Ebook: Health Literacy
While health literacy is a relatively new multidisciplinary field, it is vital to the successful engagement with and communication of health with patients, caregivers, and the public.
This book ‘New Directions in Health Literacy Research, Theory, and Practice’ provides an introduction to health literacy research and practice and highlights similar scholarship in related disciplines. The book is organized as follows: the first chapter explains the still-evolving definition of health literacy; the next three chapters discuss developments and new directions in health literacy research, then a further two chapters are devoted to developments and new directions in health literacy theory. Two chapters explore health literacy interventions for vulnerable populations; four chapters cover health literacy leadership efforts; six chapters describe developments and new directions in disciplines that are similar to health literacy; and six chapters portray diverse health literacy practices. A preface from Richard Carmona M.D., the former U.S. Surgeon General, is included in the book.
Although the book is intended primarily for health literacy researchers, practitioners and students, the diverse topics and approaches covered will be of interest to all healthcare and public health researchers, practitioners, and students, as well as scholars in related fields, such as health communication, science communication, consumer health informatics, library science, health disparities, and mass communication.
As Dr. Carmona concludes in his preface: ‘This is essential reading for all health practitioners.’
‘New directions in health literacy research, theory, and practice’ provides an introduction to health literacy research and practice and highlights similar scholarship in related disciplines. Although the book is intended primarily for health literacy researchers, practitioners and students, the editors suggest the book's diverse topics and approaches are of interest to health care and public health researchers, practitioners, and students in addition to scholars in related fields, such as health communication, science communication, consumer health informatics, library science, health disparities, and mass communication.
Some of the book's chapters on related fields (e.g. shared decision-making, patient engagement, patient activation, health prevention, design science, and mHealth) and related areas (e.g. the U.S. National Cancer Institute's Health Information National Trends Survey) also summarize some current research within each area. The book's editors and authors hope readers will mine individual chapters to write backgrounds for literature reviews well as to plan health literacy (and related) research and practice initiatives as well as interventions.
Organization and Chapter Contents
The book is organized as such: the initial chapter explains the still-evolving definition of health literacy; three chapters discuss developments and new directions in health literacy research; two chapters are devoted to developments and new directions in health literacy theory; two chapters detail health literacy interventions for vulnerable populations; four chapters cover health literacy leadership efforts; six chapters describe developments and new directions in disciplines that are similar to health literacy; and six chapters portray diverse health literacy practices. A preface from Richard Carmona, the former U.S. Surgeon General, is included in addition to this forward.
More specifically, in the book's first chapter Sorensen and Pleasant outline some conceptual differences in health literacy definitions and suggest current disagreements provide a foundation for the evolution of a more comprehensive health literacy definition. Sorensen and Pleasant explain that how health literacy is defined remains a foundational issue for health literacy researchers and practitioners.
The chapters devoted to developments and new directions in health literacy research feature three different themes. The chapter by Nguyen, Paasche-Orlow, and McCormack notes the recent progress and challenges to provide more empirical rigor within existing health literacy measures. The authors also discuss the Health Literacy Tool Shed (that they helped develop) which critiques health literacy tools and enables researchers to assess diverse health literacy measures. The chapter is especially recommended for health literacy scholars who are writing the methods section within a research paper. The chapter by Pelkian and Ganahl summarizes the development, psychometric properties, and results from recent health literacy population surveys within some European Union (EU) nations. Pelikan and Ganahl note the EU survey is integrative and based on 12 published models and 17 definitions of health literacy. The authors provide some specific suggestions to future researchers to measure health literacy in general populations. They report the survey's findings suggest low but varying health literacy levels among the participating nations. In this section's third chapter, Rudd identifies some gaps within the health literacy research literature as well as in health literacy practice. In an environmental scan of current research and practice, Rudd furnishes important issues for future health literacy researchers to consider including increased attention to the institutional and system wide norms, policies, and regulations that facilitate or impede access to health information, services, and care. The chapter is especially recommended for health literacy scholars who are writing the literature review section within a research paper.
