Appendix A

Health Literacy Around the World:
Part 1
Health Literacy Efforts
Outside of the United States1

by

Andrew Pleasant, Ph.D.
Director of Health Literacy and Research
Canyon Ranch Institute
Tucson, Arizona


Commissioned by
Institute of Medicine
Roundtable on Health Literacy

___________

1 The author is responsible for the content of this article, which does not necessarily represent the views of the Institute of Medicine.



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Appendix A Health Literacy Around the World: Part 1 Health Literacy Efforts Outside of the United States1 by Andrew Pleasant, Ph.D. Director of Health Literacy and Research Canyon Ranch Institute Tucson, Arizona Commissioned by Institute of Medicine Roundtable on Health Literacy 1  The author is responsible for the content of this article, which does not necessarily rep- resent the views of the Institute of Medicine. 97

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98 HEALTH LITERACY AROUND THE WORLD CONTENTS ACKNOWLEDGMENTS 100 INTRODUCTION 102 HEALTH LITERACY: A BRIEF SYNOPSIS OF THE FIELD 102 METHODOLOGY 104 RESULTS 109 Australia, 109 Austria, 125 Bangladesh, 126 Botswana, 126 Brazil, 127 Cameroon, 127 Canada, 127 Chile, 138 China, 139 Côte d’Ivoire, 144 Denmark, 145 Finland, 146 Greece, 147 India, 149 Ireland, 153 Israel, 157 Japan, 159 Kenya, 160 Liberia, 162 Malawi, 162 Mexico, 163 Mozambique, 166 Netherlands, 166 New Zealand, 167 Pakistan, 172 Peru, 173 Singapore, 174 Slovenia, 175 South Africa, 175 Spain, 178 Switzerland, 179

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APPENDIX A 99 Turkey, 181 United Kingdom (Great Britain, Scotland, Wales, and Northern Ireland), 182 Zimbabwe, 186 European Union (EU), 189 United Nations (UN), 192 International Nongovernmental Organizations (in alphabetical order), 195 PRELIMINARY SUMMARY AND CONCLUSIONS 199 REFERENCES 203

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100 HEALTH LITERACY AROUND THE WORLD ACKNOWLEDGMENTS First and foremost, I want to offer my sincere gratitude to every participant who took the time to respond to the request for information. When investigating what is essentially an unknown phenomenon such as the subject of this discussion paper, it becomes increasingly difficult to design an efficient data collection tool. The data collection tool employed in this exercise inherently had no choice but to place the bulk of the bur- den on respondents to respond in English. I dearly wish that reliance on the English language and the burden created by an open-ended inquiry could have been reduced. However, the resources available, the context of health literacy as a field of research and practice, and my own personal skills required an open-ended inquiry in English. Truly, and necessarily, this was not a health literate process of collecting information. I had to rely on the motivation and health literacy skills, in English, of the respon- dents. Thus, I cannot thank the participants enough. This effort would also not have been possible without the inspiration and support from the staff and members of the Institute of Medicine Roundtable on Health Literacy. In particular, I would like to recognize the tireless role that Lyla Hernandez plays in keeping the Roundtable on Health Literacy moving forward. While many of the many hours I had the pleasure to invest in this project occurred in the evening and weekends, many hours also neces- sarily overlapped with my primary employment at Canyon Ranch Insti- tute (CRI), which is a 501(c)3 nonprofit public charity located in Tucson, Arizona, in the United States. Without the active support of my colleagues at CRI, this discussion paper would have never materialized. Thus, I want and need to extend my heartfelt thanks to my colleagues Dr. Richard Carmona, Athena DeLay, Jan McIntire, Russell Newberg, Chuck Palm, Maura Pereira-Leon, and must offer a special thank-you and acknowl- edgment to CRI Executive Director and Board Member Jennifer Cabe. Nothing that anyone at CRI accomplishes—including this project—would occur without her inspiring leadership. Additionally, I want to acknowledge a few specific individuals who supported this process in a variety of ways, including reviewing reports on specific countries, encouraging colleagues to participate, helping to gather specific data, or just being necessary in other ways. These indi- viduals are Andre de Quadros, Nicola Dunbar, and the entire staff at the Australian Commission on Safety and Quality in Health Care, Mahiri Mwita, R.V. Rikard, Irv Rootman, Gillian Rowlands, Mallika Sarabhia, and Kristine Sørensen. If you do not know of those individuals already, please take my advice and get to know their work. First efforts such as this will necessarily be burdened with errors.

