6

Concluding Panel

WHERE DO WE GO FROM HERE?

Ilona Kickbusch, Ph.D.
Director, Global Health Programme,
Graduate Institute of International and Development Studies

Kickbusch said that when she was at Yale University years ago and met with such people as Ratzan and Parker, she thought about how to further the dialogue between a more European perspective on health literacy and the way health literacy is discussed in the United States. Upon returning to Europe, one of her goals was to strengthen health literacy in Europe and be able to have data to determine whether the levels of health literacy in Europe were better, worse, or the same as they were in the United States. Joining with other health literacy professionals, the European Health Literacy Survey was initiated.

In thinking about how to move forward, it is important to keep in mind why many dedicated people pushed for health literacy in general and the European Health Literacy Survey in particular, she said. It was because what was needed was an outcome measure at the population health level that would indicate the composite impact of health promotion measures. It was important to move away from just having a program-by-program success or failure rate. What was needed was to be able to show at the aggregate population level how health literate a population is and, from that, deduce how well a society has been doing in terms of investment in skills and capacity of its population to deal with health issues.



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6 Concluding Panel WHERE DO WE GO FROM HERE? Ilona Kickbusch, Ph.D. Director, Global Health Programme, Graduate Institute of International and Development Studies Kickbusch said that when she was at Yale University years ago and met with such people as Ratzan and Parker, she thought about how to further the dialogue between a more European perspective on health lit- eracy and the way health literacy is discussed in the United States. Upon returning to Europe, one of her goals was to strengthen health literacy in Europe and be able to have data to determine whether the levels of health literacy in Europe were better, worse, or the same as they were in the United States. Joining with other health literacy professionals, the European Health Literacy Survey was initiated. In thinking about how to move forward, it is important to keep in mind why many dedicated people pushed for health literacy in general and the European Health Literacy Survey in particular, she said. It was because what was needed was an outcome measure at the population health level that would indicate the composite impact of health promotion measures. It was important to move away from just having a program-by- program success or failure rate. What was needed was to be able to show at the aggregate population level how health literate a population is and, from that, deduce how well a society has been doing in terms of invest- ment in skills and capacity of its population to deal with health issues. 83

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84 HEALTH LITERACY AROUND THE WORLD The key point, Kickbusch said, is that future activities depend on a composite figure that can be used when talking with politicians and other decision makers about whether they are fulfilling their responsibilities as a state, as an employer, or as a society. That now exists in Europe. And the figure for Europe is just as ominous as the figure for the United States, she said. Forty-seven percent of the population does not have enough health literacy. When one has such data, one starts to obtain attention. Not long ago the Austrian media attended a press conference where data were presented that show Austria has a low level of health literacy compared to other European countries. That was news. That was a political issue. It is not acceptable for a European welfare state to have such low levels of health literacy, particularly if they are low in comparison to others, Kickbusch said. Should health literacy be measured only at the individual level or at the community level, or should it be measured at the population level? A population-level measure can be a politically critical figure, Kickbusch said. But this also means there must be a better definition of health lit- eracy. It is important to be clear when communicating with decision mak- ers what the dimensions of health literacy are. What is it that needs to be addressed? Kickbusch said there are four things to get across: 1. There is a need to equip people with the possibility of making healthy choices in an environment that is basically detrimental to their health. It is also important to show how this is influenced or not through health literacy. 2. There is a need to indicate how people get the skills they need and whether they have the skills to self-manage their health behav- iors, to live with chronic disease, and to support their families. How can individuals be part of a coproduction of health? 3. Can people be taught the skills to navigate increasingly complex health care systems that are not only complex but also nontrans- parent and undemocratic? How? 4. Can people be taught the skills needed to communicate with health professionals? Looking at these four dimensions, then, health literacy is about mea- suring how well equipped people are to function in these four dimensions, Kickbusch said. Is society equipping people and supporting citizens in the pursuit of health? It is unacceptable in a modern democracy, she said, that 47 percent of a population does not have the necessary skills and society does not make available the environment for them to adequately use the health care system and access health. This is not only about the health care system but also includes looking at every single supermarket, at labeling,