The chapters devoted to developments and new directions in health literacy theory cover health literacy and the arts, and the conceptual crossroads between health literacy and health disparities research. Ike, Parker, and Logan describe research that suggests the arts are associated with better health outcomes and explain how this correlation has important implications for health literacy research and practice. The chapter additionally provides a theoretical framework that suggests why the arts may be therapeutic. In the second chapter within this section, Logan argues while health disparities and health literacy research are different disciplines, they share common conceptual foundations. The chapter suggests there are vacuums in current research knowledge that need attention – especially regarding the integration of health literacy and health disparities research to assess the social and structural determinants of health.
The two chapters devoted to health literacy interventions for vulnerable populations discuss initiatives within diverse community settings. A chapter by Smith and Carroll summarizes findings from U.S. social work interventions to improve maternal health within vulnerable populations where health literacy (in conjunction with other variables) is associated with improved health outcomes. Smith and Carroll's comprehensive findings yield an intricate web of interactions that occur among health literacy with other social, structural, cultural, family, and individual determinants of health. In this section's second chapter, Pleasant describes the Canyon Ranch Institute's (CRI) health literacy/integrative health interventions, which serve vulnerable populations in the U.S. and internationally. While Pleasant covers several CRI projects, he highlights a health literacy/theater for health intervention (utilizing community participation) within a low-income area of Lima, Peru that fostered favorable health outcomes.
Four chapters describe an array of health literacy leadership efforts. Hernandez, French, and Parker outline some of the initiatives launched by the U.S. National Academies of Sciences, Engineering, and Medicine's Roundtable on Health Literacy since its inception in 2004. The authors provide an overview of the Roundtable's contributions to health literacy. Hernandez, French, and Parker note the Roundtable has focused on evidence-based health literacy approaches that foster high-quality, patient centered care. Baur, Harris, and Squire explain the developments that prompted the 2010 U.S. National Action Plan to improve health literacy and note how the planning and activities associated with the effort became a model for positive organizational change. Brach describes the advancement of now-widely used criteria to assess and implement health literacy initiatives and perspectives within health care organizations. Brach explains the progress of health care organizations as they journey from implementing discrete health literacy initiatives to adopting a systems perspective focused on becoming health literate organizations. Besides providing some background about the criteria's development, Brach profiles some implementation efforts within three U.S. health care organizations (Carolinas Healthcare System, Intermountain Health, and Northwell Health). In this section's last chapter, Aldoory tracks health literacy higher education and related professional training efforts in the U.S. Aldoory's overview is one of the first efforts to describe health literacy higher education activities; she provides a case example that notes how policy developments in one U.S. state (Maryland) impacted the role of health literacy in professional higher education.
The six chapters devoted to developments and new directions in disciplines similar to health literacy describe six separate fields that provide collaborative opportunities for health literacy researchers and practitioners. Hibbard describes some similarities and differences between patient activation and health literacy research. Hibbard also provides a helpful summary of patient activation research in the U.S. and other nations. Stacey, Hill, McCaffery, Boland, Lewis, and Horvat review shared decision making's theoretical and empirical underpinnings and note the research's implications for health literacy scholarship. Stacey, Hill, McCaffery, Boland, Lewis, and Horvat provide international examples and suggest the integration of health literacy principles is important to develop interventions that facilitate shared decision making and essential to overcome the inequalities among patients with varying health literacy levels. Krist, Tong, Aycock, and Longo describe recent research efforts to engage patients in decision-making and behavior change to promote health care prevention. The authors note the theoretical underpinnings of engagement, the systems required to better support patient engagement, how social determinants of health influence patient engagement, and practical examples to demonstrate approaches to better engage patients in their health and wellbeing.
In one of the other three chapters within this section, Neuhauser provides an introduction to participatory design theory and endorses more collaboration between participatory design and health literacy researchers. Neuhauser supplies some research tips and case examples for researchers, practitioners, and policymakers. Hesse, Greenberg, Peterson, and Chou explain that the U.S. National Cancer Institute's Health Information National Trends Survey (HINTS) provides a downloadable, generalizable data set about how consumers utilize cancer health information resources. Hesse, Greenberg, Peterson, and Chou provide some HINTS-derived research that addresses consumer health engagement, consumer health informatics, consumer health awareness, and media utilization. In the last chapter in this section, Kreps describes the interactions between mHealth, health communication, consumer health informatics, and health literacy research. Kreps also addresses the use of mHealth in successful consumer health interventions and notes its potential for future use in health literacy initiatives.
