Ebook: Health Literacy in Clinical Practice and Public Health

Elliot R. SIEGEL Ph.D., FACMI

U.S. National Library of Medicine (Retired); Editorial Board Member, Studies in Health Technology and Informatics

Corresponding author: Elliot R. Siegel. siegel.consulting@gmail.com.

The Studies in Health Technology and Informatics (SHTI) series was started in 1990, driven by developments in biomedical technologies and medical informatics research. Both were advancing simultaneously to form an integrated view of information and communications technologies that sought to manage and benefit from increasingly large amounts of health data and information available to professional and lay audiences. The latter helped spawn the multidisciplinary field of health literacy, which promotes the successful engagement with and communication of health information to patients, caregivers, and the public.

Health literacy intersects with the field of consumer health informatics (CHI) that focuses on information structures and processes which empower consumers of health information to manage their own health. The cornerstones of CHI research and practice involve fostering health information literacy; promoting consumer-friendly language; encouraging accessible and usable personal health records; and developing innovative Internet-based strategies and resources. The American Medical Informatics Association further characterizes other disciplines that transect with CHI and health literacy, which include nursing informatics, public health, health promotion, health education, library science, and communication science.

Two years ago SHTI published Health literacy: new directions in research, theory and practice [1]. The current book coupled with the earlier volume strive to enumerate and expand our understanding of the aforementioned multidisciplinary connections with reports of specific health literacy research initiatives and interventions, particularly in clinical practice and public health.

A number of these reports also advance the use of communications tools and strategies, including contemporary information and/or communications technologies and resources. While typically a secondary emphasis, the use of communications tools and strategies serve as a means for intervention or a topic of study in their own right.

Among the book’s 41 submissions, thirteen papers addressed some aspects of information and communications technology and were selected for co-publication in special issues of the companion IOS Press journal Information Services and Use (ISU) [2–3]. In several of the latter manuscripts, the Internet occupies an outsize role, reflecting its unique strengths and weaknesses as a medium of communication and engagement, and an instrument for persuasion. For society – whether we seek it or not – the Internet mediates a shared vision of achieving the goals of a health literate and a healthy society.

In ISU’s special issue, Ahmed describes the launch some 21 years ago and the continued development of MedlinePlus.gov’s search engine and website [4]. Currently, MedlinePlus serves as a valued and effective resource for patient education and the promotion of health literacy in the general population.

As a topical focus, childhood immunization is a serious public health concern that has generated considerable activity on the Internet. In the ISU special issue, Willis and colleagues note the proliferation of web-based platforms and mobile applications that disseminate credible information about immunization [5]. Christie and Ratzan explain the need for leadership and investment in digital health communication to increase vaccine coverage as a social norm throughout the world [6]. They along with Peterson and colleagues [7] also address the aspersive influences of some social media sites and online patient support groups that deliberately disseminate health misinformation on issues such as child immunization safety. The latter authors propose the need to inoculate information seekers with health literacy skills that enable them to successfully identify and distinguish between evidenced-based and non-evidenced based information.

Borrowing as they do from CHI and communication science, efforts to inoculate information seekers with health literacy skills is an excellent example of benefits accruing from the skill sets, strategies and tools available in related disciplines. In this era of ‘fake news’ that seemingly permeates all communications media – especially electronic, health literacy researchers and practitioners would do well to avail themselves of such knowledge as a means to confront this common challenge.

References

[1] Logan, RA, Siegel, ER editors. Health literacy: new directions in research, theory, and practice. Amsterdam, IOS Press; 2017

[2] Information Services and Use. 2019; 39(1,2):1-122.

[3] Information Services and Use. 2020; 40(1): In press.

[4] Ahmed T. MedlinePlus at 21: a website devoted to consumer health information. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

[5] Willis E, Gundacker C, Harris M, Mameledzija M. Improving immunization and health literacy through a community-based approach. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

[6] Christie GP, Ratzan SC. Beyond the bench and bedside: health literacy is fundamental to sustainable health and development. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

[7] Peterson EB, Gaysynsky A, Chou WYS, Rising C. The role and impact of health literacy on peer-to-peer health communication. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

The Studies in Health Technology and Informatics (SHTI) series was started in 1990, driven by developments in biomedical technologies and medical informatics research. Both were advancing simultaneously to form an integrated view of information and communications technologies that sought to manage and benefit from increasingly large amounts of health data and information available to professional and lay audiences. The latter helped spawn the multidisciplinary field of health literacy, which promotes the successful engagement with and communication of health information to patients, caregivers, and the public.

