Pam C. Silberman, J.D., Dr.P.H. North Carolina Institute of Medicine
The North Carolina Institute of Medicine (NCIOM) is a quasi-state agency chartered in 1983 by the State’s General Assembly to
- study important health issues facing the state;
- provide nonpartisan advise to the North Carolina (NC) General Assembly and executive agencies to help improve health policies; and
- provide advice to health professionals, insurers, business leaders, and the public to improve the health of NC residents.
In 2007, the North Carolina Division of Public Health asked NCIOM to convene a task force to study health literacy in the state. In response, the Task Force on Health Literacy1 was formed to bring together key health literacy stakeholders and partners from throughout the state to review research about health literacy challenges and identify potential solutions.
1The task force was supported through a grant from the Centers for Disease Control and Prevention (CDC).
The Task Force members, 50 in all, represented the broad spectrum of stakeholders in health including health care provider groups and associations, state and local health and education agencies, insurers, consumers, and adult literacy experts. In terms of state agency involvement, the task force included members representing the NC Division of Public Health, the NC Department of Health and Human Services (NC DHHS) Medicaid unit, and the state’s Area Health Education Center (AHEC) program. A consensus driven process led to the formulation of 14 recommendations.
In formulating their 14 recommendations, the task force took a universal precaution approach which is one of ensuring that communications are clear for everyone, regardless of literacy level. The recommendations focused on improving health care communications for all populations within the state rather than attempting to improve the literacy level of the general public. A 2010 assessment of progress on implementing the task force recommendations found that progress had been made on 11 of the 14 recommendations. No action had been taken to implement the remaining 3 recommendations. Silberman pointed out that by bringing together the right partners, the Task Force’s recommendations were generally implemented without the NCIOM’s active involvement. The NCIOM is not an advocacy organization so this level of engagement was critical to the success of the initiative, she said.
One recommendation of the task force was to create a NC Health Literacy Center of Excellence charged with
- educating health professionals,
- identifying evidence-based guidelines or best practices for health communications,
- disseminating health education materials, and
- assisting adult literacy professionals.
While a new center was not created, many of the recommended functions of the proposed center are now being carried out by the North Carolina (NC) Program on Health Literacy (http://www.nchealthliteracy.org/) and the N C Health Literacy Council (http://www.uncg.edu/csr/healthliteracy/). The NC Program on Health Literacy is housed at the University of North Carolina at Chapel Hill. It is a research- and teaching-oriented program that is actively involved in the identification of best practices. With Agency for Healthcare Research and Quality (AHRQ) support, the program developed the Health Literacy Universal Precaution Toolkit that supports primary care practices. The toolkit can be accessed at http://www.ahrq.gov/qual/literacy/.
The NC Health Literacy Council is housed at the University of North Carolina at Greensboro. The council primarily works with adult literacy
and health literacy groups and has created local health literacy councils in several counties. The council also works with health care providers. Checklists are used to see whether providers and academic health centers are using clear communications and effective health literacy tools.
Another task force recommendation was to provide more education on health literacy to health professionals. Older providers who were educated many years ago often do not know about or understand the concept of health literacy, Silberman said. Reaching out to providers who have been in practice for a while is a challenge. While progress in improving health professional understanding of health literacy has been made, much remains to be accomplished. For example, during a 2008 meeting with about 50 physicians in Fayetteville, NC, none had ever heard of the term health literacy. In contrast, all of the students at the School of Public Health have heard this term. Several approaches are being taken to improve in this area including the following:
- The community college system includes information on health literacy in all nursing courses addressing patient education.
- Individual didactic sessions are offered in medical schools, pharmacy programs, and public health schools.
- The Area Health Education Center (AHEC) program offers health literacy content in continuing education programs that are offered to health professionals.
There are significant challenges to reaching out to providers who have been in practice for some time. When the AHEC program initially offered health literacy workshops, there was little interest. However, when health literacy concepts were embedded into their other workshops around patient safety and patient communication, there was considerable interest. Health literacy is also embedded in the community college training for nurses.
In response to the problem of pharmacy errors and the general lack of understanding by consumers about how to take medication, the task force recommended that pharmacists provide medication counseling and that North Carolina foundations test new models to enhance the role of pharmacists as medication counselors. Subsequently, the NC Health and Wellness Trust fund created “ChecKmeds,” a pharmacy counseling service available at no cost to seniors across the state. Other foundations are helping to fund dissemination activities.
Another recommendation of the task force called for the NC DHHS to review all consumer education materials for appropriate health literacy. The NC DHHS website materials must now be written at no greater than a 7th-grade reading level. In addition, specific materials targeted to the Medicaid population have been evaluated and tested for health literacy.
Prior to the work of the task force, each local Medicaid network was creating its own materials, which were never tested for health literacy. Educational materials targeted to people with chronic illnesses have all been reviewed by health literacy expert Darren DeWalt and his colleagues at the University of North Carolina. Approved materials are being used across the state. A library of patient management tools has also been created.
The task force also recommended that people within NC DHHS at both the state and local level be trained in health literacy so that they could more effectively communicate with community groups and consumers. Silberman reported that some divisions have implemented training programs and those that have accomplished the most include the following:
- The Division of Public Health, Children and Youth Branch, which requires training for state and local staff on health literacy.
- The Division of Mental Health, Developmental Disabilities, and Substance Abuse Services has two trained staff persons who work on literacy and cultural competency issues and disseminate materials to local agencies.
- The Medicaid program has a patient education workgroup with representatives from across the state.
Another task force recommendation addressed the need for foundations and insurers to fund efforts to use lay health advisors, group education sessions, and care managers to enhance patient education. Progress in this area includes
- the use of care managers and group medical visits within the Medicaid program;
- the use of community health workers within the Division of Public Health;
- the use of community health workers (including those serving the Hispanic community) and care managers at community health centers; and
- the implementation of a congregational nurse program to provide health education, including health literacy, to faith communities.