The book's remaining six chapters provide a range of innovative health literacy practices. In the first of two chapters (by a team of international authors from diverse nations), Rowlands, Dodson, Leung, Levin-Zamir et. al. discuss how diverse global health systems and policy development provide opportunities for health literacy research, theory, and practice. The authors suggest a health literacy framework provides a pragmatic way to address health inequities and monitor progress across policy domains. In their second chapter, Levin-Zamir, Leung, Dodson and Rowlands et. al. note how individual, family, community, and cultural health challenges within diverse international settings impact health literacy initiatives as well as provide opportunities for health literacy researchers and practitioners. Among other issues, the authors note current cultural competence gaps among international health care providers exemplify how capacity building in health literacy is critical to improve a nation's health care delivery system. In the third chapter within this section, Whitney, Keselman, and Humphreys provide an overview of how libraries and librarians have contributed to health literacy practice and research. Whitney, Keselman, and Humphreys explain libraries often provide advantageous settings for health literacy initiatives and the authors encourage the collaborative participation of libraries and librarians in future health literacy research.
In the three remaining chapters within this section, Villaire, Gonzalez, and Johnson describe how health literacy initiatives contribute to innovative approaches in chronic disease management. Villaire, Gonzalez, and Johnson add the inclusion of health literacy assessment tools optimizes validation efforts within chronic disease management research. Kurtz-Rossi, Rikard, and McKinney describe how the U.S.-based Health Literacy Discussion List (which is an interactive listserv) yields ongoing data about contemporary topics of interest to health literacy practitioners. The authors' findings suggest the Health Literacy Discussion List provides a platform to share information and resources, announcements and calls for action, technical assistance, and professional discourse. In the book's final chapter Roberts, Callahan, and O'Leary describe the U.S.-based, Health Literacy Media's efforts to elevate health literacy via the use of social media. Roberts, Callahan, and O'Leary find social media are an effective mass communication tool for health promotion and health literacy initiatives. The authors provide tips for practitioners to use in future social media/health literacy efforts intended for vulnerable populations as well as other audiences.
Diversity of Nations, Institutions, and Universities Among the Book's Authors
The book's authors represent diverse nations including: Australia; Brazil; Canada; China; Denmark; India; The Netherlands; United Kingdom; and the United States.
Represented international colleges and universities include: Boston College; Boston University; Emory University; George Mason University; Harvard University; Michigan State University; Tufts University; Virginia Commonwealth University; University of California-Berkeley; University of Maryland, University of Oregon; University of Washington; Mayo Clinic College of Medicine; University of Ottawa; University of Vienna, University of Newcastle; La Trobe University; Aarhaus University; Hong Kong Polytechnic University; University of Haifa; Manipal University; Brazilian National School of Public Health; and Deakin University.
Represented international health care institutions and organizations include: the Global Health Literacy Academy; International Health Literacy Association; Canyon Ranch Institute/Health Literacy Media; RTI International; U.S. National Library of Medicine; U.S. National Cancer Institute; U.S. Office of the Surgeon General; Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services; U.S. Agency for Healthcare Research Quality; U.S. National Academies of Sciences, Engineering, and Medicine; Mayo Clinic; Clalit Health; Institute for Healthcare Advancement; Victoria State Department of Health and Human Services; Fred Hollows Foundation; Bundesministerium fur Gesundheit und Frauen; and the Community Health and Learning Foundation.
Overall, ‘New directions in health literacy research, theory, and practice’ took about 26 busy months from start to finish. It began during Elliot Siegel's consultation visit to the U.S. National Library of Medicine (NLM) in spring 2015 when he told Rob Logan about a publishing initiative from IOS Press called ‘Studies in Health Technology and Informatics.’ Logan responded by preparing an outline of 26 chapters designed to cover contemporary health literacy theory and research as well as some developments in related disciplines in the U.S. and around the world. In the outline, Logan suggested the book's eventual title and recommended that he co-edit the volume with Siegel, NLM's emeritus Associate Director of Health Information Programs and Outreach.
To Logan's delight, IOS Press quickly embraced the outline's plans and initial invitations were sent to selected authors in summer 2015. Twenty-two months later, Logan and Siegel are pleased to report that 23 of the 24 of the current book's chapters are authored or co-authored by the originally invited contributors – and 23 of the 24 topics are either identical or highly similar to the ideas suggested within the initial invitations. The book's editors note the impressive participation by the original authors suggests the interest and pent-up demand to write a book about diverse aspects of health literacy research and practice. To put this another way, Logan and Siegel benefitted from an unprecedented rate of contributor acceptance, perseverance, cooperation, and occasional enthusiasm.
