Relevance of Health Literacy to Precision Medicine


Book Description

On January 20, 2015, President Obama announced the Precision Medicine Initiative (PMI) in his State of the Union address. The PMI, by developing new approaches for detecting, measuring, and analyzing a wide range of biomedical information including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, is intended to enable a new era of medicine in which researchers, providers, and patients work together to develop individualized care. Part of this effort included the creation of a national, large-scale research participant group, or cohort. The PMI Cohort Program is aimed at extending precision medicine to many diseases, including both rare and common diseases such as diabetes, heart disease, Alzheimer's disease, obesity, and mental illnesses such as depression, bipolar disorder, and schizophrenia, by building a national research cohort of 1 million or more U.S. participants. An important challenge to assembling the PMI Cohort will be to reach individuals who are socioeconomically disadvantaged. Individuals who are socioeconomically disadvantaged have lower health literacy; often belong to racial, ethnic, and minority communities; and are often less likely to participate in research studies and biorepositories. To explore possible strategies and messaging designs, the Roundtable on Health Literacy formed an ad hoc committee charged with planning and conducting a 1-day public workshop on the intersection of health literacy and precision medicine. The workshop participants discussed a variety of topics including an overview of precision medicine and its potential, the relevance of health literacy to the success of precision medicine efforts, and perspectives and understanding of different groups, such as health care providers, consumers, and insurers. This publication summarizes the presentations and discussions from the workshop.




Building the Case for Health Literacy


Book Description

The field of health literacy has evolved from one focused on individuals to one that recognizes that health literacy is multidimensional. While communicating in a health literate manner is important for everyone, it is particularly important when communicating with those with limited health literacy who also experience more serious medication errors, higher rates of hospitalization and use of the emergency room, poor health outcomes, and increased mortality. Over the past decade, research has shown that health literacy interventions can significantly impact various areas including health care costs, outcomes, and health disparities. To understand the extent to which health literacy has been shown to be effective at contributing to the Quadruple Aim of improving the health of communities, providing better care, providing affordable care, and improving the experience of the health care team, the National Academies of Sciences, Engineering, and Medicine convened a public workshop on building the case for health literacy. This publication summarizes the presentations and discussions from the workshop, and highlights important lessons about the role of health literacy in meeting the Quadruple Aim, case studies of organizations that have adopted health literacy, and discussions among the different stakeholders involved in making the case for health literacy.




Informed Consent and Health Literacy


Book Description

Informed consent - the process of communication between a patient or research subject and a physician or researcher that results in the explicit agreement to undergo a specific medical intervention - is an ethical concept based on the principle that all patients and research subjects should understand and agree to the potential consequences of the clinical care they receive. Regulations that govern the attainment of informed consent for treatment and research are crucial to ensuring that medical care and research are conducted in an ethical manner and with the utmost respect for individual preferences and dignity. These regulations, however, often require - or are perceived to require - that informed consent documents and related materials contain language that is beyond the comprehension level of most patients and study participants. To explore what actions can be taken to help close the gap between what is required in the informed consent process and communicating it in a health-literate and meaningful manner to individuals, the Institute of Medicine's Roundtable on Health Literacy convened a one-day public workshop featuring presentations and discussions that examine the implications of health literacy for informed consent for both research involving human subjects and treatment of patients. Topics covered in this workshop included an overview of the ethical imperative to gain informed consent from patients and research participants, a review of the current state and best practices for informed consent in research and treatment, the connection between poor informed consent processes and minority underrepresentation in research, new approaches to informed consent that reflect principles of health literacy, and the future of informed consent in the treatment and research settings. Informed Consent and Health Literacy is the summary of the presentations and discussion of the workshop.




Health and Modernity


Book Description

Pandemics, substance abuse, natural disasters, obesity, and warfare: these are not only health crises but social crises as well. Now a panel of leaders in global health explores the vital but understudied social theories behind the practice of health promotion, including cultural capital, risk and causality, systems theory, and the dynamic between individual and community.




