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State Activities in Oral Health Literacy

ORAL HEALTH LITERACY ACTIVITIES IN STATE ORAL HEALTH PROGRAMS

Gregory B. McClure, D.M.D., M.P.H. Delaware Division of Public Health

McClure provided a perspective on state-based oral health literacy programs. His state of Delaware has developed an oral health campaign, Healthy Smile, Healthy You. McClure said that most dental disease is preventable, yet dental caries is the most common chronic disease among children. He said that oral health literacy is needed to close the gap in oral health status, especially among lower socioeconomic groups, minorities, and ethnic populations.

McClure focused his remarks on oral health literacy initiatives that are developed, funded, or managed by states. There is no single model for state oral health programs and, according to McClure, they vary by state. One constant is that nearly all states (about 95 percent) have a full-time dental director. Staffing dental health programs has been a challenge for some states, however. In terms of funding, most state programs receive federal support, for example, from Maternal and Child Health (MCH) grants, Centers for Disease Control and Prevention (CDC) prevention block grants, and Health Resources and Services Administration (HRSA) grants. These federal funds are essential in Delaware, because there is no state line item budget for oral health.

State dental health programs can be located within the Department of



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6 State Activities in Oral Health Literacy ORAL HEALTH LITERACY ACTIVITIES IN STATE ORAL HEALTH PROGRAMS Gregory B. McClure, D.M.D., M.P.H. Delaware Division of Public Health McClure provided a perspective on state-based oral health literacy programs. His state of Delaware has developed an oral health campaign, Healthy Smile, Healthy You. McClure said that most dental disease is preventable, yet dental caries is the most common chronic disease among children. He said that oral health literacy is needed to close the gap in oral health status, especially among lower socioeconomic groups, minorities, and ethnic populations. McClure focused his remarks on oral health literacy initiatives that are developed, funded, or managed by states. There is no single model for state oral health programs and, according to McClure, they vary by state. One constant is that nearly all states (about 95 percent) have a full-time dental director. Staffing dental health programs has been a challenge for some states, however. In terms of funding, most state programs receive federal support, for example, from Maternal and Child Health (MCH) grants, Centers for Disease Control and Prevention (CDC) prevention block grants, and Health Resources and Services Administration (HRSA) grants. These federal funds are essential in Delaware, because there is no state line item budget for oral health. State dental health programs can be located within the Department of 65

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66 ORAL HEALTH LITERACY Health or in a Department or Division of Public Health. The location of the program makes a tremendous difference in terms of communication with the state health officer, McClure said. The responsibilities and priorities of state oral health programs var- ies according to resources and the partnerships that are made. McClure noted that Maryland has a rich set of dental resources to help move things forward. State oral health programs often rely on nongovernmental part- ners, for example, professional associations such as the American Dental Association, the American Dental Hygienists Association (ADHA), uni- versities, dental schools, and private foundations. McClure discussed the responsibilities of state oral health programs which generally fall into three categories: assessment, assurance, and policy. Oral health literacy is an integral part of each of these functions, particularly assessment, because it is in this area that dental disease is tracked and stakeholders are notified of the problems, the issues, and what to do about them, he said. State oral health programs are strategi- cally positioned to carry out oral health literacy initiatives because states are often responsible for bringing people to the table to discuss problems as they arise. McClure discussed the relevance of two questions to the work of the state dental health program: Does it work, and what does it cost? He pointed out that we live in a world of evidence-based dentistry and states, in their role relating to accountability, must adhere to the evidence on cost-effectiveness. State oral health programs are accountable to the governor, to the legislature, and to the taxpayers. When advocating for a program, the state dental health director often has to marshal the evidence that the program works. McClure highlighted the importance of developing partnerships. The State Office of Oral Health is ultimately responsible for decisions, but these decisions cannot be made in an isolated fashion. They must be made in conjunction with partners and all stakeholders. Decision making also relies on technical information, reviews of evidence, and examinations of outcomes. State offices of oral health face many challenges and limitations, said McClure. In addition to funding and staffing, competing priorities are a major challenge. In addition, the bureaucracy associated with state gov- ernment can sometimes take time and effort away from the main focus of the office. Ninety-two percent of states provide oral health education and pro- motion according to a recent review conducted by the Association of State and Territorial Dental Directors. McClure added that states have been providing health promotion interventions to consumers and other stake- holders for years and they see it as one of their core functions.

