Town Hall Meeting on Improving Health Literacy
A Vision for a Health-Literate Missouri

May 16, 2008
St. Louis, Missouri

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 third 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 and the Missouri Foundation for Health (MFH).

James R. Kimmey, President and Chief Executive Officer, MFH, also welcomed the participants and expressed his appreciation for being able to co-sponsor the Town Hall meeting. Established in 2000, the MFH Board singled out health literacy as a priority area to develop statewide interest and structure in health literacy issues. Mr. Kimmey expressed confidence that the activities of the day would generate ideas to convert into programs to advance priorities in health literacy.

Highlights of Research Findings on Health Literacy

Rima E. Rudd, Senior Lecturer on Society, Human Development and Health, Harvard School of Public Health, presented an overview and key highlights of the 2006 Surgeon General's Workshop on Improving Health Literacy, where she was a presenter. The purpose of the workshop was to establish an evidence base to inform future actions in health literacy improvement. During the 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 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.

Dr. Rudd added that much of the research supporting these findings comes from the clinical setting. She urged participants to consider research gaps and to think beyond the medical setting to public health, environmental health, housing, food production, policy, and other settings, as they take action to improve health literacy.

Proceedings from the workshop are posted on the Office of the Surgeon General's Web site (http://www.surgeongeneral.gov/topics/healthliteracy/toc.htm).

Panel 1: Health Literacy Across Missouri – Building a Statewide Health Literacy Enhancement Center

The health literacy initiatives described by the three panelists are part of the Missouri Health Literacy Enhancement (MHLE) program, an initiative of the MFH. As an introduction, Arthur J. Culbert, Senior Advisor to the MFH, described the work underway through MHLE, a program that targets efforts to strengthen individual and professional health literacy, and enhance consumer and healthcare provider communication across Missouri. In the 8 months since its inception, MHLE has begun a health literacy awareness campaign across Missouri and is creating a statewide health literacy surveillance system that defines health literacy and identifies measures for success. The panelists spoke about the work they do with the program.

Assessing the Need and Developing an Inventory of Resources

A primary activity of the MHLE effort is to identify health literacy needs and find and share health literacy tools among professionals working to improve health literacy in Missouri. Matthew W. Kreuter, Director, Health Communication Research Laboratory, Saint Louis University School of Public Health, described the work to date. Initially, a needs assessment that included 54 healthcare and public health professionals and educators revealed several key challenges. Patients do not understand disease processes and often find health forms difficult to complete. Moreover, providers lack the patient-friendly terminology, skills, and time to help patients understand, and the resources for non-English speakers are inadequate.

Noticing a gap in professionals' access to health literacy tools and resources already available, the Saint Louis University School of Public Health compiled an inventory of health literacy resources for health professionals. The database currently holds more than 10,000 resources, including tools, educational materials, scientific literature, surveys, and curricula. The easy-to-use system walks users through a series of steps designed to assist them in identifying resources. Each resource listed includes a description, user reviews, recommended resources, and evaluation and scoring information. Still in the development phases, the school hopes to obtain feedback on the prototype in the coming months.

Media in Action: Informing Smart Health Decisions

Glen T. Cameron, Health Communication Research Center, Missouri School of Journalism, spoke of the opportunities in informing the health decisions of Missourians through the media. The school recently completed two surveys with healthcare journalists and is finishing extensive open-ended interviews with 100 health literacy leaders. Preliminary findings show that 80 percent of journalists surveyed had no specialized training in healthcare journalism. That number jumps to 89 percent for those with fewer than 5 years of experience. The results demonstrate a significant gap in training and understanding in healthcare journalism. Nevertheless, these same journalists are strongly motivated to help people understand and make use of health information.

Many of the challenges for individuals in this profession lie in contemporary news values. Healthcare stories are often portrayed in a conflict/resolution style that can take away from the intended health messages. Journalists struggle to find balance between too much and too little information. Moreover, there are clear distinctions between how newspaper, magazine, and broadcast journalists view their role. The different media channels have different motivations toward healthcare information delivery and health literacy. The school is working on solutions through activities with MHLE to produce better healthcare journalism. Such journalistic changes will, in turn, make consumers more aware, more amenable to MHLE interventions and resources, and better equipped to make health decisions.

