4

Health Literacy Relevance to
Health Insurance Exchanges

THE IMPORTANCE OF HEALTH LITERACY
IN HEALTH INSURANCE REFORM

Frank Funderburk
Centers for Medicare and Medicaid Services

The Centers for Medicare and Medicaid Services (CMS) is actively engaged in activities to promote health literacy, Funderburk said. CMS participated in the development of the Action Plan for Health Literacy (HHS, 2010) and has developed and disseminated a toolkit that provides a comprehensive set of tools to help organizations make written material in printed formats easier for people to read, understand, and use.1 CMS also supports research-based social marketing efforts that focus on achieving health literacy goals and the objectives of the Affordable Care Act (ACA).

Funderburk pointed out that while health reform expands access to coverage and creates new health insurance options, understanding of these options is relatively low among key target audiences, including both the consumers who will be eligible for individual coverage and the qualified small businesses and their employees that will be eligible for coverage through the exchanges. To derive the intended benefits of the exchanges, consumers will need to become familiar with the enrollment requirements and processes as well as plan benefits, and integrate this detailed and often complex information in a way that allows them

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1 The toolkit can be found at http://www.cms.hhs.gov/WrittenMaterialsToolkit.



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4 Health Literacy Relevance to Health Insurance Exchanges THE IMPORTANCE OF HEALTH LITERACY IN HEALTH INSURANCE REFORM Frank Funderburk Centers for Medicare and Medicaid Services The Centers for Medicare and Medicaid Services (CMS) is actively engaged in activities to promote health literacy, Funderburk said. CMS participated in the development of the Action Plan for Health Literacy (HHS, 2010) and has developed and disseminated a toolkit that provides a comprehensive set of tools to help organizations make written material in printed formats easier for people to read, understand, and use.1 CMS also supports research-based social marketing efforts that focus on achieving health literacy goals and the objectives of the Affordable Care Act (ACA). Funderburk pointed out that while health reform expands access to coverage and creates new health insurance options, understanding of these options is relatively low among key target audiences, including both the consumers who will be eligible for individual coverage and the qualified small businesses and their employees that will be eligible for coverage through the exchanges. To derive the intended benefits of the exchanges, consumers will need to become familiar with the enroll- ment requirements and processes as well as plan benefits, and integrate this detailed and often complex information in a way that allows them 1 The toolkit can be found at http://www.cms.hhs.gov/WrittenMaterialsToolkit. 49

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50 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION to make sound decisions about which plans will best meet their needs. Clearly, attention to health literacy in general and health insurance lit - eracy in particular will be a key consideration in developing an effective health insurance communication strategy for the exchanges. Funderburk noted that the usual health literacy framework that aims to match an individual’s skills and abilities with the demands and com - plexity of the material would be useful in this context. He suggested, however, that the utility of the framework would be enhanced if moti - vational and attitudinal components of the communication were consid- ered. These features will influence the behavioral actions (e.g., consumer engagement in reviewing, comparing, and choosing appropriate cover- age) that must occur if the benefits of the program are to be realized. For example, improved access to health insurance and the associated benefits of improved population health and improved quality of life will only occur if consumers use the information to make informed choices that are tailored to their needs and aspirations. Research suggests that motiva - tional and attitudinal issues can be as detrimental to making appropriate health choices as low health literacy (Funderburk, 2011; Kotler and Lee, 2008; Sutton et al., 1995). Addressing health literacy is essential to the operation of the exchanges, Funderburk said. Attention to health literacy issues is a first step in support of informed consumer decision-making. Using simple, plain language rather than jargon; designing consumer-friendly decision- support tools; presenting comparative information using standardized insurance plan formats; personalizing outreach to diverse, low-literacy consumers; and facilitating communication between consumers and health system navigators can all be marshaled to help consumers under- stand eligibility rules and the operation of both public and private health coverage. One might think of implementing these diverse communication activities, when combined with a sound understanding of the point of view of the exchange consumers, as part of a broader social marketing campaign. Social marketing involves understanding the mental models that consumers use as they approach their decision-making situations, Funderburk noted. Factors such as health literacy, culture, language, atti - tudes, perceptions, and life circumstances that might prevent an indi- vidual from taking advantage of health benefits for which they are eligible are taken into account, and then strategies to overcome these barriers are developed. Social marketing supports health literacy and health insur- ance exchange goals. Materials and messages use plain language and are consumer centered. These messages are then tested and refined using real consumers. The process of testing is iterative and ongoing to improve communication and the ability of consumers to make choices. Ongoing testing identifies barriers and improves understanding of market segmen-