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APPENDIX A 101 Any faults are my own. Hopefully, I will be able to correct any errors and improve the process and reporting in the future. Respectfully, Andrew Pleasant, Ph.D. Health Literacy and Research Director, Canyon Ranch Institute Member, Institute of Medicine Roundtable on Health Literacy

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102 HEALTH LITERACY AROUND THE WORLD INTRODUCTION In the history of health and medicine, health literacy is a dramatically new idea and area of activity. That newness of the concept of health literacy creates the motivation and the possibility for an effort to better understand the health literacy efforts ongoing around the world. That newness is also what makes such an effort challenging, if not impossible, to truly and systematically com- plete. The source of that challenge lies in multiple realities. For example, there is no international organization of health literacy practitioners, researchers, or academics. There is no existing database of individuals and organizations that actively work with health literacy. Further, there is not universal agreement of the definition of health literacy and, partly as a result, translation of the concept across languages is fraught with difficulty. The results of an effort to learn about health literacy activities ongoing around the world are reported in this discussion paper, and a companion paper to follow that will focus on health literacy efforts in the United States. The idea for this discussion paper emerged during the planning for an Institute of Medicine Roundtable on Health Literacy workshop on health literacy in international contexts titled “Improving Health, Health Systems, and Health Policy Around the World.” More details about the workshop are available at http://www.iom.edu/Activities/ PublicHealth/HealthLiteracy/2012-SEP-24.aspx. This paper is prepared to stimulate workshop discussion and help to • Initiate a dialogue among existing organizations from all sectors. • Document the use of health literacy in international contexts (pol- icy, practice, and research). • Examine health literacy interventions, measurement, practice, and research. HEALTH LITERACY: A BRIEF SYNOPSIS OF THE FIELD The first use of the phrase “health literacy” in the peer-reviewed aca- demic literature occurred in 1974 (Simonds, 1974). That use had, by the author’s own report, nothing at all to do with the current understanding of the concept and was more an accident of English than an intentional representation of a singular concept. Health literacy began appearing in the academic peer-reviewed literature in earnest in the early 1990s and has experienced nearly exponential growth since that beginning ­ Pleasant, ( 2011). From a total of 569 peer-reviewed publications identified in 2011

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APPENDIX A 103 through a search of multiple scholarly databases,2 the first author of more than 200 of the articles is from a nation other than the United States (Table A-1). Several nations were represented by a single peer-reviewed publica- tion during 2011. These are the Czech Republic, Denmark, Italy, Jamaica, Portugal, Qatar, the Republic of Korea, Romania, Saudi Arabia, Serbia, Slovakia, South Korea, Sri Lanka, Turkey, and the West Indies. This indi- cates a growing internationalization of the field of health literacy—a field that has been dominated in at least quantitative aspects by the United States but truly does have very international roots, for example, in the work of Brazilian scholar Paulo Freire. Mapping the number of peer-reviewed articles in 2011 by country (Figure A-1) clearly indicates that health literacy has spread around the world and is definitively not a U.S.-only phenomenon. The field of health literacy has grown in many ways beyond the academic peer-reviewed literature. For example, there are an increasing number of conferences with an explicit focus on health literacy. Equally, conferences with a more general focus on public health, for example, seem to also be featuring a growing number of presentations that address health literacy. Anecdotally, at least, these also seem to be attracting larger and larger audiences as more individuals are becoming aware of the importance of health literacy. What we have learned about health literacy has steadily increased over the years as well. For example, numerous research efforts over the years have demonstrated that patients with low health literacy experience less understanding, poorer use of health services, and are less healthy. Specific outcomes associated with low health literacy include, but are not limited to, poor adherence to medical regimes, poor understanding of the complex nature of their own health, a lack of knowledge about medical care and conditions, poorer comprehension of medical information, low understanding and use of preventive services, poorer overall health sta- tus, and earlier death (IOM, 2009, 2011a,b). The growth in the field of health literacy has, in fact, been so rapid that the field of health literacy is becoming at risk for losing track of its own successes and failures. This and the forthcoming report are an attempt to inform the field about its growth and diffusion around the 2  With the assistance of R. V. Rikard, Doctoral Candidate at North Carolina State Univer- sity, the review searched for articles with “health literacy” in either the title, abstract, or keywords published from 1950 to 2011. The databases searched include Pubmed, ISI Web of Science, Academic Search Premier, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Ingenta, and Science Direct. Duplicate citations were removed and/or collapsed into a single citation. In addition, Google Scholar was used to obtain any missing citation information such as the country of the lead author and/or publication year.

