Definition

In the report Healthy People 2010 (http://www.healthypeople.gov/Document/pdf/uih/2010uih.pdf), the U.S. Department of Health and Human Services included improved consumer health literacy as Objective 11-2, and identified health literacy as an important component of health communication, medical product safety, and oral health. Health literacy is defined in Health People 2010 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".

Health literacy 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. 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.

Health literacy varies by context and setting and is not necessarily 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. With the move towards a more "consumer-centric" health care system as part of an overall effort to improve the quality of health care and to reduce health care costs, individuals need to take an even more active role in health care related decisions. To accomplish this people need strong health information skills.

Skills Needed for Health Literacy

Patients are often faced with complex information and treatment decisions. Some of the specific tasks patients are required to carry out may include:

• evaluating information for credibility and quality,
• analyzing relative risks and benefits,
• calculating dosages,
• interpreting test results, or
• locating 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), and
• 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 websites.

Background

According to the American Medical Association, poor health literacy is "a stronger predictor of a person's health than age, income, employment status, education level, and race" (Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999). In Health Literacy: A Prescription to End Confusion, the Institute of Medicine reports that ninety million people in the United States, nearly half the population, have difficulty understanding and using health information. As a result, patients often take medicines on erratic schedules, miss follow-up appointments, and do not understand instructions like "take on an empty stomach".

Vulnerable populations include:

• Elderly (age 65+) - Two thirds of U.S. adults age 60 and over have inadequate or marginal literacy skills, and 81% of patients age 60 and older at a public hospital could not read or understand basic materials such as prescription labels (Williams, MV. JAMA, December 6, 1995).
• Minority populations
• Immigrant populations
• Low income - Approximately half of Medicare/Medicaid recipients read below the fifth-grade level (http://www.medicarerights.org/maincontentstatsdemographics.html)
• People with chronic mental and/or physical health conditions

Reasons for limited literacy skills include:

• Lack of educational opportunity - people with a high school education or lower
• Learning disabilities
• Cognitive declines in older adults
• Use it or lose it - Reading abilities are typically three to five grade levels below the last year of school completed. Therefore, 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. Health status is influenced by several related socioeconomic factors. Literacy impacts income level, occupation, education, housing, and access to medical care. The poor and illiterate are more likely to work under hazardous conditions or be exposed to environmental toxins.

The results of the 1992 Adult Literacy Survey (National Center for Education Statistics, US Department of Education) indicate that adults with low literacy were more likely than those with higher literacy levels to be poor and to have health conditions which limit their activities. There are both direct and indirect consequences of low health literacy. The direct effects include non-compliance or medication errors. The indirect effects are harder to measure, but may include insurance issues, accessibility to health care, and poor health behavior choices. "Groups with the highest prevalence of chronic disease and the greatest need for health care had the least ability to read and comprehend information needed to function as patients", according to the Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association (JAMA, Feb 10, 1999).

Research Findings on Impact of Literacy

According to the Agency for Health Care Research and Quality Report, Literacy and Health Outcomes (January 2004), low health literacy is linked to higher rates of hospitalization and higher use of expensive emergency services. This evidence-based literature review highlights numerous studies that provide a detailed analysis of the correlation between low health literacy and poor health. Below are just a few of the conclusions from studies on health literacy and outcomes.

• Cancer Treatment (Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002)

Low literacy adversely impacts cancer incidence, mortality, and quality of life. For example:

1. Cancer screening information may be ineffective; as a result, patients may be diagnosed at a later stage.
2. Treatment options may not be fully understood; therefore, some patients may not receive treatments that best meet their needs.
3. Informed consent documents may be too complex for many patients and consequently, patients may make suboptimal decisions about accepting or rejecting interventions.

• Diabetes (Schillinger, Dean, JAMA, July 24/31, 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.

• Asthma (Williams, MV, Chest, October 1998)

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.