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STATE ACTIVITIES IN ORAL HEALTH LITERACY 67 Oral health literacy programs may be either stand-alone or integrated with other programs. McClure discussed state-based oral health programs in Arizona, Delaware, Maryland, and Vermont. Vermont developed a very successful program in 1997, the Tooth Tutor Dental Access Program. Tooth tutors, usually dental hygienists, have provided oral health education to elementary school children, children enrolled in Head Start, school staff, and parents. The program aims to get children into a dental home. The program has been supported through several sources, including grants from the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC) and through state Medicaid funds. The program has been very successful. McClure reported that 74 percent of the targeted children, that is, children without dental homes, were placed in dental homes in the 2008-2009 school year, the most recent year for which there are data. Arizona’s Office of Oral Health developed a media awareness cam- paign to prevent childhood caries in 2005 with support from the Robert Wood Johnson Foundation and HRSA. Social marketing research and techniques were used to develop radio spots, oral health messages, bro- chures, and billboards. McClure said that Delaware started an oral health literacy program when a state oral health plan was developed. A campaign began in 2008 and 2009 with limited state and HRSA grant support. The state collabo- rated with the Delaware Oral Health Coalition. The program depended heavily on volunteers. A marketing consultant helped guide the develop- ment of new messages and promotional materials and also managed the events. The target populations for this intervention were maternal and child health (MCH) families and early child care programs. The cam- paign involved public event promotions at Walmart stores, and other places young families congregate. The entire program was conducted with modest support, under $50,000. One of the products developed was an informative brochure that included a questionnaire. McClure said that these various activities evolved into the Delaware First Smile Initiative. Delaware piloted its Tooth Troop Campaign in 2010 and 2011, for- mally launching the program in 2012. The goal of the program is to increase awareness and knowledge about oral health and disease pre- vention. It is a train the trainer type program where dental professionals train community and agency leaders to conduct pre- and post-surveys of targeted families. These surveys are intended to raise awareness, increase dental visits, and promote healthy behaviors and home practices. The coalition has become an independent organization that the state contracts with to carry out the activities of the Tooth Troop. The Delaware state oral health office is also providing oral health

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68 ORAL HEALTH LITERACY training for physicians and nurses. McClure described the recent comple- tion of a strategic communications roadmap with the following goals: • Raise the profile of oral health issues. • Decrease the prevalence of dental disease, especially infant and childhood disease. • Encourage an added importance of oral health among health care providers and key influencers. • Increase Medicaid dental utilization (from 37 percent). • Support research. McClure stated that one focus when implementing the strategic plan will be on grass roots community outreach and evaluation. He described Maryland’s Healthy Teeth, Healthy Kids social marketing campaign that is targeting pregnant women and children under age 6 and said that many in the dental health community have great expectations of this program and look forward to learning from it. Maryland’s $1.2 million CDC grant supported a multimedia market- ing campaign until July 2012. The campaign established a hotline and extensive outreach through their partners. McClure stated that much research and preparation went into the development of the campaign which has six key strategies: 1. Define and promote a call to action. 2. Create a favorable environment and a sense of urgency. 3. Reach mothers during critical milestones. 4. Develop an oral health kit. 5. Evaluate campaign effectiveness. 6. Provide a foundation for future work. A comprehensive plan to evaluate the program includes a pre- and post-campaign survey; the conduct of focus groups, an analysis of Med- icaid utilization, and monitoring website visits. In McClure’s opinion, this campaign serves as a model for other states. In terms of future directions for state oral health programs, McClure said that national support is needed. In particular, research is needed to identify interventions that work. The specific oral health literacy methods and messages need to be evidence-based. McClure added that funding is needed for state oral health programs. He said that state oral health programs are in a key position to coordinate oral health literacy efforts and should be included in state-relevant oral health literacy initiatives. He concluded his remarks with the observation that the state oral health