Health literacy intersects with the field of consumer health informatics (CHI) that focuses on information structures and processes which empower consumers of health information to manage their own health. The cornerstones of CHI research and practice involve fostering health information literacy; promoting consumer-friendly language; encouraging accessible and usable personal health records; and developing innovative Internet-based strategies and resources. The American Medical Informatics Association further characterizes other disciplines that transect with CHI and health literacy, which include nursing informatics, public health, health promotion, health education, library science, and communication science.

Two years ago SHTI published Health literacy: new directions in research, theory and practice [1]. The current book coupled with the earlier volume strive to enumerate and expand our understanding of the aforementioned multidisciplinary connections with reports of specific health literacy research initiatives and interventions, particularly in clinical practice and public health.

A number of these reports also advance the use of communications tools and strategies, including contemporary information and/or communications technologies and resources. While typically a secondary emphasis, the use of communications tools and strategies serve as a means for intervention or a topic of study in their own right.

Among the book’s 41 submissions, thirteen papers addressed some aspects of information and communications technology and were selected for co-publication in special issues of the companion IOS Press journal Information Services and Use (ISU) [2–3]. In several of the latter manuscripts, the Internet occupies an outsize role, reflecting its unique strengths and weaknesses as a medium of communication and engagement, and an instrument for persuasion. For society – whether we seek it or not – the Internet mediates a shared vision of achieving the goals of a health literate and a healthy society.

In ISU’s special issue, Ahmed describes the launch some 21 years ago and the continued development of MedlinePlus.gov’s search engine and website [4]. Currently, MedlinePlus serves as a valued and effective resource for patient education and the promotion of health literacy in the general population.

As a topical focus, childhood immunization is a serious public health concern that has generated considerable activity on the Internet. In the ISU special issue, Willis and colleagues note the proliferation of web-based platforms and mobile applications that disseminate credible information about immunization [5]. Christie and Ratzan explain the need for leadership and investment in digital health communication to increase vaccine coverage as a social norm throughout the world [6]. They along with Peterson and colleagues [7] also address the aspersive influences of some social media sites and online patient support groups that deliberately disseminate health misinformation on issues such as child immunization safety. The latter authors propose the need to inoculate information seekers with health literacy skills that enable them to successfully identify and distinguish between evidenced-based and non-evidenced based information.

Borrowing as they do from CHI and communication science, efforts to inoculate information seekers with health literacy skills is an excellent example of benefits accruing from the skill sets, strategies and tools available in related disciplines. In this era of ‘fake news’ that seemingly permeates all communications media – especially electronic, health literacy researchers and practitioners would do well to avail themselves of such knowledge as a means to confront this common challenge.

References

1. unmapped: label [1]

   Logan, RA, Siegel, ER editors. Health literacy: new directions in research, theory, and practice. Amsterdam, IOS Press; 2017

2. unmapped: label [2]

   Information Services and Use. 2019; 39(1,2):1–122.

3. unmapped: label [3]

   Information Services and Use. 2020; 40(1): In press.

4. unmapped: label [4]

   Ahmed T. MedlinePlus at 21: a website devoted to consumer health information. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

5. unmapped: label [5]

   Willis E, Gundacker C, Harris M, Mameledzija M. Improving immunization and health literacy through a community-based approach. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

6. unmapped: label [6]

   Christie GP, Ratzan SC. Beyond the bench and bedside: health literacy is fundamental to sustainable health and development. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

7. unmapped: label [7]

   Peterson EB, Gaysynsky A, Chou WYS, Rising C. The role and impact of health literacy on peer-to-peer health communication. In: Logan RA, Siegel ER, editors. Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines. Amsterdam: IOS Press; 2020.

I am elated that health literacy and cultural competence are becoming a solid part of the evidence-based mainstream of public health and clinical medicine. As a young U.S. Army Special Forces soldier and medic half a century ago, some of my best training and health literacy experience resulted from living with and being immersed in the culture and language of the tribal Montagnards of Southeast Asia. From them, I learned that people are the best experts in their own lives and trying to impose a one-size-fits-all solution simply does not work.

