1. Introduction

‘Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines’ covers contemporary health literacy research and practice and is divided into three sections. Section one explores health literacy’s capacity to foster progress in clinical practice and public health. Section two provides insights into health literacy initiatives and lessons learned – from diverse health care stakeholders. Section three details health literacy’s similarities with – and differences from – related health research disciplines.

The book combines chapters and reports. While the book’s reports are shorter and focus on health literacy practices by diverse organizations, the chapters update readers on health literacy’s diverse research contributions and address theoretical and multidisciplinary issues (where relevant). While section one contains both reports and chapters, section two is composed of reports and section three features chapters.

To avoid repetition, this preface provides an overview of the book’s balance of contributions regarding health literacy (HL) research and HL practice rather than providing a summary of each contribution. The book contains a table of contents, which provides a section-by-section list of all the book’s authors and chapters. In addition, each of the book’s 40 contributions are discussed and many are contextualized within summaries at the end of each section. The author shared the latter responsibility with Cynthia Baur, Ph.D., the practice editor of Health Literacy Research and Practice.

The book’s balance between health literacy research and practice is a response to the feedback the editors received about their 2017 health literacy volume, which emphasized HL theory and research. The current book’s dedication to Dr. Donald A.B. Lindberg (the late, director emeritus of the U.S. National Library of Medicine – NLM) partially is derived from his January 2018 encouragement to provide more examples of health literacy practice interspersed with research developments “in the next book [1].” Both the author and Elliot Siegel, the book’s co-editors, were members of Dr. Lindberg’s senior staff @ NLM. Dr. Lindberg died unexpectedly in August 2019 while this book was well underway. In fact, one of the last things Dr. Lindberg did was to email the current author about the book’s progress prior to the accident that led to his untimely death.

For the readers of the 2017 health literacy book (that the author and Elliot Siegel also co-edited), the differences herein are: the aforementioned balance; the inclusion of contributions devoted to HL practices from diverse organizations in reports; an extension and update of HL research; and the addition of three section summaries that provide an overview with pertinent commentary [2–3].

2. The Book’s Topics

The 21 reports that focus on health literacy practices are organized into reports about HL interventions in the U.S. such as:

• Successful child immunization programs in medically underserved Milwaukee neighborhoods [4];

• Improved self-management via health information initiatives in New York City Latino neighborhoods [5];

• Boosting clinical trial awareness and preventive colorectal cancer screening in rural Louisiana [6].

The 21 reports that focus on health literacy practices are organized into reports about interventions in other nations such as:

• Population health literacy improvements and their policy impacts in Austria [7];

• Health awareness among public employees in Malaysia [8];

• Improving childhood immunization rates and health self-management in Israel [9]

• Development of the Danish Health Literacy Network and the Dutch Health Literacy Alliance as well as HL research and other initiatives in Denmark and the Netherlands [10].

The 21 reports that focus on HL practices include programs from governmental agencies, such as:

• The benefits of audience testing to improve consumer understanding from the U.S. Food and Drug Administration [11];

• The Science Ambassador Fellowship program, HL training, tools, and action plans from the U.S. Centers for Disease Controls and Prevention [12];

• The impact of an internal HL plan to develop measures, improve the evidence base, and enhance evidence-based research and practice approaches at the U.S. Agency for Healthcare Research and Quality [13];

• The impact of the Wisconsin, Kentucky, and Massachusetts Area Health Education Centers to foster a more health literate workforce from the U.S. Health Resources and Services Administration [14];

• The origin, overview, content, and future direction of MedlinePlus.gov at the U.S. National Library of Medicine [15];

• The role of health literacy within a broader health prevention agenda at the New York State Dept. of Public Health [16];

• Improving digital health information tools for the public via the use of health literacy principles from the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services [17].

• Using HL to boost adult health learning and understanding of prescription medication labels in Wisconsin [18];

• Building health literacy organizations and coalitions in Canada, Africa, Asia, the U.S. state of Georgia, and globally with the International Health Literacy Association [19].

