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5 Oral Health Literacy Programs COMMUNITY PERSPECTIVE ON THE IMPORTANCE OF ORAL HEALTH LITERACY Scott Wolpin, D.M.D. Choptank Community Health Center Wolpin practices dentistry at the Choptank Community Health Cen- ter, a federally qualified health center located in a medically underserved area on the rural Eastern shore of Maryland. The health center includes eight doctors’ offices, three of them with dental offices. Each of the offices is about 30 miles away from the others. The center, with a staff of 140, provides primary care services in offices, schools, migrant camps, and a hospital. In 2011, the center had 85,000 visits and 15,000 of these visits were dental visits. The clinic serves a low-income group of dental patients, many of whom are watermen or employees of the many poultry farms in the area. Many young children present to this clinic with dental or oral disease. In this community and elsewhere, disparities in oral health occur by socioeconomic status and race and ethnicity. Many of the children living in the area are state-insured and do not have a dental home. The clinic is participating in an environmental scan to better understand why effective preventive practices are not succeeding in the community. A recent New York Times article described the use of general anesthe- sia to treat extensive dental disease in preschoolers.1 In Wolpin’s view, 1  “Preschools in surgery for a mouthful of cavities,” New York Times, March 6, 2012. 33

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34 ORAL HEALTH LITERACY the rise in the number of children in need of such treatment is evidence of poor oral health literacy. Children with complex and extensive dental disease can often be treated in a clinic setting; however, if the disease is located in multiple quadrants of the mouth, treatment can be lengthy and challenging. Children are often in pain and they are scared. Children with severe behavioral problems usually need to be hospitalized and sedated, which is an approach as a last resort. In most cases, the need for hospital- ization can be avoided with the use of prevention and early intervention strategies. In the health center’s school-based oral prevention program, dental hygienists work in the 30 public schools in the 9-county area, providing preventive services and oral health education. The center’s philosophy is to bring services to the patients, because patients often have a diffi- cult time accessing care at the center. When children are identified with untreated dental disease and they do not have an established dental home, they are referred to the closest center dental office. Children with extensive needs or children with special health needs may have to seek care at the local hospital. The center’s patients represent 20 percent of the population, but have 80 percent of the community’s dental disease. The disease is often advanced and requires complex treatment. The patients have difficulty navigating the local health care system and case management services are used to facilitate appropriate care. Many of the patients have rela- tively low literacy skills and difficulty understanding how to enroll in or use Medicaid. For example, many of the pregnant women seen at the center do not take advantage of their Medicaid insurance. Some patients are not able to articulate their signs and symptoms of disease. Other problems arise because patients do not adhere to treatment recommenda- tions. Wolpin said that this might be a sign of distrust of providers and described how many clients do not know when or how to ask questions about the treatment options that are present for them or for their children. Wolpin provided an illustration of the impact of low oral health literacy. The center serves many Spanish-speaking migrant agricultural workers. These workers often live in multifamily dwellings. In order to assure that the working men of the household get a good night’s sleep, mothers will put babies to bed with a bottle of sweet liquid, or they will give babies a pacifier sweetened with honey. The result is that many of the children have early childhood caries, and have to be treated in a hospital. Wolpin described his early approach to education as preaching. He accepted the need for the baby to have a bottle at bedtime, but asked mothers to fill the bottle with fluoridated water. His patients seemed to be in agreement with his advice during their visits, but did not change their behaviors. It is possible that they were not changing their behaviors

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ORAL HEALTH LITERACY PROGRAMS 35 because they were afraid that the tap water was harmful. An interpreter brought this to Wolpin’s attention when he was working with a family. Some families, many of them poor, were buying bottled water. Wolpin could identify with this concern because when he visits other countries, he worries about the safety of the drinking water. However, in this case, a lack of knowledge about the safety of the water supply was harming both budgets and the dental health of young children in the community. Wolpin described the worst case of dental caries in a child that he has ever treated. He had to remove all of the teeth of a 3-year-old. This child had to live without teeth until the permanent teeth fully emerged at about age 6 and, in the interim, it was very difficult for the child to eat. Surgeries in such cases are very expensive, as much as $1,500. If restorative work is completed, the cost of surgery can rise to $4,000. Yet, these cases and their associated costs are generally easily preventable. The need for follow-up and wellness visits can also be misunderstood by parents who often only bring children in when there is extensive dis- ease and symptoms. Another clinical experience illustrates the need for clear communica- tion. The family of a little girl who was having surgery for multiple caries was given preoperative directions. Because she would be treated in an operating room, she was to have nothing by mouth after midnight. Yet when she came to the presurgery room with her parents the next day for her parents to sign the general anesthesia consent the surgery had to be canceled because the child was eating a donut. The family understood that “nothing by mouth” meant that all of the girl’s teeth were going to be removed. They worried that she would be very hungry after the operation so they thought she needed to have something to eat in the morning. Wolpin pointed out that providers need to ensure that patients understand what is being said. The environmental scan at the center included an informal inter- view with Wolpin and another center dental provider. The research team walked through the offices to evaluate the user-friendliness of the center. This provided excellent information for the center staff. The research team also examined the center’s printed materials to see if they were health literate-sensitive. Some of the centers patients were interviewed, and the interviews are ongoing. A mail survey is planned that will go out to dental providers and cover communication techniques. Several important lessons resulted from the environmental scan pro- cess, Wolpin said. First, the dental community is not going to be able to adequately respond to the crisis in dental health in the community because there are too few dentists taking care of families with Medicaid insurance and those who are uninsured. In his view, the dental commu- nity needs to be able to rely on the medical community. With training,