The task force also recommended that malpractice carriers incorporate health literacy education into risk management training. Medical Mutual Group, the state’s largest physician malpractice carrier, has incorporated information about health literacy in their risk management training, and it has created a health literacy toolkit. The training emphasizes the importance of clear communication in minimizing malpractice risk.
Another Task Force recommendation was that health literacy initiatives should be implemented in English as a Second Language (ESL) programs, adult basic education, and adult literacy courses. A health-related curriculum called Expecting the Best, developed prior to the formation of the NCIOM Task Force, has been used to meet the needs of people with limited English proficiency in the community college system. Many community-based literacy organizations have also incorporated this curriculum and health literacy content into their programs.
There are, however, three areas where little progress has been made, Silverman said. First, the task force recommended that the NC Board of Pharmacy require improvements in prescription bottle labeling, but no progress has been made in this area. Second, the task force recommended tying insurance reimbursement to a requirement that health professionals receive health literacy training. Again, no progress has been made in this area; however, Silberman said that there is potential for progress as value-based purchasing and pay-for-performance reimbursement are considered and adopted. Finally, the Task Force recommended that a broad-based social marketing campaign be launched to encourage consumers to be more active in asking questions of their providers. A state-based social marketing campaign was not funded through the NC general assembly; however, AHRQ’s health literacy campaign has been promoted nationally and is airing health literacy commercials on television.
The North Carolina program is continuing to conduct research, educate health providers and administrators, and develop health literacy materials and interventions. The NC Health Literacy Council continues their grassroots efforts to build community coalitions and improve health literacy throughout the state. The council had its first annual health literacy conference in late 2010 with more than 100 attendees. The professional education and training programs described earlier through AHEC, the Medical Mutual Group, and the academic health centers have continued. The NCIOM is now focused on how best to implement health reform in the state rather than being directly involved in health literacy. However, health literacy is embedded in other work of the institute.
Silberman concluded by pointing out that there are several components of health care reform that provide opportunities to incorporate health literacy into implementation plans. These include
- developing comparative insurance information for the health benefit exchange (“plain language”) (Sec. 1311(e)(3)(B));
- considering new models of care to more fully engage consumers in self-management of chronic diseases and primary prevention; and
- using patient education materials (e.g., decision aids, research findings) (Secs. 3501, 3506, 3507).
Other provisions in the Patient Protection and Affordable Care Act related to health professional training, expanding the role of patient navigators, and working with underserved populations also provide opportunities to focus on health literacy. In addition to the NCIOM 2007 report and its update in 2010, the NCIOM published an entire North Carolina Medical Journal on patient-provider communication (NCIOM, 2007).
Mary Ann Abrams, M.D., M.P.H. Iowa Health System
Abrams, a pediatrician, used developmental terms to describe the status of Iowa’s health literacy initiatives. If the state were a child, she said, it would be at the “preschool age” in terms of health literacy. It is walking around and learning, but it is still in need of support. And as has any preschooler, the state has exciting ideas and wonderful opportunities in its future.
Iowa began to develop health literacy initiatives with support from the Wellmark Foundation, the philanthropic arm of the state Blue Cross insurer. The foundation had health literacy as one of its priority funding areas. This focus was a result of the Institute of Medicine’s identification of health literacy as necessary to achieving quality and transforming health care in the United States (IOM, 2004).
An informal survey of state activities in health literacy shows numerous efforts under way Several of the sponsors and their projects are listed in Box 3-1. The next step in developing statewide capacity for health literacy is to coordinate and strengthen these various activities.
The Iowa Health System, Iowa’s largest integrated health system, initiated the Health Literacy Collaborative project in 2003 to improve health care quality and safety by fostering effective communication and enabling all patients to read, understand, and act upon health information. Health literacy teams have been established in collaborative settings, including 11 senior hospital affiliates, 15 rural hospitals, 140 clinics, and home health settings. The Plan, Do, Study, Act (PDSA)2 model for improvement is used. The education and training provided to the teams succeeded in turning the project into a passion, Abrams said, and also persuaded leadership to
2“The Deming cycle or PDSA cycle is a continuous quality improvement model consisting of a logical sequence of four repetitive steps for continuous improvement and learning: Plan, Do, Study (Check), and Act.” See http://www.valuebasedmanagement.net/methods_demingcycle.html (accessed August 25, 2011).
SOURCE: Abrams, 2010.
champion the efforts. Instrumental to the project’s success were involvement of adult learners and patients in the project’s development, using multi-faceted approaches, and collaborating with interested partners.
Creating a shared vision for health literacy in Iowa began in October 2008 with a strategic planning day attended by over a hundred individuals from 40 to 50 different agencies and organizations. Nicole Lurie was invited as part of a 2-day visiting professorship.3 Attendees were very enthusiastic and supportive of moving forward with health literacy initiatives. A white paper published following the meeting was widely circulated. From May 2009 to December 2010, a relatively large steering work group discussed the potential mission, functions, and infrastructure of a health literacy center, and how to launch and sustain such a center (Box 3-2).
The steering group agreed on a set of principles to guide health literacy efforts in Iowa (Box 3-3). These included the idea that a universal approach to health literacy would be taken. That approach recognizes that anyone can experience low health literacy, depending on the circumstances. Interventions, therefore, should be targeted to everyone, not only those who struggle with reading, and additional support should be available when needed. Another principle is to address both individual clinical encounters and, more broadly, populations at large. Collaborative part-
3Dr. Lurie, a prominent investigator in the area of health literacy, had been involved in the development of an interactive mapping tool to target low health literacy. She currently serves as the U.S. Department of Health and Human Services Deputy Assistant Secretary for Preparedness and Response.
Des Moines University
Iowa Department of Education
Iowa Department of Public Health
Iowa Health System
Iowa Healthcare Collaborative
Iowa Hospital Association
Iowa Medical Society
Iowa Nurses Association
Iowa Pharmacy Association
Mercy Clinics, Inc.