• The Universal Patient Language project to boost patient understanding of drug safety information from Bristol-Myers Squibb [20];

• How public understanding, the design, and conduct of clinical trials are enhanced by incorporating health literacy principles from Health Literacy Media [21];

• Assisting Southern California parents with child health information as well as helping senior citizens prevent falls and understand aging from the Institute for Healthcare Advancement [22].

Other reports about health literacy practices include:

• Using health literacy to enhance professional career resilience (and decrease burn out) among medical students at Stony Brook University [23];

• Podcasts that discuss an array of health literacy issues and best practices, as well as introduce listeners to HL practitioners [24].

Turning now to the book’s chapters, the 19 contributions that focus on HL research include a focus on clinical research, such as:

• An overview of health literacy research including how HL impacts: disease knowledge; medication knowledge and understanding; health prevention behaviors; illness and medication beliefs; as well as HL’s impact on clinical health outcomes [25];

• Specific examples of HL research in pediatrics that includes HL’s impact on: child and adolescent medication adherence; immunizations, injury prevention; tobacco and alcohol use; nutrition; physical activity; screen time; obesity; diabetes; and health through the life course. The chapter includes a discussion of gaps in the current literature [26];

• How HL research impacts the reduction and prevention of dental cavities and periodontal diseases as well as fosters the evolution of oral health literacy programs [27];

The 19 contributions that emphasize research include chapters that focus on HL and leadership within the health professions, such as:

• How health literacy initiatives contribute to develop the Quadruple Aim in clinical care. (The quadruple aim strives to: enhance the quality of care; advance the health of communities; reduce costs; and improve the care and experience of patients and providers) [28];

• A specific example of how to advance the quadruple aim through bidirectional clinical care. The chapter proposes a new bidirectional perspective on HL’s contribution to clinical medicine [29].

The 19 contributions that emphasize research include chapters that address HL’s importance from a public health perspective. These chapters note:

• How the broader acceptance of – and support for – HL in the U.S. depends on: developing an epidemiology of health literacy; agreement on standards to educate and train health professionals; providing materials and conduct organizational assessments; and more health literacy impact assessments (so previously hidden or minimized health literacy effects from health, education, and social polices become visible and measurable) [30];

• How the international advancement of health literacy depends on interventional research that yields practical and implementable solutions which inform future policy, strategy, and priorities. The chapter also addresses the need for HL interventions within diverse community settings [31];

• How the World Health Organization’s (WHO) international conferences contribute an ethical foundation for HL work and promote an agenda for the sustainable development of global health. The chapter adds the WHO’s HL findings suggest some of the challenges facing HL research and practice around the world [32].

The 19 contributions that emphasize HL research include contributions which focus on health literacy law and policy, such as:

• A proposed integrated measure of health literacy, language access, and cultural competency that could improve institutional assessment, contribute to quality improvement efforts, and demonstrate a recommitment to patient and family-centeredness as well as equity in clinical care [33];

• A review of the incorporation of HL and patient understanding requirements within the diverse laws and policies that impact health care. The chapter helps healthcare providers, hospital executives, biomedical researchers, industry sponsors, and public health professionals better understand the regulatory trend towards health literacy in the U.S. and how stakeholders can use these embedded sources of authority to advocate for change in their respective areas [34].

Consistent with the book’s title, the 19 chapters that emphasize HL research include contributions which focus on the interaction (and intersection) of health literacy with similar research disciplines including:

• Health literacy and health communication [35];

• Social media, health literacy, peer-to-peer communication, and public understanding [36];

• Health literacy and patient empowerment [37];

• Health literacy and health education [38];

• Health literacy and health journalism [39];

• Arts appreciation, health literacy, and clinical practice [40];

• Health literacy and health disparities. The latter chapter provides a new theoretical framework for health literacy and health disparities research [41].