Health Literacy


Book Description

As societies grow more complex and people are increasingly bombarded with health information and misinformation, health literacy becomes essential. People with strong health literacy skills enjoy better health and well-being, while those with weaker skills tend to engage in riskier behavior and have poorer health. With evidence from the recent European Health Literacy Survey, this report identifies practical and effective ways public health and other sector authorities and advocates can strengthen health literacy in a variety of settings, including educational settings, workplaces, marketplaces, health systems, new and traditional media and political arenas. The report can be used as a tool for spreading awareness, stimulating debate and research and, above all, for informing policy development and action.




Measures of Health Literacy


Book Description

Health literacy-the ability for individuals to obtain, process, and understand basic health information and services to facilitate appropriate health decisions-is increasingly recognized as an important facet of health care and health outcomes. Although research on health literacy has grown tremendously in the past decade, there is no widely agreed-upon framework for health literacy as a determinant of health outcomes. Most instruments focus on assessing an individual's health literacy, yet the scope of health literacy reaches far beyond an individual's skills and abilities. Health literacy occurs in the context of the health care system, and therefore measures of health literacy must also assess the demands and complexities of the health care systems with which patients interact. For example, measures are needed to determine how well the system has been organized so that it can be navigated by individuals with different levels of health literacy and how well health organizations are doing at making health information understandable and actionable. To examine what is known about measures of health literacy, the Institute of Medicine convened a workshop. The workshop, summarized in this volume, reviews the current status of measures of health literacy, including those used in the health care setting; discusses possible surrogate measures that might be used to assess health literacy; and explores ways in which health literacy measures can be used to assess patient-centered approaches to care.




Environmental Health Literacy


Book Description

This book explores various and distinct aspects of environmental health literacy (EHL) from the perspective of investigators working in this emerging field and their community partners in research. Chapters aim to distinguish EHL from health literacy and environmental health education in order to classify it as a unique field with its own purposes and outcomes. Contributions in this book represent the key aspects of communication, dissemination and implementation, and social scientific research related to environmental health sciences and the range of expertise and interest in EHL. Readers will learn about the conceptual framework and underlying philosophical tenets of EHL, and its relation to health literacy and communications research. Special attention is given to topics like dissemination and implementation of culturally relevant environmental risk messaging, and promotion of EHL through visual technologies. Authoritative entries by experts also focus on important approaches to advancing EHL through community-engaged research and by engaging teachers and students at an early age through developing innovative STEM curriculum. The significance of theater is highlighted by describing the use of an interactive theater experience as an approach that enables community residents to express themselves in non-verbal ways.




Implications of Health Literacy for Public Health


Book Description

Health literacy is the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions. Nearly half of all American adults - 90 million people - have inadequate health literacy to navigate the health care system. Implications of Health Literacy for Public Health is the summary of a workshop convened by the Institute of Medicine Roundtable on Health Literacy in November 2013 that focused on the implications of health literacy for the mission and essential services of public health. The workshop featured the presentation of a commissioned paper on health literacy activities under way in public health organizations. Other presentations examined the implications of health literacy for the mission and essential services of public health, for example, community health and safety, disease prevention, disaster management, or health communication. This report includes the commissioned paper and summaries of the workshop presentations.




Toward Precision Medicine


Book Description

Motivated by the explosion of molecular data on humans-particularly data associated with individual patients-and the sense that there are large, as-yet-untapped opportunities to use this data to improve health outcomes, Toward Precision Medicine explores the feasibility and need for "a new taxonomy of human disease based on molecular biology" and develops a potential framework for creating one. The book says that a new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of diseases and ultimately enhance diagnosis and treatment. The "new taxonomy" that emerges would define diseases by their underlying molecular causes and other factors in addition to their traditional physical signs and symptoms. The book adds that the new data network could also improve biomedical research by enabling scientists to access patients' information during treatment while still protecting their rights. This would allow the marriage of molecular research and clinical data at the point of care, as opposed to research information continuing to reside primarily in academia. Toward Precision Medicine notes that moving toward individualized medicine requires that researchers and health care providers have access to very large sets of health- and disease-related data linked to individual patients. These data are also critical for developing the information commons, the knowledge network of disease, and ultimately the new taxonomy.




Literacy and health outcomes


Book Description