practices and found that even five tools were too many. Another example of the challenges of implementing and sustaining research findings and guidelines in real­world practices can be found in research (funded by the Missouri Foundation for Health and the Ameri­ can College of Physicians Foundation) conducted by Dr. Michael Wolf on implementation of a diabetes self­management intervention,. In this ongoing study of nine Federally Qualified Health Centers (FWHCs) in Missouri, three clinics implemented their standard diabetes education and counseling. Three other clinics implemented a patient­centered health literacy intervention using a self­management guide book, action plan counseling, and telephone follow­up by a trained “diabetes champion” at the clinic. The final three clinics implemented the same interventions from a “diabetes champion” at Northwestern University in Chicago who provided the education, counseling, and follow­up by telephone. The preliminary results are telling. In the Northwestern­supported group, 84 percent of patients received the health literacy intervention as planned. In the three clinics that implemented the health literacy inter­ vention on­site, rates of patients’ education, counseling and follow­up varied: 4 percent in one clinic, 38 percent in a second clinic, and 94 percent in the third clinic. The low rate occurred because the nurse in charge did not want to do it and was not personally incentivized to do it. The high

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH rate occurred in a small rural clinic, with a nurse who was committed and impassioned by the idea and saw it as part of her mission, although no financial incentive or extra time was offered. This is a prime example of why research is needed on how to implement more consistently. Will health literacy changes last and evolve without the presence of an impas ­ sioned advocate? The final question this research evokes is, can health care innovations that are found to work in study clinics also work in non­study clinics? Davis said her research and speaking engagements have taught her that health literacy is receiving attention in state health departments, local health care systems, and community clinics. Impassioned advocates at many of these sites have developed and implemented effective approaches, but they never get written up and published and, consequently, are not known. She has also learned that there are hidden challenges in working with rural and distant community clinics. Her experience, she said, taught her that • Transition from research in academic university hospital settings to community participatory research requires a significant amount of time. Researchers must be flexible. • Federally qualified health centers value service—they are not familiar with research. • Usual care varies from clinic to clinic. • Clinic implementation of research protocols can vary widely (an impassioned champion is needed). • Physician turnover can be high. • It is difficult finding qualified research assistants in rural areas. • Off­site investigators must account for “research burnout” of clinic staff and research assistants. • A short patient education video (2 min) may still not work in inter­ ventions. (A computer and private space is needed to show video and someone is needed to set it up. Additionally, some patients say they do not have time to view it.) There are also measurement questions to consider, said Davis. For example, are health literacy assessments actually measuring literacy? Another important question is to ask whether patients clearly under­ stand the questions that are developed from the researcher’s perspective. Recently, when training research assistants, Davis played the role of a patient and answered questions read to her. When actually answering the questions, it became clear, she said, that she was not sure how to answer several of them—even those she had written. The differences offered in Likert choices sometimes seemed ridiculous and, after about 20 minutes,

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 ContRIBUtIonS to tHe nAtIonAL ACtIon PLAn she lost interest and motivation to finish. Patients are likely to do the same. With long assessments patients may wear out and not carefully consider their answers. Other measurement issues to consider are the problems of tracking population health literacy. Is it possible and will comprehensive assessments stay current? Health literacy is dynamic. It keeps evolv­ ing as tasks and demands increase. Computer literacy, for example, will be added to the 2016 NAALS (National Adult Assessment of Literacy). Should health literacy include ability to use the Web to obtain, process, and understand health information and services? Davis said the most central questions are as follows: Does the goal of improving health literacy amount to improving clinical and public health communication and care systems? Will more precise data collection and comprehensive assessment help change the way health care is communi­ cated and delivered? Is health literacy context specific? Life is dynamic—health care and health literacy are evolving. The number of prescription and over­the­counter drugs is growing rapidly and will continue to do so. Science and technology are moving fast. Con ­ sumers are increasingly responsible for their health care. Health literacy research must keep up, Davis concluded. NATIONAL ACTION PLAN TO IMPROVE HEALTH LITERACY: GOAL 6, RESEARCH Rima Rudd, Sc.D. Harvard School of Public Health Goal 6—Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy Of the seven goals detailed in the national Action Plan to Improve Health Literacy, Goal 6 uniquely focuses on research and provides 19 agenda items and strategies for a research agenda that will contribute to our knowledge base and illuminate pathways to improved health literacy and better health. The National Action Plan responds to and builds on the recommendations of the IOM report, Health Literacy, A Prescription to end Confusion (IOM, 2004). The IOM committee that pre­ pared that report noted that early research in what was then a nascent field of inquiry did, by 2003, establish links between literacy and health outcomes. However, the IOM report also highlighted several research weaknesses that needed attention and gaps that ought to be bridged as the field develops. The identified limitations in the early research in the health literacy field include a narrow focus on one of five literacy skills,