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CONCLUDING PANEL 85 and at the range of determinants of health, including the social, political, and commercial determinants that prevent people from accessing their citizen and patient rights, Kickbusch said. Health literacy is a debate about human rights, patient rights, and citizen rights, she stated. In terms of where to go from there, first, the debate about health lit- eracy needs to be integrated into the key global health debates, including the noncommunicable disease challenge, the millennium development goals, and the inequality debate. Health literacy is inextricably linked to the debate on inequality, she said. Second, the link between adult literacy and health literacy needs to be strengthened, she said. If some kind of alliance is to be built, the Organisation for Economic Co-operation and Development (OECD) must strengthen the health literacy dimensions of the surveys they conduct. Third, Kickbusch said, an initiative should be begun with the World Economic Forum, possibly also with the World Health Organization (WHO) and the International Telecommunication Union, on mobile health and health literacy in developing countries. This could include cross- national roundtables involving the African countries and the associa- tion of emerging national economies (BRICS). Health literacy advocates should, she said, start developing policy briefs with economic arguments about the cost of low health literacy, about the unacceptability of 47 percent of the population having low health literacy, about the contribu- tions of health literacy to achieving healthy life-years, and about health literacy’s contributions to the quality agenda and to a patient-centered health care system. The health literacy of key decision makers also needs to be addressed, Kickbusch said. What is the health literacy of parliamentarians, mayors, business leaders, and journalists? Work must also be done with patients and citizens about how they exchange health information with each other. Kickbusch quoted from The Art of Choosing by Sheena Iyeangar of Columbia University: “We wish to see our lives as offering us choices and the potential for control, even in the most dismal of circumstances.” This quote echoes what Amartya Sen wrote in Development as Freedom, which is that one needs to have both. There needs to be choice plus control. That is empowerment. What modern societies often offer, Kickbusch said, is choice without control, without knowledge, without skills. And that, she concluded, is irresponsible.

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86 HEALTH LITERACY AROUND THE WORLD A PUBLIC HEALTH PERSPECTIVE FOR HEALTH LITERACY Jürgen M. Pelikan, D.Phil. Professor Emeritus, Vienna University Key Researcher and Director, WHO-CC for Health Promotion in Hospitals and Health Care Vienna, Austria Pelikan said that health literacy of both people and systems is a rel- evant social determinant of health that can be defined, measured, com- pared, and influenced. This holds true even though there are concerns about some of the definitions and, when measuring, there are a number of instruments that differ in scope, content, and psychometric qualities. Health literacy can also be measured in different ways for general popu- lations. Health literacy can be measured for specific vulnerable groups, especially patients. And it can be measured for health relevant or health care systems, organizations, services, and products. With measurement, results can be compared. They can be compared cross-sectionally and longitudinally, which enables determination of the effects of policies and health promotion interventions. This possibility of diagnosis and evalu- ation of measures taken is very important for practice and for politics, Pelikan said. There are two kinds of strategies to undertake toward achieving health literacy: improving the competencies of people and decreasing the demands of systems, organizations, services, and products. The latter is much less well explored at this time. Pelikan said there is only fragmented knowledge, especially for gen- eral populations, about the distribution of health literacy and its asso- ciations with social causes, conditions, and determinants of lower health literacy. There is also growing knowledge about the association of health literacy with vulnerable population groups and with health relevant con- sequences (e.g., health behavior, health status, use of services, and costs). Results of the European Health Literacy Survey, which used an identi- cal and comprehensive instrument in eight countries, showed four major results, Pelikan said. First, health literacy is not only complex but, because it is complex, it is quite diverse within and across countries. Therefore, one must measure in every country because there are differences, not only for averages or distributions or standard deviations but concerning asso- ciations with determinants and consequences of health literacy as well. In some countries, low health literacy is related to age; in others, there is no relationship to age. There are also remarkable differences in bivariate and multivariate associations (and explained variance) of health literacy with social determinants or covariates. This is not just a consequence of HLS-EU survey’s complex measure; the same kinds of variance hold true