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51 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES tation and the development of materials to meet the needs of subpopula- tions within the larger market. Attention to health literacy is part of a consumer focus that can help build an accountable health care system, support better consumer interac- tions and decision making, help reduce avoidable costs, produce better outcomes, and improve quality of life, Funderburk said. A recent project provides an example that illustrates how these principles were put into practice to help consumers gain a better understanding of their health insurance options. Much of what was learned in this project has implica - tions for the development of the exchanges. Section 1103 of the ACA calls for CMS to establish an insurance web portal where consumers, including small businesses, can obtain consumer- friendly information about both public and private health insurance plans available to them. The portal was mandated to be operational in July 2010. CMS staff conferred with representatives of existing state health insurance exchanges, conducted an environmental scan, and began to test website formats with people who were uninsured or who were afraid of losing their coverage. CMS staff also explored basic perceptions of people most likely to use this resource in an effort to gain a basic understanding of “consumer reality” about health insurance products. Key questions included the following: • Perceptions—What are target group perceptions about health insurance in general and options available for their group in par- ticular? What experiences have participants had with public or private insurance? • Participation—What are factors that influence participants’ deci- sion making regarding enrollment, renewal, information seeking, and plan comparison? What barriers are identified? • Outreach—What factors are likely to influence participants as they access and use information available on the portal? What are con- sumer expectations regarding the portal? What should the portal be called? What key messages will attract individuals to the portal? How can CMS incorporate consumer feedback into the design pro- cess to improve outreach effectiveness? Examples of features from existing insurance websites were also shown to 18 consumer groups comprising a total of approximately 80 individuals. Limited discussions were also conducted among owners of small businesses. The portal was designed using plain language, and efforts were made to define specialized terms in ways that were more easily understood. The research team worked with study participants as coproducers. Par-

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52 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION ticipants were asked, “How would you say that? How could we say that better?” CMS staff learned, for example, that although the law uses the term exchange, the term insurance marketplace conveyed the concept more simply and was more easily understood. As part of the consumer testing, discussion group participants were asked about their feelings of being uninsured. Among those who were uninsured, there was fear and worry related to an unanticipated illness or accident. Among individuals who had health insurance coverage, there was the fear of losing coverage. Employers were worried about being unable to afford coverage and having difficulty attracting and retaining employees if they did not offer adequate insurance options. In general, the value of health coverage was its ability to confer peace of mind and secu - rity. Interest in affordable coverage was high among study participants. When the discussion group participants heard about the opportuni - ties for coverage under the ACA they were hopeful, yet they remained skeptical as illustrated by some of the comments: • “Who defines affordability? The Rockefellers? Or me?” • “How are you going to do that?” • “What’s it really going to cover?” • “How am I going to understand what I’m getting? Because I read this stuff, and it doesn’t make sense to me.” The consumer research made it clear that reasonable expectations must be set. For example, not all of the reforms will take place at once. According to the study groups, government could be viewed as a cred- ible source of information. Individuals were willing to trust a government stamp of approval on an insurance plan, especially when a plan was com - plex and difficult to understand. When study subjects were shown mock- ups of the HealthCare.gov website they were impressed and thought that the government has an appropriate role in providing this service. Although government websites were generally viewed as trustwor- thy, respondents reported that such websites are often not easy to under- stand. Social networks and community sources were described as pro- viding support to allay fears about biased or inaccurate information. The CMS research staff concluded that opportunities exist to exceed consumer expectations. Furthermore, the HealthCare.gov website had the potential to help consumers have more confidence in their decisions. Consumers expressed a desire for content that is personally relevant and timely. They want to know “What’s in it for me?” They wanted to be assured that the website was not promoting a political agenda—for example, a push for government-run insurance. The ability to examine public and pri -