Identifying Hot Spots of Low Health Literacy in Missouri

Nicole Lurie, Paul O'Neill Alcoa Professor, Director, RAND Center for Population Health and Health Disparities, described efforts underway to develop a predictive model to map health literacy in Missouri and identify communities with people who have limited health literacy skills. The model incorporates common census variables, such as age, gender, race/ethnicity, education, income, marital status, and others, to identify areas in Missouri where poor quality care and low health literacy coexist.

Identification of the hot spots can help to clarify contributing factors and cost-effective interventions. Mapping will identify priority areas for intervention and bring together partners to develop interventions. Moreover, this shift in focus toward communities, rather than individuals, can have added benefits, such as helping communities take responsibility and leading to efficient resource use and a positive return on investment. Mapping data will be shared with agencies, health plans, and communities to be used when developing and testing interventions for pharmacy settings, provider offices, automated voice response systems, and others.

Discussion

At the end of the presentations, participants posed several questions to the panelists. The following issues were raised:

• Participants asked about efforts underway to ensure that schools of journalism have health journalists on staff and health literacy training in their curricula. Dr. Cameron noted that many schools of journalism are considering adding a major in science journalism with a minor in a specific scientific area, like health. Such a change will ensure more adequate resources within the schools and better training for journalists. He added that many journalists have not had exposure to health literacy and that much of the learning is done in the field or through associations, workshops, and conferences. Dr. Rob Logan, National Library of Medicine, added that the skills necessary to write well are often grounded in health literacy principals.
• Noting the opportunities to increase health literacy through serialized soap opera entertainment, a participant asked about progress in that area. Dr. Cameron explained that efforts are underway to target telenovelas for the Hispanic community and to bring health literacy and health information into the entertainment industry.
• One participant asked about efforts to bolster communication skills during patient-provider interactions. Dr. Kreuter stressed the need to educate healthcare students, providers, and staff. Work on this issue, through the MHLE, will begin in a couple of months to identify best practices and adapt them for providers.
• When asked about resources for multilingual speakers and limited English proficient populations, Dr. Kreuter explained that many resources for Hispanic populations have been added to the MHLE database. There are tremendous challenges in identifying and cataloging materials for other populations, though efforts are underway. Dr. Logan said that MedlinePlus recently added health services in 44 languages.
• When asked how best to reach diverse populations, the underlying assumption, Dr. Kreuter noted, is that work must include intermediary groups—those who have access to populations with limited health literacy. In terms of developing materials for diverse populations, the MHLE is in the early stages of identifying an appropriate model for meeting specific communities' needs, either through the training of organizations to develop their own resources or in the creation of a centralized system that involves working closely with partners.
• In response to Dr. Lurie's presentation, a participant commented that if poverty is central to the issue of health literacy, shouldn't the focus be on children, those most affected by poverty? Dr. Lurie cautioned that findings are not conclusive and the overlap between poverty and health literacy is not yet known, though a total overlap is not likely. Dr. Rudd interjected that ultimately, literacy is an issue of social justice and that to improve health literacy, we must look at social inequities.
• Noting that the three panelists are part of the MHLE efforts, Dr. Baur asked them to speak about the benefits of being part of a network to advance health literacy. The panelists unanimously agreed that the value of working together is high and that the accomplishments thus far would not have occurred without the network. The ideas are more robust and enriching, and the network provides tremendous cross-fertilization.

Panel 2: Initiatives in the Midwest to Advance Health Literacy

Panel members provided a range of perspectives on the initiatives underway to improve health literacy within communities in the Midwest. These promising practices exemplify the improvements possible in helping patients and consumers to more effectively navigate and negotiate the healthcare system.

Immigrant Health Literacy: Reaching Across Language and Culture

Daryl Gordon, Students Helping in Naturalization of Elders (Project SHINE), Assistant Professor, Adelphi University, described the Health Literacy Initiative, a program that engages college students in health literacy service for older immigrants and refugees. An initial needs assessment of immigrants, that included input from immigration, English as a second language (ESL), and senior service providers, revealed that needs of immigrant older adults are great. Many have difficulty understanding print material, such as instructions, prescription labels, and forms; communicating traditional practices to clinicians; and making healthcare appointments. To address these challenges, the health profession students (those in nursing, physical therapy, occupational therapy, therapeutic recreation, and medical interpreting) participated in health fairs, health education workshops, health screenings, and community needs assessments to provide ESL support.