Nebraska Primary Care
Association (community health centers)
New Readers of Iowa
Principal Financial Group
University of Iowa
- Center for Disabilities and Development
- Geriatric Education Center
University of Northern Iowa Centers on Iowa/Health Disparities and Immigration Leadership
SOURCE: Abrams, 2010.
- Universal issue
- All aspects of health—individual and population-based
- Fundamental to
- health reform
- reducing costs
- Patient, family, adult learner involvement
- Collaborative partnerships
- Results-oriented sustained improvement
- Response to National Plan to Improve Health Literacy
SOURCE: Abrams, 2010.
nerships and the involvement of patients, families, and adult learners to achieve results, translate research into action, and sustain momentum are critical. The steering group’s work has provided a platform to articulate Iowa’s response to the U.S. Department of Health and Human Services National Action Plan to Improve Health Literacy (HHS, 2010).
The formal mission of Health Literacy Iowa (HLI) is to promote and facilitate the ability of all Iowans to use effective communication to optimize their health. The functions of HLI are to
- make the policy and business case for health literacy, raise awareness, and advocate for change;
- assist health care providers and organizations in using health literacy-related interventions and creating system change;
- educate and train;
- empower patients, families, and consumers;
- share resources;
- participate in research; and
- collaborate with state and regional partners.
HLI activities have taken place in three phases. Phase 1 occurred from July 2009 to December 2010 and included several informal initiatives. First, an Iowa-specific economic analysis was commissioned to provide economic data to make the business case for planned initiatives. As part of an awareness and branding initiative, a one-page description of the program was completed, a website was built, an electronic newsletter was circulated, and a number of presentations were delivered. This outreach led to the involvement of additional partners and the formation of a business development committee. Also during phase 1 adult learners and the New Readers of Iowa conducted a formal review of various materials and documents. That review was very informative and efforts are under way to develop and formalize this process so other materials can be reviewed and revised.
Faculty training and online learning modules were developed in collaboration with the Iowa Geriatric Education Center. Grant development activities included the development of reader friendly documents through an ADAPT4 grant in partnership with the College of Pharmacy at the University of Iowa, and pursuit of a funding opportunity through the National Library of Medicine to support community libraries to function as the local “storefront” for HLI. The public library can provide access to health information using local librarians who are already information specialists. Finally, a steering work group partner was able to get an appropriation for HLI included within the federal appropriation request.
Phase 2 is the transition to an independent entity and will take place from January through December 2011. During this time HLI may be established as an independent not-for-profit organization. In the near term,
4ADAPT is the acronym for Adaptation and Dissemination of AHRQ (Agency for Healthcare Research and Quality) Comparative Effectiveness Research Products.
its goals will be to build capacity, develop clients and services, increase collaborative opportunities, and develop regional partnerships. The long-term goal is to establish HLI as the hub and the “go-to” place for health literacy information, resources, and connections.
HLI is considering a prototype regional health literacy cooperative with Minnesota, Wisconsin, Missouri, and other states. This cooperative would address capacity-building issues, and draw upon the expertise, skills, and strengths of each member state. HLI also intends to develop an extensive menu of education and training opportunities for a variety of audiences, including healthcare providers, employers, payers, and state agencies and to make material accessible using “plain language.”5
HLI also intends to formalize the network of adult learners to support health literacy education, training, and services. This group is engaged and brings great value to the work of the organization. Other efforts will focus on developing the concept of library-based, community health literacy resource centers and Iowa-specific health literacy training materials, especially health literacy stories and videos. Finally, HLI intends to develop an evaluation and research agenda within Iowa and regionally.
Phase 3 of Health Literacy Iowa, the future endeavors, will take place in 2012 and beyond. These include advocating for health literacy by making the business and policy case for its role in transforming the healthcare system; articulating and integrating health literacy into health promotion, disease prevention, and disease management efforts; and augmenting programs in the Department of Education, especially those that integrate health literacy into early child development programs, and kindergarten through grade 12. HLI also intends to collaborate with educators at multiple levels including adult literacy and English as a Second Language (ESL). HLI expects to expand prevention strategies targeted to those at risk for low health literacy. Another important endeavor is to provide training, including technical assistance, consulting, and coaching. Priority areas for these activities include condition-specific initiatives, cultural and linguistic training, and interpretation services.
At the community or population level, HLI will focus on providing accessible materials and disseminating information to the public, employers, state agencies, legislators, and special groups (e.g., children). It will increase involvement in research and also continue its role as a convener and developer of partnerships at the state, regional, and national levels.
Abrams concluded her remarks by discussing lessons learned. She described HLI as a learning organization that continues to adapt and be flexible. There is a desire to involve as many people and perspectives as
5“Plain language” is a term used to describe communication written and designed so people can understand information that is important to their lives.
possible. Obtaining additional input from employers and payers would strengthen HLI. In terms of sustainability, core funding is needed. The principles of quality, safety, cost containment, health disparities reduction, and patient-centered care resonate very well with stakeholders, Abrams said. For any organization, there is always the question of whether the organization should go public and incrementally build capacity, or alternatively, build capacity first and then launch programs. Abrams said that HLI continues to develop its own skill sets and emerge as an independent entity.
As a member of the U.S. Pharmacopeia (USP) Health Literacy Advisory Committee, roundtable member Cindy Brach asked Silberman about the lack of progress made on prescription drug labeling in North Carolina. She asked how the NC Board of Pharmacy was approached, what resistance to labeling reform was expressed, and whether having a USP standard would be helpful. Brach clarified that the federal government has no authority over regulating prescription drug labels and that it is left up to state boards. She added that the USP Advisory Committee will be publishing a standard in the form of a chapter on a patient-centered prescription labeling.6
Silberman replied that the NC Board of Pharmacy had not been included on their task force. Pharmacists were on the task force, but not the board. The board was asked to make a presentation to the task force when prescription labeling was recognized as an important issue. There is interest in the issue, but Silberman speculated that the Board of Pharmacy might be concerned about the reaction of local pharmacies to any labeling changes. She added that having nationally recognized guidelines would be very helpful. A standard would prevent local boards from having to develop their own labeling guidelines. Movement on the part of state boards may depend on individual personalities and their interest in taking this on. Brach mentioned that California has implemented labeling reforms. Silberman said that if other states have already adopted new standards, then North Carolina might be willing to reexamine their position.
