1. Mandates for Health Literacy in Medicine and Education – the IOM Report and Beyond
Lynn Nielsen, Ph.D.
Assistant Professor of Physiology & Director of Research
DeBusk College of Osteopathic Medicine
Nearly half of all American adults--90 million people--have difficulty understanding and using health information, and there is a higher rate of hospitalization and use of emergency services among patients with limited health literacy, says a report from the Institute of Medicine titled Health Literacy: A Prescription to End Confusion. Limited health literacy may lead to billions of dollars in avoidable health care costs. More than a measurement of reading skills, health literacy also includes writing, listening, speaking, arithmetic, and conceptual knowledge. Health literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health. At some point, most individuals will encounter health information they cannot understand. Even well educated people with strong reading and writing skills may have trouble comprehending a medical form or doctor's instructions regarding a drug or procedure. A concerted effort by the public health and health care systems, the education system, the media, and health care consumers is needed to improve the nation's health literacy, the report says. If patients cannot comprehend needed health information, attempts to improve the quality of care and reduce health care costs and disparities may fail. The report recommends that health care systems should develop and support programs to reduce the negative effects of limited health literacy and that health knowledge and skills be incorporated into the existing curricula of kindergarten through 12th grade classes, as well as into adult education and community programs. Furthermore, programs to promote health literacy, health education, and health promotion programs should be developed with involvement from the people who will use them. And all such efforts must be sensitive to cultural and language preferences.

2. Health literacy is a shared function of social and individual factors
Individuals’ health literacy skills and capacities are mediated by their education, culture, and language
Finding 2-1 Literature from a variety of disciplines is consistent in finding that there is strong support for the committee’s conclusion that health literacy, as defined in this report, is based on the interaction of individuals’ skills with health contexts, the health-care system, the education system, and broad social and cultural factors at home, at work, and in the community. The committee concurs that responsibility for health literacy improvement must be shared by these various sectors. The committee notes that the health system does carry significant but not sole opportunity and responsibility to improve health literacy.1

3. Potential Intervention Points
Socioeconomic status, education level, and primary language all affect whether consumers will seek out health information, where they will look for the information, what type of information they prefer, and how they will interpret that information.
The committee developed a framework for health literacy which identifies three major areas of potential intervention and forms the organizational principle of this report illustrates the potential influence on health literacy as individuals interact with educational systems, health systems, and cultural and social factors, and suggests that these factors may ultimately contribute to health outcomes and costs. The proposed framework is a model, because available research supports only limited conclusions about causality. However, the cumulative effect of a body of consistent evidence suggests that causal relationships may exist between health literacy and health outcomes. Research is needed to establish the nature of the causal relationships between and among the various factors portrayed in the framework. 1

4. Intervention points for improving health literacy
Health systems
Social marketing
Education systems
Adult education is a major intervention point for improving health literacy.
Partnerships between medical and educational institutions are critical to improving health literacy.
Social marketing provides an additional and extensive knowledge base and partnership opportunity.
Finding 2-2 The links between education and health outcomes are strongly established. The committee concludes that health literacy may be one pathway explaining the well-established link between education and health, and warrants further exploration.1

5. Partnerships Critical to improved health literacy Repeatedly mandated
Rare
Collaboration between fields is critical to improved health literacy. However, these collaborations are rare. Links between organizations service health care, health awareness, and literacy are weak at best. The majority of studies in health literacy are focused on interventions tested with patients with specific diseases.2,3 Studies of literacy rarely include attention to health and mental health content. Cross-field partnerships have been called for repeatedly.1,4
Finding 4-4 Health literacy efforts have not yet fully benefited from research findings in social and commercial marketing.1
Equally, health literacy efforts have not fully benefited from the large body of knowledge in the field of adult education.