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36 ORAL HEALTH LITERACY medical providers can conduct dental risk assessments, offer preventive interventions, and link children with untreated dental disease with a den- tal home. Second, there is a need to know and practice according to cur- rent evidence-based science. It is just as important to ensure that patients and the public have this understanding and, in turn, want these inter- ventions. One approach is to employ culturally appropriate lay health workers to provide oral health, nutrition information, dental sealants, and fluoride to underserved families. Messages need to be kept simple and use plain language. Finally, training in health literacy for all dental staff is essential according to Wolpin. Support staff, hygienists, and assistants often have extensive interactions with patients. There are many opportunities to share messages throughout the clinic experience. Center staff working in school settings can be sensitive and share important messages in a health literate way. ORAL HEALTH LITERACY: HOW CAN WE IMPACT VULNERABLE POPULATIONS? Marsha Butler Colgate-Palmolive Company Marsha Butler, vice president of global oral health at Colgate- Palmolive Company, discussed a children’s oral health promotion cam- paign that has been implemented globally, the Colgate Bright Smiles, Bright Futures program. The objectives of the program are to • empower children to practice good oral hygiene; • partner with government and the profession to improve oral health; • help reduce prevalence of dental caries worldwide; and • give back to communities where Colgate-Palmolive does business. There is a long history of oral health education at Colgate-Palmolive, beginning in 1911 when there was a program for teachers, “Good Teeth and Good Health.” Since the 1940s, the company has provided oral health school-based programs globally. Colgate’s Bright Smiles, Bright Futures was launched in 1991 as a comprehensive oral health initiative targeted to the most vulnerable and underserved communities in the United States. The Bright Smiles, Bright Futures program was initiated in recogni- tion of the toll that oral disease was taking as the most prevalent health problem in the United States. Children from families who are poor and those who are members of racial and ethnic minority groups are known to

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ORAL HEALTH LITERACY PROGRAMS 37 suffer disproportionately. The Surgeon General’s 2000 report, Oral Health in America, reported that 52 million school hours are lost annually due to oral health-related disease. The World Health Organization’s 2003 report concluded that good oral health is critical to the overall health. The 2007 Trends in Oral Health Status report from the U.S. Centers for Disease Con- trol and Prevention reported the following: • Prevalence of dental decay increased in primary teeth from 24 percent in 1988-1994 to 28 percent in 1999-2004 (2-5 years old). • Prevalence of dental decay in permanent teeth has decreased sig- nificantly during this period from 25 percent to 21 percent. • Among non-Hispanic black youth, 6 to 8 years, dental decay has increased during this period from 49 percent to 56 percent. A recent New York Times report (March 6, 2012) discussed an increase in the number of preschoolers with extensive dental disease requiring in-hospital treatment under general anesthesia. Interviews with some of the parents whose children were treated this aggressively suggested that they were not told basic information on how to address caries, when to go to the dentist, or when to start using fluoride toothpaste for very young children, 2 to 5 years old. Butler cited the definition of oral health literacy from Healthy People 2010: “the degree to which individuals have the capacity to obtain, pro- cess, and understand basic health information and services necessary to make appropriate health decisions” (HHS, 2000a) and enumerated some of the instructive findings from the health literacy literature: • Thirty percent of U.S. parents have difficulty understanding and utilizing health information (Yin et al., 2009). • Lower health literacy skills often lead to poorer health status, unhealthy behaviors, and poor health outcomes (Lee et al., 2011). • Factors at both the individual and community level, such as socio- economic status, age, sex, ethnicity, and health insurance coverage can affect the relationship between literacy and health outcomes (Butler, 2012). • Self-efficacy and self-care can mediate the effect of health literacy on health status (Osborn et al., 2011). The Bright Smiles, Bright Futures program in the United States is offered in schools and includes a curriculum for preschool through third grade. There is a teacher’s guide, audio-visual materials to engage the children, and parent communication materials that go home with each child. The goals of the program are to