Brach was very interested in Silberman’s discussion of the role of malpractice insurance carriers in promoting health literacy. She asked
6The USP published recommendations for prescriptions medication labels in May, 2010. The recommendations formed the basis for a draft chapter that was circulated in early 2011 for comment. At the time of the writing of this report, a final version of the chapter has not been released.
Silberman to provide some detail on their engagement and whether or not they are offering any kind of incentives for health literacy training. Silberman said that malpractice carriers were not part of the task force and probably should have been. They were invited to participate when the task force decided that a recommendation in this area should be considered. In addition, NC Medical Mutual agreed to write an article for the state medical journal about their interest in health literacy (Hickson and Jenkins, 2007). Silberman said that she was not sure if the insurer was offering an incentive for health literacy training. The insurer is aware of, and letting its subscribers know about, the research that shows that physicians are more likely to be sued for malpractice if they have poor patient communication skills. NC Medical Mutual has developed a training toolkit that includes a section on the informed consent process in the context of risk management. This toolkit is used in the provider training.
Carla Funk, executive director of the Medical Library Association, commented that health sciences librarians and librarians in general are available as collaborators and partners in health literacy initiatives. She added that librarians have valuable experience in working with and educating health care providers. The Medical Library Association has developed a health literacy tutorial through a contract from the National Library of Medicine. The tutorial and a curriculum are freely available to all health care providers and librarians. Abrams agreed that librarians are crucial for progress to be made on health literacy and mentioned the productive collaboration between Health Literacy Iowa and the health sciences librarian at the University of Iowa.
Roundtable member Benard Dreyer asked the panelists to describe how they were able to engage the parties needed to make progress in health literacy, for example, the health department and the payers. He observed that having stakeholders take responsibility is a key to sustainability. Abrams responded that in Iowa some of the key stakeholders had already become involved in health literacy. She found that establishing personal relationships and sharing local data and stories are key to making connections with decision makers. She mentioned that in Iowa, the director of the Department of Public Health has been very supportive. Progress with the Department of Education has not been as great, probably because of the many competing demands faced by the department. Abrams pointed out that a strong business case, economic analyses, and the opportunities provided by healthcare reform could provide some leverage to promote health literacy.
Silberman added that a challenge faced when working with stakeholders is that when they leave their positions, there is a loss of an educated leader within their organization. North Carolina has had the advantage of having stable leadership within the Medicaid managed-care Program,
Community Care of NC. However, there has been turnover in the position of Assistant Secretary for the Department of Health and Human Services. This meant that a reeducation process had to be undertaken. Silberman mentioned that North Carolina is fortunate in having national experts in health literacy who are able to share the results of their research and engage key stakeholders.
Roundtable member Will Ross pointed out the importance of targeting health literacy interventions to schools, especially students from kindergarten through grade 12. He asked the panelists to discuss barriers to engaging state departments of education in health literacy initiatives. Abrams indicated that progress is being made in Iowa. For example, a core curriculum that includes life skills for the 21st century has been developed, and health literacy is one of the four key focus areas. In addition, the Department of Education supports the New Readers of Iowa program and an early child literacy program called Reach Out and Read. Abrams observed that while these are encouraging steps, a greater level of communication between the education and health sectors would be desirable as there are many more opportunities to explore.
Silberman stated that the North Carolina task force did not include kindergarten through grade 12 education. However, the task force did work with the Department of Public Instruction on health issues. Health literacy is in the core curriculum, but she indicated that one problem is that the core curriculum is only a recommended curriculum. The decision on using it is left to each local education agency. Silberman added that the standardized tests that are given at the end of the year do not include health literacy. This means that the subject is likely not given much coverage in the curriculum. That said, some schools are doing a good job, but on a statewide level, progress is needed. To keep this in context, Silberman mentioned the great challenges in keeping students in school until they graduate. For teachers, this is a priority.
Roundtable member Patrick McGarry asked the panelists if there are any performance measures related to health literacy applied to states, and if there are such measures, how states are performing. Silberman replied that there are no statewide performance measures. However, in North Carolina, periodic reviews are conducted on the status of the NCIOM’s Task Force on Health Literacy recommendations. She mentioned the existence of performance measures related to chronic disease management in the state’s Medicaid program. These health outcomes measures are contingent, in part, on how effectively health care professionals communicate with their patients. Abrams pointed out how important it is to understand the validity of performance measures. For example, one of the Centers for Medicare and Medicaid Services (CMS) core measures for heart failure is whether the provider has discussed the various compo-
nents of discharge planning. A provider may check a box indicating that he or she has provided information, but it is not really clear whether the patient understood the information given. Abrams indicated that this is what should be measured in terms of health literacy.
George Isham, roundtable chair, asked whether health literacy was being measured statewide, and if a measure of population health literacy is informative. Abrams and Silberman both stated that they have not made such a measurement in either Iowa or North Carolina. Silberman discussed the research conducted at the University of North Carolina on the effect of health literacy interventions on health outcomes among people with different levels of health literacy. That research found, for both diabetes and congestive heart failure, that health literacy interventions improved outcomes for everyone, but that improvements were greater for people with low health literacy. Silberman went on to discuss the issue of the universality of low health literacy and how low health literacy can be experienced by almost everyone in given circumstances. She described her experience of taking her mother who was dying of cancer from the hospital to her home. The discharging physician gave her instructions for home care, and she wrote them down. However, when she got home, her notes were indecipherable. This is just another example of the importance for clinicians to always be clear, always communicate well, and to always have materials that are understandable. Silberman pointed out that the AHRQ commercials on health literacy use this universal precaution model to encourage people to ask questions and feel comfortable so they can become informed. Abrams added that changing and improving the health literacy of the entire population is a huge undertaking and likely very difficult to measure. She felt that such measurement will need to be investigated and may represent a long-term goal.