6. Obstacles to Partnership
Lack of action on existing science education standards
Inadequate funding of recommended programs
Lack of awareness across fields
In 1995, the Joint Committee on National Health Standards published the National Health Education Standards with the subtitle Achieving Health Literacy. These standards describe the knowledge and skills essential for health literacy, and detail what students should know and be able to do in health education by the end of grades 4, 8, and 11. They provide a framework for curricula development and student assessment. Unfortunately, these standards have not been widely met.1,5
Funding for partnerships between adult education and health system organizations is not widely available. And existing NIH granting program funds less than 10% of applications received, although a greater percentage are of high quality.
Recommendation 3. Congress should provide appropriate resources to the Health Resources and Services Administration to expand experientially based workforce training programs in rural areas to ensure that all health care professionals master the core competencies of providing patient-centered care, working in interdisciplinary teams, employing evidence-based practice, applying quality improvement, and utilizing informatics. These competencies are relevant to the many discipline-specific and multidisciplinary programs supported under Titles VII and VIII of the Social Security Act. Specifically, more stable and generous funding should be provided for the Quentin Burdick Program to conduct demonstrations in several rural communities that provide for (1) the training of leadership teams to mobilize community resources, (2) communitywide health literacy programs, and (3) interdisciplinary health professions education in the core competencies essential to improving quality.4

7. Fostering Partnerships
Partnerships wanted
Adult education programs
Health systems
Adult learners
Finding 5-2 Opportunities for measuring literacy skill levels required for health knowledge and skills, and for the implementation of programs to increase learner’s skill levels, currently exist in adult education programs and provide promising models for expanding programs. Studies indicate a desire on the part of adult learners and adult education programs to form partnerships with health communities.1
Rudd RE, Moeykens BA. Adult educators’ perceptions of health issues and topics in adult basic education. NCSALL Report #8. Cambridge, MA: National Center for the Study of Adult Learning and Literacy
Murphy PW, Davis TC, Mayeaux EJ, Sentell T, Arnold C, Rebouche C. Teaching nutrition education in adult learning centers: Linking literacy, health care, and the community. Journal of Community Health Nursing. 13(3): 149–
Jacobson E, Degener S, Purcell-Gates V. Creating Authentic Materials for the Adult Literacy Classroom: A Handbook for Practitioners. Cambridge, MA: World Education Inc

8. Engage Multiple Fields
Health care services should be developed in partnerships with the local community, organizations, and institutions
The provision of rural health care services should be shaped and guided by local community and rural organizations and institutions. Although not all health care services can be provided in rural areas, rural communities can be instrumental in helping shape the health care systems on which they depend. Solutions to rural health care issues should be shaped by the structured input of rural residents. Both locally operated health systems and those that are part of networks spanning urban and rural communities should incorporate rural perspectives and local residents in their governing structures.
Strong leadership will also be needed to engage the broader rural community in health and health care issues. Efforts to strengthen what are often fragile delivery systems in rural areas will be more successful to the extent that they engage key stakeholders in a community (e.g., employers, schools, local government). Addressing population health needs and providing ongoing support for those with chronic illnesses will also necessitate collaboration with social services and faith-based organizations. Health care institutions will need to partner with schools, local media, libraries, and other organizations in their efforts to raise population health literacy. Lastly, fundamental reform of the personal and population health systems will necessitate developing innovative approaches to the financing and delivery of health services. 4

9. Local Resources Health care institutions Adult education programs
Libraries
Community leaders
Health care institutions include clinics, hospitals, visiting nurses, medical education programs, and insurers
Adult education programs include literacy programs, community colleges, and GED programs
Libraries and mobile libraries, community centers, and churches are existing resources for access to adult learners, and for dissemination of learning materials
Community leaders include church leaders, local employers, and members of community organizations
The residents of rural communities also have a key role to play in improving population health. Residents can contribute to improving their own health and that of others by pursuing healthy behaviors and complying with treatment regimens, assuming appropriate caregiving roles for family members and neighbors, and volunteering for community health improvement efforts. In many rural populations, low levels of health literacy (the degree to which individuals have the capacity to obtain, process, and understand basic health information) currently hamper efforts to engage residents in health- related activities. The Department of Education and state education agencies should work in partnership with local nonprofit literacy associations and libraries to measure and improve the health literacy of rural community residents by, among other things, providing access to Internet-based health resources and training in information technology. 4
Local colleges could also partner with local community libraries to provide residents with a resource for general adult literacy programs, health literacy programs (e.g., locating and understanding health information), and means of overcoming language barriers.4