Most of the book's chapters were written and current as of late fall and winter 2016-17. The book was edited to foster some consistency in the quality of writing among and between chapters, which befits the book's health literacy focus. Yet, as explained in the first paragraph, the book was edited for health literacy researchers and practitioners rather than the general public.
Full disclosure: some of the book's chapters have been published in Information Services and Use with the consent of IOS Press (which is the publisher of the latter journal, this book, and the ‘Studies in Health Technology and Informatics’ initiative). Previous NLM contracts helped support the research presented in the chapter by Sandra Smith and Lauren Carroll and the development of the Health Literacy Tool Shed (described by Nguyen, Paasche-Orlow, and McCormack in their chapter).
Logan and Siegel are proud to have been associated with this book's development. We especially thank Betsy Humphreys MLS, who was NLM's acting director at the time of the book's inception (and co-authored a chapter) as well as Patricia Flatley Brennan Ph.D., who became NLM's director in September 2016. Brennan and Humphreys graciously supported Logan's time commitment to provide original contributions and serve as the book's co-editor.
The editors also gratefully acknowledge the interest in this book's development from diverse members of the U.S. National Academies of Sciences, Engineering, and Medicine's Roundtable on Health Literacy and the new International Health Literacy Association. Some of the ideas for the book's topics (as well as some authors) came from members of these organizations. In addition to our kudos to all of the book's authors and Kairi Look, Paul Weij, Kim Willems, and Arnoud de Kemp @ IOS Press, the editors thank Rachel Fudge (a free lance editor in San Francisco, CA.), for her assistance in the conversion of some manuscripts to meet IOS Press' technical publication requirements.
We hope ‘New directions in health literacy research, theory, and practice’ attains the 2015 request to the initial invitees to ‘create a gem.’
Robert A. LOGAN
Ph.D. U.S. National Library of Medicine
This chapter aims to provide an overview of health literacy definitions, how the definitional work on health literacy has developed, and why it is important to understand the conceptual differences among diverse definitions. Since the introduction of the term ‘health literacy’ in the 1970s, research interest has grown exponentially.
Advancing health literacy (HL) research requires high-quality HL measures. This chapter provides an overview of the state of the science of HL measurement: where the field started, currently is, and should be going. It is divided into eight key sections looking at (1) the history of HL measurement, (2) the relationship between HL definitions and measurement, (3) the HL conceptual domains most and least frequently measured, (4) the methods used to validate HL measures, (5) the characteristics of the participants in the measurement validation studies, (6) the practical considerations related to administering HL measures, (7) the advantages and disadvantages of using objective versus subjective HL measures, and (8) future directions for HL measurement.
Based on the material presented in this chapter, the following conclusions can be drawn. First, there is an enormous proliferation of HL measures and this growth presents both opportunities and challenges for the field. Second, to move the field forward, there is an urgent need to better align HL measurement with definitions of HL. Third, some HL domains, such as numeracy, are measured more often than others, such as speaking and listening. Consequently, it is important to think about novel mechanisms to measure HL domains that are rarely measured. Fourth, HL measures are most often developed, validated, and refined using classical measurement approaches. However, strong empirical and practical rationales suggest making an assertive shift toward using modern measurement approaches. Fifth, most HL measures are not well validated for use in minority populations; consequently, future validation studies should be mindful of validation samples. Sixth, HL measures can be administered using multiple modes, most frequently via paper-and-pencil surveys. Identifying which mode of administration is most suitable requires reflecting on the underlying measurement purpose and the characteristics of the participants being measured. These considerations should also be made when deciding between a subjective versus objective HL measure.
Cumulatively, this chapter provides tools to help readers select and use the most appropriate measures of HL for their needs. It also provides rationale and strategies for moving the science of HL measurement forward.
This chapter is concerned with the difference of measuring health literacy of general population for purposes of public health as differentiated from measuring personal health literacy of individuals within health care services. The evolution of concept, measurement and empirical research of health literacy in the last decades is discussed, and the position of measuring comprehensive health literacy in general populations, especially by the European Health Literacy Survey (HLS-EU) study, is defined.