In the decades since then – in numerous roles from soldier to physician, professor to surgeon general, father to friend – I fully realized that health literacy (HL) is the ultimate global currency of health and well-being. Without health literacy, medicine fails, public health fails, and people pay the cost for those failures with their lives. This could not be truer than in the emergence of new diseases around the world, and, in particular, the COVID-19 pandemic. As our systems of medicine and public health become increasingly stressed by growing demand, challenged by the emergence of new threats to health, and unable to respond to the needs of the public they serve, improving health literacy becomes increasingly important.

In a world that is growing increasingly complex in political, cultural, and social realities, general literacy rates vary from a low 19% in Niger to South Korea where nearly 100% of the adult population is literate. Yet, disparities remain the most critical issue – two-thirds of the world’s non-literate citizens are female.

As we strive to improve HL in order to enhance the quality and length of life and reduce health care costs, ‘Health literacy in clinical practice and public health: new initiatives and lessons learned at the intersection with other disciplines’ is a much needed publication that clearly denotes the importance of health literacy as the most effective and cost efficient way to improve public health, prevent illness, and advance medical care.

As important as improving general literacy is, the average citizen often struggles with limited health literacy and is surrounded by public health and medical care systems that demand HL to understand and navigate needed health care. That is, both people and health systems continue to have difficulty in comprehending, synthesizing, communicating clearly, and acting on necessary scientific information to improve health and well-being. People and the health systems that surround them struggle to sustain healthy behavioral changes that are necessary to prevent or mitigate disease. Citizens and their leaders also often fail to connect the quality of their lived and natural environments with the quality of the broader public’s health and well-being. An unhealthy environment produces unhealthy people just as unhealthy people produce an unhealthy environment.

As this book goes to press, illustrations of the aforementioned problems abound in the global response to COVID-19. For example, significant differences in therapeutic responses to the pandemic have emerged within and between nations despite extant evidence about the pandemic’s health risks. Significant public health consequences, including an overwhelmed health care system and preventable deaths, sometimes have been the result of inconsistent and delayed local, regional, and national implementation of physical distancing as well as other evidence-based protocols to thwart global pandemics.

In addition, occasional occurrences linked to COVID-19 provide a sobering reminder about the use of social media to diffuse health disinformation and misinformation, which can appeal to populations with limited health literacy. For instance, British activists have used social media to allege the COVID-19 pandemic’s diffusion is accelerated by the expansion of 5G network phone services and cell phone towers. The latter allegations prolong pre-pandemic assertions that cell phone towers and services represent an omnipresent, deliberately concealed threat to public health.

The continuation of health conspiracy theories and delayed government responses each illustrate the consequences of limited health literacy and its potential to generate public and health policy indecision and confusion – in this case during a pandemic.

In the U.S., health care’s stakeholders increasingly perceive health literacy as a robust field of practice. Moreover, there are organizations, researchers, practitioners, and networks working to advance health literacy that stretch around the globe. While we have experienced great advances on every continent from an idea initiated by small groups, there is much more that needs to be done. The editors of this volume have aggregated global researchers and their knowledge through ‘scientific crowd sourcing’ and they have significantly advanced the science of health literacy. In three major sections, global thought leaders in health literacy explore and report on their efforts to foster progress in clinical practice and public health.

Meanwhile, as preventable disease and its resulting economic burden continues to mount in the U.S. and globally, the currency of health literacy and cultural competence becomes ever more valuable. Improving health literacy in health and medical organizations, health professionals, and the public is the pathway to better health for all at reduced costs.

Similarly, the biomedical science that needs to be translated via HL principles creates an enduring challenge. Providers know how to keep many people healthy and prevent disease through simple lifestyle practices – and medical science often knows how to help people regain their health after they become ill. However, whether you live or practice in Bangladesh or Beverly Hills – successful health outcomes are derived from a culturally competent and health literate translation of biomedical and related sciences into applied care.

While all health and medical practitioners must be aware of (and incorporate) health literacy and cultural competence practices in their disciplines and daily practices, it is noteworthy that many best practices emerge in the communities where pressing social and cultural issues are best understood. Just as I learned from the Montagnards of Southeast Asia as a young medic in the U.S. Army, we cannot impose our world view and science upon people without first understanding their reality.

Although the future is bright for health literacy and its supporters, significant work remains and funders must begin to fully prioritize health literacy in their missions. We must engage more practitioners across disciplines like pharmacists, EMT’s, and nurses. We must bring in commercial sectors – from grocery stores to the entertainment industry. We must expand our content distribution networks and continue to create more health literate content. Through the latter approaches, we increase the chance to diminish disease and health’s economic burden as well as create healthier populations.