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STATE ACTIVITIES IN ORAL HEALTH LITERACY 69 infrastructure needs to be developed to carry out oral health literacy activities. ACTIVITIES OF THE CALIFORNIA DENTAL ASSOCIATION Lindsey Robinson, D.D.S. California Dental Association Robinson described herself as a pediatric dentist in private practice for 16 years in a rural California community that does not have fluori- dated water. She provides care to children who are insured by Medicaid and the Children’s Health Insurance Plan (CHIP). There are two federally qualified health centers (FQHCs) in her area that have dental programs and also serve these populations of at-risk children. Robinson recounted how unprepared she was for the amount of disease in her community and was staggered and overwhelmed by it. She has discovered a passion to address this problem and has realized that the root cause of the disease is primarily poverty. Robinson said that during her odyssey over the last 16 years from private practice into organized dentistry, she has learned a great deal about public health issues. Robinson described the mission statements of the California Den- tal Association (CDA) and the California Dental Association Founda- tion. Both CDA and the foundation, which is its philanthropic arm, have engaged in activities related to the public’s oral health. The CDA strives to address the needs of its members and part of the value of membership is the organization’s ability to promote oral health to the public, in addition to the members’ practices. In Robinson’s view, the two goals are mutu- ally beneficial, highly compatible, and essential to a caring, professional organization. Robinson provided examples of how the CDA and its foundation have implemented programs and advocated for the public’s oral health. The CDA has participated in the AD Council’s dental health campaign. This campaign was the brain child of the president of the Dental Trade Alliance, Gary Price. Price created a partnership with the AD Council called the Healthy Mouths, Healthy Lives coalition. This is a 3-year oral health literacy campaign geared toward early childhood caries. It teaches parents and the public how to care best for children’s teeth. There are more than 20 organizations involved. The CDA felt that it was imperative to engage in this partnership and provided significant financial support to conduct a marketing campaign that would reach areas of California where large populations of Hispanics reside. This population has a huge problem with early childhood caries. The campaign will be available in

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70 ORAL HEALTH LITERACY English, Spanish, Vietnamese, and other languages in frequent use in California, where there is a high concentration of early childhood caries. Robinson next described her experience as the guest editor of the April 2012 edition of the CDA journal that focused exclusively on oral health literacy. Some of the feature articles include the following: • “National Plan to Improve Health Literacy in Dentistry” • “Oral Health Literacy: At the Intersection of Schools and Public Health” • “Creating a Health Literacy-Based Practice” • “Maryland Dentists’ Knowledge of Oral Cancer Prevention and Early Detection” • “Health Literacy and California’s Clarion Call” • “Some Thoughts on Improving Access to Oral Health” • “Care for Vulnerable Populations: Community Health Workers” Robinson also discussed the CDA’s access proposal and recommen- dations for improving access to dental care in California. This project was approved by the CDA House of Delegates in 2008 through a resolu- tion submitted by the Alameda County Dental Society and written by a public health dentist, Jared Fine, dental director in Alameda County and board member of the Dental Society. The resolution directed CDA to conduct in-depth research on the barriers to accessing dental care for underserved populations in California. To complete this work, CDA formed two groups of volunteer members, commissioned seven separate studies, and engaged more than 20 subject experts. The Access Proposal serves as a framework of more than 20 strategies for improving access to oral health care which will guide CDA’s work in the future. Recommendations to reduce access disparities in California were out- lined according to three phases: 1. Establish State Oral Health Leadership and Optimize Existing Resources. 2. Focus on Prevention and Early Intervention for Children. 3. Innovate the Dental Delivery System to Expand Capacity. Robinson pointed out that the need for the first phase stems from California’s lack of a state public health infrastructure for oral health. She stated that California lacks leadership because the state has no dental director or office of oral health. As a result of California’s fiscal crisis, Robinson said that funding for state oral health programs has been elimi- nated. For example, in 2009, adult dental benefits in Medicaid and the