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104 HEALTH LITERACY AROUND THE WORLD TABLE A-1  Peer-Reviewed Publications on Health Literacy by Nation of First Author (2011) Country Frequency United States 360 Australia 48 United Kingdom 37 Canada 25 Netherlands 14 Germany 12 Japan 7 Spain 6 South Africa 4 Sweden 4 Brazil 3 China 3 Iran 3 Israel 3 Netherlands 3 New Zealand 3 Nigeria 3 Taiwan 3 Argentina 2 Belgium 2 India 2 Malaysia 2 Norway 2 Singapore 2 Switzerland 2 Thailand 2 world as well as about how health literacy is appearing in policy, research, education, and on-the-ground projects. METHODOLOGY Gathering information about any social phenomenon on a global basis is a significant undertaking that is often rife for failure and nearly always guaranteed to draw criticism. Critiques of this effort and discussion paper are certainly possible and warranted, and the main areas the approach used in this initial effort to collect information about health literacy activi- ties on such a large scale is certainly open to future improvements.

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FIGURE A-1  Frequency of health literacy publications by country (2011). 105

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106 HEALTH LITERACY AROUND THE WORLD The central challenge to this project was to try to gather informa- tion, catalogue, and analyze all of the health literacy activities currently ongoing around the world. That is an ambitious goal and one that has still not been accomplished. Thus, this effort is essentially a baseline against which future efforts can be compared to learn of changes and improvements in methodology and of the status of health literacy work around the world. This first attempt to reach the goals of identifying, cata- loguing, and analyzing efforts in health literacy around the world relied upon three distinct methodologies. Overall, data collection for this effort occurred between June 7, 2012, and September 6, 2012. First, this effort employed a non-probability purposive sampling strategy of snowballing. Snowball sampling is often the best method to reach a population that is unknown or inaccessible to the researchers. Both conditions were true in this case. In snowball sampling, the sam- pling process begins with individuals who are known to be members of the population of interest (Faugier and Sargenat, 1997). Those individuals are then contacted, asked to provide information, and asked to identify other members of the population of interest they may know. The hope is that the sample literally grows like a snowball rolling down a hill and accumulating more snow with each revolution. In this project, the snow- ball sampling process was initiated by sending e-mail invitations directly to individuals who worked in health literacy or worked in a position such that they should be aware of health literacy work in their country or organization. These individuals were requested to participate in the online survey and to forward the e-mail invitation to others they knew of who work in health literacy. This process started with an initial e-mail, with at least one reminder at a later date, sent to 574 individuals around the world believed to be associated with health literacy, health promotion, or health communication efforts. This initial effort garnered 169 responses from 32 countries. Second, the same snowball method was used but with a distinctly different delivery mechanism. Versus sending the invitation to participate and to forward the invitation to participate to known individuals, elec- tronic listservs and discussion groups were the means of delivery in the second method employed in this project. In this instance, the invitation to participate and to forward the invitation to others was delivered to 13 topically related e-mail discussion lists or organizational membership lists. This effort garnered 195 responses from 27 countries. Additionally, a small group of fewer than 10 individuals responded directly via e-mail versus using the online survey platform and are not reflected in the above tallies. Furthermore, not all e-mail addresses included in the initial invitation rounds were valid. Response rates cannot