Main features of the HLS-EU conceptual and logic model, definition, instruments and study design are described. General results of the HLS-EU study are presented on the distribution of health literacy, its determinants and health related consequences, for the eight involved European countries as well as the total sample. These results principally confirm findings of earlier studies with somewhat different instruments and other kinds of samples, but also demonstrate considerable differences in distributions of health literacy and its relationships with relevant variables among and between the eight countries in a standardized comparative international study.
Follow-up studies based on the original HLS-EU study are mapped. In addition, the factors for the relative easy and widespread use of the instrument and research methodology by similar studies in other countries in Europe and Asia are discussed. This chapter closes with an outlook on the challenges of further developments and take-ups.
Definitions, by their very nature, establish a shared understanding of words and concepts but also set parameters for inquiry and measures. Health literacy, a term that emerged in the 1990s, has been defined in numerous ways over time and is still considered an evolving concept. This chapter provides a discussion of the difficulties inherent in restricted definitions that have led to research gaps. The discussion highlights the need for an expanded understanding of health literacy and it identifies missing elements. A call for new measures includes attention to a full range of literacy skills including calibrations of health professionals' communication skills. In addition, it argues for an in-depth understanding of health-related tasks and texts that will yield insights for a more thorough analysis of links between and among literacy skills, health system demands, and health outcomes. Finally, this chapter presents an argument for a careful consideration of institutional and system wide norms, policies, and regulations that facilitate or impede access to health information, services, and care. As the definition of health literacy expands so too can the scope and depth of health literacy research, practice implementation, and public policy.
Historically, study and implementation of health literacy mostly focused on text-based information with frequent attention to medical and health related content within an increasingly complex healthcare system. This chapter introduces visual literacy, particularly as it relates to the visual arts, as a potentially understudied and underutilized component of health literacy that might offer benefit to both patients and healthcare workers. Literacy is both content and context specific. We posit that interaction with the arts improves the ability to appreciate the context inherent within communication across cultures and belief systems.
This chapter compares the conceptual foundations of health literacy and health disparities. It details some of the conceptual differences between health literacy and health disparities and explains some similarities that suggest the need for increased research collaboration. The chapter is among the first to address the structural and social determinants of health together and explain that future research needs to assess their interactions.
Overall, the chapter creates a conceptual foundation as well as challenges future scholars/practitioners to take more multidimensional approaches to assess health's determinants. The chapter also attempts to demonstrate there is nothing more practical than good theory, or clear conceptual foundations.
The chapter is divided into four sections that address the following topics: three conceptual frameworks about the determinants of health; opportunities in health disparities and health literacy research; seeking an expanded, multidimensional conceptual approach to health literacy and health disparities research; as well as a conclusion. The chapter suggests there are vacuums in current research knowledge that need future attention – especially regarding the integration of health literacy and health disparities research.
Canyon Ranch Institute and Health Literacy Media are a 501(c)3 non-profit public charity working to improve health based on the best evidence-based practices of health literacy and integrative health. As an organization, we offer a spectrum of health literacy work extending from plain language services to intensive community-based interventions. (See www.canyoranchinstitute.org & www.healthliteracy.media) In this chapter, we discuss the methodologies and outcomes of two of those community-based interventions – the Canyon Ranch Institute Life Enhancement Program and our Theater for Health program. Perhaps uniquely, an underpinning approach to both efforts is based on the increasing body of evidence of health literacy as a social determinant of health. Therefore, our research and evaluation of these programs captures not only changes in knowledge, attitudes, and beliefs but explicitly includes changes in informed behavior change and objective health outcomes as well. Our work makes it clear – that if you engage people in a health literate approach to informed behavior change (and respect their knowledge of their own lives and context) you can help people help themselves to better health. Further, from the perspective of health as a right and a resource for living, we find people who advance their health use this resource to continually better their own and their family's lives as well as the communities where they live. Hopefully, the examples provided in this chapter provide a sense of direction and motivation to others to fully explore the potential of health literacy to improve health and well-being, increase satisfaction with life, and produce health outcomes at a lower cost.