• Hypertension and Diabetes (Williams MV, Archives of Internal Medicine, January 26, 1998)

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

Economic Impact of Low Health Literacy

In addition to the effects of low health literacy on the individual patient, there are economic consequences of low health literacy to society. The National Academy on an Aging Society estimated that additional health care costs due to low health literacy were about $73 billion in 1998 dollars (Health Literacy Fact Sheet, http://www.agingsociety.org/agingsociety/publications/fact/fact_low.html).

After adjusting for health status, education level, socioeconomic status, and other demographics factors, people with low functional literacy have less ability to care for chronic conditions and use more health care services. The information below is from the Center on an Aging Society at Georgetown University (http://hpi.georgetown.edu/agingsociety/pubhtml/healthlit.html).

• Among adults who stayed overnight in a hospital in 1994, those with low health literacy averaged 6% more hospital visits, and stayed in the hospital nearly two days longer than adults with higher health literacy skills.
• When self-reported health status is taken into account, patients with low health literacy skills had fewer doctor visits but used substantially more hospital resources.
• The estimated additional health care expenditures due to low health literacy skills are about $73 billion in 1998 health care dollars. This includes an estimated $30 billion for the population that is functionally illiterate plus $43 billion for the population that is marginally literate.
• This amount is about what Medicare is expected to pay to finance physician services, dental services, home health care, prescription drugs, and nursing home care combined.
• Medicare pays 39 percent of the expenditures. Medicaid pays more than $10 billion dollars, or 14 percent of the additional health care expenditures. Most of the additional expenditure is financed through FICA taxes on workers.

Role of the Consumer Health Librarian

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.

Consumer health librarians can actively develop partnerships with:

• literacy groups (adult basic education, English as a Second Language, etc.)
• community-based organizations
• public and private schools (K-12)
• public libraries
• senior-citizen facilities (adult day care, 55+ housing complexes, assisted-living facilities, nursing homes, etc.)
• health care associations

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:

• Developing partnerships with K-12 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

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:

1. literacy screening
2. methods of health education
3. medical outcomes and economic costs and
4. 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 multi-lingual, 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 Organizations and Programs

Health Literacy. American Medical Society Foundation.
http://www.ama-assn.org/ama/pub/category/8115.html
515 North State Street
Chicago, Illinois 60610

Ask Me 3
http://www.npsf.org/askme3/
Sponsored by the Partnership for Clear Health Communication at the National Patient Safety Foundation. "The National Patient Safety Foundation's mission is to improve the safety of the health care system, of which health literacy is a critical component. Understanding that communication breakdowns are the leading source of medical errors, NPSF will be integrating PCHC's flagship health literacy program, Ask Me 3, into its program offerings. Ask Me 3 promotes three simple but essential questions that patients should ask their providers in every health care interaction: 1)What is my main problem?; 2) What do I need to do?; 3) Why is it important for me to do this?

National Literacy and Health Program. Canadian Public Health Association.
http://www.nlhp.cpha.ca/
Promotes awareness among health professionals of the links between literacy and health.

Health Literacy Studies
http://www.hsph.harvard.edu/healthliteracy/index.html
Harvard School of Public Health
Department of Society, Human Development and Health
677 Huntington Avenue, 7th Floor
Boston, MA 02115 USA

National Center for the Study of Adult Learning and Literacy
Harvard University Graduate School of Education
Nichols House
7 Appian Way
Cambridge, MA 02138 USA
Phone: 617-432-3914
Fax: 617-432-3123
Email: healthliteracy@hsph.harvard.edu

Health Literacy Center, University of New England
http://www.une.edu/hlit/
Area Health Education Center Program
11 Hills Beach Road
Biddeford, ME 04005
Phone: 207-283-0171

Health Literacy Consulting
http://www.healthliteracy.com/
Helen Osborne, M.Ed., OTR/L
31 Highland Street, Suite 201
Natick, MA 01760
Phone: 508-653-1199
Fax: 508-650-9492
Email: Helen@healthliteracy.com

Health Literacy Month
http://www.healthliteracy.com/hlmonth/
Helen Osborne, M.Ed., OTR/L
31 Highland Street, Suite 201
Natick, MA 01760
Phone: 508-653-1199
Fax: 508-650-9492
Email: Helen@healthliteracy.com

Literacy and Health Project
http://www.opha.on.ca/resources/i-n.html#literacy
Ontario Public Health Association and Frontier College
Phone: 416-367-3313.