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53 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES vate insurance plans in a clearinghouse type of environment was viewed positively. The consumer testing suggested that the term coverage is more appeal- ing than insurance. Consumer-friendly words included affordable, peace of mind, security, options, choices, your needs, and insurance marketplace. Terms to be avoided included jargon (such as high-risk pools), income require- ments expressed as a multiple of the federal poverty level, use of the term exchanges, and slick marketing language. Consumers had a strong sense of what they looked for in a good web experience, saying, “It meets my needs. It’s intuitive, easy to navigate, simple, easy to search, flexible, credible, up to date, and accurate.” Consumers have clear expectations for web experiences and will leave a site that does not measure up, Fun- derburk said. The ACA provides for penalties for those who do not opt to have health insurance coverage. This worries consumers, suggesting that clear explanations are needed about why there are penalties. Some evidence from Massachusetts suggests that the penalties encourage people to sign up and become engaged. The health insurance portal at HealthCare.gov continues to evolve. Comparative pricing information for health plans in the individual private market was added in October 2010 using displays that were informed by consumer testing. Plan costs and coverage are provided in standardized language giving consumers an opportunity to compare available plans. The plans are listed according to residence, age, and other demographic characteristics. The default listing of plans is by maximum out-of-pocket exposure, because research suggests that people tend to pay too much attention to premium cost rather than what they are purchasing for that premium. Consumers have options on how they want to review plan options. Funderburk concluded by saying that CMS is examining methods to improve consumer understanding, such as by building in context- sensitive tutorials. If a website user has difficulties navigating the site, then he or she could access instruction through the site. Additional work is ongoing, and results will be shared with interested parties.

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54 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION HEALTH INSURANCE EXCHANGES: FACILITATING CHOICE THROUGH HEALTH LITERACY INTERVENTIONS Rima Rudd, Sc.D. Harvard School of Public Health In 2006, policy makers in Massachusetts enacted a far-reaching health reform plan, creating what is known as the Massachusetts health insur- ance “Connector,” along with other reforms, Rudd said. Since then, the ACA has been enacted. As part of its expansion of health insurance cov - erage, the ACA relies on state health insurance exchanges to inform and enroll clients into suitable public and private plans. The objective of the state health insurance exchanges is to increase access, and its purpose is to help people make decisions to address their health care concerns and to mitigate their health care costs. How these exchanges are being designed is instrumental to their success (Box 4-1). Several guidelines have been designed to assist states as they develop their exchanges. For example, Rudd made note of Designing an Exchange: A Toolkit for State Policymakers2 as well as Preparing for Health Reform.3 She noted that available guides address the major issues states need to consider in order to provide a mechanism for helping their citizens make important decisions. Designing an Exchange, for example, includes very good information on what needs to be communicated and what people need to know. Rudd notes, however, that it is missing a key component: how to best communicate this essential information. States need guide - lines about rigorous processes (how to conduct formative research and evaluation studies), about design (what supports and what inhibits read - ing ease), and about web navigations (what key design elements make it hard or easy for people to use a web-based exchange). These are the criti- cal elements that a health literacy perspective brings to the table. Rudd provided an example related to work in Massachusetts. In 2007, a student attending Rudd’s health literacy class at the Harvard School of Public Health completed a health literacy assessment of the Massachusetts exchange website. Findings related to navigation and text barriers were shared with the state and a health policy committee so improvements could be made. Rudd revisited the site in early July 2011 and found that the site had undergone many changes (though she does not attribute them to the work mentioned). She noted the client interface is welcoming, the site features pictures of a diverse set of people and places, and testimoni - 2 Available at http://www.nasi.org/research/2011/designing-exchange-toolkit-state- policymakers. 3 Available at http://www.rwjf.org/files/research/57093.pdf.

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55 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES BOX 4-1 The Design of State Health Insurance Exchanges There will be a host of state-specific policy and administrative decisions that will need to be made in order to effectively and efficiently implement an exchange. These decisions will influence whether the exchange can help meet the objec- tive of increasing access to affordable health insurance for individuals and small businesses. SOURCE: Carey, 2010. als are provided from individuals and employers to give the new users a sense of options and issues relevant to people like themselves. Rudd found the website design to be well structured to permit the user to com - pare plans. There were some clear difficulties as well. For example, some charts were so complex and contained so many items that reading online was nearly impossible. One could still find jargon, complex vocabulary, unexplained concepts, and navigation barriers. These and other health literacy–related findings indicate some of the value of using a “literacy” perspective and some of the concerns state exchanges need to address. A health literacy perspective can provide guidance currently missing from a variety of how-to postings. First, formative research—those activi - ties undertaken to develop and then test important components of any program before it is launched—is a foundation stone for health literacy improvement (Doak et al., 1996). Some elements of formative research for the development of state health exchanges have been undertaken and have yielded important insights. For example, other panel members had previously noted that the information (content) wanted and needed by consumers is now well known as a result of surveys and marketing work. Furthermore, recent studies have identified the information that is most important to consumers. Less well known, however, is how best to present key information to consumers so they can use the information with ease. Awareness of the state of literacy among adults combined with well-tested communication strategies can help states provide information in ways that support com - prehension, that help with the often complex challenges of web naviga- tion, and that set the stage for informed decision making. Interviewing members of the intended audience at the draft stage can help developers test out various approaches. Giving members of the intended audience the opportunity to examine and comment on the content, the display, and the organization, as well as the words and concepts of materials in