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CONCLUDING PANEL 87 for the newest vital sign health literacy test or standard measures of self- assessed health. Pelikan said that from a public health perspective there are four main deficits or challenges for health literacy research, practice, and policy. The first challenge relates to Ilona Kickbusch’s discussion—comparable, com- prehensive, and economic population measures for continuous monitor- ing of a population’s health literacy need to be developed. Second, health literacy is about both personal competences and situational demands. Currently, there is still an imbalance in focus. More investment is needed in organizational change and development, he said, and in measures of health literate organizations. There is a need for systematic and sustain- able integration of health literacy in health care services, in their goals, mission statements, outcome definitions, structures and processes, quality management, and everyday diagnosis and intervention. Finally, regular comparative and longitudinal population studies of health literacy need to be conducted, Pelikan said. Where do we go from here? Pelikan asked. From a public health perspective, health literacy could be established as a new type of index for societies. Or a population health literacy index (combining a person’s skills and the health literacy friendliness of key systems and settings) could be developed as a measure of health development. This cannot be done by scattered research and practice efforts. A much more inte- grated approach is needed, he said, and there are some good models of such efforts. There is the OECD International Adult Literacy Survey, the Adult Literacy and Life Skills Survey, the Program for International Student Assessment, and the Programme for International Assessment of Adult Competencies. Another example is the WHO’s Health Behavior in School-Aged Children study, which began with 5 countries in 1983 and by 2009 included 40 countries. Characteristics that made these international p ­ rojects successful include being open; they can start with a few coun- tries and then can grow. There also needs to be obligatory core measures, but every nation should have the option of also adding specific topics and themes for themselves, Pelikan said. In the long run, what is really needed, Pelikan said, is to include health literacy in official health statis- tics and health reporting on a regular basis. What are the next steps to take to reach these goals? Having continu- ous population measurement is a necessary but difficult goal as it puts a great deal of stress on accepted measurement systems. Pelikan said agen- das must be set, alliances need to be built, and resources must be allocated by relevant stakeholders to tackle four priority areas: 1.  Develop of an accorded, comprehensive, economical health literacy population measuring instrument.

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88 HEALTH LITERACY AROUND THE WORLD 2.  evelop measures for the health literacy demand of different D systems. 3.  onduct comparative population and system studies using these C instruments. 4. Systematically integrate health literacy into health care services. Pelikan also recommended the creation of international working groups with clear goals, time frames, and resources to start and prepare some open international projects. Such projects need strong leadership, he said, and therefore should include the OECD and the WHO. In terms of orienting health services to health literacy, the Institute of Medicine (IOM) has provided excellent leadership already. Others from Europe should become involved now and begin an American-European initia- tive to move broadly and quickly in this direction. Pelikan concluded his presentation by inviting all present to help attain the important goal of improving population health by investing in health literacy. THE EVOLVING CONCEPT OF HEALTH LITERACY Don Nutbeam, Ph.D., FFPH Vice-Chancellor, University of Southampton Nutbeam said that in 1991 he and a group of colleagues at the Uni- versity of Sydney were commissioned by the Australian government to review and revise Australia’s national health goals and targets. Over an 18-month period, the group worked on what they perceived to be a visionary and radical set of proposals for health goals and targets that included not only conventional goals related to mortality and morbidity and healthy lifestyles but also proposals for two new major areas: the cre- ation and promotion of healthy environments and health literacy. Health literacy at that time was defined as the ability to gain access, understand, and use information in ways that promote and maintain good health. There were three national goals for health literacy published in Goals and Targets for Australia’s Health (Nutbeam et al., 1993). The first goal was to achieve the goals of the Australian Language and Literacy Policy because it was clear that improving health literacy in the population was fundamentally dependent upon levels of literacy. The second goal was to enhance knowledge and improve health literacy to enable people to make informed choices about their health. The third goal was to enhance knowl- edge and improve health literacy to enable people to take an active role in bringing about changes in the environments that shape their health. Unfortunately, an election was held shortly after publication and the health minister who supported this work did not survive the election,

