Town Hall Meeting on Improving Health Literacy

March 10, 2008
Sacramento, California

Meeting Summary

Welcome

Cynthia Baur, Director, Division of Health Communication and Marketing, National Center for Health Marketing, Centers for Disease Control and Prevention, welcomed participants to the Town Hall Meeting on Improving Health Literacy. This is the second of four Town Hall meetings created for participants to learn about significant activity in health literacy among communities and regions, share promising practices, and provide input for a national action plan to improve health literacy. This meeting was cosponsored by the U.S. Department of Health and Human Services' Office of Disease Prevention and Health Promotion (ODPHP), the California Department of Managed Health Care, and the Health Research for Action in the School of Public Health, University of California (UC), Berkeley.

Highlights of Research Findings on Health Literacy

Linda Neuhauser, Clinical Professor of Community Health and Human Development, School of Public Health, UC Berkeley, opened the Town Hall with a summary of the 2006 Surgeon General's Workshop on Improving Health Literacy. She had been one of the presenters at the 2006 Workshop. Leading researchers from across the country presented the state-of-the-science on health literacy issues from a variety of perspectives, including health services research, education, cognitive science, communication, linguistics, aging and health disparities. The purpose of the Workshop was to establish an evidence base to inform future actions in health literacy improvement.

The Workshop led to several conclusions:

• Enough data exist to substantiate health literacy as a major public health issue in the United States.
• A considerable evidence base supports a relationship or an association between health literacy and a variety of health outcomes.
• Limited health literacy is not an individual deficit but a systemic problem that should be addressed by ensuring that healthcare and health information systems are aligned with the needs of the public and with healthcare providers.
• Costs associated with interventions to improve health literacy should be evaluated against the estimated and often hidden costs to the system associated with ignoring limited health literacy.

Proceedings from the Workshop are posted on the Office of the Surgeon General's Web site (www.surgeongeneral.gov).

Panel 1: Leading for Change: California Initiatives to Advance Health Literacy

Representatives from three California state offices described health literacy initiatives underway at the agency level to reach more effectively their constituents with limited health literacy skills. Each panelist described the challenges and barriers among the populations they serve and solutions implemented to overcome them.

California Department of Managed Health Care

Lucinda Ehnes, Director, California Department of Managed Health Care (DMHC), described the gap between consumers' skills and the health sector expectations and demands. The trend, Ms. Ehnes noted, toward consumer-directed healthcare puts at risk people who lack enough consumer skills to navigate the healthcare system and get the information and care they need. For example, Ms. Ehnes reported the average reading level for Californians is seventh grade. In contrast, health plan and DMHC consumer materials are written at college or post-graduate levels, often by attorneys. Moreover, law requires that some health plan material content be verbatim from the statute.

The challenge for the DMHC has been in finding a balance between medical, legal, and healthcare industry terms and language that average consumers can understand. The DMHC is developing model documents for the insurance market to use that meet statutory disclosure requirements, yet are written at a ninth-grade reading level. They have revised DMHC consumer letters, complaint forms, and applications, as well as the consumer section of the DMHC Web site, applying best practices in health literacy. The materials are undergoing testing and will be adapted based on results. A new challenge is to revise the "required disclosures" language in the Knox-Keene Health Care Service Plan Act of 1975, the set of laws passed by the State Legislature to regulate Health Maintenance Organizations (HMOs) within the State, to meet literacy guidelines.

California Department of Health Care Services

The California Department of Health Care Services (DHCS) finances and administers a number of individual health delivery systems, including California Medical Assistance Program (Medi-Cal), a managed care program. Vanessa Baird, Chief, Medi-Cal Managed Care Division, DHCS, described an initiative underway to help constituents make informed choices about enrollment and more effectively navigate the healthcare system. DHCS collected research to determine the languages spoken by program beneficiaries. The Department intends to translate materials into these languages and revise materials to the sixth-grade reading level. DHCS ensures that beneficiaries are informed of their healthcare options through in-person presentations, information materials, and a call center that includes translated materials and oral interpreter services.