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56 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION draft form, is critical. Such a review provides essential information on access, usability and relevance, clarity, and logic, as well as ordering and sequence. A second element missing in the guide’s table of contents is atten - tion to literacy directly, Rudd said. There is a general lack of recognition that close to a majority of adults in the United States have what could be labeled limited literacy skills—difficulty using print materials to accom- plish everyday tasks with accuracy and consistency (Rudd, 2007). Rudd made note of the limitations in the early work of health literacy research with its focused attention on the skills or deficits of individuals without due attention to the demands, assumptions, and skills of those in the health sector. Indeed, some of the difficulties people face in using health materials can be traced to the poor quality of the materials themselves. Information, including health education information or package labels, is often not clearly presented in usable and well-organized form. Over 1,000 published peer-reviewed studies indicate that health materials are written at levels that exceed the average reading skills of adults (Rudd and Keller, 2009). Rudd offered a reminder about the Institute of Medicine’s (IOM’s) health literacy report indicating that health literacy represents an interac - tion between the skills of individuals and the demands of the health sec - tor (IOM, 2004). The demands and expectations of the health care system must be balanced with the skills of the intended audience. The importance of improving literacy skills of adults has long been known, but modifica- tions of the demand side have been slow. Appreciation for the very sophisticated skills needed to engage in health-related tasks is of critical importance. Rudd recounted her experi - ence developing materials for teachers in adult education that would enable them to integrate health literacy into their curriculum. She focused on three areas related to health disparities: (1) health system navigation; (2) chronic disease management; and (3) disease prevention, screening, and early detection. At the start of this work in 1996, she assembled schol- ars from public health, medicine, nursing, and adult learning and literacy to analyze and deconstruct a variety of health activities within each of these areas. The purpose was to explicate the various tasks involved in critical health activities, the various tools needed to accomplish those tasks, and the literacy skills needed to use the tools and accomplish the tasks. Teachers would then be able to appreciate the value of their exper- tise and understand the relationship between literacy and health. A uniform process was undertaken for a wide variety of health activi- ties in each of these three areas. First, the study team identified common clusters of activities. For example, in the case of chronic disease manage - ment, one common activity is taking medicine as prescribed. This activity

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57 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES might include as many as 20 different tasks, from reading the label, dif- ferentiating between medicine A and medicine B, examining the dosage, to figuring out the timing. For each task, the team identified the tools that people need to complete the task. In the case of taking medicine, one considers the label on the bottle, the materials or package inserts, the directions offered orally, a clock, a calendar, or a phone. The study team then identified the literacy skills needed to accomplish these tasks and to use the associated tools (Rudd et al., 2006). A set of three fully articulated curricula was developed, piloted, implemented, and evaluated. The books have been and are currently being used in the adult continuing educa - tion programs of many states to instruct adult education teachers how to integrate health literacy into their classes. A similar process can be used to understand the activities people need to engage in as they use information from state health insurance exchanges to make decisions central to their lives. An understanding of activities, tasks, and tools can inform the design of booklets and websites. Table 4-1 provides a deconstruction example of two activities related to obtaining health insurance. A deconstruction analysis can help those responsible for crafting the materials consumers will use and, most importantly, provide insight for those in the state responsible for hiring individuals or agencies to design the appropriate tools. A designer must first understand the literacy skills needed to use tools and then shape the tools to meet the needs of the user. Evaluators can look at the health insurance booklet and ask about the reading level, or whether the writer avoids jargon, or whether the charts are easy to use. Responsible oversight can include demands and proof that evaluators engaged in piloting and revision. Such processes make TABLE 4-1 Access and Navigation Activities Tasks Tools Literacy Skills Examine • ead for R • ealth insurance H • ead R options relevant booklets • ave a medical H information • ights and R and/or economic • alculate and C responsibilities vocabulary compare costs lists • se charts U • Benefit charts • alculate C Apply for • ead form R • pplication A • rite responses W insurance for needed forms • se medical U information • inancial F vocabulary • eep/check K disclosure forms records • edical history M • Fill in forms • amily history F SOURCE: Rudd, 2011.