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38 ORAL HEALTH LITERACY • increase children’s knowledge of preventive oral health measures; • increase understanding of nutritional foods and drinks for good oral health; • instill proper oral hygiene skills for healthy teeth and gums; • relate good health to high self-esteem; • increase family awareness and knowledge of the benefits of oral health; and • increase low-income family linkages to oral health providers. It is important to develop children’s oral health consciousness so that they can have confidence about accepting responsibility for their personal oral care at the earliest possible age, Butler said. The program aims to modify oral health habits by using colorful, fun, and engaging multime- dia and multicultural activities. An example is a comic book adapted from a program video. The prekindergarten materials were developed in partnership with Head Start. The materials promote self-esteem and self-efficacy. With the program, Head Start teachers and health coordinators become advocates for good oral health. Parent involvement is an important critical part of the program. A program to prevent early childhood caries that targets pregnant women and caregivers with babies and toddlers, developed in collaboration with Early Head Start program, has been well-received by health coordinators, said Butler. A parent checklist simplifies CAMBRA 2 recommendations from the University of California, San Francisco, in a colorful graphic with simple language that can be easily understood by Early Head Start parents (Figure 5-1). In addition to print materials, many Bright Smiles, Bright Futures resources are available online for both par- ents and children. There are games for children and materials for health educators. Implementation studies have been conducted in collaboration with the University of Maryland. Results show that families believe the pro- gram taught students responsibility for their own oral health. Children exposed to Bright Smiles, Bright Futures relative to nonparticipants had increased knowledge of oral health, higher frequency of visits to the den- tist, brushed their teeth morning and night, and had better brushing skills. The Bright Smiles, Bright Futures program uses eight mobile vans to take the program to where children live, and where vulnerable popula- tions reside. These mobile vans have traveled to more than 160 cities. The program operates in partnership with thousands of volunteer dental professionals to educate students and school staff, and refer children 2  CAMBRA stands for CAries Management By Risk Assessment.

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ORAL HEALTH LITERACY PROGRAMS 39 FIGURE 5-1  A checklist to prevent dental caries. SOURCE: Butler, 2012. Figure 5-1.eps bitmap

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40 ORAL HEALTH LITERACY to providers. Partner organizations include dental associations, dental schools, neighborhood health centers, and hospitals. A partnership with the school of dentistry at the University of Califor- nia, Los Angeles, takes oral health awareness to an infant care program. The program, led by Dr. Francisco Ramos-Gomez, provides counseling to patients with infants and toddlers at a community clinic. Materials are used that are designed to reach individuals of low literacy. Raising the awareness of the community also benefits oral health. Bright Smiles, Bright Futures partners with national and local community- based groups, as well as religious, fraternal, and civic organizations in fun and engaging ways. The program participates in large community festi- vals and multicultural events. In addition, partnerships have been formed with the media and public relations groups to promote oral health literacy. Colgate-Palmolive launched Hispanic Oral Health Month in partner- ship with the Hispanic Dental Association. This effort promotes aware- ness of oral health in Hispanic communities, using bilingual resources to educate families. A joint outreach effort in 12 Hispanic communities involves retailers, including pharmacy, community-based organizations, and Hispanic Dental Association volunteers. A partnership has also been formed with Univision, a Spanish lan- guage multimedia company. This partnership has led to the integration of oral health information and education into Spanish programming. Oral health messages were incorporated into a reality television program, Nuestra Belleza Latina, that features young women who are competing to be on Univision television. As part of a partnership with the Walmart Corporation, Bright Smiles, Bright Futures mobile dental vans visit participating Walmart stores to provide oral health education. Diagnostic screenings are available as are referrals for treatment. An online resource, “Building Smiles Together,” is available to Walmart customers. Participating Walmart stores are located throughout the country and some of them are in areas that do not have ready access to dental care and information. Another campaign, “A Hundred Million Smiles,” builds awareness of oral health in ethnic and poor communities. “Brush-a-thons,” involving hundreds of young children brushing their teeth at the same time, raise awareness of oral hygiene. Partnerships have also been forged with Boys and Girls Clubs, YMCAs, and faith-based organizations. These partner- ships provide opportunities to share the Surgeon General’s “Seven Steps to a Bright Smile,” which was created in partnership with the U.S. Public Health Service. Celebrities have also been recruited to serve as dental role models. The Bright Smiles, Bright Futures program has reached more than 650 million children in 80 countries since 1994. The program’s materials

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ORAL HEALTH LITERACY PROGRAMS 41 have been translated into 30 languages. There are in-school programs and Web-based interventions. Many collaborating countries, including Brazil and China, have been successful in raising oral health awareness. In China, 100 million children have been reached over a 10-year period, and thousands of teachers have been trained and educated through their nationwide oral health promotion program, “Love Thy Teeth.” In a school-based program in South Africa, Mama Colgate, a nurse, goes into rural areas to educate families and children. A dental mobile van provides treatment and on the Phelophepa3 health train Colgate sponsors a dental car where nurses and dental students educate individuals in oral care in rural areas of South Africa. In India, Colgate partnered with the Anganwadi rural program that uses primary health care workers to deliver primary health, nutrition, and education for children and mothers. This program operates in part- nership with the Indian Government and targets mothers and children 3 to 6 years old in rural areas. Colgate provided training to the primary health care workers so that they could teach basic oral health. To date, Butler reported, 118,000 workers have been trained and several million children have been reached with simple educational materials, lectures, slide presentations, flipcharts, and materials. Butler concluded by highlighting important lessons learned from Colgate’s many oral health initiatives. First, preventive oral health education and promotion represent significant steps toward achiev- ing positive oral health outcomes. Second, partnership with local and community-based organizations is a critical component for success. Third, more research is needed to better understand the impact of grass- roots approaches to promote oral health literacy at both the individual and community level. DENTIST-PATIENT COMMUNICATION TECHNIQUES USED IN THE UNITED STATES: THE RESULTS OF A NATIONAL SURVEY Gary Podschun American Dental Association Podschun presented the results of a recent national survey sponsored by the American Dental Association (ADA) that was conducted among member and nonmember dentists in clinical practice to identify commu- 3 “South Africa’s custom-built ‘health train,’ Phelophepa I, delivers health services to r ­ emote areas of the country, reaching over 180,000 patients a year” (http://www.southafrica. info/about/health/health-train-160312.htm [accessed October 10, 2012]).