10. Example Partnerships Demonstration Projects Develop Curricula
Train the Trainer
Health literacy must be fostered in ways that acknowledge the culture of the rural population. There are many opportunities to redesign existing workforce training programs in ways that will support rural communities in their efforts to improve the quality of health care and enhance population health:
More stable and generous funding should be provided for the Quentin Burdick Program to conduct demonstrations in several rural communities. These demonstrations should provide for (1) the training of leadership teams to mobilize community resources, (2) communitywide health literacy programs, and (3) interdisciplinary health professions education in the core competencies essential to improving quality.4
Partnerships between health literacy researchers and existing adult education programs can promote the development of appropriate learning materials. These materials must be developed with input from the users, that is, adult educators and adult learners, including ‘on the ground’ experts and focus groups that include adult educators and learners. Appropriate outcomes measures must be collected and examined, and materials re-created through iterations of this process. Only when materials have been shown to be effective useful and of interest to adult educators and learners should dissemination proceed.
Organizations involved in development of learning materials and curricula must be prepared to disseminate these at little or no cost to the user. While internet and CD dissemination of materials is a low-cost approach, user input must determine the dissemination format.
Train the trainer programs consist of a community expert receiving health literacy education from the developer of the curricula. Like other curricula and materials, these programs must be developed jointly by all stakeholders, and tested for efficacy and utility. The benefit of train the trainer programs is that the program can become self-perpetuating at a low cost. Local trainers pass the program to community stakeholders, who in turn use the program with adult learners. The number of individuals trained increases from the project developer, to the trainers, to the educators.

11. Leadership for Community Change
Kellogg Foundation Demonstration Project
Classroom training
Mentoring
Networking
Community-based leaders
Local organizations
Multiple sites
The W. K. Kellogg Foundation’s Leadership for Community Change program offers an example of how community-based rural leaders can be cultivated.
The program emphasizes the training of leaders already in place in their communities, rather than the identification and grooming of potential leaders from outside of the community, thus strengthening existing local resources.
Begun in 2003, this program will work closely with local organizations at six rural and urban sites around the country to recruit a cohort of fellows (25 per site) who will participate in a mix of classroom training, mentoring, and networking at the national level over a period of 2 years (W. K. Kellogg Foundation, 2004).4
This program provides an example of the type of program promoted in this presentation.
The program focus is on the community.
Adequate funding is provided, in this case by a national nonprofit organization. Nonprofit organizations have been and will continue to be some of the greatest contributors to health literacy efforts in the community.
The program is run in several locations so that outcomes measures will reflect a broad population.
Local organizations and leaders, already in place, are central to the program.
The project included several activities, including a component that supports members in not only taking ownership of the program, but also to become advocates.

12. Promote cross-discipline relationships
Develop self-continuing projects
Take action on existing mandates
Mandates exist for science education, demonstration programs, education curricula and materials, and outcomes measurement. Sustainable approaches are low cost, community based, and can continue with minimal external support. However, initial awareness and funding must be increased for these projects to have be initiated.