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STATE ACTIVITIES IN ORAL HEALTH LITERACY 71 school-based sealant and prevention program lost funding. Many policy makers are not aware of the lack of infrastructure for dental health in California. Robinson stated that a dental health report card would show a very low grade for California. She said that such a low report card score could possibly help with advocacy and motivate change. Robinson described the major objectives of phase 1 of CDA’s access proposal are to 1. build state oral health infrastructure. 2. expand capacity within dental public health. 3. expand FQHC dental services. 4. support coordinated volunteer-based provision of care. 5. promote fluoridation. 6. expand capacity to provide children’s care, especially to young children. 7. align the CDA Foundation with the proposal’s goals. 8. continue workforce exploration. The first phase has a major focus on building the state’s oral health infrastructure. Robinson mentioned that an application cannot be submit- ted for a CDC infrastructure grant because there is no state oral health office to submit the application. She finds it remarkable that a state of 36 million residents, including large populations at risk, cannot apply for funding that is readily available. Overcoming this situation is a key prior- ity according to Robinson. CDA is engaged in legislative advocacy related to the access report. A bill (SB694) is moving its way through the state legislature. The bill has two components. First, the bill would reestablish the state dental director position and a state office of oral health with sufficient staff. The other component calls for an academically rigorous workforce study within specific parameters approved by the CDA House of Delegates. Robinson is optimistic that the bill will pass. If the bill does pass and an office of oral health is established, an application could be made to CDC or HRSA to sustain the office and support oral health programs for California. Robinson next discussed activities of the CDA Foundation. The 12345 first smiles program was initially supported by the California First Five Commission with funding derived from a tax on tobacco products. Edu- cational materials were developed for dental providers, medical provid- ers, and community-based organizations, such as the staff in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) and Head Start programs. The materials focused on issues related to

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72 ORAL HEALTH LITERACY anticipatory guidance, the necessity of early intervention, and primary prevention. The CDA foundation also has a guideline initiative on perinatal oral health care. An expert panel was assembled to review the latest evidence, and develop a consensus statement and guidelines for the oral health care of pregnant women and their infants. These guidelines have been promoted and widely distributed. Robinson stressed the importance of reaching pregnant women through the obstetrics/gynecology commu- nity, pediatricians, primary care providers, medical and dental providers, and community-based programs that interact with pregnant women. The CDA has two journal issues related to this guideline initiative (June and September 2010). The guidelines can be downloaded from the foundation website (www.cdafoundation.org). The CDA foundation also developed a patient education tool called Cavity Keep Away that is geared to low-literate women. It is available in both English and Spanish. The messages were selected through focus groups conducted in both English and Spanish. A simple poster and brochure can be downloaded from the foundation’s website (www.cda foundation.org). The final program Robinson described is a planned demonstration project that is not yet funded. The target audience for the project is preg- nant teens who have comprehensive Medicaid benefits until the age 21. The project would involve case managers connecting them with dental providers or FQHCs, to receive oral/dental health education and services while they have Medicaid coverage. The program is planned for Alameda County. Robinson concluded her presentation by providing the web- site addresses needed to access resources from both the CDA and the foundation. • Access Proposal—http://www.cda.org/library/pdfs/access_ proposal.pdf • Guidelines—www.cdafoundation.org/guidelines • Journal issues: o June 2010: http://www.cda.org/library/cda_member/pubs/ journal/journal0610.pdf o September 2010: http://www.cda.org/library/cda_member/ pubs/journal/journal_0910.pdf o  April 2012: http://www.cda.org/library/cda_member/pubs/ journal/journal_0412.pdf • Patient Education—www.cdafoundation.org/cavitykeepaway