Other HL research issues in the book focus on:

• The importance of improving health literacy across the lifespan. Early childhood vaccinations, alcohol intake in adolescence, and dementia care in older adults are suggested to demonstrate the need for improved health literacy across the life course. The chapter also draws on digital health data and technology and multisectoral partnerships to define the future of health literacy [42];

• How a health literacy survey in the European Union was adopted for widespread international use and fostered a new, revised HL survey instrument (HLS19), which is planned to be partly or comprehensively administered in about 16 initially participating nations [43].

3. Lessons Learned

The diverse lessons learned about health literacy that emerge from the reports and chapters in this book include:

In clinical practice:

• Advancing health literacy is integral to quality improvements in clinical medicine

• The link between health literacy and improved patient outcomes is evidence-based within some specific areas of clinical practice, such as pediatrics and oral health

• Advancing health literacy issues within health care organizations is a strategy to address the Quadruple Aim

• Limited health literacy is associated with poorer health-related knowledge, poorer overall health status, greater rates of urgent healthcare utilization and hospitalization, and higher mortality

• Health literacy is part of a bidirectional clinical approach to improve patient care and rededicate a health care organization to patient satisfaction and empowerment

• A combined measure of cultural competence, language access, and health literacy fosters a strategic approach to quality improvement for health care organizations

• In addition to medical centers, clinics, and physician’s offices, health literacy is advanced by: governments; non-governmental organizations; attorneys, courts and legislators; insurers; the pharmaceutical industry; health care for-profit and non-profit corporations/organizations, public health agencies; medical/health professional education; higher education; K-12 education; public and health professional interest organizations; as well as others

• The opportunities to elevate or adversely impact health literacy also exist in non-traditional settings such as: community interactions; mass media, social media, news media; architectural, drama and other fine arts; and in the law.

• Advancing health literacy is the responsibility of all of health care’s stakeholders.

In public and global health:

• Improving individual and population health literacy is a global challenge

• Advancing population health literacy is integral to improving public health

• Health literacy is integral to an improved quality of life within communities as well as for individuals

• Health literacy has an integral role in international sustainable development and environmental practices

• Advancing an agenda to address health literacy across the life course should be a global health policy priority

• Health literacy principles and definitions are embedded in statutory, administrative/regulatory, and case law in some nations.

• Developing health educational initiatives for younger persons, especially in K-12 and higher education, potentially improves health literacy across the life course

• Health literacy initiatives can be used to address (among other examples): clinical trial participation; health preventive screening; K-12 health education; patient understanding of prescription labels; child and adolescent vaccination participation; diet and nutrition, exercise; tobacco, alcohol, and drug abuse; interpersonal violence; sexually transmitted diseases; depression; senior self-care; hypertension; diabetes and other chronic disease management challenges; patient health self-management; utilization of the health care delivery system; informed consent; patient adherence to medical instructions; patient awareness of disease/condition; physician/health care provider adaptation to clinical challenges; and physician/health care provider resilience to professional stress

• Health literacy initiatives can be used to counter health misinformation and disinformation from social and mass media, interpersonal, community, advertising, and governmental influences.

• Sustainable health literacy interventions require providers to: be strategic; get senior leadership support; adapt to local circumstances; build partnerships; use as many health literacy techniques as necessary; prepare; test drafts or prototypes with the audience or end-users of the health information or service; and assess all initiatives using empirically grounded methods

• While HL practices often demonstrate feasibility and adoption as well as some efforts towards sustainability, HL field work frequently lacks evidence of an extended reach or transferability to other public health or clinical contexts.

• Although health literacy is an intermediate variable that impacts clinical outcomes and the utilization of the health care delivery system, HL is difficult to empirically distinguish among the other intermediate variables which have been associated with improved health outcomes and health care utilization

• The evidence base that links health literacy to improved public health outcomes is not as comprehensive as the clinically focused HL literature

• Some of the challenges to advance HL research include: a consensus about a health literacy definition; the development of multidimensional assessment tools; consistent use of grounded psychometric methods; and regular use of undergirding conceptual frameworks

• The barriers to advance HL research foster uncertainty about HL’s empirical grounding, which undermines public and private investment in health literacy research and initiatives

• Despite 20 years of findings that limited health literacy is a public health emergency, HL sometimes is not perceived as a comparatively urgent public health issue. Hence, health literacy improvements are rarely used as a benchmark of public health policy

• The current skepticism about health literacy’s future (as a discipline) should be addressed via leadership in research measurement and HL’s coordination with health policy

• Some urgent areas that require leadership are: to develop an epidemiology of health literacy; agree about standards to educate and train health professionals; furnish materials and conduct organizational assessments; and provide more health literacy impact assessments (so previously hidden or minimized health literacy effects from health, education, and social polices become more visible and measurable).