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APPENDIX A 107 be determined in this methodology, as there is no way to truly know how many people received the initial invitation. The third method employed was a direct online search for health lit- eracy projects and policies. The main search phrase used in this method was “health literacy” and a country name in combination. For countries that do not primarily use English, the term health literacy was translated via freely available online translators. This method was focused primarily on nations where the expected response rate was very low. In addition to identifying online resources that became a part of the evidence reported on here, this method also identified new individuals who were included in the sampling strategy for the first methodology described above. Finally, a small number of nations were selected for a final “fact- checking” stage with an in-country expert. Nations selected for this stage were those that received the most responses. Fact checkers in the selected nation were recognized experts in health literacy working within that nation. This was essentially a validity and reliability check on the basic methodology. Very few errors in fact were discovered in this process and the volunteer fact checkers reported that they actually learned something new about health literacy within their own nation that they were unaware of prior to reviewing the information collected through this process. While a goal of this project was to catalogue all the health literacy activities ongoing around the world, that goal is clearly unreachable. The many realities that transform that ideal into an impossibility include • There is not a universal consensus of what is and is not a health literacy project or policy. This is due to underlying variations in theoretical approaches; definitions; desired outcomes; and to politi- cal, social, and cultural contexts in which participants in this proj- ect work. • There is not a global organization for health literacy researchers, practitioners, and policymakers. Therefore, there is no known structure through which to contact practitioners, researchers, aca- demics, and policymakers working with health literacy. • As the actual population of interest is undefined, probability sam- pling techniques are not possible to employ. • This project did not have the resources to conduct the inquiry in multiple languages. However, using English only is clearly a very limiting factor. Hopefully, future efforts will have the resources to expand to multiple languages. • Further, there is no universally equitable means to translate the concept of “health literacy” into multiple languages. The concep- tual understandings of health literacy reported from around the world have far exceeded the literal understanding of both “health”

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196 HEALTH LITERACY AROUND THE WORLD Meeting Heads of State and Government Summit, which took place in Brussels, Belgium, in 2010.  At the Summit, the role of youth in promoting public health was emphasized. Canyon Ranch Institute Canyon Ranch Institute (http://www.canyonranchinstitute.org) is a 501(c)3 nonprofit public charity based in the United States and has, to date, conducted health literacy programs in Peru and the United States. In Peru, the organization developed the “Arts for Behavior Change” program, a study that developed and tested a new methodology, “Theater for Health,” that used the arts to advance health literacy and, as a result, improved knowledge, home hygiene behaviors, and reduced microbiological risk factors among residents of a low-income community in Lima, Peru. In the United States, the organization has 14 active partnerships with a broad range of organizations in business, education, health care, and policy. The partnerships range from focusing on improving health policy to creating active community-based health literacy efforts like the Canyon Ranch Institute Life Enhancement Program and Time to Talk CARDIO. European Patients Forum The European Patients Forum (EPF) is based in Brussels and works European-wide. A participant reported that the EPF holds health literacy high on the agenda in terms of patients’ rights and safety. The group orga- nized a conference with health literacy as a theme in 2008 and partner on the issue in European Union matters as they strive to raise awareness of health literacy and integrate it into policies (http://www.eu-patient.eu). BOX A-6 How Did You First Learn About Health Literacy? “I believe that the first time I learned about health literacy was in 1989 when I had dinner with Scott Ratzan in Toronto after he had done a presentation for the Health Communication Unit which was part of the Centre for Heath Promotion at the University of Toronto that I directed at the time. That encounter led me to be invited to a meeting on health literacy in Wash- ington sponsored by Pfizer. A subsequent meeting with Rima Rudd when I joined the Institute of Medicine Board on Health Promotion cemented my interest in the topic and ultimately led me to do research using this concept and to participate in the Institute of Medicine Committee on Health Literacy and Co-Chair the Canadian Expert Panel on Health Literacy.” —Canadian participant