The Initiative also engaged ESL teachers and adult learners to develop an ESL health literacy curriculum based on four quadrants of communicative competence, including language, sociolinguistic, strategic, and discourse competence. The curriculum is designed for immigrant older adults to use in ESL classes, tutoring sessions, or workshops and includes five topics—the doctor's office, the hospital, illness management, healthy aging, and medications.

Integrated Health Network—Regional Health Literacy Programs

The Integrated Health Network (IHN) is a group of 8 providers who serve over 200,000 uninsured and underinsured residents in St. Louis city and county. Brooke Sehy, Chief Executive Officer, and Lisa West, Health Coach, IHN, described the Health Education and Literacy Program, an IHN initiative that uses lay health coaches to reach uninsured and underinsured residents to empower them to take control of their health, communicate with providers, and become more confident in navigating the health delivery system.

Despite barriers to healthcare among this population, including transportation access, financial obstacles, and lack of trust in the healthcare system, results of a qualitative study to determine the effectiveness of health coaches were positive. Preliminary findings revealed a significant increase in the percentage of patients who had a primary care provider after working with a health coach (from 57 percent to 81 percent). Moreover, after working with a health coach, 27 percent of chronic disease patients (up from 1 percent) are now able to discuss their self management plan.

Twenty Years of Experience: The Adult Learner and Health Literacy

Archie M. Willard, founder, New Readers of Iowa, is an adult learner. He learned to read at the age of 54, after learning that he is dyslexic. In 1990, he and several other adult learners founded New Readers of Iowa, a group working to help people with low literacy skills navigate such arenas as the voting system and the healthcare system. Early in 2000, New Readers of Iowa hosted a health literacy conference that brought together adult learners and healthcare professionals to discuss the problems and solutions surrounding health literacy. The conference led to a partnership with the Iowa Health System.

Under partnership with the System, the New Readers of Iowa work to make healthcare more understandable to adult learners and others. Much of their work involves making small changes that have a big impact on improving access to and understanding of the healthcare system. For example, they review health forms, serve on committees, and participate in needs assessments, to offer the adult learner's point of view about health literacy. During his presentation, Mr. Willard reinforced the notion that each small step can have a large impact on improving health literacy. Mr. Willard urged participants to partner with adult learners and to listen to them to make a difference in health literacy.

Discussion

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

• Asked how communities can rally together to improve health literacy, panelists emphasized the importance of collaborating and partnering with organizations and other intermediaries to achieve shared goals. Mr. Willard again suggested engaging the population you are trying to reach, such as adult learners, in the entire process, including planning committees, program implementation, and evaluations.
• With regard to how best to overcome cultural barriers, panelists recommended increased emphasis on initiatives that bring together healthcare providers, patients, and consumers to develop strategies that increase cultural competence.
• Missouri is not among the 11 states offering reimbursement to medical providers for interpreters. Panelists and others suggested providing policymakers with evaluations of health outcomes that demonstrate the monetary return on investment of interpreter services.
• As with the previous panel discussion, participants commented on the lack of bilingual materials and the gap in provider knowledge of materials available and understanding of how to use them effectively. Panelists and participants agreed that more work needs to be done in this area to find cost-effective solutions.

Histories of the Future for Health Literacy Improvement

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 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.

Characteristics of a Health-Literate Society

Within each breakout group, participants identified those characteristics that best describe a health-literate society. The following list is a compilation of all group sessions:

• Universal, culturally sensitive healthcare. Healthcare is accessible and affordable for all people.
• Reengineered healthcare system. The system is consumer driven. There is a movement away from provider incentives that drive the disease model and toward a model of consumer health and prevention. Provider reimbursements support preventive practices that benefit the consumer. Health care practices are grounded in evidence-based research. Health care communications are culturally and linguistically appropriate.
• Consumer empowerment. Knowledgeable consumers are empowered to manage their health and advocate for their health. Patients keep their own records through digital personal health records. There is equitable distribution and access to resources (i.e., education, jobs, and housing).
• Enhanced technologies. There is universal access to the Internet. Tailored technologies provide plain language health information and community forums, and serve as access points so that people can learn to self-advocate. Consumers carry their medical information with them through enhanced technology, such as a smart card. Expert technological systems organize and display key dates for the consumer, such as dates of immunizations and healthcare appointments.
• Enhanced healthcare system-patient interactions. Healthcare systems and consumers are actively engaged together in encouraging wellness through more effective communication from healthcare professionals and increased empowerment from consumers. There are effective interactions between and among individuals, providers, and communities.
• Enhanced education. All people are more literate. Health literacy education is a component of all educational settings.
• Enhanced provider training and evaluations. Providers are focused on patient outcomes and are evaluated based on the patient's health and disposition. They receive incentives to communicate effectively and training to speak clearly and effectively and to be sensitive to cultural needs of consumers.
• Environmental changes. There are dramatic changes to environments (social and physical places) that make them more conducive to healthy living.
• Policies support health literacy. Each state has a health literacy advocate. Policies, such as equal funding for all schools, are child- and family-friendly.