In addition, Medi-Cal recently partnered with UC Berkeley, School of Public Health, Health Research for Action, to increase voluntary enrollment of seniors and persons with disabilities by raising awareness about Medi-Cal. Health Research for Action conducted a literature review, key informant interviews, and consumer interviews to develop content for a guidebook that explains enrollment options and benefits. The content is written at the sixth-grade reading level, is easy to understand for those who are limited English proficient (LEP), and includes accurate cultural adaptations. Pilot testing, via phone surveys among Riverside, Sacramento, and Alameda populations, revealed that beneficiaries display an increased understanding of enrollment options and an improved ability to make choices. DHCS hopes the guide will increase enrollment in Medi-Cal and provide better access and coordination of care.

California Office of the Patient Advocate

The California Office of the Patient Advocate, Deputy Director Ed Mendoza explained, informs and educates consumers about their rights and responsibilities as HMO enrollees and teaches them to use the services effectively. Hoping to use current HMO materials to reach a diverse set of consumers, the office conducted an independent assessment in 2002 and found that almost half (49 percent) of HMO reading materials are at graduate school reading level; another 45 percent are at the college level.

Therefore, the Office of the Patient Advocate partnered with Health Research for Action to create two HMO guides, one for the general population and one for seniors, which could be used as resources for enrollment and healthcare decisions. The guides offer simple, personal, action-oriented messages for a diverse set of consumers with complex needs. A 2004 evaluation of the guides revealed that 73 percent of those who took them home had read or looked at some part of them. In addition, 19 percent said that information from the guides changed their thinking or caused them to do something different. The Office of the Patient Advocate continues to distribute the guides, participating in over 1,000 local events and making face-to-face contact with nearly 100,000 consumers last year.

At the end of the presentations, meeting participants posed several questions to the panelists. The discussion centered on several key issues.

• Participants asked what the panelists do to help clients better understand legal materials such as informed consent documents. Ms. Ehnes acknowledged the challenge, noting that a first step already in the works is to revise the Knox–Keene Act "required disclosures" language to meet health literacy standards. In addition, much of the work falls upon health plans and the DMHC to develop other resources, such as educational materials and telephone help lines, to address consumer questions.
• A participant asked whether any case law or legal precedence requires that informed consent documents be understandable to all populations. The panelists were not aware of any such legal decisions. Moreover, obtaining the consent of Federal agencies that have oversight responsibility for required disclosures is essential.
• One participant, noting that some consumers do not trust the Government as a source for health information, asked the panelists how they overcome that bias. Research shows, Mr. Mendoza asserted, that many people tend to distrust all information and want to know the source. Much of the research about the Internet shows, he continued, that many people choose dot-gov sites over dot-com sites. He urged participants to conduct research to determine within their constituencies what sources are trusted and where targeted groups get their health information. He acknowledged that the materials in his organization are developed so they do not look like they come from the Government.

Panel 2: Linking Research, Community, and Media for Action

Panel members provided a diversity of perspectives on the initiatives underway to improve health literacy within the communities of California. These promising practices exemplify the improvements possible in the interaction between individuals and the healthcare system.

UC San Francisco, Fresno Center for Medical Education and Research

According to Yolanda Partida, National Program Director, Hablamos Juntos, language diversity in California is greater than in the whole of Europe. Moreover, roughly 20 percent of Californians are considered LEP. To bridge the language gap, Hablamos Juntos created two tools to improve patient-provider interactions for persons who are LEP.

One such tool, Universal Symbols for Health Care, uses universally recognized graphic symbols, based on the Mexico subway system, to help LEP populations navigate health facilities. The Hablamos Juntos Web site offers a downloadable workbook that suggests ways to implement the symbols in the healthcare setting. The second tool, More Than Words Tool Kit Series, helps healthcare organizations become more proficient in ensuring quality health materials are produced for LEP patient populations. Drawing on lessons learned from studying translation errors, Hablamos Juntos developed and tested the Translation Quality Assessment tool to assess the quality of translated text.

San Francisco General Hospital, Center for Vulnerable Populations

The IDEALL (Improving Diabetes Efforts Across Language and Literacy) Project leverages telephonic technology and group medical visits to address the literacy and language needs of high-risk diabetes patients and to enhance self management. Dr. Dean Schillinger, San Francisco General Hospital, explained the project, noting that a three-arm randomized control trial was completed with patients who received weekly phone calls via an automated telephone diabetes management system, monthly group medical visits, or usual care. The trial demonstrated improvements in communication and self-efficacy with regard to health behaviors and functional status at a modest cost, especially among low-literate and LEP populations.

