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

June 16, 2008
Tampa Bay, Florida

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 fourth and final Town Hall meeting 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 Tampa Bay Community Cancer Network (TBCCN).

Cathy D. Meade, Principal Investigator, TBCCN, Senior Member, H. Lee Moffitt Cancer Center and Research Institute, also welcomed participants, emphasizing the value in the day's agenda to inform others about the activities underway in Tampa. Health literacy is one of TBCCN's most important concerns because understanding health information and the ability to navigate the healthcare system greatly affect one's health. She urged participants to think creatively about how to move this important issue forward.

In conjunction with the Town Hall meeting, Kathy Iwanowski, nurse and artist, asked participants to contribute to a project that links art and health. Participants' responses to the question, "What is health?" were posted on a lab coat that will become part of a traveling exhibit to encourage communications about health. Participants also contributed to a faux stained-glass painting entitled, "Life is the Literacy of Health."

Highlights of Research Findings on Health Literacy

Dr. Baur presented an overview and key highlights of the 2006 Surgeon General's Workshop on Improving Health Literacy. 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.

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

Panel 1—Promising Practices: Improving Health Literacy through Innovative Community-Academic Partnerships

John Luque, postdoctoral fellow, H. Lee Moffitt Cancer Center and Research Institute, moderated this panel of presentations that describe the work underway to improve health literacy for cancer-related issues for communities in Tampa.

Increasing Health Literacy on Oral Cancer

Scott L. Tomar, Professor and Chair, School of Dentistry, University of Florida, spoke about work on a campaign to increase health literacy and, ultimately, increase earlier detection of oral cancer for African Americans. Initially, the school explored factors underlying African Americans' perceptions of oral cancer and the oral cancer exam in Jacksonville, FL, with the intention of developing culturally appropriate health messages to increase early detection. It is one of the few campaigns of its kind to target oral cancer in the African American community.

Partners include the University of Florida, Duval County Health Department, and African American churches and organizations in Jacksonville. The campaign includes ads on billboards and buses, a new patient education brochure, and participation in health fairs and community events to reach the population at risk. An evaluation survey of the effectiveness of the campaign revealed increased awareness of oral cancer and increased intent to seek screening. The successful findings resulted in additional funding to expand efforts to the Tampa region. The school hopes to develop a model that can be replicated in other communities and create a culture change in colleges of dentistry to expand community-based participatory research, increase attention to oral health literacy, and promote careers in serving the underserved.

Integrating Culture and Literacy into Cancer Communications

Under contract with the National Cancer Institute, the Cancer Information Service, Sylvester Cancer Center at the Miller School of Medicine, University of Miami, operates a call center, e-mail, and instant messaging service to answer questions about all aspects of cancer. Julie Kornfeld, Program Director, described the Spanish-language component. A team of more than 20 multicultural, bilingual professionals responds to a culturally and linguistically diverse group of Spanish-language callers each year. Therefore, the Cancer Information Service is in a unique position to play an important role in improving the health of the Hispanic callers it serves and improving their ability to make appropriate health decisions. The challenges, however, lie in the limited health literacy of the callers, their need for financial assistance and direct services, and their lack of access to resources.

In a pilot project with all female Spanish-speaking callers (approximately 700), staff administered a survey that examined factors associated with the willingness to receive the vaccine for human papillomavirus (HPV). Survey results showed that most callers lacked understanding of the risk factors associated with acquiring HPV. Moreover, the tremendous heterogeneity among the callers indicated that health messages need to be guided by both socio-cultural context and language differences to meet the differing needs of Spanish-language callers. The results also demonstrate the importance of an informed staff that understands health literacy, the socio-cultural context, and why these issues matter. For example, the study showed that tailored and culturally-relevant education can impact knowledge and health behavior related to HPV vaccination. Future plans involve creating messages and interventions that yield measurable differences in healthcare decision making and that add to the body of evidence that culturally informed cancer communications translates into improved outcomes.

Literacy, Language, and Culture: Addressing Everyday Health Realities

Dinorah Martinez-Tyson, Research Coordinator, H. Lee Moffitt Cancer Center and Research Institute, spoke about a stress management toolkit adapted for Latinas who are undergoing chemotherapy. By 2050, Latinos will comprise 29 percent of the U.S. population. When seeking medical care, Latinos may have different expectations and communication preferences and limited familiarity with navigating the healthcare system. In addition, the healthcare system is not able to address most health literacy barriers, placing large language and fluency demands on patients and their families.