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APPENDIX A 197 International Union of Health Promotion and Education (IUHPE) The IUHPE established a Global Working Group on Health Lit- eracy in 2011 (http://iuhpe.org/index.html?page=661&lang=en). The group has established a 3-year work plan for promoting healthy literacy policy, practice, and research. Members of the working group are from different regions of the world. IUHPE has designated health literacy as one of the central topics for sub-plenary sessions in the upcoming world conference and a priority area. Multiple presentations and work- shops on health literacy have been organized at previous international conferences. Sisters of Mercy of the Americas Sisters of Mercy of the Americas is reported by a participant to have been carrying out their mission in the following eight countries (year efforts started in each nation are in parenthesis): Argentina (1856), Belize (1883), Chile (1965), Guatemala (1971), Guyana (1894), Honduras (1959), Panama (1959), and Peru (1962). Ministries in the eight countries range from formal education and health care to empowerment of women, care of children, aid to those suffering from poverty, literacy education, and pastoral responses to spiritual and temporal hungers. The participant reported that the organization’s tradition of formal education is continu- ing at Colegio Santa Ethnea in Argentina, Muffles Junior College and St. Catherine Academy in Belize as well as Instituto Maria Regina in Honduras. Literacy and alternative educational programs are ongoing in Argentina, Guyana, Panama, and Peru. All the educational endeavors give particular attention to women and children suffering from poverty (http://www.sistersofmercy.org). The What to Expect Foundation On June 14, 2012, U.S. Secretary of State Hillary Clinton announced what is perhaps the newest health literacy initiative that will be ongo- ing in multiple nations—specifically in Bangladesh, Brazil, and Liberia. The U.S. Office of Global Women’s Issues is partnered with The What to Expect Foundation (http://www.whattoexpect.org) to implement their Baby Basics Program in these three nations. The Women’s Health Inno- vation Program will expand the Foundation’s work to the international arena, and will be piloted in Bangladesh, Brazil, and Liberia. Building on more than 10 years of successful implementation across the United States, the international program aims to empower vulnerable and expectant mothers with evidence-based, culturally appropriate pregnancy informa- tion, education, and social support, in an effort to improve maternal and

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198 HEALTH LITERACY AROUND THE WORLD child health and literacy. The Foundation will develop innovative materi- als inspired and informed by their Baby Basics book and prenatal health literacy program. Work will be implemented with local partners and government agencies. The partnership will support and coordinate the work of front-line health care providers and policy makers by fostering collaboration, increasing capacity and ensuring that health information is accurate, comprehensive and readily available and accessible. The goals of the program are • To provide evidence-based, culturally appropriate pregnancy and parenting materials to underserved families that are attractive, comprehensive and easy to read, and serve as a catalyst for learn- ing and family literacy; • To empower and educate low-income expecting women so they have the skills and the support they need to advocate for them- selves, their babies, families and communities; • To teach health care providers, educators and communities how to respectfully engage, communicate and educate low-income moth- ers during their pregnancy and childbirth; and • To build initiatives to bring communities together to support preg- nant and new mothers’ learning, and ensure families receive com- passionate information and timely care. A small grants component will be awarded to local grassroots organiza- tions to implement the program using the country-specific Baby Basics tools and curriculum. World University Network (WUN) The WUN held a Global Public Health Conference held in May 2012, where their Health Literacy Network held their first workshop to gener- ate ideas about collaborative projects. This initial meeting resulted in five working research groups, centered on the following themes (http://www. wun.ac.uk/research/wun-global-health-literacy-network): • Health literacy conceptual and priority issues • Health literacy in an age of digital communication  • Health literacy and health inequalities • Integrating health literacy into health professional training • Participatory approaches to health literacy research