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58 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION materials more easily accessible and usable. When states hire contractors to develop their websites and print materials, they could require that these processes be put in place. A checklist could be developed for those engaged in this developmental work and used as standard for submis- sions. Rigor is required for such important work, Rudd said. Next, Rudd spoke about the notion of choice. The state health exchanges are being established to help people make informed health plan choices. Rudd provided four overlapping definitions of choose: (1) to select from a number of possibilities; (2) to pick by preference; (3) to prefer or decide; and (4) to want or desire. Choice, however defined, involves accessing information. To access information an individual has to locate it, be able to read it, comprehend it, and then use it. Therefore, key information must be locatable—found amid all the options and dis - tractions and the multiple elements of a website. It must also be readable, with words that are commonly used and concepts that are well explained. Most importantly, if people are expected to come to a decision, they must be provided with an opportunity to compare and contrast key items. Thus, designers need to identify important parameters and key items and make them easy to locate so users can examine like items for comparative purposes. Making health plan comparisons online is much more complicated than buying a commodity online, Rudd cautioned. Health plans involve complex concepts and processes while commercial sites appeal to style, image, and look. They can post pictures of the product with zoom options. Furthermore, products bought online or in person often include a return policy. Health-related decisions are far more complex and have conse - quences that cannot be resolved at a return desk. Health activities, such as choosing a health plan, must be understood, the tasks involved clearly defined, and then appropriate tools must be designed to support decision- making processes. Many websites take people through a linear process without leaving room for the kinds of activities that people generally undertake: take sev- eral steps, pause to think or to discuss with others, and return to the task at a later time. To help people compare and contrast health plans and then make a decision, the designers need to offer individuals time—an oppor- tunity to weigh and consider, to test out their decision with others, to reconsider, and then finalize it. From Rudd’s perspective, this is a design challenge. However, she believes that sophisticated website designers can establish mechanisms that accommodate people’s ability to log on and off the website as they obtain information, talk with family and neighbors, and then, after some time, return to the same area of the website visited previously without having to start anew. Decision aids that are respectful of the processes that people use have to be built into systems.

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59 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES Design protocols, contractor requirements, an emphasis on easy- to-navigate materials and tools, and worker training are all needed to enhance the ability of states to meet consumer needs. Rudd suggested that a successful model to emulate is the easy-to-use telephone call-in process already in place for Social Security applications. In addition, there are classic guides for assessing materials beyond just looking at vocabulary and readability scores (Doak et al., 1996) and advice on web design. Fur- thermore, this important undertaking can draw lessons from successful programs and practitioners who have engaged in outreach and educa - tion programs that have drawn on and work with community partners such as libraries, adult education programs, and social service agencies. Professionals in these settings are well positioned to help people access information, learn new processes, and use available information to make decisions and take action. For example, Rudd identified three community partners who have experience and insights to share: • Elyse Barbell and Winston Lawrence of the Literacy Assistance Center in New York City (NYC) have successfully partnered with the NYC Health and Hospitals Corporation, the NYC mayor’s office, and a variety of other organizations such as human immuno- deficiency virus (HIV)/autoimmune deficiency syndrome (AIDS) programs to enhance access to information, services, and care. • Christine Molnar4 completed work 10 years ago through the Com- munity Service Society in New York City working with and pro- viding training for community members in order to hold public forums to help people understand their health insurance options. • Archie Willard of New Readers of Iowa organized a group of people with acknowledged reading problems to improve health services in their state. Overall, Rudd noted, one must remain aware of existing data about the literacy skills of U.S. adults, consider the activities people are expected to undertake, and be sure to provide them with the best tools possible to enable them to take action. Rudd emphasized there is knowledge about existing literacy skills of adults in the United States as well as the untoward health consequences of low and limited literacy skills. Rather than continue to focus on, measure, and emphasize the public’s deficits, action must be taken. Communication skills must be improved, she said. Messages, materials, and tools must be designed so people can use them with ease. Improving health literacy involves attention to tasks and tools as well 4 Christine Molnar is currently CEO of Safe Space, NYC.