Therefore, the Moffitt Cancer Center adapted an English-language stress management toolkit to help Latinas manage their health. Formative research was conducted with the community to identify information needs, communication preferences, and particular stress triggers. The toolkit, including a booklet, video, and DVD, was field tested and revised to incorporate Latina preferences, which revealed a strong interest in learning cause and effect as it relates to health issues. The testing results demonstrate the importance of going beyond translation to adaptation and transcreation, an approach that involves creating linguistically and culturally adapted materials for different ethnicities and cultures. To date, the project has resulted in meaningful collaborations with community members and organizations and has refined a model for creating health materials and interventions that are culturally relevant and that meet the literacy skills of the population.

Discussion

Participants had the opportunity to pose questions to the panelists.

• With regard to the difficulty in creating standardized translations given the range of Spanish languages and cultures, Ms. Martinez-Tyson and Ms. Kornfeld agreed about the importance of including members from different ethnicities and cultures when obtaining feedback about materials. When issues reach an impasse, a consensus can usually be made to ensure that the message is understood by everyone and is not offensive to anyone.
• Asked about work with the Haitian community, Ms. Kornfeld explained that a partnership is underway to increase health literacy in cancer communications among members of the Haitian community.
• One participant commended Ms. Martinez-Tyson on the use of audio to convey health messages. Because many communities do not have online resources, audio communications can still play a large role in communicating messages.
• A participant noted that none of the discussions included youth, the sons and daughters of immigrants, and how they can fit into interventions, given that they are our future leaders. Panelists agreed on the importance of targeting this group. Ms. Kornfeld described work underway with youth in schools, agreeing that they are good messengers, bringing health information into homes.
• Several participants asked specific questions about Dr. Tomar's oral cancer campaign with the School of Dentistry.
  • Regarding evaluation measures, Dr. Tomar explained that the school conducted formative research and a baseline survey of African American adults in Jacksonville and in Tampa (the control group). A follow up survey 2 years later revealed no changes in awareness in Tampa, but showed that African Americans in Jacksonville displayed significant increases in their awareness of oral cancer and its signs and symptoms.
  • Regarding free oral cancer screenings, Dr. Tomar explained that free screenings were available and that one of the goals of the campaign was to stimulate demand for screenings. A next step for the initiative is to work with dentists to encourage them to offer screenings.
  • A participant asked whether different ethnicities receive different levels of care and whether access to services is a barrier. Dr. Tomar explained that compared to other cancer screening, oral cancer has the largest disparities. The School of Dentistry is examining this issue now to determine how best to address it. Also, a disparity exists between what dentists say they do in terms of screening versus what adults say about receiving exams.
  • Noting that Dr. Tomar's campaign targets young adults, one participant wondered whether any efforts target older African Americans. Dr. Tomar agreed that it is a tremendously underserved population and that more work needs to be done. He is not aware of materials that serve this population.
  • One participant expressed interest in partnering with the School of Dentistry to get the African American screening program into his church. Dr. Tomar noted that the campaign focuses on Jacksonville, but work is underway to bring the project to Tampa and expressed interested in working with the participant.
• Noting a disconnect between provider communications and patient understanding, a participant emphasized the importance of working with the population one is trying to reach when creating effective interventions.
• Another participant noted that consent forms are often too long and not understandable. She suggested teaching those with limited health literacy to be their own advocates by asking that forms be read to them. Ms. Martinez-Tyson described results of their work, showing that patients take away only 10 percent of what is said, so the Center incorporates multiple visits and contact points, both verbal and written.
• Asked how CIS staff members get patients to understand complex cancer issues, Ms. Kornfeld explained that responses are tailored and personalized to the caller and address simple to complex questions about cancer.
• Philip Anderson offered the services of the Florida Department of Education for collaborations and partnerships to improve health literacy among Floridians. He also noted the disparities in providers' communication skills in responding to patients with limited literacy skills and asked about research underway to build the skills of practitioners. Dr. Tomar described ongoing work at the School of Dentistry with first-year students to develop communication skills to become competent in speaking with people from different backgrounds and literacy levels.

Panel 2—Promising Practices: Toward an Informed and Engaged Community about Health Literacy

Shalewa Noel-Thomas, Program Manager, TBCCN, introduced the panel members, who provided a range of perspectives on the initiatives underway to improve health literacy within communities in Florida.