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH on the clinical exchange, and on the skills of patients. The NAP provides a research agenda that considers these issues and offers recommendations that address a wider array of literacy skills and health activities and that calls for increased attention to intervention research. Early health literacy studies focused on the reading skills of patients. Yet, educators speak of five related literacy skills: reading, writing, speak­ ing, listening, and math skills (numeracy). A good deal of information provided to the public and to patients is indeed in written format on the printed page and on Internet websites. At the same time, the spoken word delivered through the radio and television and in the exchanges between clinicians and their patients or clients are of critical importance to public health and to health care. Furthermore, as Apter and colleagues point out (2008), math skills and numeric concepts are embedded in and needed for many health related activities. A broader understanding of the multiple components of literacy and most especially of speaking and listening skills will allow researchers to explore the exchanges so critical to public health and to clinical encounters. In addition, attention to basic math skills and numeric concepts such as normal or risk will enrich our understanding of barriers to action and to decision making. Most of the studies in health literacy have focused on activities within health care settings. Many early studies focused on samples of patients in emergency departments of hospitals, and other studies focused on patients in consultations with clinicians for chronic disease manage­ ment. These studies are of ongoing importance and have been central to the ability of researchers to link literacy skills and health outcomes. The NAP suggests that researchers now broaden the scope of inquiry to explore the myriad settings—home, work, community—where people take health­related actions. It is within these settings that people encoun ­ ter health related products, messages, materials and tools, and where they daily make critical decisions. Expanding the scope and moving beyond, but not ignoring, the clinical encounter, brings health literacy into public health and public policy discourse around community health. Such actions may expand the research group as well and serve to bring in colleagues from education, health policy, environmental health, and occupational health studies. At the same time, the narrow attention that health literacy researchers have given to the skills and actions of individuals needs to be expanded. Individuals function in multiple roles—as caregivers, as patients, as con ­ sumers, and as community members. Zarcadoolas (2005), for example, has long called for attention to health literacy in terms of civic engagement. Health literacy, in this broader arena includes, for example, community access to information about environmental degradation and the ability of groups and communities to make decisions and take action.

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 ContRIBUtIonS to tHe nAtIonAL ACtIon PLAn The 2004 IOM report also noted that literacy does not take place in a vacuum. If reading skills are to be tested, the demands of the text must be assessed as well. The NAP calls for research that illuminates the barriers that people face as they encounter unfamiliar vocabulary, unusual processes, complex facilities, and cumbersome forms and legal documents. Some of these impediments to action have been thoroughly studied. For example, well over 1,000 studies attest to the poor quality of written health information—whether on paper or on the computer screen. We know that increasing access to information means improving the rigor of our materials development and piloting processes. Multiple guidebooks, such as the Doak, Doak, and Root classic (2007), have long been available to provide insight into best practices and processes. Other impediments have not yet been as carefully documented or studied. The call to action offers a needed emphasis on the importance of research into system­level barriers and facilitators. Here too, some work has set the stage for research studies. Rudd developed the notion of a health literacy environment and Rudd and Anderson (2007) provided an assessment process and tool. Building on this work, DeWalt and col­ leagues (2010) have developed and piloted a tool for identifying system level barriers in medical practice. This is now being widely distributed and broadly tested. Furthermore, while the multiple measures of the health literacy skills of patients have been developed, tested, and applied, little has been done to test the communication skills of public health or health care professionals in health literacy studies. Here too, a firm foundation for such research is well established in the work of health communication researchers with their attention to provider–patient interaction as well as to the value and efficacy of question asking and the teach back method. Consequently, Harper and colleagues (2007), for example, reported on the integration of health literacy into medical curricula, drawing from the research findings of scholars such as Roter (2004) and Schillinger and colleagues (2004). However, more research is needed to study the links between these professionals’ skills and health outcomes for patients with limited literacy skills. Finally, the major gap identified in the IOM report has to do with guidelines and gold standards. Implementation studies remain scarce and are still sorely needed. The NAP calls for program evaluation studies to explore barriers related to health communication, health systems, and the effects of purposeful change. The research agenda suggested by the National Action Plan calls for studies of oral communication skills, of math skills and numeric assump­ tions, of the practices and processes of health care, and of the communica­ tion skills of health professionals. It also asks that we turn our attention