Scientific discovery and global health policy are moving health literacy promotion and maternal-child health from the fringes of research and public health to the forefront of healthcare reform . In 2011 the United Nations General Assembly adopted the Shanghai Declaration . The Declaration highlights new understanding of the origins of health and disease in early development. It calls on all nations to apply this knowledge to reduce the burdens of chronic disease and related disparities worldwide. The Declaration recommends a specific intervention strategy: promote health literacy across the life course, particularly in parents and children, and empower women.
This chapter explores findings and implications of the Life Skills Progression Maternal Health Literacy studies. These LSP-MHL studies evaluated implementations of an intervention designed to promote health literacy in parents and empower women in the U.S. First, the chapter reports findings of the most recent of five published LSP-MHL studies with discussion of its implications for future work in this line of inquiry. A postscript highlights two of many implications of the LSP-MHL intervention studies for health literacy research in the third era of modern healthcare.
In 2004 the Institute of Medicine (IOM) report, Health Literacy: A Prescription to End Confusion, highlighted that “efforts to improve quality, to reduce costs, and to reduce disparities cannot succeed without efforts to improve health literacy” . The IOM report emphasized that poor health literacy is a major challenge for individuals who need to find, understand, and use information to make informed decisions for health. Following the publication of the 2004 report and in response to rising interest in health literacy in the U.S., the IOM established the Roundtable on Health Literacy. Roundtables convene a broad array of stakeholders from foundations, health plans, associations, government, private companies, and patient and consumer groups to discuss challenges and provide a forum for exchange of knowledge and expertise. The Roundtable does not make recommendations, rather its mission is to inform, inspire, and activate diverse U.S. (and potentially international) stakeholders. The Roundtable's activities support the development, implementation, and sharing of evidence-based health literacy practices and policies. The Roundtable's goal is to improve the health and well-being of Americans as well as persons in other nations.
Since its inception, the Roundtable has explored ways in which health literacy relates to a diverse array of topics from medications to oral health to public health to health equity and more. In particular the Roundtable has served to highlight the issues central to the alignment of system demands and complexities with individual skills and abilities. Roundtable workshops and discussions, no matter the specific topic, maintain a focus on identifying and illuminating evidence-based health literacy approaches that foster high-quality, patient centered care. The work of the Roundtable has been used throughout the United States and globally to foster health literate organizations and approaches to improving patient-centered care and the health of populations. Going forward the Roundtable's efforts will continue to build upon past work, strive to maintain relevance to the field, and encourage and engage others in advancing our nation's health.
This chapter presents the U.S. National Action Plan to Improve Health Literacy and its unique contribution to public health and health care in the U.S. The chapter details what the National Action Plan is, how it evolved, and how it has influenced priorities for health literacy improvement work. Examples of how the National Action Plan fills policy and research gaps in health care and public health are included. The first part of the chapter lays the foundation for the development of the National Action Plan, and the second part discusses how it can stimulate positive organizational change to help create health literate organizations and move the nation towards a health literate society.
A health literate health care organization is one that makes it easy for people to navigate, understand, and use information and services to take care of their health. This chapter explores the journey that a growing number of organizations are taking to become health literate. Health literacy improvement has increasingly been viewed as a systems issue, one that moves beyond siloed efforts by recognizing that action is required on multiple levels. To help operationalize the shift to a systems perspective, members of the U.S. National Academies of Sciences, Engineering, Medicine Roundtable on Health Literacy defined ten attributes of health literate health care organizations.
External factors, such as payment reform in the U.S., have buoyed health literacy as an organizational priority. Health care organizations often begin their journey to become health literate by conducting health literacy organizational assessments, focusing on written and spoken communication, and addressing difficulties in navigating facilities and complex systems. As organizations' efforts mature, health literacy quality improvement efforts give way to transformational activities. These include: the highest levels of the organization embracing health literacy, making strategic plans for initiating and spreading health literate practices, establishing a health literacy workforce and supporting structures, raising health literacy awareness and training staff system-wide, expanding patient and family input, establishing policies, leveraging information technology, monitoring policy compliance, addressing population health, and shifting the culture of the organization.