Teaching Health and Literacy

Gregory Smith, Executive Director, Florida Literacy Coalition, Inc., described several projects. One project involved a partnership with GROWS Literacy Council to create a health literacy class for Hispanic women and their children that incorporates cultural practices, values, and family. A comparison of pre- and post-test scores from class participants revealed increases in understanding of various health literacy tasks, such as the ability to complete a basic medical form and understanding how to make an emergency phone call. Work on this project also led to the development of a curriculum for English as a Second Language students. The curriculum includes a teacher's guide and student resource book, written at the 4th-grade level, with chapters on health care, doctors, medicines, nutrition, chronic diseases, and staying healthy. It is currently undergoing field testing in three Florida regions.

Another Coalition initiative involves community sites that create projects related to health and nutrition. At one such site, community members wrote a song asking for information about what they need to do to be healthy. In closing, Mr. Smith invited participants to contact the Florida Literacy Coalition to learn more about the many partnership opportunities for adult basic education programs in Florida.

Teachable Moments for Adult Education

The Multicultural Resource Center, Inc. provides GED and adult basic education classes for a diverse group of students ranging in age from 18 to 83. Patricia Hillman, adult educator at the Center, explained that the challenges in teaching the students about health lie in the disparity between what the healthcare system demands and the skills of the students. Health education and promotion generally relies on print media, often written at the 10th-grade level. Students at the Center generally test at the 4th- through 6th-grade reading levels. In addition to reading comprehension limitations, older adults often have hearing and vision limitations.

Staff at the Multicultural Resource Center reinforce the belief that education comprises more than just books. Center staff take advantage of teachable moments to help students solve life issues and challenges. Through activities such as group discussions, certification classes, and guest speakers who talk about everyday challenges such as reading prescription labels, staff help to educate the students. Significant achievements include a partnership with the First Missionary Baptist Church to educate members of the community and the annual Multicultural Festival that includes dissemination of healthcare information and education services. Successes at the Center, Ms. Hillman explained, are often about the smaller moments, such as when a student deals with a healthcare issue or overcomes an obstacle to improve health.

Following Ms. Hillman's presentation, two of her students shared their personal experiences. Before finding the Center, Nathaniel quit high school and was unsure of his future. The Center and the First Missionary Baptist Church helped him to set goals and earn his GED. April spoke of the many skills she has learned and, most importantly, of the confidence she now has to advocate for herself.

Improving the Health Literacy of Florida's Elders

Samantha Haigler Nevins, Health and Wellness Consultant, West Central Florida Area Agency on Aging, Inc., described an education program to increase older adults' and their service providers' awareness of the problems associated with low health literacy and teach them ways to improve their health literacy skills.

Noticing a commonality between chronic disease self-management principals and health literacy improvement techniques, the Agency on Aging implemented Stanford University's Chronic Disease Self-Management Program for its older adult population. To date, the program has increased awareness of the importance of health literacy among older adults and their service providers. In the future, the Agency hopes to see changes in older adult behavior, such as an ability to question healthcare providers and advocate for themselves, better self-management of disease, and better medication compliance. The Agency also hopes to encourage caregivers to create partnerships with providers to help their patients prepare for medical appointments and assist them in accessing local resources.

Another goal is to reach culturally diverse older adult populations, such as those with low incomes and those who are medically underserved. The Agency emphasizes a holistic approach that is essential to engage elders, caregivers, and providers. Future work involves a pilot program—"What to do for Senior Health"—an expansion of the Disease Self-Management Program that also includes a comprehensive evaluation of the program.

Discussion

At the end of the presentations, meeting participants posed several questions to the panelists.

• When asked whether the curriculum and materials discussed in the presentations are available to the community, Mr. Smith responded that the Florida Literacy Coalition materials are available for free download within the next month on the organization's Web site. The site also provides links to other resources. Mr. Anderson, from the Florida Department of Education, added that the adult information page of the Department's Web site lists materials and resources.
• Dr. Baur asked the panelists what is necessary to take these programs to the next level. April, a student from MRC, emphasized the importance of communicating with the people one is trying to serve to create effective programs. Another participant suggested that visiting the communities and churches is important to see first-hand people's struggles with health care. Ms. Nevins added that the critical point is to build community-based infrastructure to support health literacy.
• With regard to communicating effectively with people with limited health literacy, Ms. Hillman noted how important it is to communicate with her students using language similar to what they are used to hearing in their everyday lives to increase their health literacy. They take what they learn home to their families. Ms. Nevins agreed, explaining that for the elder population, understanding cause and effect can lead to behavior change.
• Dr. Baur concluded the panel, emphasizing a key point from the Surgeon General's Workshop on Improving Health Literacy—health literacy is more than simplifying language; it involves providing information that reflects people's experiences, cultures, and values.

