Originally produced by Penny Glassman, Head, Technology Initiatives, Lamar Soutter Library, University of Massachusetts Medical School, former NN/LM New England Region Technology Coordinator
Health Literacy is defined in the Institute of Medicine report, Health Literacy: A Prescription to End Confusion, as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." More recent definitions focus on specific skills needed to navigate the health care system and the importance of clear communication between health care providers and their patients. Both health care providers and patients play important roles in health literacy. The number of different definitions of health literacy demonstrate that the field is evolving.
Health literacy is not simply the ability to read. It requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations. For example, it includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor's directions and consent forms, and the ability to negotiate complex health care systems.
Recognizing that culture plays an important role in communication helps us better understand health literacy. For people from different cultural backgrounds, health literacy is affected by belief systems, communication styles, and understanding and response to health information. Even though culture is only one part of health literacy, it is a very important piece of the complicated topic of health literacy. The United States Department of Health and Human Services (HHS) recognizes that "culture affects how people communicate, understand and respond to health information."
According to the American Medical Association report, Health Literacy and Patient Safety: Help Patients Understand, "poor health literacy is a stronger predictor of a person's health than age, income, employment status, education level, and race".
There is a move toward "patient-centered" health care as part of an overall effort to improve the quality of health care and to reduce costs. Individual patients and providers need to work together to ensure effective communication. Patients need to take an active role in health related decisions and develop strong health information skills. Health care providers need to utilize effective health communication skills, including techniques such as "teach-back". Health educators need to write printed and Web-based information using plain language.
Patients are often faced with complex information and treatment decisions. Patients need to:
- Access health care services
- Analyze relative risks and benefits
- Calculate dosages
- Communicate with health care providers
- Evaluate information for credibility and quality
- Interpret test results
- Locate health information
In order to accomplish these tasks, individuals may need to be:
- Visually literate (able to understand graphs or other visual information)
- Computer literate (able to operate a computer)
- Information literate (able to obtain and apply relevant information)
- Numerically or computationally literate (able to calculate or reason numerically)
Oral language skills are important as well. Patients need to articulate their health concerns and describe their symptoms accurately. They need to ask pertinent questions, and they need to understand spoken medical advice or treatment directions. In an age of shared responsibility between physician and patient for health care, patients need strong decision-making skills. With the development of the Internet as a source of health information, health literacy may also include the ability to search the Internet and evaluate Web sites.
According to the Agency for Health Care Research and Quality Report, Health Literacy Interventions and Outcomes: an Update of the Literacy and Health Outcomes Systematic Review of the Literature, low health literacy is linked to higher risk of death and more emergency room visits and hospitalizations. Health literacy may not be related to years of education or general reading ability. A person who functions adequately at home or work may have marginal or inadequate literacy in a health care environment.
The National Assessment of Adult Literacy (NAAL) measures the health literacy of adults living in the United States. Health literacy was reported using four performance levels: Below Basic, Basic, Intermediate, and Proficient. According to the NAAL, approximately 36% of adults in the United States have limited health literacy-22% have Basic and 14% have Below Basic health literacy. An additional 5% of the population is not literate in English. Only 12% of the population has a proficient health literacy level.
In the Surgeon General's Perspectives, in which important national public health issues are communicated, Dr. Regina Benjamin stated "HHS reports that the cultural and linguistic differences among patients directly impact their health literacy levels, which in turn contributes to an increased prevalence of health disparities" in special and vulnerable populations."
Vulnerable populations include:
- 71% of adults older than age 60 have difficulty using print materials.
- 80% have difficulty using documents such as forms or charts.
- 68% have difficulty interpreting numbers and performing calculations.
Older adults use more medical services and acquire more chronic illnesses than other population segments. (Williams, MV. JAMA, December 5, 1995)
Health literacy issues associated with older adults include:
People 65 and older make nearly twice as many physician office visits per year than adults 45 to 65. However, an estimated two-thirds of older people are unable to understand the information given to them about their prescription medications. (AMA, 2007)
According to the Centers for Disease Control and Prevention, "by 2030, 71.5 million adults aged 65 years of age or older will be living in the United States". This demographic shift combined with the NAAL data highlight how important it is to improve health communication as a way to improve the health of older adults.
- NAAL reports that low health literacy is higher among adults who spoke a language other than English before starting school.