This innovative approach transforms the healthcare delivery system from reactive to proactive through the inclusion of surveillance, monitoring, tailored health education, and triggered call backs. An evaluation showed that IDEALL generated new knowledge about how to transform clinical and public health practice to benefit populations with the greatest need—those with limited health literacy. Four new projects using a similar methodology and technology are underway. Future efforts will be made to create more nimble software that can be adapted to meet nonprofit contexts and to link it to medication intensification to improve health outcomes.

Radio Bilingüe

Radio Bilingüe is the first and only Latino radio network in the United States. Through 24-hour public radio satellite, Radio Bilingüe reaches out to listeners in nearly 80 communities across the United States, Puerto Rico, and parts of Mexico. Zaidee Stavely, Associate Producer, described La Cultura Cura (translated "Culture Heals"), a radio campaign that promotes health and wellness for Spanish, Mixteco, and Triqui-speaking farm workers, their families, and their communities. The health needs of farm workers are many. Nearly 70 percent of farm workers in California lack any form of health insurance, and almost one-third of male farm workers have never been to a doctor or clinic in their lifetimes. Access to healthcare for this population is impeded by language and cultural barriers, and, in many cases, an inability to understand how to navigate the medical system.

The components of La Cultura Cura include talk shows, feature news reports, educational messages, and mini radio dramas, all designed to create health behavior changes, community action, and public policy changes at the local, state, and national levels. Although many challenges confront the station, including limited resources and competition from other radio stations and other commercial messages, an independent survey of the campaign revealed promising findings. Two out of three listeners have discussed Radio Bilingüe health programming with others. Moreover, the news reports have prompted new pesticide drift regulations, increased health official presence in the San Joaquin Air Pollution Control District, and prompted regulations that address heat-related illness and death in the California fields.

Asian Health Services, Oakland, California

Dr. Winston F. Wong, Medical Director, Community Benefit, Kaiser Permanente, reinforced the notion that health literacy is more than words on a page. He described how Asian Health Services, a nonprofit clinic in Oakland, California that provides healthcare and education to Asian immigrant communities, uses cultural images, colors, and design elements to convey cultural relevance and cue patients to important messages. The cultural cues begin on the outside of the building with the use of Asian-inspired architecture at the entrance. Inside, patients see a variety of cues that convey the cultural competence of the healthcare organization, including linguistic inclusion and cultural integration; a welcome sign, color-coded patient literature, and medication instructions written in multiple Asian languages; pictograms, images, and visual cues reinforcing directions; photos of staff emphasizing the interpersonal atmosphere; and patient questions from clinicians written in several languages, allowing for increased patient-provider interactions.

Despite the numerous efforts of Asian Health Services, the clinic still faces challenges. Across the street lies a pharmacy that promotes its own, perhaps conflicting, health messages and draws consumers to its products. Asian Health Services continues to consider ways to re-engineer service delivery and make changes to improve the health literacy of its patients and providers.

Histories of the Future for Health Literacy Improvement

During the afternoon session, participants in the Town Hall meeting were randomly assigned to one of four small groups and asked to develop goals for achieving a more health-literate society. Imagining that it is the year 2025, participants described the characteristics of a health-literate society. Based on those characteristics, each group selected several goals, strategies, and action steps to prioritize. Discussions ranged from broad overarching themes to specific action steps. The suggestions below reflect the comments of meeting participants and do not necessarily reflect the position of the U.S. Department of Health and Human Services or any of its agencies.

Yellow Group (facilitator, Joanne Locke)

Goal 1: Integrated technology system

• Create a technology system that includes different language styles, stores prevention health information, and is broader than the healthcare provider interaction.
• Create a mass customization system that tracks individual health and sends tailored health alerts. Identify portals for people to identify preferences and backgrounds. Employ user-centered design to provide customization, such as electronic health records and preferences.
• Conduct consumer research, such as a needs assessment, to identify needs, preferences, skills, culture, and language. Use the results to create an individualized system that reflects cultural beliefs.
• Create a system that is patient- or consumer-driven and is based on consumer habits and motivations. Make the patient the holder of the electronic health record or profile. Include meaningful patient incentives.
• Address privacy issues by having the consumer hold data or create an open source system that ensures no commercial use of data without an opt-in option. Identify strategies to help people trust the system.
• Create a customized, centralized system that is a warehouse or Web model to track health information, such as immunizations.

