Health Literacy as a Factor in the Adoption and Use of Personal Health Records Cynthia Baur, Ph.D. Office of Disease Prevention and Health Promotion U.S. Department of Health and Human Services September 18, 2006

Health Literacy at HHS: Examples HHS Health Literacy Workgroup – Most agencies also have their own workgroups Surgeon General’s Workshop on Improving Health Literacy NIH/AHRQ/CDC Health Literacy Research Program Healthy People 2010 objectives Health Literacy Action Plan

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. Key concepts: – Obtain-- Understand – Process-- Decide

What is the Scope of Health Literacy? 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

Why is Health Literacy Important? Health literacy is important because it affects people’s 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

Health Literacy in the Adult Population Measured by the 2003 National Assessment of Adult Literacy (NAAL) Nationally representative sample of more than 19,000 adults Health literacy component within the general literacy study Assessed ability to use and understand prose, document and quantitative health information

Descriptions of Literacy and Health Literacy Levels 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 in English or Spanish

Example of Health Literacy Task and Results Standard immunization schedule for children – 58% of adults answered correctly a question about the number of vaccinations a 7 year old should receive – Range of correct answers 5% of adults with below basic skills 22% of adults with basic skills 78% of adults with intermediate skills 100% of adults with proficient skills

Percentage of Adults in Each Literacy Level: 2003

Who is Most Likely to Have the Lowest Health Literacy Skills? Racial and ethnic minorities, except Asian/Pacific Islanders Persons who spoke languages other than English before starting school Persons 65 and older Persons who did not complete high school Persons living below the poverty level Persons who do not use the Internet for health information

Below Basic Health Literacy and Health Information Choices 30 million adults in below basic health literacy category – 37% or 11 million no information from newspapers – 41% or 12 million no information from magazines – 41% or 12 million no information from books or brochures – 80% or 24 million no information from the Internet

What is the Relevance of these Data for PHRs? Adults with limited health literacy skills – are not accustomed to using the Internet as a health resource – prefer mass media or interpersonal sources of health information – will be unable to handle many of the multiple and complex tasks in PHRs

Examples of PHR Tasks Navigating Web sites and other applications Seeking out information Entering data Comparing two or more pieces of information Reading charts and graphs Writing messages Analyzing reports Reading textual information

Relevant Findings from ODPHP’s Consumer e-Health Report Intended users’ diverse perspectives, capacities, circumstances and experiences must drive the policy, design, implementation and marketing processes – Extensive consumer research is essential Access, availability, appropriateness, acceptability and applicability of existing tools are uneven – Gap between research-based and commercially-oriented tools

ODPHP Findings (cont.) Evaluation and dissemination strategies must be connected to the design process Existing community infrastructure exists to help connect policymaking, design and dissemination and bring tools in line with intended users National leadership and vision can help ensure agreement on basic principles that include and extend beyond privacy

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