HEALTH LITERACY What You Need To Know and What You Can Do About It

Objectives 1.Demonstrate a basic understanding of key health literacy concepts. 2.Communicate the importance of health literacy to colleagues, grantees, and contractors. 3.Identify specific ways to integrate health literacy into your work. At the end of this presentation, you will be able to: 2

Overview 1.What is health literacy and why is it important? 2.Health literacy at HHS 3.Strategies for improving health literacy 4.Integrating health literacy into your work 5.Resources 3

What Is Health Literacy and Why Is It Important?

What Is Health Literacy? 5 This slide contains video clips of patients discussing their health literacy experiences. Patients describe in their own words their difficulties reading medication labels, understanding informed consent forms, and following a drug regimen. In the words of one patient, "It's just a language that I'm not familiar with." The video is produced by the Academy of Educational Development in collaboration with the Institute of Medicine with special thanks to the American Medical Association Foundation and the National Center for the Study of Adult Learning and Literacy.

What Is Health Literacy? 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 is dependent on both individual and systemic factors: 1.Communication skills of lay people and professionals 2.Knowledge of lay people and professionals of health topics 3.Culture 4.Demands of the healthcare and public health systems 5.Demands of the situation/context 6

What Factors Affect Health Literacy? 1.Health literacy is dependent on the communication skills of lay people and health professionals. Communication skills include literacy skills (e.g., reading, writing, numeracy), oral communication skills, and comprehension. Communication skills are context specific. 7

What Factors Affect Health Literacy? 2. Health literacy is dependent on lay person and professional knowledge of various health topics. People with limited or inaccurate knowledge about the body and the causes of disease may not: –Understand the relationship between lifestyle factors (such as diet and exercise) and health outcomes –Recognize when they need to seek care Health information can overwhelm people with advanced literacy skills. 8

What Factors Affect Health Literacy? 3. Health literacy is dependent on culture. Culture affects: How people communicate and understand health information How people think and feel about their health When and from whom people seek care How people respond to recommendations for lifestyle change and treatment 9

What Factors Affect Health Literacy? 4. Health literacy is dependent on the demands of the healthcare and public health systems. Individuals need to read, understand, and complete many kinds of forms in order to receive treatment and payment reimbursement. Individuals need to know about the various types of health professionals and services as well as how to access care. 10

What Factors Affect Health Literacy? 5. Health literacy is dependent on the demands of the situation/context. Health contexts are unusual compared to other contexts because of an underlying stress or fear factor. Healthcare contexts may involve unique conditions such as physical or mental impairment due to illness. Health situations are often new, unfamiliar, and intimidating. 11

What health literacy is NOT… Health literacy is NOT… Plain Language. Plain language is a technique for communicating clearly. It is one tool for improving health literacy. Cultural Competency. Cultural competency is the ability of professionals to work cross-culturally. It can contribute to health literacy by improving communication and building trust. 12

Why Is Health Literacy Important? Health literacy is important because it affects peoples ability to: Navigate the healthcare system, including locating providers and services and filling out forms Share personal and health information with providers Engage in self-care and chronic disease management Adopt health-promoting behaviors, such as exercising and eating a healthy diet Act on health-related news and announcements These intermediate outcomes impact: Health outcomes Healthcare costs Quality of care 13

Health Literacy and Health Outcomes Persons with limited health literacy skills have: –Higher utilization of treatment services Hospitalization Emergency services –Lower utilization of preventive services Higher utilization of treatment services results in higher healthcare costs. 14

Health Literacy and Quality of Care Health literacy affects the quality of health care. Good quality means providing patients with appropriate services, in a technically competent manner, with good communication, shared decisionmaking, and cultural sensitivity.* * From IOM. Crossing the Quality Chasm: A New Health System for the 21st Century

Health Literacy and Shame People with limited health literacy often report feeling a sense of shame about their skill level. Individuals with poor literacy skills are often uncomfortable about being unable to read well, and they develop strategies to compensate. 16

Measuring Health Literacy Health literacy is a new component of the 2003 National Assessment of Adult Literacy (NAAL). –Nationally representative sample of more than 19,000 adults aged 16 and older in the United States –Assessment of English literacy using prose, document, and quantitative scales 17