Health literacy can become the basis for a new partnership among the public, medical systems and professionals, and public health practitioners and systems. As those systems of health become increasingly stressed by issues like the COVID-19 pandemic, the need for all individuals, families, and communities to have the ability to make evidence-based and informed decisions becomes ever more critical in order to improve health for all at a lower cost.

On a final note, as autocrats rise and fake news and political instability trumps the truth globally, I am concerned about the unintended public health consequences of the lack of needed global coordination to reduce morbidity and mortality and improve the quality of life for millions suffering from preventable diseases and resulting economic burdens.

This new publication clearly articulates our past challenges and future opportunities while advancing the science of health literacy. Overall the book, which is enthusiastically recommended for all health and medical practitioners and researchers, sets the practice and research of health literacy on an evidence-based, common, thoughtful, effective, efficient, and applied course.

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.’

References

1. unmapped: label [1]

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This chapter summarizes research that investigated relationships between health literacy (using currently accepted measures) and specific classifications of health outcomes, including healthcare utilization. To better understand the causal pathway which limited health literacy affects poorer health outcomes, the literature is presented from proximal (health knowledge) to distal (mortality) outcomes. Overall, the most consistent evidence was observed at the most proximal and distal outcomes, but less consistent evidence with intermediary outcomes, particularly self-management behaviors and clinical health outcomes. The chapter concludes with a discussion of the findings and larger implications for the causal mechanisms which health literacy impacts health outcomes.

This chapter synthesizes what is known about the relationship between social disadvantage and measures of low health literacy (LHL), and reviews the research examining whether LHL is an explanatory factor connecting social disadvantage, health outcomes, and health disparities. Written from a U.S. perspective, the chapter then offers a novel conceptual framework that presents how the social determinants of health might interact with LHL to result in health disparities. The framework articulates relationships that reflect public health pathways and healthcare pathways, which include their related health literacies. In addition, the chapter highlights as an exemplar one important potential causal mechanism in the healthcare pathway by exploring the communication model in outpatient care, as communication has been very well-studied with respect to both health disparities and HL. The chapter then, provides two examples of HL interventions aligned with the conceptual framework, one of which addresses the health care literacy pathway, and the other addresses the public health literacy pathway. The chapter continues with a number of cautionary statements based on the inherent limitations of current HL research, including problems and concerns specific to the attribution of HL as an explanatory factor for extant socioeconomic and racial/ethnic health disparities. The chapter closes with recommendations regarding future research directions.

The chapter’s audience and purpose are twofold. First, the chapter introduces the ‘Quadruple Aim’ to policy makers and provides a general overview of health literacy strategies and tools to meet the Quadruple Aim to enhance care delivery while reducing costs.

Second, the chapter identifies gaps in health literacy related research and encourages a research agenda to further the evidence base of health literacy to reduce cost, enhance quality, increase access, improve satisfaction, and achieve health equity

This chapter discusses the notion of ‘bidirectional health literacy’ between the patient/care partner and the care team, and its impact on the quadruple aim: the care experience, population health, engagement, and the cost of care. It provides a brief historical perspective of the quadruple aim along with its relationships to value and health literacy. It overviews the responsibilities of health care organizations and highlights best practices, such as bidirectional care opportunities in patient-centered medical homes, with a focus on improving provider and care team communication.

The chapter’s aim is to provide a new bidirectional perspective on health literacy. It illuminates for readers that the focus of health literacy should not just be about patients’ understanding of and engagement in their own health and health care, but instead, a partnership where care teams become equally ‘literate’ about the patient/care partner, by learning what they value, the contextual and social determinants that impact their ability to engage in self-care, and by demonstrating cultural humility in all of their care efforts. Various models that support bidirectional literacy and care are provided.

This report discusses the importance of incorporating health literacy into health care professionalism and resilience. It defines health care management professionalism and its subcomponents. The report addresses the need for an improved definition of health care management professionalism. The inclusion of health literacy is not only important to the improved definition, but also to health care management education competencies.

The report builds on the move towards competency-based education as a strategy to address health literacy in the areas of professionalism and ethics for healthcare professionals. This could lead to building healthcare systems with healthcare professionals who encompass high levels of professionalism as well as incorporating tools to combat burnout and increasing resilience.