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CONCLUDING PANEL 89 and neither did the recommendations for a radical change to the nation’s health goals and targets. What actually happened was a narrowing of the national goals and targets to focus only on preventable mortality and morbidity. Health literacy basically disappeared without a trace in terms of public discourse in Australia for about a decade when it then began to reemerge in the early 2000s. This brief history provides some context for what is happening today. It is great to see that health literacy has finally “taken off,” as shown in the commissioned paper by Pleasant (see Appendix A), Nutbeam said. There is a far better appreciation of the nature of the relationship between literacy and health. Nutbeam said that the presentations made throughout the day demonstrate there is a much more sophisticated understanding of the importance of informed choice, of patient engagement, of community engagement, and of the role that literacy and health literacy can play in empowering people to do things that will improve their health. On the other hand, he said, there is some cause for worry. Health literacy has become rather fashionable and is being represented as a pana- cea for all ills and ambitions in the health system. Nutbeam expressed concern that this is exacerbating conceptual confusion and could actually result in holding back scientific advancement and the translation of health literacy into policy and practice. Nutbeam identified three important tasks necessary for improving health literacy. First, there is a need to sort out conceptual confusion and competing paradigms. Although there is the alternative view expressed earlier that all concepts should be welcomed, there are real risks associ- ated with such an approach, he said. Second, it is important to put into practice what is already known to be useful and effective; not only should new knowledge be generated but existing knowledge must be commu- nicated and shared as well. Finally, as Pelikan said earlier today, a more systematic and collaborative approach is needed to address the challenge of measurement. There are a number of areas of conceptual confusion, Nutbeam said. First, health literacy is not an action, it is an outcome or status measure- ment. People do not “do” health literacy, they educate and communicate. Second, there is continuing confusion about the relationship between language and literacy. Individuals may be highly literate in the language they speak at home but not fluent in the language used in their com- munity or current country of residence. Translation and interpretation services would address this issue, which is not an issue of health literacy, Nutbeam said. The third conceptual confusion relates to the fundamental relation- ship between literacy and health. On a population basis, there is a direct relationship between literacy and health status. Some people have low

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90 HEALTH LITERACY AROUND THE WORLD literacy levels and, at a population level, this both directly and indirectly affects health status. Literacy is a social determinant of health. Programs to promote improved access to education and improved education would address this, Nutbeam said. The fourth area of confusion is that there is a difference between health-related literacy and health literacy, Nutbeam said. Health-related literacy reflects the impact that low general literacy (and numeracy) may have on an individual’s ability to engage with health information and the health care system. People who enter a health system with low general literacy will often have problems with the system and problems respond- ing to what the system might demand of them. The difficulties are due to a deficit of general literacy rather than a specific deficit in health literacy. Health literacy is a distinctive domain of literacy that is content and context specific and can be assessed in absolute and relative terms, Nut- beam said. It can be built and improved through educational intervention across the life span. There are many different kinds of literacies—financial, science, media, information technology—and health literacy is one kind of literacy that is contextualized by age and stage of life. Nutbeam said our collective research efforts have demonstrated sev- eral things about health literacy. There is good evidence derived from research in clinical settings that has linked poor health-related literacy with a range of clinical outcomes. Research has also shown that the rapid assessment of health literacy is feasible in normal clinical settings. There have also been intervention trials in clinical settings that show both the potential effectiveness and the cost savings that can come from interven- tions that take into account differences in health-related literacy. Outside of the clinical setting, Nutbeam said, there is promising but as yet largely undeveloped intervention research in schools, adult education, and online learning. It is important to continue to broaden and test different types of interventions beyond health care settings and disease groups into schools, adult learning, and community development. There is also great potential for e-health and mobile health initiatives. There is also a need for devel- opment of measures that incorporate a wider set of skills and capacities represented by health literacy, he said, such as the inclusion of measures of context-specific self-efficacy or the confidence and capacity to act. In clinical policy and practice, there is a need to continue to promote understanding among clinicians of the effect poor literacy has on clincial outcomes, Nutbeam said. Furthermore, there is a need for different forms of education and communication methods than are commonly used in clinical practice, such as the use of the teach-back method. Also, effective communication can be supported by service management and organiza- tions that are “literacy sensitive,” such as minimizing filling out forms.