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42 ORAL HEALTH LITERACY nication techniques routinely used by dentists and how their use varied.4 The ADA is the professional association that represents the interest of dentists and also works to advance the oral health of the public. Podschun acknowledged the contributions of the following groups and individuals who guided the design and execution of the survey: • ADA National Advisory Committee on Health Literacy in Dentistry • Dr. R. Gary Rozier, University of North Carolina at Chapel Hill, Gillings School of Global Public Health • Dr. Alice M. Horowitz, University of Maryland at College Park, School of Public Health • Brad Petersen, ADA Health Policy Resources Center • John Cantrell, University of North Carolina at Chapel Hill, Gillings School of Global Public Health The definition of oral health literacy adopted as ADA policy in 2006 is “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appro- priate oral health decisions.” This definition was adapted from a defini- tion of health literacy formulated at a 2004 National Institute of Dental and Craniofacial Research (NIDCR) workshop. An alternative definition, “the ability to access, understand, appraise, and communicate informa- tion to engage in the demands of health contexts to promote health,”5 is also an important continuation of the definition of health literacy. This definition takes into account the demands that are placed on the public by health care providers in the health care system. The ADA has adopted policies acknowledging that limited health literacy is a possible barrier to oral disease management and that effective communication skills are essential to the practice of dentistry. Podschun added that the lack of communication skills of health professionals often impedes the public’s health literacy. Podschun noted that much effort has been devoted to the assessment and development of skills among patients and the public in health literacy, but very little attention has been paid to the development and testing of communication skills of dental and other health care professionals. Because of the lack of information about the communication skills of dentists, or about the dentist/patient communication interaction, the 5-year ADA Health Literacy in Dentistry 4  The results of the survey are published: R. G. Rozier, A. M. Horowitz, and G. Podschun. 2011. Dentist-patient communication techniques used in the United States: The results of a national survey. Journal of the American Dental Association 142(5):518-530. 5  This definition can be found in the article I. Rootman and B. Ronson. 2005. Literacy and health research in Canada: Where have we been and where should we go? Canadian Journal of Public Health 96(Suppl 2):S62-S77.

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ORAL HEALTH LITERACY PROGRAMS 43 Action Plan 2010-2015 (ADA, 2009) calls for additional studies to assess the health communication perceptions and practices of dentists and their team members, including dental hygienists and dental assistants. The action plan also calls for the advancement of interventions for oral health professionals to improve their communication skills. The purpose of the ADA survey was to (1) determine techniques used by dentists and dental team members to ensure effective patient com- munication and understanding; and (2) identify the variation in routine use of these techniques according to factors that might be targeted with interventions. In his presentation, Podschun focused on dentists. Data were collected for the entire dental team and he mentioned that there will likely be manuscripts developed describing the techniques used by dental team members. Staff from the ADA survey center selected a simple random probabil- ity sample from approximately 179,594 member and nonmember profes- sional active dentists (general and specialists) in the United States. Ques- tionnaires were mailed to 6,300 sampled dentists and two mail and one telephone follow-ups were conducted to improve response rates. The questionnaire included 86 items that were developed by the ADA National Advisory Committee on Health Literacy and Dentistry. The final questionnaire included 18 communication items for which participants indicated on a 5-point Likert scale, from never to always, how often dur- ing a typical work week they used certain techniques. The 18 questions covered the following five domains: 1. Understandable language (5 questions) 2. Teach Back method (2 questions) 3. Patient-friendly materials (4 questions) 4. Help understanding (5 questions) 5. Patient-friendly environment (2 questions) These communication techniques were recommended to the ADA by the American Medical Association (AMA) because they were included in an AMA survey of health providers (Schwartzberg et al., 2007). Major parts of the questionnaire were pilot tested with dental providers at the 2007 ADA annual meeting. The primary outcome variable for the analysis was the count of rou- tine techniques used by the dentists. Routine was defined as “most of the time” or “always” as opposed to “never,” “rarely,” or “occasionally.” Predictor variables that were listed in the analysis included the following: • Provider characteristics (i.e., age, race/ethnicity, sex, U.S.-born/ trained)