The chapters and reports in this book explore a wide variety of topics related to how health literacy can impact clinical practice and public health. While health literacy is relevant to healthcare issues across populations, it has unique implications in the field of pediatrics, where parents and other caregivers are responsible for managing their child’s healthcare. Younger children have varying roles and involvement; over time, as children reach adolescence, they have an increasing understanding of and participation in their healthcare. This chapter will review the epidemiology of health literacy in parents, adolescents, and children, and how this compares to the general adult population. It will highlight unique considerations regarding health literacy and pediatric health. The chapter will then focus on the impact of health literacy and relevant health literacy-informed interventions on pediatric health. Finally, the chapter will discuss gaps in the literature and future directions.

This chapter provides a review of the evolution of oral health literacy including its impact on oral health outcomes, the current status of oral health literacy initiatives and future research needs. Using the Healthy People 2010 definition, the chapter describes opportunities needed to improve oral health literacy among health providers as well as individuals/patients, communities and policy-makers. Studies of the two most prevalent dental diseasesâĂŤdental caries and periodontal diseases – reveal that increasing the oral health literacy of the public and health care providers can play a major role in reducing these diseases. Increasing oral health literacy by creating access to accurate knowledge and supporting use of science-based preventive measures is essential. A major part of the chapter describes oral health literacy’s influence in the integration of dental and medical care. The chapter provides an extensive list of research needed to further our understanding of the impact of oral health literacy on health disparities and the health of the population.

The past 25 years has seen extraordinary growth in interest in health literacy among researchers, policy-makers and practitioners. This interest has been underpinned by academic debate about the concept, definition, and measurement of health literacy, and further strengthened by a growing volume of research that has investigated the relationship between health literacy and a wide range of health and social outcomes. A smaller but growing number of studies report on interventions to address the practical challenges of low health literacy in clinical settings – and describe approaches to improving health literacy in different clinical and community populations. This chapter examines the evolution of the concept of health literacy and its practical implications for health literacy interventions. The chapter, then, provides an updated overview of reported interventions and existing strengths and weaknesses. It concludes with recommendations on interventional research that provides practical and implementable solutions which can inform future policy, strategy, and priorities.

This chapter argues that although the health literacy field has many frameworks and conceptual models, it lacks core components necessary to address health literacy as both a pressing public health and population health matter. Health literacy stakeholders need to develop three sets of activities that can provide the infrastructure for large-scale health literacy improvement. First, the field needs an ‘epidemiology of health literacy’ so we have a sustained and robust mechanism to collect and report data on multiple health literacy dimensions. Second, stakeholders should agree on standards to educate and train health professionals; develop health materials; and conduct organizational assessments. Third, the field should adopt a Health Literacy in all Policies stance and prepare to conduct health literacy impact assessments so previously hidden or minimized health literacy effects from health, education, and social polices become visible and measurable.

This report illustrates the importance of capacity-building to advance immunization literacy through a community-based participatory research (CPBR) approach to decrease child health immunization disparities. The research project utilizes culturally-tailored immunization and technology literacy modalities for dissemination in targeted low-income neighborhoods. The results suggest successful outcomes are dependent upon contributions and engagement of community members in all project processes, ensuring community buy-in and cultural relevance. The latter approach is time-intensive due in part to the need to build broad-based community partnerships, which can result in a promising approach to foster broader population impact.

Social determinants of health, including low health literacy and limited English proficiency, and other factors place Latinos at high risk for health disparities related to chronic diseases. Such diseases require self-management skills as well as medical management. Well-designed visualizations are suitable for visualizing data related to self-management because they can help narrow the comprehension gap between individuals with low and high levels of health literacy by leveraging existing visual analysis skills while reducing the demand on literacy and numeracy competencies. Use of information visualizations also supports a common visual representation across languages to address limited English proficiency. This report illustrates the use of information visualizations for communication related to self-management through research-based case examples and summarizes key lessons from studies with Latinos in New York City.

This report introduces Health Literacy Out Loud (HLOL) podcasts, which have covered many aspects of health literacy, health communication, and health care from diverse perspectives since 2008. The report includes excerpts from select HLOL podcasts. Each includes a link to listen and learn more. Section two highlights health literacy pioneers including conversations with Len and Ceci Doak, Archie Willard, and Rima Rudd. Section three looks at two of the most common health communication strategies, the written and spoken word. Section four brings in other aspects of communication including cultural aspects of food and nutrition, disability, and health education in a remote South African village. Section five looks more generally at the production of HLOL podcasts.