Reggie Cayetano, UCLA Division of Cancer Prevention and Control, asked Silberman how the North Carolina Task Force has addressed the needs of the state’s Asian and Hispanic populations in terms of health literacy. Silberman mentioned that because the Asian population is not sizable in North Carolina, most of the task force’s attention has been directed to the state’s Hispanic population, which is expanding rapidly. She mentioned that between 1990 and 2000, North Carolina had the fastest growing Hispanic population in the United States. Silberman indicated that although some programs are in place, more work is needed. For example, there are bilingual staff within the Medicaid networks and community health centers, but there are no certified interpreters. A center is working with the AHEC program to train interpreters, but an impediment to placing them in clinical environments is lack of reimbursement for interpreter services. The importance of having both trained inter-
preters and people who have cultural competence is recognized, but more resources are needed to facilitate progress in these areas.
Arthur Culbert, Ph.D. Health Literacy Missouri
Health Literacy Missouri (HLM) was founded as an independent 501(c)(3) center in 2009 with support from the Missouri Foundation for Health. The center’s mission is to improve the health status of Missouri residents through health literacy. The center creates health information products that are understandable and widely available with the aim of empowering individuals and promoting positive changes in behaviors. HLM functions to create systematic change in provider-patient encounters, to offer education resources that help providers communicate effectively with patients, and to provide access to plain language health care information.
A six-minute video about HLM demonstrated the need for health literacy interventions.7 According to Culbert, an estimated 1.6 million Missouri residents have trouble reading prescriptions labels, following medical instructions, and filling out medical-related forms. The costs associated with poor health literacy can be counted not only in terms of pain and suffering, he said, but also in financial terms, estimated to total $3.3 to $7.5 billion annually for Missouri residents. Health literacy is viewed as critical to address the state’s poor performance on health indicators. Missouri ranks in the bottom quartile of U.S. states in terms of smoking, obesity, and diabetes prevalence. The state ranks last in terms of state funding for public health. The state has a large rural population, which means that health-related messages have to be targeted to residents of less populated areas. The video illustrated several of the literacy center ’s programs including those targeted to language minorities (e.g., Spanish, Chinese), adult learners, and school groups. In addition to these consumer groups, clinicians have been engaged in educational programs to improve patient-provider communications. Motivating changes in health behavior can best be accomplished through activities like these, implemented at the community and state level, Culbert said.
One of the challenges in Missouri is that large areas of the state are either not served, or are underserved, by broadband Internet coverage. Yet public health communications are key. Consequently, HLM has pri-
oritized implementing interventions within the healthcare system. Integrating health literacy into ongoing related programs such as programs to reduce medical errors has been a fruitful approach. Stand-alone health literacy programs are not nearly as powerful, Culbert said.
Collaboration and the ability to connect with partners are a particular strength of HLM. The program attempts to quickly translate the lessons of research into best practices. HLM has worked effectively with academic partners (e.g., the University of Missouri, St. Louis University, Washington University in St. Louis, Missouri State University) and all of the state’s AHECs. Over its first 3 years of operation, HLM identified the needs of the state’s population and developed a logic model with which to plan intervention strategies. Effective working relationships developed because stakeholders were able to work collaboratively.
With support from the Missouri Foundation for Health, HLM is active in 84 of the state’s 112 counties. The center worked with Dr. Nicole Lurie to develop geographic information system (GIS) mapping software to identify areas in the state with large numbers of people with low health literacy. An estimate was made of the financial costs of low health literacy in Missouri with the help of John Vernon who had just completed a national report on this topic. Another first step for the center was to field test the Living with Diabetes Manual developed by Mike Wolf and Dean Schillinger. The center has also helped distribute a popular online health literacy magazine aimed at high school students. The magazine, called Youmagazine (Youmagazine.net) has been made available in 29 Missouri schools. Finally, the Universal Precautions Toolkit8 developed in North Carolina with support from AHRQ has been central in efforts to engage the community around health literacy.
HLM’s grassroots activities have been supported by 31 demonstration grant programs implemented in 84 Missouri counties. These projects are viewed as incubators of change and are diverse in terms of their scope and audience. They cover programs targeted by age (e.g., youth, the elderly) and by population subgroup (e.g., Bosnians, Chinese, African Americans, Hispanics). HLM’s goal is to identify interventions that work and then replicate them. The programs have been sequenced to start at different times. Some of them are completing their first 2 years, allowing for lessons learned to be applied elsewhere.
The center has worked with the state’s four medical schools (three
8“Universal precautions” refers to taking specific actions that minimize risk for everyone when it is unclear which patients may be affected. For example, health care workers take universal precautions when they minimize the risk of blood-borne disease by using gloves and proper disposal techniques. Health literacy universal precautions are needed because providers don’t always know which patients have limited health literacy (http://www.ahrq.gov/qual/literacy/, accessed February 7, 2011).
allopathic, one osteopathic) to develop three unique programs. This first one, Straight Talk With Your Doc is a simulation where medical students and other health professionals volunteer to play the role of a provider, usually a doctor, and teach their clients how to be empowered to engage successfully with the healthcare system. The experience thus far has been very positive and it is being translated into multiple languages. The second program, The Standardized Patient is targeted to medical students. The third program is a Practice Improvement Module that has been approved by the American Academy of Internal Medicine and will be available for those who are securing or maintaining their licensure.
Rewriting materials using plain language is a major function of HLM. HLM has worked with drug companies, insurance agencies, and hospitals to improve their materials. The center is working on a pricing scheme so clients can be billed.
Rima Rudd from the Harvard School of Public Health serves as the senior advisor to HLM and has helped the center address issues relating to hospital health literacy assessments, facility signage, patient information materials, and patient healthcare system navigation. Barnes-Jewish Hospital, the largest employer in the state, has engaged the center to help redesign its ambulatory care centers. The clinics will be health literacy friendly. This means that visitors will understand the signage, staff will be trained, and patient education materials will be understandable.
