Town Hall Meeting on Improving Health Literacy
Vision for a Health-Literate Florida
June 16, 2008
Tampa Bay, Florida
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
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
- 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 (http://www.surgeongeneral.gov/topics/healthliteracy/toc.htm).
Panel 1Promising 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
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.
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
- 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
- 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
- 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 2Promising 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
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
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
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.
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
- 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 Literacyhealth 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:
- There is an integrated healthcare technology system.
- All health care is patient-centered.
- All healthcare providers receive health literacy training and use
health literacy principles when communicating with patients.
- The education system is a key driver of health literacy.
- Consumers are empowered to achieve and maintain good health.
- Health communication is the best it can be, reaching all members of
- Health care is more affordable and accessible.
Floridian participants identified four additional goals:
- Volunteers act as advocates to improve health literacy.
- Children are prepared to communicate with providers and other
- 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.
- More healthcare professionals are recruited and retained--the
workforce more closely resembles the population. Health literacy training is
integrated into all professional schools.
Participants chose one to two goals from the above lists and identified
strategies for achieving them.
Blue Group (Moya Benoit Thompson,
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
- Use schools as resources for health information and interventions for
- Obtain media and business marketing buy-in for improving health
- Incorporate colleges of public health and medical schools into the
community infrastructure goals using marketing principles to achieve health
- Create national television programs on health literacy and cultural
- 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
- 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
- Obtain buy-in from politicians.
- Educate insurance companies to support prevention and wellness and
health literacy. Demonstrate how health literacy affects profit and loss
- 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
- 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
- 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
- Implement telehealth and telemedicinehealth services via
Yellow Group (Sandra Hilfiker,
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
- 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
- Use innovative technologies, such as enabling free 24-hour
communication between patient and providers that includes the ability to share
- 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
- Engage patients to help create curricula and participate with staff
in healthcare settings.
- Design communications and curricula to benefit vulnerable
- 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
- 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
- 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
- Create green communities that encourage activity.
- Create education opportunities for learning in many locations, such
- Use telephones for education and information.
- Enlist insurance companies to provide incentives for health
- 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
- Put a $10-tax on cigarettes to fund health education programs and
- 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
- Standardize continuing education units and university health
- Incorporate health literacy training into medical schools and
continuing education units for providers.
- Create mandatory health literacy continuing education units for
- Ensure all home health agencies have training in health
- 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
- Standardize all health literacy activities at the national
- Form collaborations between health educators and adult literacy
- 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
- 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
- Create simple, standardized health forms and intervention
- 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
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
- 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
- Conduct research where gaps are identified.
- Incorporate plain language into future acts of Congress and
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.