13. References
1 Committee on Health Literacy, Board on Neuroscience and Behavioral Health. Health Literacy: A Prescription to End Confusion. L Nielsen-Bohlman, AM Panzer, DA Kindig, Eds. Washington DC: National Academies Press,
4 Committee on the Future of Rural Health Care, Board on Health Care Services. Quality Through Collaboration: The Future of Rural Health Care. Washington DC: National Academies Press,
References
1 Committee on Health Literacy, Board on Neuroscience and Behavioral Health. Health Literacy: A Prescription to End Confusion. L Nielsen-Bohlman, AM Panzer, DA Kindig, Eds. Washington DC: National Academies Press,
2 Howard-Pitney B, Winkleby MA, Albright CL, Bruce B, Fortmann SP The Stanford Nutrition Action Program: A dietary fat intervention for low-literacy adults. American Journal of Public Health. 87(12): 1971–1976.
3 U Sarkara, JD Pietteb, R Gonzalesa, D Lesslere, LD Chewe, B Reilly, J Johnson, MBrunt, J Huang, M Regenstein and D Schillinger. Preferences for self-management support: Findings from a survey of diabetes patients in safety-net health systems. Patient Education and Counseling. 2007
4 Committee NRC (National Research Council). National Science Education Standards. Washington, DC: National Academy Press
5 Committee on the Future of Rural Health Care, Board on Health Care Services. Quality Through Collaboration: The Future of Rural Health Care. Washington DC: National Academies Press,

14. Further Reading
A selection of articles relevant to health systems and adult education partnerships to address health literacy
Rudd RE A maturing partnership. Focus on Basics: Connecting Research and Practice. 5(3).
Rudd RE, Moeykens BA Adult educators’ perceptions of health issues and topics in adult basic education. NCSALL Report #8. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.
Pateman B, Grunbaum JA, Kann L Voices from the field—A qualitative analysis of classroom, school, district, and state health education policies and programs. Journal of School Health. 69(7): 258–263.
NRC (National Research Council) National Science Education Standards. Washington, DC: National Academy Press.
Murphy PW, Davis TC, Mayeaux EJ, Sentell T, Arnold C, Rebouche C Teaching nutrition education in adult learning centers: Linking literacy, health care, and the community. Journal of Community Health Nursing. 13(3): 149–158.
Morse L Improving Health Literacy: An Educational Response to a Public Health Problem. Presentation given at a workshop of the Institute of Medicine Committee on Health Literacy. December 11, 2002, Washington, DC
Matthews TL, Sewell JC State Official’s Guide to Health Literacy. Lexington, KY: The Council of State Governments.
Joint Committee on National Health Education Standards National Health Education Standards: Achieving Health Literacy. Atlanta, GA: American Cancer Society.
Jacobson E, Degener S, Purcell-Gates V Creating Authentic Materials for the Adult Literacy Classroom: A Handbook for Practitioners. Cambridge, MA: World Education Inc.
HHS (U.S. Department of Health and Human Services) Healthy People 2010: Understanding and Improving Health. Washington, DC: U.S. Department of Health and Human Services. [Online]. Available: [accessed: January 15, 2003].
Doak LG, Doak CC, Meade CD Strategies to improve cancer education materials. Oncology Nursing Forum. 23(8): 1305–1312.

15. Rudd RE. 2002. A maturing partnership
Rudd RE A maturing partnership. Focus on Basics: Connecting Research and Practice. 5(3).
Rudd RE, Moeykens BA Adult educators’ perceptions of health issues and topics in adult basic education. NCSALL Report #8. Cambridge, MA: National Center for the Study of Adult Learning and Literacy.
Pateman B, Grunbaum JA, Kann L Voices from the field—A qualitative analysis of classroom, school, district, and state health education policies and programs. Journal of School Health. 69(7): 258–263.
NRC (National Research Council) National Science Education Standards. Washington, DC: National Academy Press.
Murphy PW, Davis TC, Mayeaux EJ, Sentell T, Arnold C, Rebouche C Teaching nutrition education in adult learning centers: Linking literacy, health care, and the community. Journal of Community Health Nursing. 13(3): 149– 158.
Morse L Improving Health Literacy: An Educational Response to a Public Health Problem. Presentation given at a workshop of the Institute of Medicine Committee on Health Literacy. December 11, 2002, Washington, DC
Matthews TL, Sewell JC State Official’s Guide to Health Literacy. Lexington, KY: The Council of State Governments.
Joint Committee on National Health Education Standards National Health Education Standards: Achieving Health Literacy. Atlanta, GA: American Cancer Society.
Jacobson E, Degener S, Purcell-Gates V Creating Authentic Materials for the Adult Literacy Classroom: A Handbook for Practitioners. Cambridge, MA: World Education Inc.
HHS (U.S. Department of Health and Human Services) Healthy People 2010: Understanding and Improving Health. Washington, DC: U.S. Department of Health and Human Services. [Online]. Available: [accessed: January 15, 2003].
Doak LG, Doak CC, Meade CD Strategies to improve cancer education materials. Oncology Nursing Forum. 23(8): 1305–1312.