Measuring Health Literacy Tasks used to measure health literacy were organized around three domains: –Clinical: Filling out a patient form –Prevention: Following guidelines for age- appropriate preventive health services –Navigation of the healthcare system: Understanding what a health insurance plan will pay for 18

Measuring Health Literacy Proficient: Can perform complex and challenging literacy activities. Intermediate: Can perform moderately challenging literacy activities. Basic: Can perform simple everyday literacy activities. Below Basic: Can perform no more than the most simple and concrete literacy activities. Nonliterate in English: Unable to complete a minimum number of screening tasks or could not be tested because did not speak English or Spanish. 19

Percentage of Adults in Each Literacy Level: Source: National Center for Education Statistics, Institute for Education Sciences

Nonliterate in English 21 Source: National Center for Education Statistics, Institute for Education Sciences

Difficulty of Selected Health Literacy Tasks 22 Below Basic Basic Intermediate Proficient Circle the date of a medical appointment on a hospital appointment slip. (101) Give two reasons a person should be tested for a specific disease, based on information in a clearly written pamphlet. (202) Determine what time a person can take a prescription medication, based on information on the drug label that relates the timing of medication to eating. (253) Calculate an employees share of health insurance costs for a year, using a table. (382) Source: National Center for Education Statistics, Institute for Education Sciences Average score: 245

Percentage of Adults in the Below Basic Health Literacy NAAL Population: The Did not obtain health information over the Internet category does not include prison inmates. 2 Disabilities include vision, hearing, learning disability, and other health problems. Source: U.S. Department of Education, Institute of Education Sciences, National Center for Education Statistics, 2003 National Assessment of Adult Literacy (NAAL)

Percentage of Adults in Each Health Literacy Level, by Self-Assessment of Overall Health: Source: U.S. Department of Education, Institute of Education Sciences, National Center for Education Statistics, 2003 National Assessment of Adult Literacy

Sources of Health Information 25 Percentage of adults with Below Basic or Basic health literacy who get little or no health information from the following sources: SourceBelow BasicBasic Internet85%70% Magazines64%47% Books or Brochures62%45% Newspapers59%51% Family or Friends47%40% Healthcare Providers35%30% Radio or TV33%29% Source: National Center for Education Statistics, Institute for Education Sciences

The Bottom Line Only 12 percent of adults have Proficient health literacy. In other words, nearly 9 out of 10 adults may lack the skills needed to manage their health and prevent disease. Fourteen percent of adults (30 million people) have Below Basic health literacy. These adults are more likely to report their health as poor (42 percent) and are more likely to lack health insurance (28 percent) than adults with Proficient health literacy. 26

Measuring Health Literacy Measures of health literacy at the individual level were developed in the 1990s: Rapid Estimate of Adult Literacy in Medicine (REALM) Test of Functional Health Literacy in Adults (TOFHLA and S-TOFHLA) 27

Measuring Health Literacy Health literacy measures based on functional literacy do not capture the full range of skills needed for health literacy. Current assessment tools (for populations and individuals) cannot differentiate among: –Reading ability –Lack of health-related background knowledge –Lack of familiarity with language and materials –Cultural differences in approaches to health. 28

Who Is at Risk? The problem of limited health literacy is greater among: –Older adults –Those who are poor –People with limited education –Minority populations –Persons with limited English proficiency (LEP) 29

Who Is at Risk? Many of the same populations at risk for limited health literacy also suffer from disparities in health status, illness (including heart disease, diabetes, obesity, HIV/AIDS, oral disease, cancer deaths, and low birth weight), and death. 30

Health Literacy: Use of Preventive Services Persons with limited health literacy skills* are more likely to skip preventive measures such as: Mammograms Pap smears Flu shots *As defined by these studies 31

Health Literacy: Knowledge About Medical Conditions and Treatment Persons with limited health literacy skills: Are more likely to have chronic conditions and less likely to manage them effectively. Have less knowledge of their illness (e.g., diabetes, asthma, HIV/AIDS, high blood pressure) and its management. 32

Health Literacy: Hospitalization and Health Status Persons with limited health literacy skills: Experience more preventable hospital visits and admissions. Are significantly more likely to report their health as poor. 33