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STATE ACTIVITIES IN ORAL HEALTH LITERACY 73 STATE ACTIVITIES: NORTH CAROLINA Kimon Divaris, D.D.S., Ph.D. University of North Carolina Divaris described two major oral health literacy projects taking place in North Carolina: the Carolina Oral Health Literacy (COHL) project that targets child-caregiver dyads enrolled in WIC and the Zero-Out Early Childhood Decay (ZOE) project that takes place in Early Head Start loca- tions in North Carolina. Divaris said that there is a significant concentration of oral disease burden among families of low socioeconomic status. In addition, there are very strong behavioral risk components, including oral health behaviors, dental attendance, oral hygiene, diet, and others. The determinants of oral/dental disease are varied and complex. From a person-level perspec- tive, dental caries is primarily caused by the interaction of oral microor- ganisms, dietary habits, and oral hygiene on tooth structure, over time. On a population level, however, the incidence of caries is driven by more distal factors such as education and income. These population determi- nants may have a bigger impact on disease levels on the population level than the biologic or proximal factors, he said. From a dental public health standpoint, interventions with a wide reach are desirable because they have the potential for great impact. Ide- ally, Divaris said, programs should reach those who are most in need, the high-risk populations. It is also desirable to design and carry out inter- ventions that have a long-lasting, rather than a transient effect, and that are affordable. In Divaris’ opinion, estimations of cost-effectiveness are problematic to make because it is hard to quantify the actual cost of den- tal disease which means taking into account factors such as pain, missed school days, parents’ lost time and income when taking children in for dental care, and more. Divaris highlighted the importance of effectively targeting dental health interventions. Divaris discussed three models for oral health literacy that have been published (Lee et al., 2011; Macek et al., 2010; NIDCR JDHD, 2005). Tradi- tionally, dental providers give information to their patients, for example, providing guidance on brushing and flossing. The literature on health literacy demonstrates that information alone does not lead to behavior change. For example, in analyses based on data from the COHL project, University of North Carolina (UNC) at Chapel Hill investigators found self-efficacy to be an important determinant of oral health outcomes (Lee et al., 2012). Divaris highlighted the importance of the cultural environ- ment and community in the broader context. The COHL project is a prospective cohort study that began in 2008 and enrolled 1,405 children-caregiver dyads who were WIC clients in

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74 ORAL HEALTH LITERACY seven North Carolina counties. The purpose of the study was to examine oral health literacy in conjunction with health behaviors and health out- comes among caregivers, infants, and children. Children were followed prospectively to monitor oral health outcomes. African American and American Indian subjects were oversampled so that 40 percent of the cohort was composed of African Americans, and 20 percent was American Indian. The enrolled children were healthy at baseline. Information on how children received their dental care and the cost of their care was obtained through Medicaid claims, eligibility, and enrollment data. Clinical exams were conducted on a subset of children to validate self-reported oral health measures. The measures ascertained as part of the study included • socio-demographic characteristics, • oral health knowledge questions, • perceived oral and general health status (self and child), • perceived treatment needs and services utilization, • oral health-related quality of life (OHIP-14 and ECOHIS), • dental neglect (DNS), and • general self-efficacy (GSEF). Health literacy was measured using a word-recognition-based test, the Rapid Estimate of Adult Literacy in Dentistry (REALD-30), and a numeracy-based test (Newest Vital Signs). The REALD-30 test has been validated in English. One of the eligibility criteria for the study was that English had to be the primary spoken language at home. The REALD-30 instrument has been adapted in Spanish and the validation is under review. Divaris compared some of the results of the study with findings from the literature. He described how the bell-shaped distribution of oral lit- eracy in the COHL cohort is shifted to the left (indicating a lower level of health literacy) relative to the distribution reported from private and community dental and medical clinic-based studies. The advantage of a non-clinic-based study sample is that it is more representative of the population at large. A clear association between higher levels of education and health literacy has been found in the study. An independent association with race, after controlling for education and other socioeconomic factors, was found in the study with whites having significantly higher oral health literacy scores than either African Americans or American Indians. Divaris reported that there were also significant associations found between general self-efficacy and both oral health literacy and dental neglect. Divaris acknowledged that education, socioeconomic status, and