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60 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION as to words and numbers. It requires rigorous methods in the develop - ment and design of materials to ensure access to information. It respects the dignity of people, increasing participation by involving members of the intended audience in development and design. State health insurance exchanges are projected to be the gateway for approximately 29 million people gaining access to health coverage. The health literacy community is in a position to help states provide infor- mation, messages, materials, and programs informed by research and experience, Rudd said. Rudd mentioned a July 2011 discussion with Jeffrey Sánchez, a Mas- sachusetts state representative who serves as house chairman of the Joint Committee on Public Health, and noted his interest in health literacy and his recognition of its importance for all legislative communication efforts. She is optimistic that others will respond with similar enthusiasm. Rudd concluded her presentation by noting that health literacy is about promot- ing dignity and providing agency and voice to people so they can make informed choices. DISCUSSION Andrew Pleasant, roundtable member, observed that much of the discussion pertaining to health literacy and health insurance exchanges addresses enrollment issues, for example, the navigability of websites and adequacy of information to make plan choices. He said that it is as important for the exchanges to learn about health literacy so newly insured individuals can make informed choices about their health care. In addition to providing access, a central goal of the ACA is to lower cost. Pleasant asked the panel how the exchanges could use health literacy interventions to improve the use of preventive services and help newly insured individuals use the health care system appropriately. Rudd discussed the important distinction between informed choice and appropriate choice. An informed choice involves presenting informa- tion so people can weigh the pros and cons of alternative choices. It is the health professional’s job to make sure people make informed choices. Whether or not individuals make an appropriate choice is outside of the professional’s purview unless the choice involves an illegal health practice. Health professionals sometimes inadvertently block access to information because of bias or poor communication skills. Funderburk pointed out that there is no requirement under the ACA to evaluate health system change that occurs as a result of the law. How- ever, it would be informative to document changes in the use of preven- tive care and other cost-effective services. Learning from the experience

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61 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES of the different models that states adopt and identifying what is working will help states innovate and improve, he said. Moderator and roundtable chair George Isham pointed out that there is going to be variation across the country that is driven by local geogra - phy, local situations, and local cultures. This will add another dimension to the challenge of evaluation. For example, enrollment estimates from New Mexico suggest that a large fraction of the population will remain uninsured under the ACA. When evaluating the relative success of the ACA in improving health behaviors, will measurement be restricted to individuals who are enrolled under the ACA or will it encompass the entire population? When evaluating consumer choices, it may be difficult to judge which are appropriate given differences in values and prefer- ences across cultures. Rudd said that choice can be influenced by how information is provided. Some states may decide to use persuasive com - munication to influence choice. Will Ross, roundtable member, noted there is a disconnection between the knowledge, skills, and attitudes of the population, and the skills and the instruments being developed by the health insurers. He asked the panel how health care providers could work to improve the health lit- eracy of patients. Rudd replied using a metaphor, that of making soup. Soup is provided for nutritional value, so key ingredients of the soup are vitamins, mineral, proteins, and other sustaining substances. In addition to these core elements, the soup is enhanced by flavors and spices. One of the things that the health literacy community can do is help legislative bodies identify the core elements of their programs, for example, clarity of communication, and mechanisms to assess the products, such as websites and written materials. It may be advisable to require that states complete a checklist, in the same way that research investigators have to submit paperwork to an institutional review board, Rudd suggested. The check- list could include providing evidence that they have revised materials based on testing with members of the intended audience. There could be regulations about the product and its content, as well as regulations about the process of developing that product. This could be achieved if the key elements of a checklist could be identified and the process to complete it is not too complex or cumbersome. Ross asked Funderburk if there were incentives that CMS could pro- vide to encourage the kinds of processes described by Rudd. Funderburk replied by describing intensive consumer research that CMS is planning over the next few years that will involve a variety of audiences. The results will be disseminated to states. CMS will help states establish a certification procedure for their websites so there will be assurance that they have taken key findings from the research into account. One evalu- ation tool that has been informative is the examination of systems for