The penultimate section of this chapter highlights the experiences of three organizations that have explicitly set a goal to become health literate: Carolinas Healthcare System (CHS), Intermountain Healthcare, and Northwell Health. These organizations are pioneers that approached health literacy in a systematic fashion, each exemplifying different routes an organization can take to become health literate. CHS provides an example of how, even when the most senior leadership drives the organization to become health literate, continued progress requires constant reinvigoration. At Intermountain Healthcare, the push to become a health literate organization was the natural consequence of organizational adoption of a model of shared accountability that necessitated patient engagement for its success. Northwell Health, on the other hand, provides a model of how a persistent champion can elevate health literacy to become a system priority and how system-wide policies and procedures can advance effective communication across language differences, health literacy, and cultures.
The profiles of the three systems make clear that the opportunities for health literacy improvement are vast. Success depends on the presence of a perfect storm of conditions conducive to transformational change. This chapter ends with lessons learned from the experiences of health literacy pioneers that may be useful to organizations embarking on the journey. The journey is long, and there are bumps along the road. Nonetheless, discernable progress has been made. While committed to transformation, organizations seeking to be health literate recognize that it is not a destination you can ever reach. A health literate organization is constantly striving, always knowing that further improvement can be made.
This chapter marks the territory and leadership potential found in research, practice and policy related to the role of health literacy in higher education and professional training. There is limited published work that has summarized the role and scope of health literacy in higher education and professional training. This chapter will provide a review of the research in the area, a description of some of the educational practices in health literacy, and a case example of how policy might influence the role of health literacy in professional higher education.
In this paper we define health literacy and patient activation, discuss how each construct is measured, and review the evidence linking each construct to outcomes.
Studies indicate that health literacy and patient activation are separate concepts that are only moderately correlated with each other. The studies indicate that patient activation and health literacy can each make independent contributions to outcomes. This is important, as it indicates the need to attend to both health literacy and patient activation in the design of interventions. This means that interventions that are successful in increasing health literacy will not necessarily also influence patient activation, and interventions that are successful in increasing patient activation will not necessarily also influence health literacy. Both are likely necessary.
The studies show that patient activation is often a stronger predictor of behaviors and health outcomes than is health literacy, however, health literacy is sometimes a stronger predictor of understanding and using information for choice. Some of the differences observed in these studies reflect the fact that health literacy is primarily a skills based concept, and patient activation includes skills, but also includes confidence, beliefs, and role expectations. These differences suggest different pathways for effectively intervening to improve outcomes. The implications for interventions and research directions are discussed.
Basic health literacy is required for making health decisions. The aim of this chapter is to discuss the use of shared decision making interventions for supporting patient involvement in making health decisions. The chapter provides a definition of shared decision making and discusses the link between shared decision making and the three levels of health literacy: functional, communicative/interactive, and critical. The Interprofessional Shared Decision Making Model is used to identify the various players involved: the patient, the family/surrogate/significant others, decision coach, and health care professionals. When patients are involved in shared decision making, they have better health outcomes, better healthcare experiences, and likely lower costs. Yet, their degree of involvement is influenced by their level of health literacy.
Interventions to facilitate shared decision making are patient decision aids, decision coaching, and question prompt lists. Patient decision aids have been shown to improve knowledge, accurate risk perceptions, and chosen options congruent with patients' values. Decision coaching improves knowledge and patient satisfaction. Question prompts also improve satisfaction. When shared decision making interventions have been evaluated with patients presumed to have lower health literacy, they appeared to be more beneficial to disadvantaged groups compared to those with higher literacy or better socioeconomic status. However, special attention needs to be applied when designing these interventions for populations with lower literacy. Two case exemplars are provided to illustrate the design and choice of interventions to better support patients with varying levels of health literacy.
Despite evidence indicating these interventions are effective for involving patients in shared decision making, few are used in routine clinical practice. To increase their uptake, implementation strategies need to overcome barriers interfering with their use. Implementation strategies include training health care professionals, adopting SDM interventions that target patients, such as patient decision aids, and monitor patients' decisional comfort using the SURE test. Integrating health literacy principles is important when developing interventions that facilitate shared decision making and essential to avoid inadvertently producing higher inequalities between patients with varying levels of health literacy.