Education Level Low health literacy is higher among individuals who did not complete high school. More than 76% of respondents in the survey who did not complete high school scored at the "Below Basic" or "Basic" level of health literacy.
- The NAAL also reported a relationship between health literacy and race or ethnicity. White respondents scored better on the survey than other ethnic or racial groups. Only 9% of White respondents scored at the lowest (Below Basic) level. However, 24% of Blacks, 41% of Hispanics, 13% of Asians, and 25% of American Indian and Native Alaskan respondents scored at the "Below Basic" level.
- Based on the NAAL research, adults living below the poverty level have lower average health literacy than adults living above the poverty threshold. In adults who receive Medicaid, 30% have "Below Basic" health literacy.
People with chronic mental and/or physical health conditions Also in the NAAL report, 42% of the people who reported their health status as poor and 33% of the people who reported their health status as fair scored at the "Below Basic" level.
People with low health literacy use more health care services, have a greater risk for hospitalization, and have a higher utilization of expensive services, such as emergency care and inpatient admissions. (IOM, 2004)
Reasons for limited literacy skills include:
- Lack of educational opportunity -people with a high school education or lower
- Learning disabilities
- Cognitive decline in older adults
- Use it or lose it . Reading abilities are typically three to five grade levels below the last year of school completed. As a result, people with a high school diploma, typically read at a seventh or eighth grade reading level.
The relationship between literacy and health is complex. Literacy impacts health knowledge, health status, and access to health services. Several socioeconomic factors impact health status. Literacy impacts income level, occupation, education, housing, and access to medical care. Poor and illiterate people are more likely to work under hazardous conditions or be exposed to environmental toxins.
In addition to the effects of low health literacy on the individual patient, there are economic consequences of low health literacy to society. According to the report Low Health Literacy: Implications for National Health Policy "Low health literacy is a major source of economic inefficiency in the U.S. health care system." The report estimates that the cost of low health literacy to the U.S. economy is between $106 billion to $238 billion annually. This represents between 7 percent and 17 percent of all personal health care expenditures. To put this in perspective, the cost represents an amount equal to the cost of insuring every one of the more than 47 million people who lacked coverage in the United States in 2006. Improving health communication reduces health care costs and increases the quality of health care.
Low health literacy was once viewed as an individual patient's deficit-that is, a patient's lack of knowledge and skills regarding health issues. We now recognize that health literacy is a "systems issue" (Rudd, 2010), reflecting the complexity of both the presentation of health information and navigation of the health care system. (Parker, Ratzan, 2010) The Institute of Medicine, in their 2004 report Health Literacy, A Prescription to End Confusion states "efforts to improve quality, reduce costs, and reduce disparities cannot succeed without simultaneous improvements in health literacy" (IOM, 2004). The Agency for Health Care produced two systematic reviews that provide evidence of the need to improve health literacy. The report also recommends areas for additional research.(AHRQ, 2004 and 2011)
The Joint Commission, the group that accredits and certifies health care organizations and programs in the United States, stresses the importance of health literacy, health communication, and cultural competencies as an element of quality health care. In their report, What Did the Doctor Say?: Improving Health Literacy to Protect Patient Safety, the Commission states:
Health literacy issues and ineffective communications place patients at greater risk of preventable adverse events. If a patient does not understand the implications of her or his diagnosis and the importance of prevention and treatment plans, or cannot access health care services because of communications problems, an untoward event may occur. The same is true if the treating physician does not understand the patient or the cultural context within which the patient receives critical information... The Joint Commission's accreditation standards underscore the fundamental right and need for patients to receive information - both orally and written - about their care in a way in which they can understand this information.
These landmark reports helped move health literacy from an "under-recognized silent epidemic to an issue of health policy and reform".
Several recent federal policy initiatives address the issue of low health literacy. These initiatives raise importance of health literacy as a component in an effort to improve the health of the U.S. population, decrease costs, and reduce the number of medical errors.
- Affordable Care Act (ACA): Several ACA provisions address the need for greater attention to health literacy. There are provisions to clearly communicate health information, promote prevention, be patient-centered and create medical or health homes, assure equity and cultural competencies, and deliver high quality care.
- National Action Plan to Improve Health Literacy: The Department of Health and Human Services (HHS) in collaboration with over 700 public and private sector entities, developed this framework for future research and action. The Plan includes seven goals and strategies that researchers and practitioners can use to design studies and interventions.
