Perspectives Papers Published Before 2017
The US health-care delivery system is in the midst of a transformation. For generations, it was rooted in a transactional, fee-for-service ethos that rewarded mainly interventions to treat individuals for diseases. Today, it aims to emphasize improvement in and maintenance of the health of both individuals and communities. The transformation presents the country with the opportunity to reconsider the role of patients and their families in health. Calls to “empower” patients—to change the traditional hierarchic relationships of health care—are not new but are now far more widespread. As in other industries, the availability of information and knowledge resources over the Internet has enabled people to take a more active role in managing their health and their health care and to make decisions that previously required highly trained professionals—in short, has enabled the democratization of health care. Embracing that change not only will improve health outcomes but will address some of the underpinnings of the continued rise in health-care costs and the maldistribution of professional resources.
From our perspective, dental caries continues to be one of the most common chronic diseases in the United states and globally, with individuals living in poverty and minorities being affected more than their affluent peers. Dental caries (commonly referred to as "cavities") is a complex multifactorial disease mediated by factors that protect teeth (fluoride, salivary flow, buffering capacity, and host immunity) and patient-specific factors that put teeth at increased risk (frequent exposure to dietary carbohydrates, poor oral hygiene, and a cariogenic biofilm containing bacteria capable of fermenting carbohydrates and producing a decrease in pH). As Fontana and Wolff (2011) note, it is critical to develop effective tools for prevention and management that are risk based and patient centered.
In this paper we discuss the importance of the efforts of community health representatives to improve general health on the Navajo reservation and describe the need for new efforts focused on preparing CHRs to act as catalysts for helping improve the oral health in their communities.
Community health representatives extend healthcare beyond traditional clinic walls. They represent the "eyes, ears, hands, and feet" of the health care delivery system providing continuity of care to many individuals because health care practitioners are often limited, we believe, by their inability to assess and address the needs of their patients outside of the traditional clinic or hospital setting. Community health representatives offer health promotion and disease prevention information and services to many who may be challenged by poverty, transportation, compromising chronic diseases, or an inability to fully comprehend what actions their health care providers are recommending for them.
In our opinion, this multifactorial approach of educating community health representatives about oral health and improving the oral health literacy of those who would be interacting with and within the community is still a work in progress.
Increasingly over the past decade, health literacy researchers and practitioners have been turning their attention to issues of numeracy, recognizing that numeric tasks related to a wide array of health activities have not been sufficiently examined or addressed. Numbers are a vital part of health discussions and play a key role in health decisions and actions. People must grapple with numbers on food and medicine labels, insurance forms, enrollment documents, weather charts, and allergy alerts. They are expected to understand a test result or vital-sign measure in the context of a normal range. They are challenged to undertake risk-benefit analyses for critical decisions. Numbers are important for health action and for health decisions but frequently get in the way for many adults and confound rather than provide assistance.
Interest in health numeracy has been spurred by the various waves of literacy and numeracy surveys examining the skills of adults in industrialized nations. The most recent assessment, conducted by the Organisation for Economic Co-operation and Development (OECD), was the PIAAC Survey of Adult Skills in 2011. Findings indicated that a small percentage of U.S. adults placed in the highest levels of numeracy skills and almost one-third of U.S. adults scored in the bottom two levels. People whose skills are at the lower levels can use whole numbers but may struggle with calculations using percentages and with abstract numerical concepts, such as risk. Analyses of findings indicate that a significant proportion of the U.S adult population do not have sufficient numeracy skills to meet many of the demands and expectations of modern life.
Individuals make decisions about health and well-being every day. Many of those decisions involve using and understanding numbers, and most of the decisions are made quickly, at home or at work, as a person goes about a daily routine. Even with adequate time, many people lack the skills to make good use of numerical information to help them make informed decisions. Health professionals and health systems also often communicate numerical information poorly, increasing the challenge.
We aim in this paper to provide guiding principles for communicating numbers in a clear, simple way. These principles can be used by health professionals interacting with patients; health systems creating and giving information about diseases, treatments, prevention, cost, and covered services; and health plans explaining the cost of deductibles, co-pays, maximum out-of-pocket costs, tiered coverage for medicines, and quality. Pharmaceutical and medical device companies also have a great opportunity to explain the risks and benefits of medicines and devices. No matter how different these organizations appear, they all should take the opportunity to help foster improved health decision making by presenting data and numbers clearly.