16. Members of the IOM Committee on Health Literacy
Dr. Dyanne Affonso, Executive Administrative Specialist, Dept. of Pharmacy, University of Hawaii Hilo, 60 Nowelo St., Ste 101, Hilo, HI (808)
Dr. Eric Chudler, Eric H. Chudler, Director of Education and Outreach, University of Washington Engineered Biomaterials (UWEB), Department of Bioengineering, BOX , University of WashingtonSeattle, WA (206)
Dr. Terry Davis, Contributor, Professor of Medicine and Pediatrics , Director of Behavioral Science Section, Feist-Weiller Cancer Center, LSU Health Sciences Center-Shreveport, Kings Highway, Shreveport, Louisiana  (318)
Dr. Marilyn Gaston, Assistant Surgeon General of the United States, Retired,
Dr. David Howard,  Assistant Professor, Department of Health Policy and Management, Rollins School of Public Health Room 610, Emory University, 1518 Clifton Road NE Atlanta, GA
Dr. David Kindig, Committee Chair, Professor of Preventive Medicine and Director of the Wisconsin Network for Health Policy Research, Department of Preventive Medicine, 760 WARF Building, 610 N. Walnut St., Madison, Wisconsin (608)
Dr. Cathy Meade, Director, Education Program, Leader, Cancer, Culture, and Literacy Institute, Moffit Cancer Center, Univerity of South Florida, H. Lee Moffitt Cancer Center & Research Institute, Magnolia Drive, Tampa, FL (813)
Dr. Lynn Nielsen, Committee Director, Assistant Professor of Physiology & Director of Research, DeBusk College of Osteopathic Medicine, Lincoln Memorial University, 6965 Cumberland Gap Parkway Harrogate, Tennessee
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17. Members of the IOM Committee on Health Literacy, continued
Allison Panzer, Committee Staff, University of Rochester Medical Center,
Dr. Ruth Parker, Professor of Medicine, Dept. of General Medicine, Emory School of Med (404)
Dr. Victoria Purcall-Gates, Canada Research Chair in Early Childhood Literacy, Faculty of Education, Department of Language & Literacy, 2125 Main Mall,304 B Scarfe Hall, University of British Columbia, Vancouver, B.C., Canada V6T 1Z
Irv Rootman, Centre for Community Health Promotion Research, Box 3060 STN CSC, Victoria B.C. V8W 3R4 (250)  
Dr. Rima Rudd, Senior Lecturer on Society, Human Development, and Health, Department of Society, Human Development, and Health, Harvard Huntington Avenue, Kresge Building 7th Floor, Boston, MA
Dr. Dean Schillinger, University of California San Francisco, San Francisco General Hospital, 1001 Potrero Avenue, San Francisco, CA 94110, Box 1364, Bldg (415)
Dr. Susan Scrimshaw, President, Simmons College, 300 The Fenwaym Boston, MA
Bill Smith, Senior Scientist and Director, Social Change Group, Academy for Educational Development, Connecticut Ave., NW, Washington, D.C
Barry Weiss, Contributor, Professor , Department of Family and Community Medicine, University of Arizona College of Medicine, 1501 N. Campbell Avenue, PO Box , Tucson, Arizona (520)