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54 ORAL HEALTH LITERACY county determined that the fluoridation of water is a major issue and have gotten together with the public health department to develop strategies to preserve or initiate water fluoridation. The Internal Revenue Service (IRS) requires that hospitals quantify their community benefit in order to maintain their community benefit designation under the tax code. Hospitals have to conduct a community- based needs assessment. Hospitals are encouraged to conduct these assessments with their public health partners and then report on how they spend their community benefit money. Isham observed that there are opportunities for partnership between hospitals and public health systems to meet the IRS requirements regard- ing community benefit. He also pointed out that there are lost opportu- nities in terms of collaboration between dentistry and primary care. He noted that the Institute of Medicine recently released a report on public health and primary care. Isham scanned the report to see if there was coverage of dentistry or health literacy. Dentistry appeared twice, and health literacy did not appear in the report. Isham noted that much of the controversy surrounding water fluo- ridation stemmed from the public’s perceptions of the role of govern- ment. If the issue is reframed in terms of the health of children, and the economic vitality of communities, then water fluoridation might have a more favorable appeal to the broader American public. Isham noted that the dental and oral health community has a tremendous role to play in starting this conversation. Conicella suggested that the anti-fluoridation movement is a sign of health illiteracy. She asked the panel if members of this movement communicate with Pew, the ADA, or the states with their concerns about water fluoridation. If so, she asked how the oral health community is responding to their concerns. Jacob replied that Pew and its national partners received many e-mails in response to their Campaign for Dental Health and their website, ilikemyteeth.org. However, Jacob said, most of these e-mails were sent by a small group of anti-fluoride activists. Jacob mentioned the similarities between the anti-vaccine movement and the anti-fluoridation movement. Isham said that there are many opportuni- ties for organizations to leverage their assets for educating the public and identified the different levels of intervention that are needed to meet the oral health literacy challenge. He noted that attention needs to be paid to both consumers and to policy makers. Roundtable member Brach asked Podschun if there were oral health specific tools and resources available through the ADA, and if there were, if materials had been adapted from medical health tools and resources. Podschun said that the National Advisory Committee on Health Literacy and Dentistry recommended at their last meeting that a health literacy

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ORAL HEALTH LITERACY PROGRAMS 55 toolkit be developed. In their review of what that toolkit might look like, they discussed the Agency for Healthcare Research and Quality (AHRQ) toolkit and the possibility of tailoring sections of that resource to the practice of dentistry. Podschun said that the National Advisory Committee on Health Lit- eracy and Dentistry discussed the development of an awareness-raising video targeting dentists and their team members. He stated that the American Medical Association found that the production of a health literacy video and its distribution to all of their members was the single most important factor in raising the consciousness of their member physi- cians. Podschun said that a similar approach might be useful in raising awareness of ADA members and others about the importance of oral health literacy. Podschun pointed out that printed materials and brochures are the most often used educational strategies in dental practices and yet there is no assessment of the quality of those materials. The ADA would like to develop a rapid assessment tool that dental practices could use to assess the quality of the materials that they are purchasing for their offices. Brach mentioned that AHRQ is in the process of developing a health informa- tion rating system. Ross asked Podschun about the interaction between race and literacy. He noted that the ADA survey results showed that dentists with low- outcome expectancies used fewer health literacy techniques. Ross asked, “Why did they have such low outcome expectancies? Was there some cultural bias inherent in the survey?” He further asked if it was possible to control for cultural competence in the analysis of the survey. Podschun clarified the survey results by pointing out that African American dentists and foreign-born dentists were more likely to use more health literacy techniques. Roundtable member McGarry asked Jacob if Pew has analyzed the responses to the website that has been created. Jacob responded by point- ing out that the website is a fairly nascent effort launched in November 2011. He described a major task relating to SEO (Search Engine Optimi- zation). These are techniques to improve search rankings. Traffic to the ilikemyteeth.org site has grown slowly. A number of partners, including the AAP, the California Dental Association, and a variety of state and local foundations are supporting the Campaign for Dental Health and its Web presence. Pew and its partners who launched the Campaign for Dental Health have learned how to optimize its website ranking. For example, the amount of content on a website influences whether searchers are directed to a particular site. The Campaign for Dental Health has hired consultants to assist with their Web development to ensure that it is accessible. The

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56 ORAL HEALTH LITERACY Campaign has encouraged state health departments to link into the site. Links to Web content that include “.gov” improve a site’s standing. These strategies are important because a website may have excellent content, but if no one is directed to it by Web browsers, it is not going to have an impact. In Jacob’s judgment, the anti-fluoridation movement has done a very good job of giving their content the veneer of science. Roundtable member Pearson observed that health literacy and oral health literacy have followed a similar trajectory as a field in its develop- ment phase. The initial work often involves designing evaluation and research programs to identify where problems exist in the community. He observed that such an orientation leads to “sick care,” which in turn leads to a continuing focus on treatment. This can make it difficult to change the system’s orientation to focus on prevention and integrative medicine. It may be that oral health literacy, because it is a younger field, may avoid this difficulty. He asked the panel members if they could imagine what research and evaluation tools and then intervention campaigns might look like if they focused on what works instead of what does not work. He asked, “How might that orientation change your strategy and possibly the outcomes?” Jacob responded that with his background in messaging and public relations, it is important to focus on problems. He pointed out that every single day in America, hundreds of airplanes land safely and you never hear about it on the news and no one discusses it over coffee because it is not a problem. Problems tend to generate concern and get people talking. He suggested that there are ways to frame oral health problems in such a manner that it does not have a treatment focus. The Campaign for Dental Health does highlight the problem of tooth decay in America, but the focus is on fluoridation and sealants as preventive strategies to address the problem. Roundtable member McGarry noted that there is a growing body of research on the association between oral health and chronic diseases. He asked the panel whether they had observed this association in their practices or research. Wolpin, from his clinical experience, highlighted the important interface between oral health care and medical care. He sees patients with difficult to manage diabetes with dental abscesses. These patients are at higher risk of infection because of their poorly controlled diabetes. Wolpin described a vicious cycle between the uncontrolled dia- betes and infection. He stated that it is critically important for dental providers to work collaboratively with medical colleagues. The relatively new focus on the patient-centered medical home provides opportunities to take a transdisciplinary approach to health care. In Wolpin’s commu- nity health center, the medical staff helps him gain access to the youngest children, because they are generally seen for well-child visits five times