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CONCLUDING PANEL 91 In terms of public health policy and practice, because health literacy is fundamentally dependent on population literacy levels, a link needs to be made between these two social goals, Nutbeam said. School health also has an important role to play in building a foundation for future health literacy. There is a need to exploit the great potential in existing educa- tional interventions in health care, such as prenatal education and patient education for chronic disease management. Nutbeam concluded by say- ing that adult education and skills-development programs can provide ideal partnerships for adult health literacy development. DISCUSSION Benard Dreyer, Roundtable member, said the presentations dem- onstrate that issues of health literacy are international. There may be diffrerent associations in different countries, but overall, the issues are the same. This means, he said, there is an opportunity to collaborate to address the problems. One specific and important problem to work on is to decrease the health literacy load the health system places on people. Such an issue might form the focus of a follow-up meeting to this one, he said. Dreyer also said the points made by the closing panel—the issues of justice and of health inequality Kickbusch described, the need for measures identified by Pelikan, and the comments on research needs discussed by Nutbeam—were powerful. In addition to these, Dreyer said, there is a need for research on medication labeling. There is a huge prob- lem with medication errors and the use of medication. Patrick McGarry, Roundtable member, commended Nutbeam for highlighting school health education and comprehensive health educa- tion. A meaningful solution to ameliorate problems in health literacy, McGarry said, is to provide comprehensive school health education. Lisa Khan-Kapadia, a health literacy program manager with Com- munity Healthcare Network, commented that the need for research on what companies are doing internally to integrate health literacy into their organizations is very important. She said that her job is to change the culture of the network of federally qualified health centers to become health literacy organizations. Her organization has defined health literacy for their purposes, has moved forward with infrastructure initiatives (e.g., a health literacy task force that reviews information), and involved both clinical and nonclinical staff. The difficulty in moving forward is that there are no funding streams that support the kind of research needed on organizational change. Such funding is key to moving beyond a focus on patients or a diagnosis, she said. Will Ross, Roundtable member, directed his comment to Kickbusch,

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92 HEALTH LITERACY AROUND THE WORLD saying that he agreed that health literacy should be viewed as a human right and it should be codified into policies at the highest level. The rela- tionship between health literacy and human rights needs to be explored as part of the discussion on conceptual issues for health literacy, he said. Rights-based public health might be a realm in which such exploration could occur, he said. Ratzan said that Pelikan made specific comments about advancing health literacy by working through the OECD. An Economics of Preven- tion meeting is held every year, and that could be a forum in which data such as the European Health Literacy Survey results (e.g., 47 percent low levels of health literacy) could be presented. Furthermore, it would be good to develop a policy brief on the state of and impact of health literacy, he said. Second, World Economic Forum documents contain the term health literacy but there is a need for more—again, policy briefs and, perhaps, an index of health literacy are needed, he said. But what is also needed, Ratzan continued, is advocacy backed up by evidence. The ambassadors to the OECD, including the business sec- tor, need to learn about the importance of improving health literacy. The United Nations Innovation Working Group is another place to provide information about health literacy and its impact on health. This working group has mobile health and e-health working groups that anyone can participate in. These are important potential avenues to explore, Ratzan said. Finally, the next time there is such an international meeting as the current workshop, there should be representatives from additional con- tinents and countries. Continuing the momentum in both the academic and private sector, and with the work of the IOM Roundtable on Health Literacy, great progress can be made, Ratzan concluded. Nutbeam said he agrees that it is important to engage in the political process. The critical thing, he said, is that if one does not have a sound scientific base, there is only so far one can go. It is important both to advocate and to advance and strengthen the science, but if there are lots and lots of things going on, it is harder to advance the science; a balance is needed, Nutbeam said. Kickbusch agreed that a balance is needed, but she pointed out that one needs to advocate in order to obtain funding to develop the scientific base. Health literacy is important to public health. There are enough exemplars and evidence to document that health literacy is a critical issue. What is needed is funding of research that will strengthen the evidence base. The European Health Literacy Survey is a case in point. It took 3 years of advocacy to obtain the funding to implement the survey. Today, these data are very important. Rima Rudd, Roundtable member, asked, “Are we done? Are we fin- ished? Do we really need funding for health literacy? Or do we need