This chapter provides an overview of health literacy measurement initiatives with a focus on the European Health Literacy Survey (HLS-EU) – describing where measuring population health literacy started, where it currently is, and providing an outlook to the upcoming European HL survey. In the first part of the chapter, the methodology and the main results of the initial HLS-EU study from 2011 will be introduced. In the second part the worldwide impact of the HLS-EU study will be mapped. Many publications and studies used the HLS-EU instruments in the original or few in an adapted way to measure comprehensive health literacy – in many different settings and in diverse countries. Finally, the chapter ends with an outlook to the M-POHL and HLS19 initiatives of WHO-Europe which are intended to advance HLS-EU as well as the measurement of population and organizational health literacy in a more coordinated, standardized, and institutionalized manner.

This report provides an overview of Austria’s approaches to improve population health literacy (HL). The report suggests: a) research can trigger health policy responses to improve HL; b) linking HL improvement to other reform agendas can boost effectiveness, and c) coordination is required for continuously and systematically working towards better HL. Examples of strategic thematic approaches and interventions – especially in the fields of communication in healthcare, health information products, and organizational HL responsiveness – are provided, and Austria’s role in preparing the next European HL survey, HLS19, is briefly described.

This report focuses on the development of health literacy in two European countries, Denmark and the Netherlands. Denmark is part of the Nordic region, while the Netherlands is situated in the Western part of Europe. The report includes examples on Danish and Dutch health literacy research and lessons learned from practice. In Denmark, supported by health literacy research, health literacy developments have been advanced within some areas of practice. Health literacy advocacy initiatives promoted by the Danish Health Literacy Network and the Danish Society of Public Health provide promising perspectives for the future of health literacy in Denmark. In the Netherlands, the Dutch Health Literacy Alliance, researchers, and other relevant stakeholders are actively integrating health literacy in research and practice – both clinically and in communities. The vibrant Dutch health literacy community advocates for further national health literacy efforts to achieve governmental support.

This report focuses on a study that addresses the role of health literacy in the challenges surrounding aging. The study was conducted among n=533 public employees ages 40 to 60 years old in Johor state, Malaysia. The validated Malay version of World Health Organization Quality of Life Instrument (WHOQOL-BREF) and the Short-Form Health Literacy Instrument (HLS-SF12) were used to assess perceived quality of life and general health literacy respectively. The WHOQOL-BREF comprises 26 items with six outcomes and the HLS-SF12 consists 12 items. This study provides an overview of participant quality of life, which was operationalized as a precondition of active aging. The participants’ preconditions related to active aging were worrisome as 28% perceived their quality of life as poor and 34% were dissatisfied with their health. More positively, health literacy was found to be a significant determinant that may enable active aging.

This report focuses on opportunities, challenges and outcomes of health literacy related interventions in Israel, based on health literacy measurement. The importance of a system’s and community approaches are discussed, as is cultural appropriateness. Two case studies are highlighted – the first on childhood immunization and the second on self-management of chronic health situations. In the second example, a combination of community, media, digital, and face-to-face interventions comprise a broad approach to intervention. The impact and some findings are presented, including conclusions derived from each initiative.

Section one addresses health literacy’s capacity to foster progress in clinical care and public health. Section one (and this summary) are divided into five subsections: an introduction; health literacy interventions/activities and clinical practice; health literacy interventions/activities and public health; international health literacy activities; and a concluding discussion of health literacy’s three current platforms and health literacy’s distinctive impact on health.

This report discusses successful approaches to conducting health literacy-directed studies with community clinics and agencies in rural areas of Louisiana. Some lessons learned from two studies in isolated rural areas with a history of health, educational, and economic disparities are presented. The first is a qualitative study eliciting patients’, providers’ and community members’ understanding, access and acceptance of clincial trials. The second is an overview of health literacy interventions that build on each other to improve annual colorectal cancer screening in rural commuity clinics. The results suggest rural providers and patients are interested in participating in clinical trials. To increase participation in clinical trials in rural areas, academic researchers need to develop ongoing “bi-directional” working relationships with rural clinics and agencies. The support of primary care providers trusted by patients is essential. Plain language and culturally appropriate patient education material developed with the input of patients and providers and on-going telephone outreach are effective in increasing initial colon cancer screening among low-income rural patients. More intensive strategies are needed to sustain annual screening. Implementation of health literacy research strategies may help address barriers to understanding and access to appropriate studies and preventive health services.