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ORAL HEALTH LITERACY PROGRAMS 57 the first year of life. This provides opportunities for anticipatory guidance and risk assessment. There are also opportunities for transdisciplinary approaches among older patients, according to Wolpin. If a medically underserved adult seeks dental care for a toothache, Wolpin is able to refer those with high blood pressure to his medical colleagues. Roundtable member Ratzan asked the panel how to better integrate oral health literacy with broader prevention issues. In response, Horowitz, indicated that multiple approaches are needed. One very important approach is to have medical school curricula that include oral health issues. For too long, the disciplines have been separated and they should not be, in her view. Continuing education courses and training are also needed to reach those who have completed their education. Horowitz added that having electronic records also fosters integra- tion. County health departments and federally qualified health centers that have electronic records are able to cross-communicate. And when different services are provided under one roof, it is much easier to collabo- rate. Some facilities house medical and dental services and, in addition, have WIC and Head Start offices. A well-educated workforce and public are also essential to integration according to Horowitz. Wolpin described innovative partnerships between academia and community health centers that provide opportunities for service learn- ing. His community health center has an advanced education in general dentistry residency program. The dental residents shadow a primary care provider, so they learn about medicine. Rush asked Wolpin to describe the content of the training that is provided to his staff on health literacy. Using excellent resources is key to a good training program according to Wolpin. When working with the WIC programs and the school-based programs, Wolpin has relied on tools similar to those developed for the Bright Smiles, Bright Futures campaign. Unfortunately, there is not a central and indexed resource for materials related to best practices. Consequently, finding good resources to share with the center’s staff is sometimes difficult. Wolpin has found that shar- ing anecdotal experiences can be a powerful way to convey the relevance and importance of health literacy. Wong asked the panel whether “positive deviant models” have been applied to oral health literacy. Here, individuals in the community who show positive deviance from the norm, in this case, children with good teeth or no cavities, are studied to see if their parents (or the children themselves) have identifiable practices that could be disseminated more effectively. Wong asked if there are examples of parents who are doing things differently and effectively, thereby keeping their children free from dental disease and away from the dental office. In reply, Butler discussed some of the ongoing research at Colgate-Palmolive. Best practices and

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58 ORAL HEALTH LITERACY effective prevention programs are being examined in the United States and around the world to identify the ingredients of program success. These analyses include estimates of the potential to improve oral/dental outcomes as a result of programs that have incorporated education and the use of effective preventive treatments. Children and families who have adopted best practices are included in these reviews. Butler stated that the results are forthcoming and, when available, will be widely shared. Wolpin in response to Wong’s questions added that it is important to understand the motivations behind noncompliant behavior on the part of parents. There is an assumption that when families do not seek care for their children, they do not value oral health care. Wolpin pointed out that parents need to understand the importance of dental care before they can value it. Providing education to families is key to changing behavior. Roundtable member Patel asked Wolpin if his community health center had an electronic health record that would allow him to track oral health patterns within the community he serves. In addition, she asked whether the electronic record, if present, is the same system used for dental and medical care. Wolpin replied that the center has an electronic health record, but it lacks sophistication. At present it is used primarily for completing the dental charting and clinical notes. In terms of record shar- ing with primary care, Wolpin stated that their record system is not inte- grated. The joint assessments that are done within the community health center are paper-based or e-mail/task correspondence. The records are not shared or colocated. Additionally, dentists are not yet utilizing diag- nosis codes and this makes tracking oral health patterns more difficult. Brach asked Wolpin what systematic changes were made at the health center as a result of his participation in the oral health literacy environ- mental scan conducted there. She also asked how other health centers that are not participating in a research study could identify shortcomings and find resources to assist them in addressing oral health literacy. Wolpin said that the intervention allowed him to rise above the focused perspec- tive of a dentist and take a broader look at the meaning of his clinical experiences. This broader perspective allowed him to answer questions, such as why aren’t my patients getting healthier? Why aren’t they get- ting the message? In terms of systematic changes that have taken place at the clinic, the most important in his view has been raising awareness about oral health literacy and its link to patient outcomes among the staff. The center’s consent forms have been rewritten in plain language. Other changes to the center are in progress. Wolpin said that he is working with the National Network of Oral Health Access. This network represents a tremendous resource for community health centers. The center is in the process of obtaining tools and resources to augment the adoption of best practices. Horowitz added that the environmental scan process had just