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62 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION positive deviance.5 This involves looking across the exchanges to identify successful outliers and then reviewing them to understand the elements that contributed to their success. The concept of positive deviance has been applied, often at a community level, to find out, for example, why children in one area are not suffering from malnutrition when they reside in cultural conditions very similar to other neighboring children. Looking into what is going on within the community to foster better nutrition can lead to insights for communities that are faring poorly. Reviews of the positive experience of selected exchanges will be infor- mative in the context of the state health insurance exchanges given the diversity of programs that will be in place, Funderburk said. For example, if certain plans that include a rich set of prevention or wellness programs are observed to reduce overall health care costs, the plan benefit structure may be adopted more widely. Funderburk pointed out that health literacy does not always have to refer to written materials. It can be applied to one community modeling the behaviors or experience of another com - munity. Information can be provided in a variety of ways, such as using photo novellas within the Hispanic community. Health literacy must be considered in broad terms, he said. Roundtable member Benard Dreyer asked if there were ways to reduce the numeracy cognitive load on individuals making plan choices. He pointed out that in terms of health literacy, numeracy is much more of a challenge for many people than understanding text. Selecting a health insurance plan requires numeracy skills. Rudd replied that research sug - gests that information can be provided in such a way that math calcula - tions are already completed (Apter et al., 2008). For example, clinicians are discouraged from saying, “Lose 10 percent of your weight.” Instead, providers are instructed to do the math and tell the patient exactly how many pounds it would be advisable to lose. When using a computer to compare health plans, internal programs can make the computations. Mathematicians have written extensively on this topic and have provided strategies to provide numerical data visually to ease its interpretation. Words in common use in medicine, such as risk, probability, likelihood, and normal range can be terribly confusing. Clinicians generally do not do a good job of communicating the meaning of these words. Needed are clear coherent explanations of these terms, Rudd said. Funderburk agreed that it is much easier to compute for individuals the formulations that are needed to determine eligibility. If an individual 5 “Positive Deviance is based on the observation that in every community there are certain individuals or groups whose uncommon behaviors and strategies enable them to find better solutions to problems than their peers, while having access to the same resources and facing similar or worse challenges,” www.positivedeviance.org (accessed August 25, 2011).

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63 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES provides his or her income, family size, and other information, a com- puter can calculate if he or she is eligible for Medicaid, for example, at 1.36 times the federal poverty level for a family of four. It is also instruc - tive to use scenarios with clients. For example, they can be asked, “Do you see yourself as being more like Jane or more like Joan? Joan likes this policy because it provides these benefits.” There are strategies to convey information and allow people to make choices that fit their circumstances. Dreyer added that the use of scenarios also helps consumers understand the implications of a plan’s out-of-pocket expenses, their potential deduct- ibles, co-insurance, and co-payments. Ruth Parker, roundtable member, asked Rudd about strategies to reduce consumers’ dread of the process of selecting a health insurance plan. Are there ways to lower the cognitive load associated with this pro - cess? In addition, she asked about strategies to reduce the distrust that some consumers have toward the insurance industry and government. Rudd indicated that this is a very worthy area of research. She discussed the lessons learned of the value of stories, of the importance and dignity involved in seeing people like themselves reflected in materials, and understanding that people other than themselves also face these diffi- culties and struggles. A notion of partnership can be conveyed visually and by tone. Such an approach to communication can build trust. Isham added that health literacy is a concept that has to be embedded in a larger notion of customer experience, in a system that is simple and approach - able, and encourages trust. Linda Harris, roundtable member, asked the panel to address the role of the human touch and the importance of relationship-based commu- nication. She pointed out that health literacy is not something that hap - pens naturally and then is sustained over time. Sustaining trust usually depends on having a trusted, ongoing relationship with someone who is helpful. Under the ACA, navigators are important intermediaries. They may be viewed as informed and trustworthy, and could play an impor- tant role in sustaining a focus on health literacy. Isham noted that not everyone needs one-on-one assistance, and it is important to provide the appropriate level of assistance to individuals. Some people will be able to navigate the system with the available technology, while others will need help. When in-person assistance is available, it must be readily available. There should not be a lengthy set of automated and recorded telephone prompts at the front end, he said. People should not be placed on hold for long periods of time. A systems approach is needed that steers people to the level of assistance they need. Dreyer asked the panel whether the information that will be provided through the exchanges is the information individuals want as they con - sider their options. Many people want to know who their doctor or nurse