Goal 2: Patient (consumer)-centered healthcare system that is respectful of diversity and culture and responsive to family and care-givers

• Develop a consumer-centered system that makes consumers the focus of healthcare, inspires individuals to be healthy, and creates incentives to reinforce individual responsibility for health.
• Implement cradle-to-grave education, from preschool to lifelong living. Put meaningful health classes back into the education system. Change curricula to include more nutrition and preventive health. Include Federal and State Departments of Education as stakeholders.
• Implement policy that is conducive to behavior change. Create a polity mandate that ensures privacy and that provides funding to support access to care.
• Focus communication messages to convey behavior changes. Ensure that the popular media communicate positive health and prevention messages.
• Convey the notion that the right balance of food and activity can be as useful as medicine. Use grocery stores as a point of education. Demystify food purchases and activity level. Ensure that healthy foods are available, accessible, and affordable for everyone.
• Train professionals to communicate successfully by ensuring health communication and educational communication work together. Include communication training in medical schools.
• Consider special populations. Implement immigration reform to eliminate the fear barrier and encourage strength and confidence among immigrant populations. Identify funding to incorporate health prevention experts into the daily lives of the aging population, such as at senior centers, pharmacies, and grocery stores.
• Conduct continuous healthcare system monitoring to check performance.

Green Group (facilitator, Sandra Williams Hilfiker)

Goal 1: Training for providers

• Create a healthcare literacy national patient safety goal through a joint commission.
• Create accreditation standards. Require health professional schools (e.g., nursing, medical, dental, pharmacy) to provide a health literacy component in order to become accredited.
• Compile and continue research on the link between health literacy and health outcomes. Present the case to relevant organizations.
• Create a strength-based approach, where building on patient and provider strengths is emphasized, that combines public health and health communication with healthcare provider training. Include diversity training.
• Make health literacy and diversity training a part of education from undergraduate work through residency. Make communication coursework a requirement before proceeding to next education level. Work with accrediting organizations to standardize an education curriculum.
• Create continuing education and licensure requirements. Make health literacy a requirement for relicensure. Make health literacy a required component of all Continuing Medical Education training, Continuing Health Education Credits, Continuing Education Units, and Continuing Nursing Education.
• Partner with training organizations and licensing boards.

Goal 2: Empowering consumers

• Empower consumers to expect quality healthcare and information. Provide assertiveness training so they learn to honor and trust themselves. Question-asking becomes the norm.
• Provide meaningful access to information. Standardize health information on the Web and apply user-centered design principles. Offer choices for how information is presented. Ensure that community centers gain access to information.
• Ensure computer access in every home. Ensure technology is wireless and that all individuals have free access.
• Implement new technologies, such as Google's electronic medical record, that allow consumers access to personal information.
• Use voice-command technology and increase the use of the telephone. Work with Microsoft to develop technological solutions.
• Change the perception of health literacy so that community groups demand the integration of plain language into health education and healthcare systems.
• Flatten hierarchy in the healthcare system–patients and providers work more collaboratively.

Goal 3: K-12 health education

• Build public awareness for better K-12 education. Create compelling messages for the importance of health education.
• Train educators to teach age-appropriate health education annually. Set aside funding to train teachers in effective health education. Create accreditation standards for teachers. Create an environment where teachers are involved and support health education through model behaviors. Create incentives and payments for teachers. Ensure diversity training for teachers.
• Create accreditation standards for schools. Make school lunches and vending machines healthy. Include vegetable gardens in schools. Create a safe environment for exercise. Provide laptops that include voice recognition for every child. Use video games for teaching.
• Revise and update curricula for all ages. Standardize curricula nationally. Include consistent health messages that are prevention focused and include self care and how the body works (e.g., cause and effect). Develop curricula from evidence-based practices.
• Require students to take a national test prior to graduation that involves searching for health information on the Internet
• Involve multiple communities, such as teachers, parents, universities, and medical professionals.
• Increase parental involvement and support. Have employers create incentives to encourage parents to get involved with children's curriculum. Create in-services for parents related to K-12 curricula that reinforce health messages.
• Create community coalitions.
• Work with policy makers and coalitions to develop legislation addressing health education and health literacy in schools.
• Create a national health day.
• Get health insurance providers involved in incentives and funding.
• Identify stakeholders, such as the Department of Education.
• Influence legislators, foundations such as the Bill Gates Foundation, professional associations, and sports heroes to support health literacy initiatives.
• Create demonstration programs that have a strength-based approach where the programs build on the strength of the schools and students.