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ORAL HEALTH LITERACY PROGRAMS 59 begun and it may be too early to expect systematic change within the center. Pisano asked Wolpin how to address resistance on the part of some oral/dental providers to the idea that oral health literacy is important to the health of their patients. Wolpin said that a focus on outcomes would help overcome resistance. Most providers want to excel. If shown the evidence that addressing oral health literacy issues improves clinical outcomes, providers would become sensitized to the issue. In his view, monitoring clinical performance is a powerful tool to bring about changes in clinicians’ behavior. Finding out that a colleague has better outcomes following the adoption of oral health literacy practices could motivate change. Roundtable member Humphreys asked Butler how the materials developed for the Bright Smiles, Bright Futures campaign had to be adapted for use in different countries. She also asked whether the materi- als are available in multiple languages. Butler replied that an expert board was convened from around the world to initially develop the materials. This group identified needs, gaps, and challenges. Local adaptations to the materials took place once the pro- gram was launched in a country. The materials have been translated into at least 30 languages. In India, the materials have been translated into 10 local languages and adapted to reflect urban and rural issues. The materials developed for use in the United States are available on the U.S. website in English and Spanish. Materials developed for other countries are available on local websites. Humphreys discussed the great demand for good materials in lan- guages other than English in the United States. The U.S. population is very diverse, and often, extended members of a family can only commu- nicate in a foreign language. Humphrey suggested that Colgate-Palmolive consider making the Bright Smiles, Bright Futures materials that are avail- able in so many languages available to practitioners in the United States. Butler agreed that this was a good idea. Roundtable member Pleasant observed that there is general agree- ment on the benefits of applying what has been developed in health literacy to the oral/dental health field. He asked if there are findings or interventions that have been developed within the oral/dental health community that should be adopted by the health literacy community. Horowitz explained that oral health literacy research is a relatively new area, and not as well developed a field as general health literacy. She indicated that it is too early to tell if there are unique insights to convey from health literacy. There is a growing body of literature in oral health literacy and eventually, it may be appropriate for AHRQ to support an evidence-based review on this topic.

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60 ORAL HEALTH LITERACY Horowitz added that oral health literacy should be a part of general health literacy. These areas have distinct foci, but should be integrated. Practices that are recommended in health literacy should be applied to oral health literacy. Butler agreed with Horowitz and added that it is important to look at oral health as a part of overall health. In practice, pediatric providers are essential in recognizing oral/dental issues early and ensuring that referrals to dental providers occur. Roundtable member Schyve commented that much of the workshop focused on getting information to consumers and ensuring their under- standing of the information. He asked the panel how rewards or incen- tives that are necessary to actually change behavior and create new hab- its could be incorporated into oral/dental interventions. Schyve noted that there are several habits that the public should adopt, for example, brushing, flossing, drinking fluoridated tap water, using tap water in the bottle at bedtime, eating healthy snacks, and making regular dental visits. Schyve’s question about incentives was prompted by his reading of a recent book by Charles Duhigg, The Power of Habit: Why We Do What We Do in Life and Business. According to Schyve, this book describes three antecedents to behavior change: people need a cue, they need to take action, and then they need a reward for the action. Schyve noted that in the area of oral/dental care, there are few, if any, immediate rewards. For example, there are no immediate rewards for brushing your teeth. How- ever, Duhigg in his book uses Pepsodent as a case study. To motivate peo- ple in the early days to adopt the habit of brushing their teeth, Pepsodent promoted the idea that people would be happier after brushing their teeth because the film on their teeth that had accumulated overnight would be gone after brushing. This campaign was apparently successful in getting people to start brushing their teeth with toothpaste. In reply, Horowitz suggested that incentives or rewards would likely have to vary for different groups, based on age and other factors. The avoidance of pain and financial cost could be considered rewards, but in some cases, these may not be immediate rewards. At this point, there is strong evidence that many people simply do not have the knowledge or understanding that is needed to prevent tooth decay. They do not have the option to act without such understanding. She stated that with the knowledge and the tools necessary to act, people can be empowered to adopt healthy behaviors. She added that, in some communities, extreme financial barriers have to be overcome. Some parents cannot afford tooth- brushes and toothpaste. Roundtable member Loveland recounted her experience of tak- ing a mobile van into communities to provide services to individuals with asthma. A major challenge was adequate staffing and record keep- ing. Without a physician on site, patients did not receive follow-up. In

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ORAL HEALTH LITERACY PROGRAMS 61 response to this issue, Butler stated that partnerships have been key to the success of their programs. The Colgate-Palmolive sponsored pro- grams partner with community health centers and other practitioners to provide education and treatment services. These partnerships help build trust, and individuals receiving care have the opportunity to meet with local providers who might share some of their characteristics. The use of partnerships for the past 20 years has ensured the provision of care to the children served in the Colgate-Palmolive programs. Roundtable member Alvarado-Little asked the panel how oral health professionals can create practice environments that engender trust. Most patients need to feel comfortable before they are able to ask questions of their providers, especially if there are socioeconomic, cultural, or language barriers. In response, Wolpin described some progressive workforce mod- els that involve mid-level dental providers. These providers are often from the same cultural background as the patients they serve. Another approach is to identify a “cultural broker” that can effectively commu- nicate with clients and members of the oral/dental team. Wolpin found that many of the children who were having extensive dental procedures performed at his local hospital came from the same largely Spanish speak- ing small town. The mother of one of his patients became an oral health champion within the community. Case managers are also invaluable in terms of providing linkages to care. Case managers conduct environmen- tal scans, identify barriers to care, and work with families to overcome these barriers. Horowitz agreed that case managers and health navigators are critical to facilitating appropriate care, especially among low-income groups. Butler added that involving community members in programs is key to success. Sometimes, the messenger is as important as the message. Isham identified three themes from the workshop. First, there was a call for more integration of dental and medical care. Second, while it may be too early to tell what distinguishes oral health literacy from health literacy in general, the important focus at this time is on implementing evidence-based findings. Third, the incorporation of evidence-based prac- tice into dental practice seems to be an issue. Isham discussed the potential of integrated electronic medical records. HealthPartners has a large dental practice and a large dental plan. Its medical plan serves individuals covered by Medicaid and commercial insurance products. A common dental and medical record has been a challenge. And yet, the opportunity to address prevention across medi- cal and dental care is tremendous. From Isham’s perspective, the dental profession can make progress in terms of developing measures of quality, coding and data systems, and monitoring systems. Horowitz, identified a unique attribute of oral health literacy. She sug- gested that oral health is uniquely and summarily ignored. She observed