- Plain Writing Act: Requires all new publications, forms, and publicly distributed documents from the federal government to be written in a "clear, concise, well-organized" manner.
Below are just a few of the conclusions from studies on health literacy and outcomes.
- People with low health literacy have a lower likelihood of getting flu shots, understanding medical labels and instructions, and a greater likelihood of taking medicines incorrectly compared with adults with higher health literacy. (Bennett, 2008)
- Individuals with limited health literacy reported poorer health status and were less likely to use preventative care. (Nielson-Bohlman, 2004)
- Individuals with low levels of health literacy are more likely to be hospitalized and have bad disease outcomes. (Baker, 2002) and (Schillinger, 2002)
- Inpatient spending increases by approximately $993 for patients with limited health literacy. (Howard, 2004)
- After controlling for relevant covariates, lower health literacy scores were associated with high mortality rates within a Medicare managed care setting. (Baker, 2007)
- The annual cost of low health literacy to the U.S. economy was $106 billion to $238 billion. (Vernon, 2007)
- Low literacy adversely impacts cancer
incidence, mortality, and quality of life. For
- Cancer screening information may be ineffective; as a result, patients may be diagnosed at a later stage.
- Treatment options may not be fully understood; therefore, some patients may not receive treatments that best meet their needs.
- Informed consent documents may be too complex for many patients and consequently, patients may make suboptimal decisions about accepting or rejecting interventions. (Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002)
Among primary care patients with Type 2
diabetes, inadequate health literacy is independently
associated with worse glycemic control and higher rates
of retinopathy. Inadequate health literacy may
contribute to the disproportionate burden of diabetes
related problems among disadvantaged populations. (Schillinger, 2002)
Inadequate literacy was common and
strongly correlated with poorer knowledge of asthma and
improper metered-dose inhaler (MDI) use. More than half
of patients reading at a sixth-grade level or less
report they go to the Emergency Department when they
have an attack compared with less than a third of
literate patients. Less than one third of patients with
the poorest reading skills knew they should see a
physician when their asthma was not symptomatic as
compared with 90% of literate patients. (Williams, 1998)
Hypertension and Diabetes
Almost half (48%) of the patients with
hypertension or diabetes in a study had inadequate
functional health literacy, and these patients had
significantly less knowledge of their disease,
important lifestyle modifications, and essential
self-management skills, despite having attended formal
education classes. (Williams,1998)
Many consumer health initiatives are geared towards technological access to health information or rewriting existing health materials at a simpler language level. Both of these approaches are important, but limited. Easy-to-read materials and access to technology are only pieces of a process that must be placed in a larger community context.
This may take the form of providing space for meetings, providing health literacy materials, or actively developing health literacy programs. Consumer health librarians can promote awareness of health literacy among health professionals by creating clearinghouses of health literacy information, sponsoring health literacy seminars, and encouraging multi-organizational collaborations.
Possible initiatives to consider include:
- Develop partnerships with school librarians, math teachers, health teachers, science teachers, and school nurses to introduce health related tasks into the curriculum.
- Work with Adult Basic Education and English as a Second Language initiatives to include health related information into the program.
- Partner with community-based organizations to develop outreach programs to senior-citizen facilities to discuss health information topics.
- Health information classes at the public library to teach health related topics.
- Work with consumer advocate organizations on outreach programs to vulnerable populations.
- Collaborate with Area Health Education Centers (AHECs) to provide health information literacy training for community health workers and health occupation students.
The National Action Plan for Health Literacy identifies the following strategies for health information and library professionals to contribute to health literacy:
- Help to train all health care staff in the principles of health literacy and plain language.
- Create collections or repositories of materials (e.g. insurance forms and instructions, informed consent and other legal documents, aftercare and medication instruction, and patient education materials) in several languages and review the materials with members of the target population.
- Help to disseminate existing communication tools and resources for patients.
Consumer health librarians also need to participate in and lobby for research on health literacy topics. The Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association (JAMA Feb. 10, 1999) identified the need for research on:
- Literacy screening
- Methods of health education
- Medical outcomes and economic costs
- Understanding the casual pathway of how literacy influences health
Consumer health librarians can also support the direct needs of health information consumers by providing materials that are multilingual, culturally appropriate and easy-to-read, and by developing methods and materials to teach consumers how to evaluate health information resources, especially those found on the Internet.