Red Group (facilitator, Rob Logan)

Goal 1: Optimal health for entire population/elimination of health disparities. Overarching strategy: Establish a common language and understanding between providers and consumers

• Eliminate jargon from professional training.
• Base messages on population needs. Use a variety of communication modalities, including visual, written, etc., that reflect a consumer-centered approach.
• Increase multicultural training.
• Increase K-12 health-related education through increased investments in education.
• Increase emphasis on provider-patient communication in provider education.
• Increase incentives for better communication—determine what is important.
• Increase the diversity of the workforce to attain a culturally and linguistically competent workforce.
• Create leadership that promotes diversity. Enforce tenants of health literacy improvement at all levels of implementation.
• Promote a political climate that drives positive health literacy policy.
• Identify health literacy quality outcomes and create health literacy guidelines that are user-friendly and understood by the entire population.
• Conduct programmatic evaluation at all levels.

Additional strategies

• Conduct more research to define "optimal" in the context of health.
• Support programs that empower people to be more involved and active in health (self-efficacy) and that teach skills, such as computer use, to assist people in acquiring credible health information.
• Create a community-based infrastructure that promotes respect for a range of alternatives (group education, etc.) and alternative models of healthcare that promote "optimal health" by way of health literacy interventions.
• Increase access to all services and ensure cognitive abilities are not a barrier to obtaining services.
• Promote universal access to healthcare.
• Reimburse health education and health literacy interventions.
• Promote healthy environments and communities (e.g., safe walking areas, healthful foods available in all neighborhoods) through health literacy interventions.
• Promote a highly-skilled, diverse health workforce that is highly trained and that uses the best resources that science can offer.

Blue Group (facilitator, Linda Neuhauser)

Goal 1: Robust healthcare delivery system that includes standardized health communication, healthcare teams, evaluation of messages, and trusted sources of health information

• Identify strong, clear leadership that responds to the consumer push for health literacy.
• Create laws decreeing that legal documents must be understandable to consumers.
• Engage the younger generation. Emphasize health education at a young age.
• Motivate businesses to develop education materials, thereby decreasing healthcare costs, and consider the benefits of single-payer system.
• Increase understanding that a healthcare crisis exists. The number of uninsured and those who can not access healthcare is high.
• Identify funding opportunities from private sources.
• Conduct research on how to improve communication and the areas most affected by limited health literacy. Move beyond the "more communication is better" approach.
• Engage the pharmaceutical industry to promote health literacy.
• Convene a citizen's council to determine appropriate methods of communication for each cultural group.
• Lawsuits against poorly translated materials provide evidence for the return on investment of health literacy initiatives
• Clearly define and enforce Joint Commission on the Accreditation of Healthcare Organizations standards.
• Place caps on the prices of pharmaceuticals, as is done in other countries.
• Place caps on lawsuits that raise the cost of healthcare, thereby putting medicine back in the hands of providers rather than attorneys.

Goal 2: Get society to understand and demand health promoting policies through stronger funding; involvement from media, educators, and providers; trusted sources of health information; crafting and delivering messages; and healthcare education Strategies for reaching Goal 2 were not discussed due to time constraints.

Conclusion

Dr. Baur stressed the value in the sharing of significant activities underway in the area of health literacy improvement among California State, local, and community leaders. Each person and organization is capable of taking just one small step toward a more health literate society. Moreover, the meeting provided rich material for the development of a national action plan to improve health literacy, which will be undertaken later this year.

In closing, Dr. Baur reinforced the notion highlighted by one of the breakout groups, that if we begin today to educate our children and focus on improving health literacy, we have a generational window to achieve measurable progress. The Town Hall is a first step toward the goal of a health literate society. Dr. Baur encouraged participants to share with colleagues, managers, policymakers, and friends the discussions heard throughout the day and to engage people from diverse groups to address this important public health issue.

Dr. Baur also encouraged participants to visit the Health Communication Activities section of ODPHP's Web site (www.health.gov/communication) to obtain updates related to this series of Town Hall meetings and additional resources on health literacy.