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64 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION is going to be, where they are going to get care, and whether care will be accessible. Will this information be available to consumers? Funderburk said information about providers, including provider quality information, will be available. Currently, the commercial plan section of HealthCare. gov allows consumers to see if their provider is part of a plan’s network. Funderburk reiterated the need to reduce cognitive load. He sug- gested that with a few simple questions, the number of plans to be con - sidered could be reduced considerably. A few additional questions could further refine the selection process. The goal will be to narrow down the focus and to keep people moving through the process, he said. The infor- mation needs to be clear and customized to the consumer. IT tools can be used to help people interact with someone online or to connect with a navigator for one-on-one counseling. Rudd mentioned two oft-cited statements, “Don’t let the excellent be the enemy of the good,” and “Change inevitably involves suffering.” She pointed out that patience is needed as systems progress. The focus immediately is on developing some sound core elements. More core ele- ments will emerge over time as consumers become more sophisticated and desire additional information. Sharon Barrett, roundtable member, asked the panel how the IOM roundtable could help to further policies that would encourage the use of plain language communication and considerations of health literacy as states establish their health insurance exchanges. Rudd said that raising awareness is key. In her role in academia, she conducts evaluations and publishes and disseminates findings. She and her colleagues also develop tools and policies for consideration. For example, checklists pertaining to health literacy have been proposed for states to use with vendors to ensure that products that are developed meet basic health literacy standards. Roundtable member Andrew Pleasant asked how states could use incentives to encourage health personnel, health systems, and health insurers to embrace the best practices that health literacy has identi - fied, such as the teach-back method. Rudd described how putting ques- tions about the teach-back method on exams, especially licensing exams, encourages medical schools to teach the method. Arthur Culbert, round - table member, added that there is a tremendous opportunity for state- based organizations such as Health Literacy Missouri, Health Literacy Maryland, and Iowa’s health literacy project to work more closely with their state health insurance exchanges. The considerable expertise within these organizations can be leveraged. Lynn Quincy of the Consumers Union encouraged roundtable attendees to contact the exchange boards that are being established. Isham added that there is also an opportunity to have an effect by creating incentives to improve performance. This first

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65 HEALTH LITERACY RELEVANCE TO HEALTH INSURANCE EXCHANGES involves knowing how well the exchange is performing. Feedback loops are then needed to gauge both the overall performance of an exchange, as well as the performance of individual participants in the exchange. REFERENCES Apter, A. J., M. K. Paasche-Orlow,, J. T. Remillard, I. M. Bennett, E. P. Ben-Joseph, R. M. Batista, J. Hyde, and R. E. Rudd. 2008. Numeracy and communication with patients: They are counting on us. Journal of General Internal Medicine 23(12):2117-2125. Carey, R. 2010. Preparing for health reform: The role of the health insurance exchange. Academy Health. http://www.rwjf.org/healthpolicy/product.jsp?id=57093 (accessed September 11, 2011). Doak, C. C., L. G. Doak, and J. H. Root. 1996. Teaching patients with low literacy skills, 2nd ed. Philadelphia, PA: J. B. Lippincott. http://www.hsph.harvard.edu/healthliteracy. Funderburk, F. 2011. Communicating about health insurance options: Some evidence-based best practices. Paper presented at State Health Access Program All Grantee meeting. Na- tional Academy of State Health Policy and HRSA. Washington, DC, January 13, 2011. http://www.healthcarecommunities.org/showcontent.aspx?id=10951. HHS (Department of Health and Human Services). 2010. National action plan to improve health literacy. Washington, DC: Office of Disease Prevention and Health Promotion. IOM (Institute of Medicine). 2004. Health literacy: A prescription to end confusion. Washington, DC: The National Academies Press. Kotler, P., and N. Lee. 2008. Social marketing: Influencing behaviors for good. Thousand Oaks, CA: Sage Publications. Rudd, R. E. 2007. Health literacy skills of U.S. adults. Journal of Health Behavior 31(Supp 1):S8-S18. Rudd, R. E. 2011. Health insurance exchanges: Facilitating choice through health literacy interven - tions. PowerPoint presentation at the Institute of Medicine workshop on Facilitating State Health Exchange Communication Through the Use of Health Literate Practices, Washington, DC. Rudd, R. E., and D. B. Keller. 2009. Health literacy: New developments and research. Journal of Communication in Healthcare 2(3):240-257. Rudd, R. E., L. Soricone, and M. Santos. 2006. Health literacy study circles: Skills for health care access and navigation. Cambridge, MA: National Center for the Study of Adult Learning and Literacy. Sutton, S. M., G. I. Balch, and R. C. Lefebvre. 1995. Strategic questions for consumer-based health communications. Public Health Reports 110:725-733.

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