Health Literacy: Healthcare Costs Predicted inpatient spending for persons with inadequate health literacy (measured by the S-TOFHLA) was $993 higher than that of persons with adequate health literacy. An earlier analysis found that the additional healthcare resources attributable to inadequate health literacy were $29 billion (assuming that inadequate literacy was equivalent to inadequate health literacy): –This number would have grown to $69 billion if even one-half of marginally literate adults were also considered not health literate. 34

Health Literacy at HHS

Commitment to Health Literacy Secretary Leavitt: Prevention and health information technology (IT) are two big priorities for the healthcare system. Secretary Thompsons Workgroup on Health Literacy – Prevention: A Blueprint for Action It is critical that individuals have access to health information in a way they can understand and make appropriate health decisions. 36

Office of the Surgeon General Health literacy improvement is one of the Surgeon Generals seven public health priorities. Health literacy is the currency of success for everything I am doing as the Surgeon General. Dr. Richard Carmona in his speech to the AMA House of Delegates, June

Healthy People 2010 Health Communication Objectives Internet access in the home Health literacy Research and evaluation of health communication programs Quality of Internet health Web sites Centers of Excellence in health communication Provider-patient communication 38

Healthy People 2010 Health Literacy Objectives Improve the health literacy of persons with inadequate or marginal literacy skills Increase the proportion of persons who report that their healthcare providers have satisfactory communication skills. 39

Funding NIH program announcement: Understanding and Promoting Health Literacy –Three annual submission dates 2004–2006 –Thirteen sponsoring institutes and offices with AHRQ –NIH spending in FY05 for these grants is close to $3 million, and it will total more than $8 million during the life of the awarded grants. HRSA provides funding to community-based organizations for health literacy activities and research. 40

Health Literacy Coordination Department health literacy workgroup Agency health literacy workgroups HHS health literacy intranet site Quick Guide to Health Literacy for HHS employees Health literacy action plan 41

Strategies for Improving Health Literacy

43 Four Strategies for Improving Health Literacy 1.Improve the usability of health information. 2.Improve the usability of health services. 3.Build knowledge to improve decisionmaking. 4.Advocate for health literacy improvement.

44 1. Improve the Usability of Health Information Is the information appropriate for the users? Is the information easy to use? Are you speaking clearly and listening carefully?

45 Identify the Intended Users of the Health Information and Services Know the intended users of the health information and services: –Demographics –Behavior –Culture –Attitude –Literacy skills –Language –Socioeconomic status –Access to services Decide which channel(s) and format are most appropriate.

46 Evaluation Evaluate users understanding before (formative), during (process), and after (outcome) the introduction of materials. Test! Test! Test!

47 Acknowledge Cultural Differences and Practice Respect Accepted roles of men and women Value of traditional vs. Western medicine Favorite or forbidden foods Manner of dress Body language, especially touching or proximity

48 What Is Cultural Competency? Cultural competency is the ability of health organizations and practitioners to recognize the following in diverse populations to produce a positive health outcome: Cultural beliefs Values Attitudes Traditions Language preferences Health practices

49 Use Plain Language Plain language is a strategy for making written and oral information easier to understand. Key elements of plain language include: –Using simple language and defining technical terms –Using the active voice –Breaking down complex information into understandable pieces –Organizing information so the most important points come first

50 Speak Clearly and Listen Carefully Use a medically trained interpreter if necessary: –For those who do not speak English well, plain English will not help. –Ensure that all language access services, including translation, are in plain language. –Refer to CLAS standards. Ask open-ended questions: –Elicit cultural beliefs and attitudes: Tell me about the problem and what may have caused it. Check for understanding: –Use the teach-back method: Have the person restate the information in his or her own words.

51 Improve the Usability of Health Information on the Internet People cannot find the information they seek on Web sites 60% of the time. Many elements that improve written and oral communication can be applied to information on the Web: Plain language Large font White space Simple graphics Dont forget Refer to the Office of Management and Budget (OMB) Policies for Federal Public Websites for further guidance.