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6 InnovAtIonS In HeALtH LIteRACY ReSeARCH to the multiplicity of settings within which people take health­related actions. In so doing, the NAP is recommending a strategy that reduces barriers to information, to decision making processes, to action, to health care, and to community well­being. The U.S. Department of Education’s 1993 and 2005 reports of lit ­ eracy skills among U.S. adults give evidence of the strong links between literacy and social factors (Rudd, 2007). Analyses of the distribution of health literacy indicate that health literacy is related to health dispari ­ ties. Everything we talk about when speaking of literacy and disparities, alone or together, must meld with the powerful issues of social justice. Health literacy research offers evidence of links between literacy skills and prevention, early detection, chronic disease management, informed choice, illness, and early death. Social justice will not allow us to wait for the education systems to improve literacy skills of the public. At the same time, logic will not allow us to attribute health outcomes to indi ­ viduals’ literacy skills alone. Literacy, as the 2004 IOM report noted, is an interaction between the skills of individuals and the demands of health systems. Barriers to information, to care, and to individual as well as community­level decision­making and action—contribute to untoward health outcomes. They must be identified and removed. Policy makers need an evidence base for suggested change, Rudd said. There is already a strong foundation for some of these issues. For example, we know that there must be professional rigor applied to the development and delivery of health information. (Rudd suggested that it be made criminal to disseminate incomprehensible materials critical to health, to healthful action, and to health decisions.) We may well want literacy­related regulations that set standards for health and social service environments and institutions and literacy­related communication criteria for the testing and licensing of professionals. However, we cannot move this agenda ahead without the research to provide insight into needed change and program studies to determine what actions prove efficacious. The National Action Plan offers more than a call—with strategies and links to examples, it illuminates a pathway, Rudd concluded. DISCUSSION One of the major things we are trying to improve, said Dreyer, is how the health care system communicates with patients and gives them information. The NAP says this needs to be measured. But how does one measure how a health system communicates? Davis agreed that is the crux. More work is needed on how to measure whether a health care system is designed for patients. Isham added that the system with its complexity is a key target. We need research and implementation tools for

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 ContRIBUtIonS to tHe nAtIonAL ACtIon PLAn both the organizational level and environmental level of the health care system. As policy initiatives move toward the aggregation of the health care system, health literacy needs to keep pace by thinking about context and the degree of chaos and disorganization. How can the complexity be assessed, as opposed to the individual and his or her capabilities within the system? Dreyer asked Rudd about her comments on regulations. How might regulations from the Centers for Medicare and Medicaid Services (CMS) and payment processes drive this? Rudd said CMS might mandate, for example, that patient education sessions be done in everyday language. Knee is such a better word than patella. Isham asked if researchers are the right people to redesign systems. Rudd responded that researchers, per­ haps, should serve as evaluators rather than designers, which is reason to bring in the different skill sets discussed earlier. Amy Wilson Stronks, roundtable member from the Joint Commis­ sion, called for mechanisms to make sure patients can provide informa­ tion to providers so there is an exchange. The Joint Commission recently adopted new standards aimed at improving patient­centered communica­ tion through a larger project to advance effective communication, cultural competence, and patient­ and family­centered care. Though not named, health literacy is a part of that. She asked Rudd for recommendations for the Joint Commission on ways to carry that forward to health care providers. Raising awareness and appreciation is the first step, replied Rudd. It is a profound literacy task to be able to take a feeling from within and be able to take that sensation and turn it into words for a stranger, or someone you see once a year. The challenge is to figure out how to make it easier for the person. Appreciating the task and then brainstorm­ ing solutions will reveal interesting possibilities that can be tested. And that means getting beyond the “smiley faces to frowning faces” scale to describe pain.

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