Prioritized Goals

Participants chose several goals on which to focus and identified strategies for achieving them. Below are the goals identified and their accompanying strategies

Orange Group (Timothy O'Dea, facilitator)

Goal: More affordable and accessible healthcare.

• Engage media to tell a story of what is broken and what works well. Use documentaries and various forms of entertainment media to provide healthcare information.
• Initiate a Federal contest that requires entrants to create state plans for affordable and accessible health care. Engage the public to vote via technologies like television and mobile phones. The winning plan will receive funding for 5 years.
• Initiate a policy titled "No Lawmaker Left Behind" wherein no policymaker can have better health coverage than his or her constituents.
• Use technology to do household-level polling.
• Create a tiered approach to paying for healthcare, where those who wish to pay more for increased healthcare services can do so.
• Include more people who are affected by these changes in discussions of what needs to be changed and how to manage it effectively.
• Include culture and language in our understanding of access to healthcare

Red Group (Rob Logan, facilitator)

Goal: Highly literate society

• The public education system is equitable and maximizes individual potential.
• An emphasis is put on early childhood education and interventions.
• Health literacy is integrated into curriculum.
• Schools include grade level of health comprehension to 12th grade.
• Life-long learning is emphasized.

Goal: Collaborative partnerships, valued by society, among all parties in the health care system: consumers and providers

• Healthcare providers receive appropriate reimbursement for preventive healthcare practices.
• Providers are well trained in health literacy and health communications.
• All Americans are bilingual and culturally sensitive.
• Workplace policies support healthy lifestyles and choices.

Goal: Optimal access, well-designed, consistent, and consumer-friendly health care system services, information, and products

• Public policies promote health literacy values.
• Medication and product labeling are standardized and understandable.
• There is a supportive infrastructure, including technology, transportation, social health services, healthcare provider coverage, and personalized services.
• There is equitable access to health information and care.

Goal: Person-centered healthcare systems with significant improved outcomes for all and elimination of health disparities

• There is a shift from the diagnosis and treatment of disease to prevention as a result of better education, healthcare, culture, and communication.
• The economic model of healthcare is based on well-being rather than disease treatment.
• Consumers are proactive about their health.
• Healthcare providers are educated about health literacy.

Blue Group (Elyse Barbell Rudolph, facilitator)

Goal: The population is proactively engaged in health promotion and a healthy community.

• Evidence-based health programs are available for communities.
• Community infrastructures support healthy behaviors, such as sidewalks and trails.
• Programs and activities are available to all members, regardless of culture.
• Key stakeholders include social service agencies, the Federal Government, advocacy groups, community-based organizations, state departments (such as State Departments of Health), community members, and academic and corporate partners.

Goal: Health systems support consumers' health-promoting activities

• Federal policy ensures universal access to quality and equitable care and services.
• Providers' communication skills are enhanced. They work to integrate and coordinate care supported by technology and enhanced communications.
• Navigation and communication barriers are eliminated through technology and training.
• Key stakeholders include national, state and local governments, medical schools, the Joint Commission, corporations, technological experts, health insurers, healthcare systems, lobbyists, and donors and foundations.

Goal: The education system is a key driver of health literacy.

• New pre-kindergarten curriculum integrates a coordinated school health program.
• All health science curricula include interdisciplinary cultural competence and health literacy training and skills development.
• Community-based education allows communities to identify and articulate their needs in order to implement community solutions.
• Key stakeholders include education systems, library systems, the learning community, licensing boards, accreditation boards, the Federal Government, parent-teacher organizations, student associations, and unions.

Yellow Group (Joanne Locke, facilitator)

Goal: Change healthcare focus to management of optimal health through prevention and wellness.