Envisioning a Health-Literate Society

During the afternoon session, participants were randomly assigned to one of four small groups and asked to review a list of goals for achieving a more health-literate society that had been developed by participants at the three previous Town Hall meetings. They were asked to identify any missing goals, then select one or two goals and identify strategies and action steps for achieving the goals.

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.

The main goals created by past Town Hall Meeting participants are:

1. There is an integrated healthcare technology system.
2. All health care is patient-centered.
3. All healthcare providers receive health literacy training and use health literacy principles when communicating with patients.
4. The education system is a key driver of health literacy.
5. Consumers are empowered to achieve and maintain good health.
6. Health communication is the best it can be, reaching all members of society.
7. Health care is more affordable and accessible.

Floridian participants identified four additional goals:

8. Volunteers act as advocates to improve health literacy.
9. Children are prepared to communicate with providers and other healthcare professionals.
10. Other systems outside of healthcare, such as businesses, media, and state and local agencies, are integrated into achieving and maintaining good health and quality of life.
11. More healthcare professionals are recruited and retained--the workforce more closely resembles the population. Health literacy training is integrated into all professional schools.

Prioritized Goals

Participants chose one to two goals from the above lists and identified strategies for achieving them.

Blue Group (Moya Benoit Thompson, facilitator)

Goal 10: Other systems outside of healthcare, such as businesses, media, and state and local agencies, are integrated into achieving and maintaining good health and quality of life.

• Create a quality-of-life commission for each community that includes community members and representatives from businesses, the media, and other arenas.
• Use schools as resources for health information and interventions for parents.
• Obtain media and business marketing buy-in for improving health literacy.
• Incorporate colleges of public health and medical schools into the community infrastructure goals using marketing principles to achieve health behavior changes.
• Create national television programs on health literacy and cultural competency.
• Give businesses incentives to incorporate health literacy. Present a model that demonstrates the return on investment for including health literacy initiatives. Create a health literacy council that offers products for the business world.
• Create a national campaign, similar to the environmental "green" movement, which reinforces health and health literacy.
• Create a certificate of merit or seal of approval that drives businesses into communities to be responsive to health and health literacy.
• Obtain buy-in from politicians.
• Educate insurance companies to support prevention and wellness and health literacy. Demonstrate how health literacy affects profit and loss margins.
• Conduct broad-spectrum research to show that improving health literacy locally and national improves health outcomes and lowers healthcare costs. Also show that businesses thrive and education improves.

Goal 3: All healthcare providers receive health literacy training and use health literacy principles when communicating with patients.

• Modify curricula to include health literacy and make it a requirement for graduation at all health profession schools.
• Require competency training for licensure and recertification.
• Ensure healthcare professionals consult with consumers and patients to identify consumer health needs and wants.
• Fund patient navigation systems and ensure sustainability of the systems.
• Teach healthcare providers to communicate through an interpreter or patient navigator liaison.
• Create a healthcare workforce that more closely resembles the population being served.
• Use innovative technologies to ensure that providers meet the learning preferences of their patients.
• Adopt technological resources to make providers more accessible to patients.
• Implement telehealth and telemedicine—health services via telecommunications—nationwide.

Yellow Group (Sandra Hilfiker, facilitator)

Goals 2 and 3: All health care is patient-centered. All healthcare providers receive health literacy training and use health literacy principles when communicating with patients.

• Train providers to communicate effectively.
• Require standardized curricula to receive Federal funding. Engage the private sector to help.
• Create mandatory health literacy components for schools to be accredited.
• Engage patients to participate with accrediting bodies, school faculty, and insurance companies.
• Create curriculum for community-based centers.
• Involve libraries and create wellness centers within the libraries.
• Use innovative technologies, such as enabling free 24-hour communication between patient and providers that includes the ability to share pictures.
• Create patient-centered insurance plans that benefit the patient.
• Use touch-screen kiosks that incorporate audio, visual, and voice command and that are placed in libraries, grocery stores, banks, hospitals, airports, and post offices, similar to placement of automated teller machines.
• Offer video conferencing between patients and providers.
• Ensure that all components of the healthcare system are multilingual.
• Engage patients to help create curricula and participate with staff in healthcare settings.
• Design communications and curricula to benefit vulnerable populations.
• Reengineer the healthcare system to ensure that providers have more time with patients.
• Shift the healthcare system from one of disease management to prevention and wellness.
• Require all providers to attend adult education classes.
• Engage patient navigators as commonplace professionals in the healthcare setting.
• Bring organizations together to increase funding, create synergies, and eliminate waste and duplicate efforts.
• Redefine priorities for health care to ensure Federal funding.