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APPENDIX A 199 PRELIMINARY SUMMARY AND CONCLUSIONS This discussion paper details the responses received regarding health literacy efforts outside of the United States as well as efforts reported in the European Union and the United Nations. A forthcoming paper will detail responses about health literacy efforts occurring within the United States. That forthcoming paper will also report on efforts sponsored by the business community around the world. Additionally, that forthcom- ing paper will include information on what participants in this process suggest as the best next steps for the field of health literacy and their quantitative assessments of the state of the field of health literacy. Essentially, these two planned discussion papers make up two parts of a larger whole. The decision to separate the information was based on a desire to not create an appearance that health literacy efforts in the United States were any more advanced than in other nations. The amount of data from one nation compared to another or several nations is simply an indication of quantity, not necessarily quality. Additionally, given the vast amount of information collected in this effort, combining the information into one document would have produced a discussion paper that was quite simply impractical in length. Thus, given the amount of information to come in the forthcoming report, the conclusions and recommendations in this initial paper on health literacy activities occurring outside of the United States are necessarily preliminary and constrained. Much of these data could perhaps have been subsumed in analysis versus reported, but there is a certain obligation to participants in such an effort to report their data as accurately and completely as possible from a non-critical perspective. The central aspiration is that this and the forthcoming discussion paper on efforts in the United States will provide a baseline that can and should be used for future study and comparison. The hope is that this effort uncovered a sufficient sample of activities to give an adequate—though incomplete—“taste” of how health literacy is being put to use and diffusing around the world. Clearly, however, the population of interest remains under-sampled—especially in nations where English is not the primary language. Turning to analysis of the information that was gathered and reported, several points seem worth highlighting. First, the reports received from many nations clearly indicate the vital importance of leadership within a governmental structure. When leadership clearly adopts health literacy as an important factor, the results are significant. The vast body of evidence about health literacy supports the active promotion of health literacy by governmental, social, and cultural leaders, but nonetheless uptake among policy makers around the world seems delayed in many—but certainly not all—instances. To those policy makers remaining on the edge of the field as spectators, hopefully this key finding will suggest the presence

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200 HEALTH LITERACY AROUND THE WORLD of a clear opportunity. You will create a positive effect if health literacy is made central to your platform. Second, the importance of engaging broad-based multidisciplinary partnerships is equally clear across the spectrum of information and sources that this effort encountered. A best practice of health literacy is to involve people early and often in order to better engage with their entire life. That inherently requires an integrative approach to be successful, and that is something many health care organizations are just coming to appreciate and embrace. Often, health care facilities may not have the personnel on hand to create an integrative, multidisciplinary effort—but rarely is it the case that an entire community does not have the resources to do so. Thus, creating partnerships across organizations may well be a critically important key to successful health literacy policy and practice efforts. Embracing both those approaches—adopting health literacy at the highest levels of leadership and creating multidisciplinary partnerships between organizations—seems likely to produce even greater progress in addressing health disparities around the world. Several other lessons to policy makers and advocates should be clear as a result of this discussion paper. First, there is more than sufficient technical knowledge in the world to resolve many of the health issues that continue to plague the human population. What has been lacking is the means to effectively translate that knowledge into universal and precautionary action. The primary challenges seem to lie in how robust health literacy is conceptualized and the ability and willingness to engage a diverse group of stakeholders. Next, it seems increasingly clear as a result of this data collection and reporting process that when governments have collected data on the status of health literacy among the populations they serve, they have also created health literacy policies and intervention projects. This proj- ect’s design is limited in its ability to determine whether the data collec- tion prompts policy development, or whether policy development causes data collection efforts, but a relationship clearly exists. A long history of research into health policy and efforts to inform practice with evidence confirms the importance of robust data to support the policy creation processes. Still, that remains a complex relationship that is neither unidi- rectional nor unidimensional. The causality, effectiveness, and outcomes of that relationship will, and should, be subject to continuing analysis. For example, a very promising area for future analysis of this relationship for the field of health literacy is to observe the outcomes to the recently completed survey of health literacy in eight European nations. Many of those nations are not among the leaders in creating health literacy policy to date, according to the results of this effort. The future outcomes of that effort shall help the field discover the direction and strength of the