Educating the business community on the costs associated with limited health literacy is a very important area, Culbert said, as is the need to engage political stakeholders. Missouri Governor Nixon’s designation of October as health literacy month is an achievement in the political area. Health literacy is not a partisan issue. People are able to disassociate the issue from the debate over healthcare reform and focus on the cost of low health literacy, both in terms of actual dollars as well as in emotional and health terms. The center has been working with the governor and his staff to facilitate the adoption of electronic health records. A consumer engagement committee will be involved with decisions regarding written materials, public service announcements, and other implementation activities.
There is growing interest in health literacy across the entire health care spectrum. Enthusiasm across the state is evident from a stakeholder summit held June 2010 that attracted over 250 people. The creation of a nationwide network of state health literacy centers has been proposed. Several states in the Midwest (Iowa, Minnesota, Missouri, and Wisconsin) began meeting together in 2008. The meetings have been instrumental in sharing best practices and providing mutual support.
The online activities are expanding, Culbert said. In its first year of operation the HLM website logged more than 100,000 visits to the site. Culbert speculated that the main reason for the site’s popularity is that
the site houses a collection of more than 10,000 health literacy resources, including toolkits. The online library also includes almost 200 videos related to health literacy. The center benefits from a full-time digital librarian who researches source materials.
While the center continues to rely on hard-copy communications including newspapers, it has branched out into the world of social media including Twitter and Facebook. The center uses LinkedIn, a professional social networking medium, to get information to physicians. Flickr is used to store pictures from all of the center ’s events, and Vimeo is used to house the video collection. Delicious is a site where individuals can find the most bookmarked organizations websites for a given topic. The center also hosts a blog, with Helen Osborne as the first guest blogger. In October 2010, the center participated in the health literacy Twitter town hall hosted by Cynthia Baur, CDC’s Senior Health Literacy Advisor, and by the Department of Health and Human Services’ healthfinder.gov team. A few weeks later, HLM hosted a Twitter town hall where 92 people joined in the conversation. This venue has allowed the center to expand its reach to new audiences.
Culbert concluded his presentation by reviewing some of HLM’s successes and challenges. One indicator of success is the wide coverage received following the release of 26 HLM press releases. The releases delivered at the local level have generated 280 newspaper stories that have an estimated readership of one million. Print media remains very important, especially in rural areas with poor broadband coverage. A remaining challenge is how best to develop models of community engagement appropriate for the unique needs of rural and urban areas. Evaluations of HLM’s activities will make a contribution to the literature and body of evidence regarding the role of states in advancing health literacy, Culbert concluded.
Terry Davis, Ph.D. Louisiana State University Health Sciences Center Shreveport
Davis began her presentation by acknowledging State Senator Lydia Jackson for her active involvement in Louisiana’s health literacy initiatives and for her assistance in crafting the IOM workshop presentation. She pointed out that involving political leaders at the state level is important because with healthcare reform, states will enroll more people in Medicaid and yet have fewer resources as a result of hiring freezes and budget cuts. There will be difficulties in assisting people as they enroll in Medicaid. In addition, more information and services will have to be computer based, which can be problematic for people with low literacy. According
to a recent IOM report, 96 percent of states have simplified enrollment forms and 82 percent of states offer one-on-one assistance (Somers and Mahadevan, 2010); but despite these efforts, more than 80 percent of uninsured African-American children and 70 percent of uninsured Hispanic children who are eligible for Medicaid or the Children’s Health Insurance Program (CHIP) are not enrolled. Even though enrollment has been simplified, these figures indicate that more work is needed. States play an important role in making healthcare information and services user friendly.
With implementation of health care reform and the Plain Language Act,9 there is a greater need for states to focus on health literacy, Davis said. All states must enroll beneficiaries under age 65 with incomes of up to 133 percent of the federal poverty level. This is going to greatly expand enrollment. In 2007 there were 58 million enrollees. By 2014 one-quarter of U.S. residents will be enrolled in Medicaid. With healthcare reform, Louisiana is expected to enroll 384,000 new Medicaid beneficiaries and the size of the uninsured population is expected to drop by 50 to 75 percent.
Davis reviewed the history of the Louisiana Statewide Health Literacy Initiative that had its beginnings in 2002. As Davis and Senator Jackson began to envision a health literacy initiative they considered the following questions:
- What is possible?
- What first steps should be taken?
- Who should be involved?
- How do you reach community leaders?
- How do you approach legislators, the secretary of health, and the governor?
- How do you inform decision makers about the cost of low health literacy, and how health literacy impacts cost and quality?
- What do you ask of policy makers? What specifically is being asked of them?
- How can health and education groups across the state be engaged?
- How can a statewide health literacy group be organized with sufficient representation, yet remain small enough to achieve consensus and accomplish tasks?
- How can the process and planned programs be financially supported?
9The Plain Language Act of 2010 requires the federal government to write all new publications, forms, and publicly distributed documents in a “clear, concise, well-organized” manner that follows the best practices of plain language writing. See www.plainlanguage.gov (accessed February 7, 2011).
In Louisiana, it was unclear whether the legislature would allocate scarce funds to train health professionals and educators to improve oral and written communication, particularly communication to help people better navigate the system, be healthier, and manage chronic disease.
Louisiana has a unique landscape, distinct culture, and rich heritage. Davis said. Most families have lived in the state for generations and are rooted in their communities. Louisiana is ranked as the unhealthiest state in the nation. There are high rates of uninsured individuals and a low-performing healthcare delivery system. The state has the highest public healthcare cost with the worst outcomes. One-third of children live in poverty. Nearly half of ninth graders do not graduate from high school in 4 years. According to the 1993 National Adult Literacy Survey (NALS), approximately 28 percent of adults in Louisiana ranked in the lowest literacy level. On a positive note, Davis cited Louisiana’s long history of charity health care. In the 1930s, 10 state hospitals were designated to care for the poor. These hospitals were not, however, set up to provide easy access to preventive and primary care.