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CONCLUDING PANEL 93 funding to take health literacy insights and reinfuse health communica- tion with those insights and bring health literacy into health education programs or health promotion programs? Is more health literacy work really needed?” She also asked whether the materials and information offered to the public were accessible. Providing her own answer, Rudd said that with more than 3,000 studies, the answer is no. Information is poorly designed whether it is on a website or in print. Pelikan responded that he did not think research into health literacy was finished because the concept of health literacy is not only complex but also dynamic. Because things change, additional research is needed. One must measure the effects of health interventions; if a change is imple- mented, one must measure that change, he said. Furthermore, many areas monitor what is occurring, and there is a need for monitoring concerning health literacy because health literacy is a very important outcome of how society is working, Pelikan said. Just as there is monitoring of an organiza- tion’s quality of health care, one needs to monitor to determine whether one can improve the health literacy of a hospital organization. All of these things require data, and from both an epidemiological perspective and a quality perspective, there needs to be continued measurement of health literacy, Pelikan concluded. Nutbeam responded that as he said in his presentation there are three things needed. One is to continue to explore the concept of health literacy and what it is. Second, one must put into practice what is already known. As Rudd pointed out, a lot is known but more knowledge and evidence is needed. Finally, improved measurement used in creative ways is needed, he said. Kickbusch added that despite the fact that a great deal is known, it is not translated into what gets done, often because there are not enough resources to bring a program to scale. And the lack of resources can be traced to lack of political support, she said. Many in the health literacy field are grappling with trying to determine what kinds of arguments and what kinds of data are needed in order to be able to obtain funding. It would be great, she said, to find a measure that would help in political measure- ments, such as a measure that showed “low health literacy costs x amount of dollars.” Kickbusch said that in discussions with European insurance companies those companies have expressed concern about health literate people because they fear such individuals will use the health system more. Do health literate people use the health system more? Do they use it better? Data are needed to answer these questions and concerns, she said. Kickbusch said she believes that with all the knowledge about health education, communication, and health promotion it is a tragedy that better advances in population health have not been made in developed

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94 HEALTH LITERACY AROUND THE WORLD societies in the world. The measurement of health literacy as an outcome is, she said, a tool to further improve population health. Nutbeam said he believes there have been advances in population health, but these have not been accompanied by advances in equity in health. There is something in health literacy that might be useful, both in the discourse it prompts about the way the health care system works and in the approach that it promotes in terms of empowering individuals. And this, in turn, might make a difference in advancing population health and improving equity, he said. Kickbusch agreed. Cindy Brach, Roundtable member, said that although health literacy may not be a verb it is evolving to be more of an adjective, such as becom- ing a health literate organization, engaging in health literate health promo- tion, and promoting health literate patient safety. The discussion is about doing things differently. Also, Brach said, what has been largely absent from the workshop dis- cussion is exploration of incentives and alignment. Hospital readmissions in the United States can serve as an example. Seven years ago the U.S. Agency for Healthcare Research and Quality (AHRQ) sponsored a study to examine a new way of performing hospital discharges, a health literate way. A randomized controlled trial was conducted, and it was found that this health literate approach reduced hospital readmissions by 30 percent. But was there a groundswell wanting to know how to do this? No. Not until there was a change in reimbursement by the Centers for Medicare & Medicaid Services regarding readmissions did many show interest. Now there is a huge increase in interest. What is needed, Brach said, is a focus on tools to help organizations implement health literate strategies. Finally, Brach said she is nervous about population-based measure- ment and national or international surveys of health literacy for two reasons. The first reason concerns the sensitivity of the measure. The other reason concerns what is the measure of success. On the one hand, one talks about the capabilities and abilities of individuals. On the other hand, one talks about the demands and complexities of the health system. It may not be necessary to address individual abilities if the demands of the system have been reduced so individuals are better able to navigate, access, and understand information. “What kind of tools can be used to measure these system demands?” Brach asked. What tools can be used to measure the attributes of a health literate organization, to monitor progress? In response to Brach, George Isham, chair of the Roundtable, said that as a member of the Measurement Application Partnership1 he is advising 1  The Measurement Application Partnership (MAP) is an effort of the National Quality Fo- rum. “MAP is a public-private partnership that reviews performance measures for potential