The field of health literacy has evolved over the decades. While early work focused on individual skills (and deficits) and specific products (brochures and documents, for example), we, the authors, have come to a greater appreciation that health literacy is multidimensional—it includes both system demands and complexities as well as the skills and abilities of individuals. The individuals may be patients or family members, and the providers of information may be health care providers, protocol developers, insurance organizations, pharmaceutical companies, and others.
To personalize and attach the study of health literacy to a variety of disciplines, various experts have come up with such terms as “oral health literacy” and “environmental health literacy,” which help to connect specific content to the central concept. But we believe it is important to generate a renewed and focused discussion about the definition of health literacy to ensure that the definition actually reflects today’s understanding of health literacy as multidimensional. Furthermore, health literacy operates in a wide variety of settings and mediums. So, we believe a definition should include a description of this multidimensionality; an explanation of a variety of settings and modes and media; and the unique psychological impact of health literacy on empowerment and health decisions. It should also be tangible, and, finally, it should be testable.
In early 2015, President Obama announced a $215 million investment in the 2016 budget to revolutionize health improvement efforts and disease treatment. The Precision Medicine Initiative (PMI) is a new model of patient-powered research using big data to expedite greater understanding of a range of cancers and eventually many understudied and rare conditions (White House, 2015a). The intent is that genetic, environmental, and lifestyle factors that could guide prevention and treatment efforts at the individual level will become more readily identified and available to inform clinical decision making, self-management, and population health.
This commentary builds on presentations from Diane Meier and Beverly Alves at a workshop on Health Literacy and Palliative Care sponsored by the Roundtable on Health Literacy in July 2015. The commentary offers a look at how the lack of health literacy in the health care system offers challenges to the adoption of palliative care as a standard of care.
The authors of this paper believe that an essential ingredient in the effort to increase health equity and reduce health disparities is eliminating health literacy barriers. The challenge of aligning health care system demands and complexities with individual skills and abilities across the spectrum of public health and clinical delivery will be difficult, but critical in the effort to achieve health equity.
The authors of this paper believe health literacy needs an inclusive professional association to flourish as an independent field of research and practice. The creation of an international, multidisciplinary, peer organization has the potential to enhance the careers of health literacy researchers and practitioners as well as nurture the field’s future by providing a global resource for educational and professional development.
Research documents that most people in the United States cannot understand or use the complex information needed for managing their health and effectively using health care services. We believe it is critical to take a health-literate approach to solving this problem, that is, to align system demands and complexities with individual skills and abilities. For the past two decades, we worked to advance research, teaching, and practices that systematically address improving health literacy. In this piece, we offer a synthesis of the principles we follow to create health information that is better aligned with the skills and abilities of those using that information. We then offer links to examples of materials where these principles guided the development and presentation of information.
This fable explores the consequences of eroding health literacy and ignites a call to stop ignoring the things that impede our ability to understand and interpret health information.
In dentistry, an after visit summary (AVS) can be thought of in both the context of a standalone dental practice and as a combined summary integrating oral health-related information with medical information. In this commentary, the authors explore the AVS from both perspectives and make a case for considering the AVS as an important piece of the larger puzzle needed to improve oral health and general health literacy for all patients. In dentistry, an after visit summary (AVS) can be thought of in both the context of a standalone dental practice and as a combined summary integrating oral health-related information with medical information. In this commentary, the authors explore the AVS from both perspectives and make a case for considering the AVS as an important piece of the larger puzzle needed to improve oral health and general health literacy for all patients.
As mobile devices become more popular mobile health applications (mHealth apps) present opportunities to improve health and wellness. However, poorly designed mHealth apps can contribute to the challenges many people have understanding and acting on health information, challenges that are exacerbated for users with low health literacy. The authors of this discussion paper call for app developers to build “health literate apps” that apply usability and health literacy strategies throughout the development process. The paper offers a set of strategies for developers and a case study to demonstrate how the strategies can be effectively applied in the development process.
The U.S. population is more diverse than ever before in terms of race, ethnicity, language, socioeconomic status, and education level. In order to adequately serve these changing demographics, health care organizations must provide all persons with the ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions. The authors of a new discussion paper write that in order to accomplish this, health care organizations must promote, sustain, and advance an environment that supports principles of health literacy. This paper discusses how establishing an Office of Diversity, Inclusion, and Health Literacy is critical to operationalize health literacy across an organization and enhance its viability, focus, and sustainability.
Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Health literacy affects health outcomes and is critical for ensuring safe, patient-centered, equitable, high-quality care. Incorporating health literacy into the health care quality agenda is an important step to help clinicians provide all patient populations with the resources necessary to improve their health status. This paper describes opportunities for health care providers to link health literacy to quality measures and integrate health literacy performance measurement into every aspect of the patient experience.
Good health is important — for our work, our play, and our everyday lives. There are many things we can do to maintain good health, but sometimes we need medical care to help keep us from getting sick or help us get better when we are sick or injured. Medical care is expensive, so having health insurance is critical to helping us get and pay for the care we need. The Patient Protection and Affordable Care Act (ACA) contains provisions designed to increase the number of insured in the United States, yet most Americans do not understand how the ACA will affect them and their options for health insurance. The ACA is broad, has many components, and is hard to understand. The authors of this discussion paper believe it is critical for both health care providers and consumers to be able to answer the four basic questions addressed in this paper and the accompanying video, slides, and consumer guide:
- What are my choices for health insurance?
- How do I get it?
- How do I use it?
- How much will it cost me?
In April 2013, in collaboration with the Connecticut Health Foundation, the Institute of Medicine’s Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities convened a public workshop with community leaders and health policy makers on the implications of the Patient Protection and Affordable Care Act (ACA) for health equity. Among the most powerful presenters were two community organizers based in Connecticut who described both the appetite of the underserved for information about opportunities for health insurance coverage and the prevailing confusion among these families and communities regarding the ACA. Even among the law’s strongest supporters and the architects of ACA implementation, there was concern—if not dread—that the goal of expanding health coverage for the underserved would be sidetracked by misinformation, a lack of community trust, and a lack of coordinated and consistent messaging around the potential benefits of the new law.
Earlier in the spring of 2013, the IOM Roundtable on Health Literacy convened a meeting in Washington, DC, and invited speakers to describe their organizations’ efforts to assimilate the “attributes” of a health literacy–sensitive organization. Although the focus of this convening was not the ACA per se, a prevailing theme was the importance of the patient voice in the health care delivery system and the need for organizations to adopt programs that consistently incorporate this voice.
These two important messages, one about the importance of amplifying the patient voice, and the other about the importance of communicating in ways meaningful to a community about new opportunities to invest in its health, converge at a critical time in our country’s great test in expanding health care access to all Americans. For those invested in the successful implementation of the ACA, particularly in the expansion of health care coverage through the establishment of state insurance marketplaces and the expansion of Medicaid eligibility, work must begin swiftly not only to communicate about coverage options, but also to empower and engage grassroots organizers and communities in the process.
We are entering a critical time in health care in the United States. The Patient Protection and Affordable Care Act (ACA) changes the American health care system in many ways. Of major importance is the fact that it expands access to health insurance for millions of Americans. But do Americans understand the changes that are coming? Do they understand their options for health insurance or how to choose the insurance plan that best meets their needs? And will they know how to use that insurance plan once they have it? Many people don’t have this understanding, and they have a hard time getting reliable information when they try to learn more.
Six participants in the Collaborative on Health Literacy and Access, Health Care Coverage, and Care of the IOM Roundtable on Health Literacy have prepared a discussion paper that presents basic information that can be used to help people understand their health insurance options. The paper is a resource for those who will be helping consumers make important decisions—for patient navigators, community organizations, employers, media, educators, and any individual or organization working to improve understanding of options for health insurance.
A wide range of organizations have recognized that having health literate health care organizations benefits not only the 77 million Americans who have limited health literacy, but also the majority of Americans who have difficulty understanding and using currently available health information and health services. This paper presents 10 attributes that exemplify a health literate health care organization. Each attribute includes a brief elaboration of the meaning of and basis for the attribute, followed by a set of implementation strategies that can be used to achieve the attribute.
This paper describes ten attributes of a health literate organization; that is, an organization that makes it easier for people to navigate, understand, and use information and services to take care of their health. The health care system is very complex. Most people in the United States have difficulty understanding and using currently available health information and health services. This means there is an imbalance between the skills of people and the demands of the health care system.