It is key, Davis said, to identify a health literacy champion in the state legislature. The legislative champion should have an interest in both education and health and have a legislative record in these areas. She also suggested that the champion be able to conceptually link health and literacy and education. In her view, the champion must also be skilled in connecting existing health and education officials. Strong critical thinking and problem solving skills, good communication skills, an ability to collaborate and get things done, and knowledge of who the key “go-to” people are to open doors are also important attributes of a champion.
In Louisiana, Senator Lydia Jackson has championed health literacy initiatives. Since being elected to the House of Representatives in 1999, Senator Jackson has developed a reputation as an effective, hardworking, and innovative legislator. She quickly assesses what is going on, listens more than she talks, and has a knack for figuring out what is possible and what is not possible. Her accomplishments led to her election to the Senate. She is viewed as a leader in the legislature and a champion of healthcare issues. One of the ways Senator Jackson became interested in health is through her attendance at Davis’s grand rounds at the medical school. Other community leaders have been invited to attend grand rounds as well as other presentations at the medical school. Subsequently, Senator Jackson invited Davis to speak at some town hall meetings. One of those meetings had every regional legislator present.
In 2003 the legislature passed a law to establish a health literacy task force. To facilitate passage, Senator Jackson identified key legislators and committees to contact. Davis addressed key decision makers and showed a videotape featuring people struggling with healthcare tasks. The mes-
sage resonated with the legislature. The legislation created an Interagency Task Force on Health Literacy. Although no funding was attached, support was located to employ a part-time administrative assistant. The task force initially included 31 members from 23 health and education organizations across the state. It’s responsibilities were as follows:
- Study the health literacy of Louisiana residents.
- Identify groups at risk for low health literacy.
- Identify barriers to accessing services and communicating with providers.
- Make recommendations to
- improve health literacy,
- promote providers’ use of plain language,
- simplify forms and procedures,
- develop easy to understand health info,
- develop health literacy curricula, and
- examine impact on quality and cost.
The law mandated that the heads of different organizations and agencies be contacted to select a representative. For example, the U.S. Department of Agriculture (USDA) was invited to participate because it has an interest in health literacy, especially as it relates to obesity. Davis described the USDA as a wonderful partner, in part because it has cooperative extensions in every U.S. county. The task force met every 6 weeks in Baton Rouge. Davis served with co-chairman Sheila Chauvin, head of medical education and research at Louisiana State University Health Sciences Center in New Orleans. The face-to-face meetings fostered trust, collaboration, and a sense of confidence that something could be accomplished statewide to improve health and health communication.
A needs assessment was the task force’s first task. A literature review and a survey of health and education organizations and state agencies were conducted. Relevant materials were posted to a website. A medical librarian on the task force was instrumental in identifying relevant resources. There appeared to be very little, or no, interagency coordination. And in 2004 when this work was initiated, there was little awareness of health literacy. When health literacy activities were identified, they usually represented the work of impassioned advocates working within silos. The needs assessment, completed in 2005, identified several problems:
- Medicaid applicants struggled with instructions that were too long, confusing, and difficult to complete.
- Individuals calling to renew enrollment in CHIP had difficulties. One in three persons calling for assistance talked to someone who
could not answer their questions. Many callers were put on hold for over 10 minutes or got repeated busy signals.
- Many citizens lacked the knowledge and skill to adequately manage chronic disease, or to use preventive services.
- Louisiana schools of medicine, nursing, pharmacy, and public health did not have a health literacy curriculum.
- Health education is required in schools grades kindergarten to grade 9, but in 2005, the content did not adequately provide students with basic health knowledge and skills. The Department of Education was very interested in revamping the curricula.
- There was inadequate health education content in adult literacy classes.
One of the early health literacy accomplishments in Louisiana was the development of a proposal to provide “train the trainer” workshops based on the American Medical Association model. The plan was to use online modules to train 7,000 healthcare professional staff and educators to communicate more effectively. The proposal also included the development of user-friendly materials and forms. Participation was to be tracked, the training content reviewed, and the outcome of the training evaluated. As the proposal was being finalized however, hurricanes Katrina and Rita hit. Commerce in New Orleans was virtually eliminated and about half of sales tax revenue was lost. There were only two hospitals open 6 months after the hurricanes. Doctors’ offices and most hospitals had lost all their medical records. The Department of Veterans Affairs had fortunately transitioned to an electronic medical record system. Louisiana is still recovering, and public education in New Orleans, which was one of the worst in the country, is now doing better, in part, because of the Teach for America program.
Davis mentioned that the IOM workshop in Los Angeles has served to reunite her with Senator Jackson to strategize on statewide initiatives on health literacy. With a commitment to integrate health literacy within the existing delivery system, there is hope that progress can be made without a large financial investment. Advocates of health literacy at the state level should, Davis concluded, find a legislative champion; connect with key health and education officials; develop a plan to make state health information and services easier to understand and act upon; integrate the plan into the existing delivery system; partner to make the case that improving health literacy is good public policy, reduces cost, and improves quality; and propose a realistic funding level for a legislature with a shrinking budget.
Roundtable member Winston Wong asked Culbert how health literacy might ultimately improve population outcomes such as obesity and how the Missouri initiative has addressed obesity, both in the short- and long-term. Culbert responded by pointing out the importance of health literacy as a social determinant of health. In Missouri, the aim is to try to create information that helps people understand why they should be making changes to address their particular problem in their particular situation. The strategy in Missouri is not to mandate behavior change, but rather to motivate individuals within communities. Five- and 10-year goals are being established.
Health Literacy Missouri is piloting a Living with Diabetes guide and plans to focus attention on chronic diseases. Providing programs in schools and targeting new mothers and children may be key to taking a prevention approach that is directed to the next generation. Davis added that incentives may be key to motivating both providers and consumers to participate in new initiatives and change their behaviors. Wong suggested that health literacy is often considered in the context of a specific clinical encounter. He noted how interesting it is to think of obesity as an epidemic or disease state that can be influenced by health literacy efforts statewide. Davis mentioned in response that the USDA is sponsoring a $25 million program to address obesity and health literacy.