Medical Library Association
http://www.mlanet.org/resources/healthlit/
65 East Wacker Place, Suite 1900
Chicago, IL 60601-7246
Tel., 312.419.9094
Fax, 312.419.8950
info@mlahq.org
A national organization of health science librarians. The Health Information Toolkit includes information for Health and Information Professions, and information for Consumers.

Movement for Canadian Literacy (MCL)
http://www.literacy.ca/about/about.htm
A national non-profit organization representing literacy coalitions, organizations, and individuals

National Institute for Literacy
http://www.nifl.gov/
1775 I Street N.W., Suite 730
Washington DC 20006-2401
Phone: 202-233-2025

Office of Minority Health
http://www.omhrc.gov/
PO Box 37337
Washington DC, 20013-773
Phone: 800-444-6472

Pfizer Clear Health Communication Initiative
http://www.pfizerhealthliteracy.com/

University of Virginia School of Medicine Health Literacy Curriculum
http://www.healthsystem.virginia.edu/internet/som-hlc/
PO Box 800325
Charlottesville, VA 22908
434-924-2629
Phone: 434-924-2629
Fax: 434-982-2597

World Education, Health and Literacy Initiative
http://www.worlded.org/
44 Farnsworth Street
Boston, MA 02111-1211
Phone: 617-482-9485
Fax: 617-482-0617

Bibliographies, Webliographies, and Web Resources

Understanding Health Literacy and its Barriers. National Library of Medicine.
http://www.nlm.nih.gov/pubs/cbm/healthliteracybarriers.html
Current Bibliographies in Medicine 2004-1

MEDLINE/PubMed Search and Health Literacy Information Resources. National Library of Medicine.
http://www.nlm.nih.gov/services/health_literacy.html

Proceedings of the Surgeon General's Workshop on Improving Health Literacy
September 7, 2006, National Institutes of Health, Bethesda, MD
http://www.surgeongeneral.gov/topics/healthliteracy/toc.htm

Annotated Bibliographies: Health, Communication and Literacy
http://www.centreforliteracy.qc.ca/pubs.htm#biblios
The Centre for Literacy of Quebec
3040 Sherbrooke Street West, Room 4B. 1-6,
Montreal, QC H3Z 1A4, Canada
Phone: 514-931-8731 Fax: 514-931-5181
Email: info@centreforliteracy.qc.ca

Health and Literacy Compendium
http://www.worlded.org/us/health/docs/comp/index.html
Contains over 80 citations to print and web materials that cover the links between health status and literacy status; how to assess and develop easy-to-read health education materials; how to teach health with literacy in mind, and how to teach literacy using health content; background information on literacy and "participatory" education methodologies; curricula and materials on a variety of health topics for adults with limited literacy skills; bibliographies and databases of easy-to-read or multi-lingual health information and brochures; bibliographies and databases of materials about the connections between health and literacy.

Health Literacy. Michigan Adult Learning & Technology Center.
http://www.malt.cmich.edu/healthlit.htm
Sections: Research about the literacy problem and designing easy-to-read materials; the health literacy problem and the solution; legal writing in plain English/legal implications of plain English; focus groups and field testing; impact of marginal literacy on health and healthcare; communications planning; sources of easy-to read patient education materials; sources for clip art.

Health Communication. Partners in Information Access for the Public Health Workforce.
http://phpartners.org/hp/health_comm.html
Special PubMed queries on Healthy People 2010 topics

Health Literacy Listservs

National Institute for Literacy
www.nifl.gov/mailman/listinfo/Healthliteracy
Complete the form on the National Institute for Literacy website.

Health Literacy Consulting
www.healthliteracy.com/newsletter.asp
Select "What's New" list - a free monthly message about the latest articles and tips, and/or "Countdown to Health Literacy Month".