“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.” (Healthy People)
"The term 'health literacy' means the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health decisions." (Patient and Affordable Care Act of 2010, Title V)
“Health literacy is a constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment. Patients with adequate health literacy can read, understand, and act on health information.” (Health literacy: report of the Council on Scientific Affairs, JAMA, 1999)
“Health literacy defined:
- Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information.
- Health literacy is the use of a wide range of skills that improve the ability of people to act on information in order to live healthier lives.
- These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills.” (Calgary Charter)
- National Action Plan for Health Literacy
The National Action Plan seeks to engage organizations, professionals, policymakers, communities, individuals, and families in a linked, multi-sector effort to improve health literacy.
- Universal Precautions Toolkit
The AHRQ’s Universal Precautions Toolkit offers primary care practices a way to assess their services for health literacy considerations, raise awareness of the entire staff, and work on specific areas.
- CDC Health Literacy: Accurate, Assessible and Actionable Health Information for All
This CDC provides information and tools to improve health literacy and public health. These resources are for all organizations that interact and communicate with people about health, including public health departments, healthcare providers and facilities, health plans, government agencies, non-profit/community and advocacy organizations, childcare and schools, the media, and health-related industries. Other CDC resources:
CDC Clear Communication Index
Research-based tool to plan and assess public communication materials.
Health Literacy, Health Communication and e-Health
Provides an overview of health literacy, tools, reports/research and related resources.
Improving Health Literacy for Older Adults
Expert Panel Report with a practitioner and researcher highlighting each component of the Healthy People 2010 definition of health literacy.
Simply Put, A Guide for Creating Easy-to-Understand Materials
This Simply Put Guide teaches how to create easy-to-read materials using effective communication and design.
- MedlinePlus: How to Write Easy-to-Read
MedlinePlus, the National Library of Medicine's website for patients and their families and friends includes easy-to-read health information, and a resource page with tips how to write easy-to-read.
- PlainLanguage.gov, Improving Communication from the Federal Goverment to the Public
Plain language is the law. Discover tips and tools to start and plan a plain language program. The site includes the Federal Plain Language Guidelines.
- Questions Are the Answer
The AHRQ's Questions Are the Answer encourages patients to ask questions at health visits, because health depends on good communication. The site includes a question builder and short videos of patients and providers sharing the importance of asking questions.
- PubMed Health Literacy Topic Query
PubMed, the National Library of Medicine’s database of the biomedical literature, includes a topic specific query on health literacy, which brings you the latest journal citations and articles, as well as links to other health literacy information resources.
- Partners in Information Access for the Public Health Workforce
PHPartners provides pre-formulated PubMed search strategies to find published literature to support achieving Healthy People 2020. Includes pre-formulated PubMed searches on Health Communication and Health Information Technology Objectives from Healthy People 2020.
- Ten Attributes of Health Literate Health Care Organizations
The Institute of Medicine's (IOM) discussion paper presents 10 attributes that exemplify a health literate health care organization.
- Health Literacy Studies
Harvard School of Public Health’s site designed for professionals in health and education who are interested in health literacy. The site highlights research findings, reports/initiatives, and strategies/tools.
- Culture, Language and Health Literacy HRSA highlights how effective healthcare communication and practices, including health literacy, contribute to improving the quality of services for culturally and linguistically diverse populations as well as people with limited health literacy skills. The site features a health communication training tool designed to improve interaction between healthcare providers and their patients.
- Bringing Health Information to the Community Blog, Health Information Literacy Category
The BHIC blog focuses on health information issues related to the community, especially underserved communities.
- Promoting Health Literacy through Easy-to-Read Materials This Medical Library Association CE class teaches participants to understand various definitions of health literacy and its importance to patient care; to identify factors which may contribute to low levels of health literacy, to be aware of the role of cultural competency in health literacy, to use the basic principles of plain language, and to identify key players in health literacy awareness and advocacy.
- Health Literacy Toolkit
The NN/LM Southeastern/Atlantic Region provides an annotated bibliography of articles, booklets, books, presentations, toolkits, and websites for health literacy.
- Introduction to Health Literacy
The NN/LM New England Region's one page handout introduces new health professionals to health literacy.
- NN/LM Health Literacy Guide
The NN/LM SE/A Region’s guide features definitions of health literacy, scholarly articles, blogs, and ways to promote health literacy.
- NN/LM Blogs
NN/LM blogs help you stay up-to-date with the latest news from the National Network of Libraries of Medicine and the National Library of Medicine.
- American Medical Association, Health Literacy Resources
The AMA’s Health Literacy Kit includes an instructional video, an in-depth manual for clinicians, and additional resources for education and involvement. The video is available online, on DVD, CD-ROM or VHS.
- Canadian Public Health Association Health Literacy Portal
An Internet portal is designed to provide easy access to key information about health literacy in Canada for health professionals, researchers and interested individuals. It features the Expert Panel on Health Literacy's final report as well as links to other key Canadian and international health literacy resources.
- Communicate Health
Communicate Health's free weekly "We ♥ health literacy" e-newsletter offers helpful tips for user-centered design and content development.
Health Literacy Missouri
Health Literacy Missouri works to improve the health of Missourians by closing the gap between patient skills and the demands of the health care system. We do this by offering training and diagnosing health literacy weaknesses in clinical settings across the state.
Health Literacy Discussion List
The Health Literacy Discussion Listserv (HLDL) is hosted by the Institute for Healthcare Advancement. The list is moderated and open to anybody interested in health literacy. The purpose of this list is to provide an on-going professional development forum where literacy practitioners, healthcare providers, health educators, researchers, policymakers, and others can discuss health literacy needs, goals and strategies. To subscribe, please register and create a password on the site.
- Health Literacy OutLoud Podcasts
Helen Osborne hosts guest speakers on a variety of health literacy hot topics.
- Medical Library Association Health Information Literacy
The Medical Library Association provides a Health Information Literacy Curriculum including two tutorials and resources to use for training sessions.
Agency for Health Care Research and Quality (AHRQ). 2011. Health Literacy Interventions and Outcomes: an Update of the Literacy and Health Outcomes Systematic Review of Literature, 2011 (Retrieved October 2012)
American Medical News. Gerontologists outline how doctors can bridge communication gap with older patients (Retrieved November 2012)
Benjamin RM. Improving health by improving health literacy. Public Health Rep. 2010, Nov-Dec;125(6):784-785. (Retrieved May 2013)
Bennett IM, Chen J, Soroui JS, et al. The contribution of health literacy to disparities in self-rated health status and preventive health behaviors in older adults. Annals of Family Medicine, 2009, May-Jun;7(3):204-11.
Centers for Disease Control and Prevention. Older Adults: Why Is Health Literacy Important? (Retrieved November 2012)
Davis, T. C., Williams, M. V., Marin, E., Parker, R. M., & Glass, J. (January 01, 2002). Health literacy and cancer communication. Ca: a Cancer Journal for Clinicians, 52, 3.)
Howard DH, Sentell T, Gazmararian JA. Impact of health literacy on socioeconomic and racial differences in health in an elderly population. Journal of General Internal Medicine, 2006, Aug;21(8):857-61.
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Joint Commission. (2007). What did the doctor say?: Improving health literacy to protect patient safety. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations.
Kutner, M., Greenberg, E., Jin,Y., and Paulsen, C. (2006). The Health Literacy of America's Adults: Results From the 2003 National Assessment of Adult Literacy (NCES 2006-483).U.S.Department of Education.Washington, DC: National Center for Education Statistics.
Paasche-Orlow, M. K., Riekert, K. A., Bilderback, A., Chanmugam, A., Hill, P., Rand, C. S., Brancati, F. L., Krishnan, J. A. (January 01, 2005). Tailored education may reduce health literacy disparities in asthma self-management. American Journal of Respiratory and Critical Care Medicine, 172, 8, 980-6.
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Somers, S. A., Mahadevan, R., & Center for Health Care Strategies, Inc. (2010). Health literacy implications of the affordable care act. Hamilton, N.J: Center for Health Care Strategies, Inc.
United States Department of Health and Human Services. Quick Guide to Health Literacy Fact Sheet: Health Literacy Basics. (n.d.). Office of Disease Prevention and Health Promotion. Retrieved May 21, 2013, from http://www.health.gov/communication/literacy/quickguide/factsbasic.htm
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Culture in the Context of Health Literacy Update: Diana Almader-Douglas, NLM Associate Fellow, June 2013
Editor: Michelle Eberle, Health Literacy and Community Engagement Coordinator, NN/LM NER