Goals 4 and 5: Consumers are educated and empowered to achieve and maintain good health through the lifespan.

• Engage employers to provide incentives to employees to engage in healthy behaviors, such as physical activity.
• Revise K through 12 health education curriculum to ensure that it is geared to prevention and lifestyle and that it is in line with a reformed healthcare system.
• Standardize K through 12 curriculum on a national level.
• Engage organizations to work locally to create health messages, interventions, and activities within communities.
• Create a health literacy bill that provides incentives for collaboration and that creates a policy shift.
• Create opportunities, such as walks and gardening, at the community level for members to become educated about their health. Make participation the norm.
• Create green communities that encourage activity.
• Create education opportunities for learning in many locations, such as kiosks.
• Use telephones for education and information.
• Enlist insurance companies to provide incentives for health education.
• Create a Federal tax break for being healthy.
• Create patient-centered health care that empowers consumers.
• Encourage consumers and healthcare providers to collaborate to have healthy community events.
• Incorporate health into the media, such as creating "Health American Idol."
• Put a $10-tax on cigarettes to fund health education programs and communication messages.
• Ensure navigators are readily available to help consumers navigate all healthcare systems and issues.

Red Group (Joanne Locke, facilitator)

Goal 3: All healthcare providers receive health literacy training and use health literacy principles when communicating with patients.

• Standardize continuing education units and university health courses.
• Incorporate health literacy training into medical schools and continuing education units for providers.
• Create mandatory health literacy continuing education units for license renewal.
• Ensure all home health agencies have training in health literacy.
• Engage consumers in the process.
• Integrate providers to create teamwork.
• Enlist the help of consumers to participate in health literacy trainings at universities and in other settings.
• Create a core curriculum that includes a cultural competency model.
• Standardize all health literacy activities at the national level.
• Form collaborations between health educators and adult literacy programs.
• Create partnerships with local literacy programs.
• Create partnerships at both the local and national levels. Engage the Joint Commission to take the lead with Government collaborations.
• Identify evidence-based best practices for training providers in health literacy.
• Ensure centralized Government funding for health literacy training for all health professionals.
• Create a national evaluation instrument to assess the effectiveness of activities and interventions.
• Create mechanisms for sharing health literacy tools and materials.
• Create simple, standardized health forms and intervention evaluations.
• House health information kiosks in public places (similar to blood pressure cuff locations) that are staffed by volunteers, such as retired and disabled healthcare professionals and students.
• Create maximum output with limited funding.
• Grade academic institutions based on health literacy, as an incentive.

Green Group (Marlene Rivera, facilitator)

Goal 2: All health care is patient centered.

• Take advantage of patient navigators.
• Create patient-centered processes and healthcare delivery system.
• Create patient education self-management goals.
• Identify multidisciplinary healthcare professional teams, using the U.S. Department of Veterans Affairs' system as a model.
• Create a health literacy mission.
• Compile an evidence base showing the need for improved health literacy.
• Conduct research where gaps are identified.
• Incorporate plain language into future acts of Congress and laws.

Conclusion

Dr. Baur noted a number of themes that emerged from the day's events. First, the importance of involving community in all aspects of health literacy work was captured throughout the panel presentations and discussion sessions. In addition, participants highlighted the importance of looking beyond the healthcare system to improve health literacy. Much of the research described during the Surgeon General's Workshop on Improving Health Literacy, Dr. Baur noted, focused on the healthcare setting. As this area grows and interventions are developed, solutions must go beyond the healthcare system.

A final theme that emerged is that health literacy is not one person or organization's problem; therefore, it cannot be solved by any one person or organization. Strategies for improving health literacy must go beyond standard methods of health education toward a community focus that includes a holistic approach. Dr. Baur also commented that she did not hear much discussion about technology and whether participants believe it to be an integral component of the work to address health literacy. Participants, however, assured her of its value in their work and ended the day with examples of how technology is being used in communities in Florida to improve health literacy.