52 Improve the Usability of Health Information on the Internet Health literacy has implications for Web- based communication beyond written text. Consider the following strategies: Apply user-centered design principles and conduct usability tests. Include interactive features and personalized content. Organize information to minimize scrolling. Use uniform navigation.

53 2. Improve the Usability of Health Services Improve the usability of health forms and instructions. Improve the accessibility of the physical environment. Establish a patient navigator program.

54 Health Forms and Instructions Healthcare and public health settings rely heavily on forms and printed instructions: Medical history forms Insurance forms Informed consent forms Child immunization records for school Test results Directions to the lab or pharmacy Hospital discharge and home care instructions Clinical research protocols and announcements

55 Improve the Usability of Health Forms and Instructions Revise forms to ensure clarity and simplicity. Test forms with intended users and revise as needed. Provide forms in multiple languages. Offer assistance with completing forms and scheduling followup care.

56 Improve the Physical Environment Settings with lots of signs and postings have a high literacy demand: Include universal symbols and clear signage in multiple languages. Promote easy flow through healthcare facilities. Create a respectful and shame-free environment.

57 Establish a Patient Navigator Program Patient navigators are health professionals or community health workers who help patients: –Evaluate their treatment options. –Obtain referrals. –Find clinical trials. –Apply for financial assistance. Congress recently passed the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005.

58 3. Build Knowledge to Improve Decisionmaking Improve access to accurate and appropriate health information. Facilitate healthy decisionmaking. Partner with educators to improve health curricula.

59 Improve Access to Accurate and Appropriate Health Information Create new mechanisms for sharing and distributing understandable health education materials: –Create audience or language-specific databases. –Partner with adult educators. Identify new methods for information dissemination: –Cell phones, palm pilots, personalized and interactive content, information kiosks, talking prescription bottles, etc.

60 Improve Access to Accurate and Appropriate Health Information Form partnerships with civic and faith-based organizations trusted in the community. Work with the media to increase awareness of health literacy issues. Work with providers to ensure that the health information they share is accurate, current, and reliable.

61 Facilitate Healthy Decisionmaking Use short documents that present bottom- line information, step-by-step instructions, and visual cues that highlight the most important information: –People process and use a limited amount of information when making a decision. Align health information and recommendations with access to services, resources, and support!

62 Partner With Educators Co-develop adult basic education lessons on health topics: Adult learners want information that is relevant to their lives; health content is likely to engage them. Construct lessons in which students use health-related texts, forms, and content from the Internet.

63 Partner With Educators The K–12 education system is a critical point of intervention to improve health literacy. Incorporate health-related tasks, materials, and examples into lesson plans. Design and disseminate health information to support existing state standards. Speak to students or help organize health- related field trips for local schools.

64 4. Advocate for Health Literacy Improvement Make the case for improving health literacy. Incorporate health literacy in mission and planning. Establish accountability for health literacy activities.

65 Make the Case for Improving Health Literacy Identify specific programs and projects affected by limited health literacy. Target key opinion leaders with health literacy information: –Explain how health literacy improvement relates to your mission, goals, and strategic plan. –Circulate relevant research and reports on health literacy to colleagues. –Post and share health literacy resources.

66 Incorporate Health Literacy in Mission and Planning Include goals and objectives specifically related to health literacy improvement in: –Strategic plans –Program plans –Educational initiatives Goals can be broad (e.g., Achieving Healthy People 2010 Objective 11-2) or specific to the mission of the office/program.

67 Include Health Literacy in Grants, Contracts, and MOUs Recommend that all products, materials, and forms be written in plain language and tested with the intended audiences.

68 Establish Accountability Include health literacy improvement criteria in program evaluation. Implement health literacy metrics.

69 Establish Accountability Sample metrics Our office will: Apply user-centered design principles to 75% of new Web pages created after January Ensure that all documents intended for the public are reviewed by a plain language expert. Provide all new employees with training in cultural competency and health literacy within 6 months of their date of hire.

Integrating Health Literacy Into Your Work at HHS

71 Integrating Health Literacy Into Your Work at HHS Communicate with the public. Work with grantees and contractors. Conduct and promote research. Manage staff and programs. Work with external stakeholders and partners.

