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:

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—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.

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.

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:

  1. Volunteers act as advocates to improve health literacy.
  2. Children are prepared to communicate with providers and other healthcare professionals.
  3. 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.
  4. 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.

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

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.

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

Red Group (Joanne Locke, facilitator)

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

Green Group (Marlene Rivera, facilitator)

Goal 2: All health care is patient centered.

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.