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CONCLUDING PANEL 95 the U.S. Department of Health and Human Services on the use of qual- ity measures for incentives in their various programs. Health literacy is being discussed for inclusion. Second, the recent IOM report Best Care at Lower Cost includes several references to health literacy. Health literacy needs to be embedded into the main line of policy development, into the use of information technology, and into the delivery of high-quality care, Isham said. There are many opportunities, and it is important to broaden understanding of the impact of health literacy beyond the core of health literacy researchers and experts. Working across silos, within each coun- try, is a tremendous opportunity for policy makers, he said. Kickbusch agreed that there are many opportunities to link existing programs. For example, one might revisit the definition of what defines a health-promoting school and add a dimension of health literacy. One could also move forward with Pelikan’s idea of comparing schools to see whether those that fulfilled the health-promoting schools criteria have more health literate students, teachers, or directors, she said. One could build a composite program with the support of existing networks, be they health-promoting hospitals, the schools, the cities, or other groups. Pelikan said there is an interest from the Health Behavior in School- Aged Children Consortium in incorporating a measure of health literacy into their measurement instrument. In terms of sensitivity of the measure, Pelikan said, measuring always is a risk. But that risk must be taken in order to advance learning. Saying one should not measure because it might be misinterpreted is not a good strategy, he said. Also, the mea- sures of individual skills and abilities are relative measures, not absolute ones. They are measures of how difficult it is in a certain system and how much competence one needs in that system to do something. More work is definitely needed to make systems more user-friendly. One participant said she would like to hear more from developing countries. The United States has a lot to learn and there are many part- ners for learning more about cultural competency. What does research in that area show? There is also, she said, much to be learned from the fields of adult literacy and education, such as theories about adult learn- ing. The participant said she felt very strongly that health literacy is part of the critical issue of literacy and adult-learning theory, which is about empowerment. Health literacy is not only a systems issue, she said, but also a patient-rights issue. use in federal public reporting and performance-based payment programs, while work- ing to align measures being used in public- and private-sector programs. MAP is the first group of its kind to provide upstream, pre-rulemaking input to the federal government on the selection of measures” (http://www.qualityforum.org/Setting_Priorities/Partnership/ Measure_Applications_Partnership.aspx [accessed March 6, 2013]).

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96 HEALTH LITERACY AROUND THE WORLD Andrew Pleasant, Roundtable member, said he agreed with Nut- beam about the need for a conceptual framework. The reason why this is important is because the field of health literacy would not fare well in a systematic review without such a framework. It takes solid evidence to influence policy, Pleasant said. That solid evidence base does not yet exist, mainly because the methodology has been inconsistently applied and there is no agreement on the fundamentals. The other problem is that most of the studies have been conducted from a deficit model, Pleasant said. It is known what happens when health literacy is not present. But what happens when health literacy is present; how do people actually use health literacy? Finally, now is the time to create an international organi- zation of health literacy, Pleasant said. Lisa Bernstein from the What to Expect Foundation, said that she has been working in developing nations that either are building or do not have health care systems. Of concern is the potential for exporting the current dysfunctional health care system in these countries as doctors and others trained in the United States or a European country return to their home countries and work to build the same systems over again. Bernstein said she hopes the international health literacy efforts will grow and include developing nations so that such dysfunction will not continue. Sofia Leticia Morales of the Pan American Health Organization said she believes health literacy is an outcome. It is also a political goal in a modern democracy. And it is a challenge. What is needed is an under- standing of how to work with the politicians, the parliaments, and the other ministers to achieve the outcome of health literacy. Isham concluded the workshop by announcing that a summary of the presentations will be prepared and published, and that it will include the full paper on international health literacy programs, policies, and strate- gies as an appendix. REFERENCE Nutbeam, D., M. Wise, A. Bauman, E. Harris, and S. Leeder. 1993. Goals and targets for ­ ustralia’s health in the year 2000 and beyond. Canberra: Australian Government Publish- A ing Service.