Effectively engaging patients in their care is essential to improve health outcomes, improve satisfaction with the care experience, reduce costs, and even benefit the clinician experience. This chapter will address the topic of patient engagement directly and review the relationships between health literacy and patient engagement. While there are many ways to define patient and family engagement, this chapter will consider engagement as “patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system – direct care, organizational design and governance, and policy making – to improve health and health care .” We will specifically focus on the patient engagement and health literacy needs for three scenarios (1) decision-making, (2) health behavior change, and (3) chronic disease management; we will include the theoretical underpinnings of engagement, the systems required to better support patient engagement, how social determinants of health influence patient engagement, and practical examples to demonstrate approaches to better engage patients in their health and wellbeing. We will close by describing the future of patient engagement, which extends beyond the traditional domains of decision-making and self-care to describe how patient engagement can influence the design of the healthcare delivery system; local, state, and national health policies; and future research relevant to the needs and experiences of patients.
Health communication is an essential health promotion strategy to convert scientific findings into actionable, empowering information for the public. Health communication interventions have shown positive outcomes, but many efforts have been disappointing. A key weakness is that expert-designed health communication is often overly generic and not adequately aligned with the abilities, preferences and life situations of specific audiences. The emergence of the field of health literacy is providing powerful theoretical guidance and practice strategies. Health literacy, in concert with other determinants of health, has greatly advanced understanding of factors that facilitate or hinder health promotion at individual, organizational and community settings. However, health literacy models are incomplete and interventions have shown only modest success to date. A challenge is to move beyond the current focus on individual comprehension and address deeper factors of motivation, self-efficacy and empowerment, as well as socio-environmental influences, and their impact to improve health outcomes and reduce health disparities.
Integrating participatory design theory and methods drawn from social sciences and design sciences can significantly improve health literacy models and interventions. Likewise, researchers and practitioners using participatory design can greatly benefit from incorporating health literacy principles into their efforts. Such interventions at multiple levels are showing positive health outcomes and reduction of health disparities, but this approach is complex and not yet widespread. This chapter focuses on research findings about health literacy and participatory design to improve health promotion, and practical guidance and case examples for researchers, practitioners and policymakers.
The contemporary healthcare system can help improve health literacy outcomes in two ways: first, by nurturing the skills and motivations needed for patients to be actively engaged in their own health and healthcare decisions; and, second, by creating a prepared and proactive healthcare system that adapts to patients' capacities and needs in efficacious ways. In 2001, the National Cancer Institute launched the Health Information National Trends Survey (HINTS) as a way for researchers and planners to understand how the public is interacting with a rapidly changing health information environment. Original iterations of the HINTS national probability sampling strategies took place on a biennial basis, but in subsequent years the protocol moved to a yearly administration. This yields a rich resource of cross-sectional, national surveillance data to evaluate for trends across and within vulnerable populations. Sixteen studies are presented from the published literature to illustrate how HINTS data were used to explore constructs of direct interest to health literacy researchers. Suggestions are given for how this ongoing public surveillance mechanism can be used: (a) to provide a sentinel view of how the public is interacting with information in the environment to address their health needs; (b) to generate research questions and hypotheses for further exploration using complementary methodologies; and (c) to explore the diffusion of new health communication channels within and between segments of the national population.
This chapter examines the importance of health literacy to the design and use of mobile digital health information technology (mHealth) applications. Over the past two decades mHealth has evolved to become a major health communication channel for delivering health care, promoting health, and tracking health behaviors. Yet, there are serious communication challenges that must be addressed concerning the best way to design and utilize mHealth application to achieve key health promotion goals, including assuring the appropriateness and effectiveness of mHealth messaging for audiences with different communication competencies, styles, and health literacy levels, to ensure that mHealth applications are truly effective tools for health promotion.
Health literacy is one of the major communication issues relevant to the effective use of mHealth. To be effective, mHealth applications need to match the messages conveyed via these mobile media to the specific health communication needs, orientations, and competencies of intended audience members. Unfortunately, current evidence suggests that many mHealth applications are difficult for audiences to utilize because they provide health information that is not easy for many consumers to understand and apply.
Health literacy refers to the ability of participants within the health care system to accurately interpret and utilize relevant health information and resources to achieve their health goals. Evidence suggests that many consumers possess limited levels of health literacy to adequately understand health information, especially when they are feeling ill, since health literacy is both a trait (limited education, language facility, etc.), and a state condition (based on how their current physical and mental states influence their abilities to communicate effectively). Therefore, it is incumbent upon mHealth developers to design and utilize message systems. Strategies for designing and implementing mHealth applications to meet the health literacy levels of different audiences are described in this chapter.