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62 ORAL HEALTH LITERACY that new mothers are taught to bathe and clean the baby, except the mouth. She speculated that the neglect of oral/dental health stems from the fact that dental disease is often a silent disease. An arm infection can- not be ignored, but periodontal disease is often ignored. She indicated that the oral/dental health community may have to work even harder than the medical community to make progress. That said, Horowitz con- cluded that incorporating oral health messages into general health literacy is very helpful. Wolpin described the evolution of dentistry during the past 20 years. He stated that 20 years ago it was common practice to provide everyone with cleanings and fluoride every 6 months. There was no risk-based approach to dentistry and no evidence to support the practice. In Wolpin’s view, dentistry is catching up with medicine in terms of practicing accord- ing to evidence and adopting health literacy principles. Butler stressed the importance of integration, but expressed frustra- tion that although we know what to do, we are not doing it. The tools are available, but many do not know where they are. In her view, there needs to be a pulling together of stakeholders. She suggested that this pulling together could occur as part of an online initiative, or perhaps through a collaborative development of materials that could be used by both health and dental providers. She added that it may be necessary to create a central resource, where information on oral health and its relationship to health could be easily accessed. Isham brought to the group’s attention a report from the Common- wealth Fund on quality by hospital referral region across the country. The report discusses some very interesting variations in the quality of medi- cal care. AHRQ has had state snapshots of quality of care as part of their national quality and disparity reports. Isham asked whether oral health issues are included in these studies. These comparative studies often engage communities and policy makers and can provide leverage points for change. Brach said that the AHRQ state snapshots and the National Health Care Quality and Disparities Report do include basic dental access information such as whether a child of a certain age has had a visit to the dentist in the past year. But, she said, until there are validated, reliable quality measures, AHRQ and others do not have material to include in these reports. Isham raised an issue related to access to dental care. In Minne- sota, there is a new profession referred to as “dental therapist” that has a very carefully defined scope of practice that includes education and prevention-related activities. The development of this new profession is in response to serious access problems, especially for individuals at lower socioeconomic levels. Wolpin commented that this area is very contentious and is being debated within the dental profession in the

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ORAL HEALTH LITERACY PROGRAMS 63 United States. Isham acknowledged the controversial nature of this new profession, but wanted to be able to address the issue. He stated that throughout the day’s proceedings the problem of access to dental care among the traditionally underserved community was raised. There are clearly well defined remedies to many of the problems within this com- munity. He asked if there are new ways to educate the public, to reach out and engage them. Wolpin agreed that the model of care currently in place needs improve- ment and the dental profession may need to be pushed in order to bring about change. Many dentists have opted out of participating in the Med- icaid and Medicare programs. He said that rewards for clinical outcomes may be necessary to change professional behavior. At the present time, he pointed out that a dentist benefits financially if he or she does more surgery. In Wolpin’s opinion, this reward system has to change. He sug- gested that incentives be put in place to keep people healthy. If financial incentives to encourage prevention were in place, then the private-sector dentistry community may change course. Wolpin added that dental care optimally is a partnership and the patient should be made to realize that there are benefits to prevention, in terms of cost savings and prevention of pain and suffering. Horowitz added that there needs to be better access to primary pre- vention, rather than just treatment. Dental disease can be prevented and this is where attention needs to be focused. She said that the creation of a new dental profession such as the dental therapist will not address the problem unless the incentive structures are changed. Unless there are incentives for prevention, the emphasis on drilling our way out of this disease will not stop. Horowitz emphasized the need focus on prevention. She recommended starting with mothers and teaching them how to care for their children’s oral health needs. In her view, mothers are the first educator, the first doctor, and perhaps the first dentist. With her international experience, Butler agreed that the focus needs to be on prevention. In her view, a model will emerge, the incentives will arise, and providers and payers will engage in change. From a global perspective, for example, the strategy of drilling your way out will not be effective in countries with few dentists per population. A focus on educa- tion and prevention is a beginning. Ismail encouraged the workshop participants to move beyond reports with recommendations and urged the participants to act. He stated that one action that could improve oral health literacy is the development of a tool for the assessment of literacy and a list of interventions that have been proven to change environments and organizations. He added that perhaps accreditation standards could be augmented to include issues related to oral health literacy. In his opinion, this is an intervention that could greatly motivate change.

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