Gloria Mayer, Institute for Healthcare Advancement (IHA), asked Culbert whether the state health literacy initiative has addressed the needs of nursing students. She pointed out the important role of nurses in hospitals and outpatient clinics in providing education and counseling to patients. In her experience, relatively few nurses attend IHA health literacy conferences. Culbert responded that nurses in Missouri have been quick to recognize the importance of health literacy and have been enthusiastic supporters of the program. Nurse educators have been incorporating health literacy throughout their curriculum and creating learning opportunities for trainees.
Davis added that according to her focus group research, nurses consider communication a part of their mission. Doctors often view diagnosis and the development of a treatment plan as their main mission. In some ways then, nurses could be considered an easier group to partner with. Many times they are the ones that are most receptive to health literacy messages and to act on them.
Leonard and Cecelia Doak of Patient Learning Associates, Inc., commended the presenters for using pictures and video to effectively communicate the health literacy story to legislators and to the general public. Pictures, and the stories that accompany them, can be more powerful than words. Davis agreed and added that pictures of real people
have an emotional impact that elicits responses. For a new guide being developed on heart disease, images of patients and their families in their homes and places of business are being used. It is important to impart the message that health affects the entire family.
Roundtable member Will Ross asked Culbert and Davis if the regional initiatives they had undertaken were effective. He pointed out that states have become great incubators for developing innovative and effective programs. Ross asked if there was a strategic plan for their expansion. He mentioned the importance of identifying leaders in other states that had not quite matured in the development of statewide health literacy initiatives.
Culbert described the benefits of cross-state collaboration and how his program has been enriched by the experiences of others in the Midwest. He identified the important role of providing technical assistance to interested states. As an example, he mentioned a contact he made through the National Institute For Literacy (NIFL) email list. An individual from Pennsylvania was interested in hosting a literacy summit and was looking for guidance. Culbert was able to provide assistance and Pennsylvania subsequently held a very successful summit bringing together interested stakeholders. Health Literacy Missouri is seeking funding to improve its ability to offer technical assistance. HLM staff will continue to attend national meetings and while there provide assistance to interested state representatives. Culbert indicated that having someone at the state level to organize and coordinate ongoing activities would be very helpful.
Davis discussed three factors that are motivating organizations to address health literacy. First, hospitals and other health care facilities are making efforts to adhere to the Joint Commission’s health literacy communication (The Joint Commission, 2007, 2008). Second, the CDC is supporting public health departments with training opportunities and guidance on health marketed to assist them as they integrate health literacy into their programming (http://www.cdc.gov/healthmarketing/healthliteracy/, accessed February 9, 2011). Finally, AHRQ and the National Institutes of Health (NIH) are driving research in this area (http://www.ahrq.gov/browse/hlitix.htm, accessed February 9, 2011; http://www.nih.gov/icd/od/ocpl/resources/healthliteracyresearch.htm, accessed February 9, 2011). Davis added that some state-level activities emerge from the efforts of a single impassioned leader.
Roundtable chairperson Isham asked the panel how the IOM’s Roundtable on Health Literacy might foster progress at the state level. Culbert indicated that the IOM’s powerful voice is very helpful in advocating for health literacy at the national level. However, in his opinion, the biggest successes around health care have come at the state and community level. Davis added that the IOM’s 2004 report was instrumental in calling atten-
tion to health literacy (IOM, 2004). At this point, the roundtable might focus on the implications of health reform. For example, one-fourth of the U.S. population will be enrolled in Medicaid. The materials for enrollment and other information must be improved so they are easier to access and understand. Another area in need of attention is pharmaceutical use, improving the public’s understanding of how to take prescription and over-the-counter medicines safely.
Julie Kwan, National Network of Libraries of Medicine, provided information on the National Library of Medicine’s release of documentation on how to connect an electronic health record through a patient portal to MedlinePlus (http://www.nlm.nih.gov/medlineplus/, accessed February 9, 2011). The service is available in English and Spanish at no cost. Patients will be able to search for information on medical conditions and medications. MedlinePlus includes pictures and videos that may be particularly useful for those with low literacy. Culbert discussed the importance of libraries in the health literacy movement. Health Literacy Missouri has worked with librarians to create a list of suggested health literacy holdings. As local libraries in Missouri purchase their books, there will be a whole set of recommended health literacy books that will go on the shelves.
Kelli Ham, National Network of Libraries of Medicine, described her involvement with the California State Library in the publication of a toolkit for public librarians. The toolkit helps local librarians provide quality health information services. It was developed for California, but it has been widely disseminated across the country. Culbert added that the United Kingdom has been running a health literacy program for the past decade from libraries. He suggested that there is much to be learned from this approach. Libraries should be one of the first venues to think about in advancing health literacy.
Shanpin Fanchiang, an educator at Rancho Los Amigos National Rehabilitation Center, asked the panel how to approach legislators at both the state and federal level to ensure that health literacy becomes a part of all healthcare professionals’ licensing and reaccreditation. She emphasized how important it is for healthcare workers to have a basic understanding of health literacy and how to incorporate it into their practice. Davis suggested identifying state legislators with a health and education track record and inviting them to a facility so they can experience the consequences of poor communication and low literacy. Begin to develop a relationship with legislative representatives so they will begin to see how they can help address issues through state policy. Davis also suggested working with the professional organizations representing physicians, nurses, pharmacists, and others to address accreditation issues. She discussed her unsuccessful attempt to interest the National Boards of
Medicine in adding health literacy topics to exams. In terms of maximizing education and training opportunities, Davis recommended embedding health literacy into regular curriculum content rather than presenting it as a stand-alone topic. Isham added that national professional organizations often set general policy, but that licensure and accreditation for most professionals is at the state level. Therefore, a two-level strategy could be considered. Culbert referred to the national discussion underway about core health professional competencies and educational reform. The Federation of Associations of Schools of the Health Professions (FASHP) is addressing this issue with a focus on cross-disciplinary education, he said.