• Recent findings about the individual, public health and clinical impacts of HL suggest the need for a more comprehensive approach to health literacy research and expanding its conceptual underpinnings

• One of the least appreciated attributes of health literacy is its triangular role as a predictor of individual health, as a health institutional (or structural) determinant of health, as well as a social determinant of health. Health literacy may be the rare indicator and interventional variable that operates across the individual, structural, and social dimensions of health

• Research opportunities abound to explore health literacy’s interactions with similar disciplines such as: health communication; health journalism; social media; peer-to-peer communication; patient empowerment; health education; arts appreciation and clinical practice; and numeracy.

• The HLS-EU comprehensive health literacy instrument to assess health literacy in general populations (originally was developed by HL scholars in European Union nations) has been translated, validated, and administered (in whole or partially) in 36 nations across five continents. A new, revised instrument (HLS19) enables both the measurement of general health literacy as well as some specific aspects of HL

4. Geographical, Academic, and Organizational Diversity

The book’s authors represent five continents and diverse nations including: Austria; Australia; Canada; Denmark; Ethiopia; Israel; Malaysia; The Netherlands; Taiwan; United Kingdom; and the United States.

Represented international colleges and universities include: Aarhus University; Chapman University; Columbia University: Duke University; Emory University; George Mason University; Harvard University; Hofstra/Northwell University; Louisiana State University-Shreveport; Maastricht University; Medical College of Wisconsin; Michigan State University; Monash University; New York University; Northwestern University; Stony Brook University; Tufts University; University of Arizona; University of Arkansas; University of California-Berkeley; University of California-Los Angeles; University of California-San Francisco; University of Georgia; University of Haifa; University of Maryland-College Park; University of Malaysia; University of Massachusetts-Amherst; University of Missouri-Columbia; University of North Carolina-Chapel Hill; University of Sydney; University of Vienna; and the University of Wisconsin-Madison.

Besides the diverse U.S. governmental agencies noted above, other participating international institutions, groups, and organizations include: Agency for Preventive and Social Medicine-Bregenz Austria; Association of Health Care Journalists; Austrian Public Health Institute; Bridgeable; Bristol Myers Squibb; Clalit Health; CommunicateHealth; Global Health Literacy Academy; Health Literacy Consulting; Health Literacy Media; International Health Literacy Association; Institute for Healthcare Advancement; Medical College of Wisconsin; Ministry of Health-Malaysia; Ministry of Labor, Social Affairs and Consumer Protection-Austria; Netherlands Institute for Health Services Research; NYU Langone Health/Bellevue Hospital Center; Patient Advocates in Research; QHC Advisory Group Inc.; Society for Public Health Education; UCF/HCA Consortium; Urban Health Plan; U.S. National Cancer Institute; U.S. National Institutes of Health; U.S. Office of the Surgeon General; Wisconsin Literacy; and Wisconsin Health Literacy.

5. Appreciation

Logan and Siegel are proud to have been associated with this book’s development. We thank NLM’s director Patricia Flatley Brennan Ph.D., who graciously supported Logan’s time commitment to provide original contributions and serve as the book’s co-editor prior to his NLM retirement in December 2018.

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 International Health Literacy Association. Some of the ideas for the book’s topics (as well as some authors) came from members of these organizations as well as the editors of Health Literacy Research and Practice. 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.

The editors hope ‘Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines’ attains the 2018 request to the initial author-invitees to ‘create a gem.’

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