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STATE ACTIVITIES IN ORAL HEALTH LITERACY 75 other factors influence oral health literacy. He also stated that the relation- ship between oral health literacy and oral health status is likely mediated by knowledge, behaviors, dental attendance, and other factors. Divaris discussed the findings related to the effects of caregiver oral health literacy on oral health outcomes among their children. Lower caregiver literacy was associated with deleterious oral health behaviors, including nighttime bottle use and no daily brushing/cleaning (Vann et al., 2010). In another study, lower caregiver health literacy was correlated with children’s oral health quality of life (Divaris et al., 2011). The asso- ciation was more pronounced among the highly literate group. Divaris explained that it may be the case that low-literacy caregivers do not perceive, understand, or report as many complaints with regard to their children’s oral health as compared to high-literacy parents, or they simply do not recognize early signs and symptoms of childhood dental disease. Divaris briefly commented on the concept of the pediatric oral dental home. He said that the American Academy of Pediatric Dentistry has a guideline recommending that parents establish a dental home as soon as possible after birth and before the age of one. Divaris reported that compliance with this guideline recommendation is very low. In his view, there are opportunities to improve the status of the dental home through oral health education and community outreach. Divaris discussed some of the work under way in North Carolina. The work is being conducted in response to several questions: 1. Are caregivers’ health literacy levels associated with interruptions in their children’s Medicaid enrollment? This may depend on the type of enrollment disruption (gap). 2. Do caregivers’ oral health literacy levels affect their children’s entry and navigation in the dental care system? 3. Do caregivers’ oral health literacy levels affect their children’s den- tal utilization? 4. Do caregivers’ oral health literacy levels affect the cost of their children’s dental care (preventive, restorative, emergency, or hospital-based)? 5. How stable are (oral) health literacy measurements? In response to question 2, Divaris reported preliminary evidence indicating that parents whose children entered the dental health system in desirable ways (e.g., with a comprehensive oral exam) as compared to parents whose children entered the system in undesirable ways (e.g, with an emergency-based dental visit) had slightly higher oral health literacy. Divaris reported that analyses will be conducted to see whether low parental health literacy may be responsible for higher dental care costs.

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76 ORAL HEALTH LITERACY In terms of future directions, Divaris outlined several productive research opportunities: • Refinement of the terms “low literacy” and “at risk” (without a clear definition, it is difficult to made valid comparisons) • Feasibility of oral health literacy rapid assessment in the clinic (e.g., two-stage REALD; short forms; computerized modules) • Tailoring of messages to appropriate literacy levels in the dental office and in the community • Determining appropriate message delivery vehicles and strategic target populations (e.g., community-based interventions, partner- ships with family medicine, pediatrics) • Determining whether (functional) oral health literacy is modifiable and what approaches may work best (e.g., information provision/ reinforcement, motivational interviewing, experiential learning) DISCUSSION Brach began the discussion by asking the panel to address the issue of shortages of Medicaid dental providers. She observed that the dental profession has opposed allowing pediatricians, family physicians, and other health professionals to assume dental roles. She observed that even if oral health literacy were successful in getting Medicaid beneficiaries access to care, there may be few providers willing to serve this population. She asked the panel what should be done to make sure that services are available to vulnerable populations who receive dental services through Medicaid. Robinson replied that although she was one of the few Medicaid providers in her area for years, there are now two FQHCs that provide the majority of the care for children covered under the Medicaid program in her area. She said that, from her perspective, the ADA is supportive of having pediatricians and other physicians provide basic preventive den- tal services such as applying a fluoride varnish. She added that there are pockets of concern among organized dentistry and private practitioners who fear that the incursion of medical practice into dentistry could go too far. Robinson noted that there are opportunities for pediatricians to provide early interventions before children seek dental care. Divaris observed that in the Carolina Oral Health Literacy (COHL) study, youngsters under the age of 5 had more claims filed by physicians than dentists for certain preventive dental services. Pediatricians are now screening and referring patients who need dental care. He viewed this as an efficient approach insofar as a comprehensive set of preventive services are provided in one visit.

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STATE ACTIVITIES IN ORAL HEALTH LITERACY 77 Pisano asked panel members representing states if there is a formal mechanism to share information, tools, and materials. She indicated that formal mechanisms for sharing reduce the risk of reinventing the wheel. In response, McClure stated that the Association of State and Territorial Dental Directors has good programs to facilitate sharing and he described th ebest practices reports that review and grade programs. In addition, guidelines for state programs have been developed. As with any profes- sional organization, McClure said, the word-of-mouth transfer of infor- mation is of great value. McClure stated that there is good communication and sharing across states, which hopefully can be improved even further. Wong asked the panel if there are plans to incorporate health literacy into the dental school curriculum. Divaris replied that it is certainly time to incorporate oral health literacy into the curriculum. He stated that there was a key paper in the Journal of Dental Education in 2010 that made this recommendation. This and the focus of the IOM could be the catalyst for change. Divaris added that the Department of Health and Human Services has developed national standards for culturally and linguisti- cally appropriate services. He stated that these standards have not been discussed or addressed within dentistry. Divaris suggested that this topic would be a very good start to a more indepth treatment of health literacy.

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