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APPENDIX A 201 relationship between empirical data collection and policy activity in a variety of geopolitical and social contexts, but only if adequate resources are directed to the evaluation of the outcomes of that measurement effort. Some, however, may question if an emphasis on policy making is warranted in a field that focuses so strongly on empowering individuals and communities to take action. Ironically, an emphasis on individual empowerment could lead to a logical fallacy that health literacy is not a policy-related field, as “top-down” efforts are not the primary or initial goal. However, a primary goal of empowering individuals and com- munities through advancing their health literacy is, in fact, to change or develop policies that produce healthier outcomes for all people. Thus, a monitoring of policy progress is a key indicator of the effectiveness of the field of health literacy and should remain a consideration of those design- ing health literacy interventions. The information gathered in this effort does point out a critically important area for reflection and a strategic choice that faces the field of health literacy. Health literacy efforts are likely under way in every nation around the world. However, many may not have adopted the phrase “health literacy.” An open-ended definition of the concept that accepts all comers has certainly helped the field of health literacy to rapidly grow. This discussion paper makes that growth increasingly clear. However, this effort has also found indications of cracks at the foundation to the field— especially as efforts to introduce health literacy into governmental policy move forward. Despite multiple policy initiatives, there remains to date a lack of a clear and effective approach to incorporating health literacy into policy that moves beyond rhetoric and into regulation that requires health literacy as a universal precaution. The one possible exception that may be emerging is plain language requirements, but those seem to be often either voluntary or not stringently enforced. Further, plain language in and of itself is unlikely to reach the level of effect that can be achieved through a focus on a more robust conceptualization of health literacy. Health literacy, even more clearly as a result of this data collection process, is a socially constructed concept that nearly everyone agrees is important. However, very few seem to agree on what the concept actually represents. The risk to continuing that situation seems clear. If there is not a broadly shared consensus about the definition of health literacy, then the measurement and identification of health literacy remain problematic— and that puts into risk the adoption and effectiveness of policy formula- tions addressing health literacy. Health literacy may well be a field on the verge of needing to make a major, collective decision. One path is to continue with the current status quo that does not demand a certain level of consensus or rigor regarding what is or is not health literacy. This approach, as demonstrated in this

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202 HEALTH LITERACY AROUND THE WORLD discussion paper, has attracted a broad range of interest and activity. A second path is to collectively agree on a core definition of health literacy that makes a distinction between a health literacy effort and, for example, efforts in health education or health communication. Those efforts are certainly not unrelated, but a core definition of the constructs can be delineated, measured, evaluated, and formulated into policy constructs if the will to do so is present. One possible approach to making that distinction, should the field decide to move in that direction, is by defining health literacy as a theo- retical cause of behavior change that produces positive health outcomes. That path would necessitate that studies of health literacy not stop data collection efforts at documenting the acquisition of knowledge or at the change of attitudes. Those outcomes have been historically true of much of health communication and health education—and much of health lit- eracy to date. A more rigorous approach would demand that to be truly health literacy, efforts must demonstrate that the health literacy interven- tion caused behavior changes that produced health effects. In that sense, health literacy could use strategies from health communication and health education, but in many instances those strategies (or theories) would in and of themselves be insufficient to be identified as health literacy. That, in fact, is a very high bar that may even be unattainable. For instance, if this effort had initiated criteria for inclusion such that the collection and reporting of data about changes in health behavior and health status were requisite, at least half—if not vastly more—of the initiatives reported in this and the forthcoming discussion paper would likely have been excluded. Such criteria would have also demanded a nearly universal exclusion of the policy efforts reported around the world as they, by and large, have not been evaluated for outcomes. Looking forward to the completion and distribution of the forthcom- ing discussion paper, it is important to note in closing that there should be much room for optimism given the clear expansion of health literacy that is documented in this initial discussion paper and will continue in the forthcoming paper. Awareness of and use of health literacy has diffused into some of the most remote regions of the world. Health literacy has also diffused into the heart of many of the most populous and connected locations on earth. Both are locations where people can and do experience some of the greatest inequities in health and where a rigorous application of health literacy’s best practices—which we continue to develop—can have a tremendous and positive effect. That reality and the growing awareness of health literacy around the world are outcomes that clearly should be celebrated.

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