• In the short-term, provide community-based organizations with tools and resources to enhance health literacy. Include evaluations to determine measures of success.
• Regulate media advertising to ensure that messages focus on prevention and wellness.
• Empower consumers to demand change through education.
• Identify funding for large media campaigns to promote health and wellness and change social norms.
• Demonstrate the economic profits of living well. Make healthy foods less expensive and easily accessible.
• Unify the value of health through general campaigns to ensure equal attention to all aspects of health.
• Ensure that health information technology and health communication are inextricably linked.
• Include the targeted populations in the planning of community programs.
• Enhance adult literacy programs that encourage parents to read with their kids. Provide resources for parents, such as giving books to new mothers in hospitals.
• Revise healthcare systems to provide reimbursements for prevention.
• Enhance advocacy skills for people communicating with policymakers and those supporting systems change. Use personal stories and create consistent messages.
• Educate legislators to see the monetary return on investment of health literacy at the local and state levels in order to pass legislation.
• Educate corporations to see the monetary return on investment of health literacy in order to provide support for employees.
• Ensure coordination of health literacy activities between health departments and education departments.

Goal: A diverse workforce is a priority.

• Educate the public about the merits of a diverse workforce, which includes people of different race, ethnicity, gender, age, and socioeconomic status.
• Increase diversity in the corporate world, in local, state, and Federal governments, and in all healthcare settings.
• Implement systems that financially support community-based services, such as health interventions that take place in community settings.
• Ensure a diverse media workforce and equitable population representation through all media channels.
• Strengthen basic pre-kindergarten through 12th grade education and create more equitable education through state funding.
• Create career information programs for young children that encourage a broad range of careers for all populations.
• Create scholarships that support a diverse workforce.

Green Group (Sandra Hilfiker, facilitator)

Goal: People are knowledgeable and empowered to advocate.

• The Federal Government mandates a single format for electronic medical records. The format is standardized, simple, and reduces errors. These records are private to meet Health Insurance Portability and Accountability Act standards.
• Patient health records are transportable as a result of pilot projects, educated legislators, and communities advocating for themselves. The transportable patient health records lead to increased monetary savings and patient safety.
• The healthcare system emphasizes prevention and wellness care. There is a shift to look at underlying causes of disease, such as environment.
• Healthcare access is reengineered to include patient/provider interactions from home in multiple ways, such as telephone, Internet, and visiting health aides. Systems are in place to ensure interactions that are tailored and interactive.
• There are more primary care providers and they reflect the diversity of our Nation. Moreover, providers are required to do community service and volunteer.
• Healthcare workers receive more skills training, career development, mentoring, and incentives to do community service.
• A health literacy resource inventory is developed and used by professionals.
• Consumers receive consistent health messages via media, providers, and allied health professionals.
• Schools of journalism and medical schools include health literacy in curricula.
• Schools are better funded for health education as a result of a Federal Government mandate. Children in grades kindergarten through 12th learn to be their own advocates and to ask questions. Successful completion of health information courses is a requirement for high school graduation.
• Public schools (kindergarten through 12th grade) teacher training certification is enhanced to include health literacy. Teachers are better paid and can obtain a 1-year master's degree in health education.
• State funding is increased to allow for collaboration between adult education, ESL, and health educators. Federal funding is diverted from defense to healthcare.
• Community health providers are integrated into adult education systems.

In addition to the goals and strategies listed above, this group identified strategies for the Federal Government to begin the process of initiating change to improve health literacy.

• Revise Requests for Proposals so that they are written as action steps.
• Identify evidence-based promising practices and link them to action steps.
• Provide technical assistance throughout the implementation of action steps and include capacity building and infrastructure assistance.
• Increase general awareness of health literacy.
• Conduct outreach to generate a larger pool of communities, providers, and national organizations in the effort to increase health literacy.
• Fund evaluations of evidence-based practices.

Conclusion

Dr. Baur remarked on the tremendous impact the programs described during the meeting have on improving health literacy in Missouri and throughout the Midwest. Yet, the day's events also highlight the challenges we as a society still face, such as poverty, which is a factor related to health literacy. Rather than become overwhelmed by the enormity of the challenges, Dr. Baur offered that it is often the small, and sometimes unintentional, steps that are a springboard for change. She encouraged participants take one small step that can serve as catalyst for change in local healthcare and public health practices and relationships. For example, several of the presentations highlighted health literacy resources, many of which are under-utilized and not well applied. Participants can identify one small way the resources can be used in a slightly different way in their own situation and possibly start a cascade of change. She thanked participants for attending and encouraged continued discussions among the attendees.