72 Communicating With the Public HHS communication functions include: –Responding to public inquiries –Developing public health messages/campaigns –Developing materials, publications, Web sites –Improving public access to evidence-based health information –Promoting and disseminating messages, materials, recommendations, and guidelines –Working with the media/press –Acting as public liaisons –Developing and implementing communication plans –Providing health research results –Speechwriting –Contributing to professional and academic publications

73 Communicating With the Public Example: Working with the media Write press releases aimed at the general public; use plain language. Provide journalists with access to health literacy resources: –Create and post a health literacy backgrounder for journalists online (focus on data and news hooks). Highlight health literacy angle embedded in routine stories.

74 Working With Grantees and Contractors Require health literacy expertise as part of the skill set for the teams awarded contracts. Encourage grantees to address health literacy issues in their work plans and deliverables. Include health literacy improvement as a topic in all technical assistance and materials development grants.

75 Working With Grantees and Contractors Example: Ask Funding Opportunity Announcement applicants to explain how their projects will contribute to meeting the health literacy objectives in Healthy People 2010.

76 Promoting Research Integrating health literacy into research agendas: Review research portfolios. Convene research agenda-setting meetings for your topics: –Include colleagues from across HHS who share responsibility for these topics. Identify health literacy research questions. Communicate research findings to health professionals and the public (shared function with Communication staff).

77 Promoting Research Example: –Make presentations at scholarly meetings. Organize symposia and sessions on health literacy at annual professional association meetings. –Publish in professional journals.

78 Managing Staff and Programs Incorporate health literacy improvement into performance plans, GPRA, and PART. Include health literacy activities in budget requests. Communicate the importance of health literacy improvement to staff.

79 Managing Staff and Programs Example: Conduct a senior-level briefing at your office or agency: Include formal presentation and handouts. Tie health literacy improvement to your specific mission, goals, and objectives. Make specific recommendations.

80 Working With External Stakeholders and Partners External stakeholders and partners include: Healthcare professional organizations Patient advocacy and support organizations Consumer advocacy organizations State, local, and tribal governments Federal departments and agencies Academic institutions Industry trade organizations Media vendors and associations

81 Working With External Partners Arrangements may be: Formal (e.g., Collaborative Research and Development Agreements and signed letters of agreement) Informal collaboration In both cases, agencies can encourage partners to: Conduct user-centered research. Evaluate the impact of enhanced understandability.

82 Working With External Stakeholders Include representatives from your target population in planning, implementation, and evaluation. Be sure to include organizations that represent/serve populations with limited literacy skills.

83 Working With External Stakeholders and Partners Examples: When you are soliciting proposals for presentations at HHS-sponsored events, state your interest in receiving presentations that address health literacy issues.

84 Who Is Responsible for Improving Health Literacy? A health literate America is a society in which health systems and institutions take responsibility for providing clear communication and adequate support to facilitate health-promoting actions based on understanding. Institute of Medicine, 2004

85 Who Is Responsible for Improving Health Literacy? Our job as HHS employees is to protect the health of all Americans. Healthcare providers, public health professionals, health policy makers, and health administrators are all responsible for improving health literacy.

86 Who Is Responsible for Improving Health Literacy? We are!

Resources

AHRQ ReportLiteracy and Health Outcomes (2004): Healthy People 2010 (2000): Healthy People 2010 Health Literacy Action Plan Communicating Health: Priorities and Strategies for Progress (2003): objective2.htm objective2.htm IOM ReportHealth Literacy: A Prescription To End Confusion (2004): 88

Resources NIH Improving Health Literacy Web page: htm htm NIH/AHRQ program announcementsUnderstanding and Promoting Health Literacy: Prevention: A Blueprint for Action (2004):

Resources AHRQ Health Literacy and Cultural and Linguistic Competency Web page: NLM BibliographyUnderstanding Health Literacy and Its Barriers (2004): CDCScientific and Technical Information: Simply Put: CDCynergy (CD-ROM): NCIMaking Health Communication Programs Work (the Pink Book): 90

Resources Dynamic search of health literacy articles in PubMed: HHS university plain language course: Plain language Web site: A Family Physicians Practical Guide to Culturally Competent Care: National Standards for Culturally and Linguistically Appropriate Services in Health Care: