Current Best Practices in
Developing Materials and
Communicating with Consumers


Marilyn Maultsby
Centers for Medicare and Medicaid Services

Congress authorized the State Health Insurance Assistance Program (SHIP) in 1990, Maultsby said. SHIP was originally designed to help consumers navigate the many Medicare supplement insurance choices offered through the Medigap program. There were about 10 different versions of Medigap coverage, and each state had its own rules and regulations pertaining to these plans. Consumers were faced with a great deal of complex information in making plan choices. The Medicare Modernization Act of 2003 added to the complexity, with consumers having to interpret changes to the Medicare program, especially the addition of the Part D benefit for prescription drugs.

The SHIP programs are federally funded by the Centers for Medicare and Medicaid Services (CMS) and are state-based. An increased level of programming has necessitated the increase of funding and support for this CMS program. It has grown to administering $50 million in basic grants in fiscal year 2011, from $10 million in 1991. The state network of SHIP programs now helps consumers understand all of the available Medicare benefits and services and, in addition, assists clients with Medicaid, long-term care insurance, and other programs such as the State Pharmacy Assistance Programs.

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5 Current Best Practices in Developing Materials and Communicating with Consumers LESSONS LEARNED FROM THE STATE HEALTH INSURANCE ASSISTANCE PROGRAM (SHIP) Marilyn Maultsby Centers for Medicare and Medicaid Services Congress authorized the State Health Insurance Assistance Program (SHIP) in 1990, Maultsby said. SHIP was originally designed to help consumers navigate the many Medicare supplement insurance choices offered through the Medigap program. There were about 10 different versions of Medigap coverage, and each state had its own rules and regulations pertaining to these plans. Consumers were faced with a great deal of complex information in making plan choices. The Medicare Mod- ernization Act of 2003 added to the complexity, with consumers having to interpret changes to the Medicare program, especially the addition of the Part D benefit for prescription drugs. The SHIP programs are federally funded by the Centers for Medicare and Medicaid Services (CMS) and are state-based. An increased level of programming has necessitated the increase of funding and support for this CMS program. It has grown to administering $50 million in basic grants in fiscal year 2011, from $10 million in 1991. The state network of SHIP programs now helps consumers understand all of the available Medicare benefits and services and, in addition, assists clients with Med - icaid, long-term care insurance, and other programs such as the State Pharmacy Assistance Programs. 67

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68 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION SHIP provides one-on-one counseling to beneficiaries, Maultsby said. The interaction with consumers can take a variety of forms, from home- based, one-on-one counseling, to telephone counseling, and communica - tions at public events and fairs. There are 54 SHIP programs in the 50 states, the District of Columbia, Puerto Rico, Guam, and the Virgin Islands. Maultsby said that the grants to states and territories range from $37,000 (e.g., Guam) to $3 million and more (e.g., Pennsylvania, Florida, and California). During the last fiscal year (April 1, 2010, to March 31, 2011) the SHIP programs had over 2 mil - lion one-on-one client contacts. If we combine the number of one-on-one client contacts with people who were provided information and training at public outreach events, including enrollment events, close to 5 million people were served by SHIPs. There was a 6 percent increase in the number of client contacts in the 2010 grant year compared to the prior grant year, Maultsby said. Of the roughly 15,000 counselors providing assistance, more than half are vol - unteers (57 percent). Recruiting, training, managing, and retaining volun- teers is a very large undertaking. Ensuring that the volunteer coordinators receive sufficient training to manage the large and changing volunteer staff is very challenging to SHIPs. Providing training in volunteer man- agement to SHIPs has been a CMS priority this past year. Local SHIPs sponsor public and media outreach activities in conjunc- tion with their CMS regional offices. There are 10 regional CMS offices across the country, and a number of partners at both the federal and local levels engaged with SHIPs in approximately 63,000 outreach events this past grant year compared to 55,000 the prior year. These efforts reach ben- eficiaries from all racial and ethnic groups and urban and rural areas. A penetration rate of SHIP services has been estimated using a formula that takes into consideration the number of beneficiaries served in counties, by zip code. This allows program directors to examine if they are reaching beneficiaries according to income level, such as in targeted geographic areas, Maultsby said. The goal of the SHIP program is to provide local access to services. Having a 1-800 number at the state level is insufficient. Counselors need to be available at the local level to understand and meet local needs. An approach that works well in an urban area may not work well in a rural area. States have to devise different ways to provide information. In many rural areas, for example, there is no Internet access. The Iowa SHIP has developed a circuit rider program where counselors drive to areas on a regular basis to provide information and one-on-one counseling to beneficiaries. To ensure that the information that counselors provide is accurate, timely, and appropriate, training is provided on a regular basis, Maultsby

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69 CURRENT BEST PRACTICES said. The state SHIP training programs vary, but there is a core set of infor- mation that programs must include that is based on CMS National Medi- care Training Program (NMTP). Some states have a 1-week or 3-week face-to-face training period for counselors while other states may rely more heavily on online training tools. The online training is particularly popular for counselors in rural areas with Internet access because of the reduction in travel time and costs of trainers and volunteers. Face-to-face interaction with a trainer supplements the online training and reinforces the information learned online. CMS provides an online counselor certi - fication tool that SHIPs may use to certify their counselors. The tool also helps to identify areas where additional training may be needed. SHIPs are asked to implement quality assurance activities. In addi- tion to a certification program, some SHIPs have used tools such as the Mystery Shopping Toolkit (developed in collaboration between CMS and SHIPs) to identify shortcomings in information learned and any need to retrain counselors on particular topics. Maultsby said she visits about eight or nine SHIPs a year to familiarize herself with local issues and concerns and identify best practices and opportunities for intervention and for program improvement. The SHIP network has had a data system in place since 1998 to cap- ture client contact information and information on outreach activities and (human) resources that are being used to counsel and inform ben - eficiaries and their caregivers. According to program data, beneficiaries generally learn about SHIP programs through other agencies or service providers, such as the Social Security Administration or a senior cen- ter, Maultsby said. Other beneficiaries have had previous contact with a SHIP, or learned about the program through the CMS Medicare website, a brochure, mailings, or the 1-800-MEDICARE telephone number. The 1-800-MEDICARE line often refers calls to the SHIP program, so coun- selors can provide more detailed information. Friends and relatives and state-specific sponsored events represent other opportunities for benefi - ciaries and their caregivers to learn about SHIP. The SHIP program likes to include caregivers as part of their target audience because beneficiaries, especially elderly beneficiaries, often rely on caregivers for information and support while making decisions. In terms of how beneficiaries are contacted through SHIP, an esti- mated one-quarter of the 2 million contacts made are through phone calls, Maultsby said. Face-to-face communications at the 1,300 local counseling sites or an outreach event is the next most common type of contact. The SHIP sites are located in a number of different offices including state area agencies on aging (AAA), senior centers, and Retired Senior Volunteer Program (RSVP) volunteer sites. In order of frequency of use, next are face-to-face client contact at the client’s home or facility, and then, pro -

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70 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION viding information by e-mail, fax, and mail. E-mail is becoming a more popular vehicle for communicating with beneficiaries. Maultsby said that the most frequently discussed topics during SHIP- beneficiary encounters are Medicare Parts, A, B, C, and D. Beneficiaries have questions about their benefits, eligibility, claims and billing, the appeals and grievance process, and issues related to fraud and abuse. There are also issues concerning union plans, Veterans Affairs (VA) ben - efits, Medigap plans, and long-term care. When indicated, counselors discuss the Children’s Health Insurance Program (CHIP) because benefi - ciaries may have grandchildren or nieces and nephews that are in need of insurance coverage. With the passage of the Patient Protection and Affordable Care Act of 2010 (ACA), SHIPs are in a position to provide information about preexisting conditions, insurance plan coverage, or refer individuals so they can obtain information from the upcoming state exchanges about coverage options available to them. CMS communicates with SHIPs in several ways, Maultsby said. There is a daily e-mail list on CMS policy and key initiatives. A monthly SHIP Forum Call is held to provide opportunities for training and feedback from SHIPs. These calls also allow for discussions of updates on CMS policies. There is a SHIP Steering Committee composed of SHIP directors that meets with the CMS Division of SHIP Relations on a monthly basis to address funding and policy issues and to discuss support tools for the SHIP network. SHIP counselors rely on the CMS Plan Finder tools at the www.medicare.gov website. This site allows beneficiaries to compare health plans. Information about plans may be mailed to beneficiaries and their caregivers so they can review the information and make an informed decision. SHIP counselors provide enrollment assistance using available tools from CMS and other agencies. Maultsby said that Medicare beneficiaries tell the SHIP counselors that CMS information is becoming more complex. In response, CMS is examining ways to make systems more user-friendly, such as by using simplified charts, graphs, and diagrams to explain plan information. Print materials are being written using a plain language format that can be understood by consumers. Maultsby described some of the challenges facing SHIP. First and foremost are state budget shortfalls. The state government in Minnesota, for example, recently shut down, and SHIP services had to be stopped because they were not determined to be a high priority. The SHIP was able to work with other partners so some services could be maintained. Another challenge facing SHIPs is the increasing demand for services, particularly from baby boomers and from returning disabled war veter- ans. A third challenge is the increasing complexity of Medicare informa - tion. This complexity contributes to the need for more time to adequately

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71 CURRENT BEST PRACTICES counsel a beneficiary. The average time spent counseling a beneficiary increased by 15 minutes over the past 4 years, so that it now takes an average of 37 minutes. Baby boomers seeking information from a SHIP are taking up more of a counselor’s time because they tend to desire more information and want to discuss (and sometimes challenge) the informa- tion that is provided to them. A fourth challenge is the shifting role of SHIPs from that of educator and counselor to case manager and public benefits coordinator. And so, in addition to providing information and referrals pertaining to health care benefits, SHIPs are connecting people with housing, social services, and household needs such as food stamps and utility assistance. SHIPs are increasingly partnering with other fed - eral agencies (e.g., Department of Housing and Urban Development, Department of Agriculture) and state programs to take a more holistic approach to providing services to beneficiaries. Maultsby concluded by pointing out that SHIPs are addressing some of the same issues that the state health insurance exchanges have to address. SHIP counselors, for example, help beneficiaries understand plan benefits and costs and make decisions that are suitable to their circumstances. HEALTH PLANS AND HEALTH LITERACY: LAYING THE FOUNDATION AND BEYOND Susan Pisano, M.A. America’s Health Insurance Plans Pisano said that America’s Health Insurance Plans (AHIP) Health Literacy Task Force represents 50 health plans. The goals of the AHIP task force are to: • Increase awareness of health literacy (leading to more health lit- eracy programs), • Identify and develop tools for plans to start up and advance their programs, and • Share information and best practices. Health plan representatives who sit on the task force include a diverse membership: medical directors, nurse educators, a pharmacist, and pro- fessionals engaged in the quality enterprise, cultural competency, dispari- ties in health, and communications. Health literacy programs within the association’s membership emerge from very different places within the plans represented on the task force. The task force meets monthly, Pisano said. Recent speakers have

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72 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION included Institute of Medicine (IOM) Roundtable on Health Literacy members Arthur Culbert and Cindy Brach, as well as Pamela Peterson, who is the lead author from Kaiser Permanente’s recent study on health literacy and outcomes among patients with heart failure (Peterson et al., 2011). Tools developed by the task force include the following: • A health plan assessment tool allows plans to judge whether their infrastructure can support good health literacy programs. This tool, developed with Dr. Julie Gazmararian of Emory University under a Robert Wood Johnson Foundation (RWJF) grant, has been pilot-tested in 18 plans and is now in general use.1 • A toolkit outlines the five basic steps to start and advance a health literacy program. • A model policy is available for organizations to adapt and adopt health literacy programs. • A mentoring program matches professionals from health literacy programs that are more advanced with people in companies that are at the early stages of program development. Pisano said that progress has been achieved as a result of these efforts. Health plans have contacted the task force to learn more about the available tools. In addition, new members have been recruited to the task force. Health plans with some health literacy activities under way are enhancing their programs. AHIP is writing a book based on interviews with plan representatives to publicize programs and their components. Some questions about health literacy were added to an existing sur- vey AHIP conducts that focuses on disparities, Pisano said. The disparities survey is supported by the RWJF. Results from this survey have allowed AHIP to track the progress made by member plans. In 2008, 69 percent of AHIP members had some elements of a health literacy program. By 2010, 83 percent of plans had a health literacy program. Roughly half of these health literacy programs were housed within the health plan’s dispari- ties or quality improvement initiative. Health literacy activities have also been integrated into programs directed to improve cultural and linguistic services or patient satisfaction. Companies were asked if they had in place certain components of a health literacy program. The following are some responses: 1 Some plans have used the organizational assessment as a way to jump-start a program, while others have used the assessment as a planning tool; many use it both ways.

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73 CURRENT BEST PRACTICES • In 2010, almost all health plans were adopting a targeted reading level for written consumer communication (90 percent) and stan- dardizing member communications in clear, plain language (81 percent). • Since 2008, health plans improved awareness and training among plan staff on the “principles of clear communication,” specifically those who prepare written communication for members or those that interact with members (58 percent to 71 percent in 2010). • Sixty-seven percent of health plans in 2010 were ensuring that all documents, including those translated from English into other languages, met a targeted reading level. • About two-thirds of health plans have adopted a company-wide approach to clear communication through the development of policy and procedures. The AHIP task force asked companies to report if they had com- pleted specific activities related to improving the readability of written documents for their members. By 2010, almost all plans aimed to write materials in clear and plain language and aimed to meet a target reading level. Other methods reported to improve readability include avoidance of jargon and medical terms, and inclusion of materials in languages other than English. Many plans have brought together teams of professionals from all of the units that touch consumers via the written or spoken word to address health literacy, Pisano said. Some companies have included lawyers and compliance staff. Many have assessed their organization’s practices to determine if they have the infrastructure in place to provide clear, easy- to-access and easy-to-use information. Forms and materials from their member services area and nurse call-in area are among those being evalu- ated with the AHIP assessment tool. Virtually all plans have adopted a targeted reading level, Pisano said. Many plans have conducted inventories of jargon and acronyms used in the company and have put together tools with words to avoid and words to use as alternatives. These are generally company-specific as companies have tended to develop their own languages. Pisano said that many plans have checklists (and some use elec - tronic tools) for evaluating written documents. These are composed of the important elements for assuring that the documents conform to prin - ciples of clear health communications. Typically, the companies have an extended backup guide to help staff so they have the information they need to do a good job of developing documents. Increasingly, there is a company-wide requirement that new documents and those being revised must conform to principles of clear health communication.

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74 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION Many plans have provided training to a broad group of employees, first to increase awareness and then to enhance skills. One of AHIP’s member companies requires all of its employees to have at least a basic understanding of health literacy and plain language. This company has recognized that providing clear information to patients improves patient satisfaction and loyalty to a health plan, Pisano said. There is some pre - testing, particularly of major documents, but this is expensive. Plans are creative about measurement and feedback. Some may informally test materials with employees within the company who do not have respon - sibilities for medical or benefits information. Some plans have begun their work focusing on medical information, while others have prioritized benefits information. Pisano concluded by saying that work on improving written com- munication tends to be at a more advanced stage than work on verbal communication. However, work in both areas is flourishing. DISCUSSION Cindy Brach, roundtable member, asked Maultsby how the model of using volunteer counselors within the SHIP program might be applicable to the state health insurance exchanges. She asked Maultsby to provide further information about how volunteers are recruited and trained, if there are retention problems, and how the quality of the volunteers’ work is monitored. Maultsby said that the role of navigators or counselors who can provide one-on-one assistance is essential to the success of any pro- gram. The SHIP program follows a case management model to support beneficiaries. About half of the SHIP volunteers are 65 and older. The SHIPs are looking for new models to recruit volunteers, Maultsby said. For example, 3 years ago the Ohio SHIP developed the Counselor, Recruiter, Educator, Administrator, Marketer (CREAM) Team. To encour- age recruitment, volunteers were welcomed to assume any of these roles. This strategy has worked well. Having a sufficient number of trained counselors is essential to SHIP’s success. Some counselors specialize in one aspect of Medicare coverage, such as Part D. This is acceptable as long as the counselor can refer a client to others to address questions related to other topics. Maultsby said that SHIP has sometimes used college students during the annual open enrollment period, and particularly pharmacy students. These students are adept at helping beneficiaries compare Part D plans, taking into account the number and type of medications that the client is taking. Some of the college students return year after year, or intermit - tently during the course of the year to provide counseling services. Maultsby described a trend over the last 3 years of a greater degree

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75 CURRENT BEST PRACTICES of turnover among the volunteers. However, the absolute number of volunteers has increased. Turnover with SHIP directors has been prob - lematic, Maultsby said. One-quarter to one-third of the SHIP program directors needs to be replaced each year. These are primarily midlevel state employees, and they tend to advance to other positions within state government or gain employment with health plans. In terms of quality monitoring, CMS evaluated the SHIP programs using mystery shopping telephone calls or visits and identified access problems in some state programs, Maultsby said. For example, the anony- mous shopper would call the programs and there would be no answer, or the call took 3 or 4 days to be returned. When visited, some of the programs were not staffed, or the personnel were out to lunch. Counselor knowledge of key Medicare information in the form of scenarios was tested through calls or visits to the programs. This evaluation technique was too expensive to maintain on an ongoing basis, and so a mystery shopping toolkit was developed under contract to provide states with guidance on how to develop the scenarios, conduct the anonymous calls and visits, protect confidentiality of information, and analyze the data. This technical assistance has helped states conduct evaluations of their SHIPs, Maultsby said. Some states also conduct customer satisfaction surveys. Yolanda Partida, roundtable member, asked Pisano if the health lit- eracy projects that are going on in the health plans around written com- munication are being shared across plans. Pisano said that she had been conducting interviews with 30 plans so she could learn of the various ongoing projects and then share that information with other plans. Round- table chair George Isham added that some of this work has been stimu- lated by discussions held at the IOM roundtable meetings. Pisano agreed and mentioned that a roundtable member, Carolyn Cocotos, encouraged the AHIP task force to develop a strategic plan. A strategic plan has been developed and is reviewed and updated annually. Lynn Quincy, Consumers Union, asked Maultsby if there was a mech- anism for the SHIP counselors to collect program feedback that is shared with CMS. In reply, Maultsby discussed the Division of SHIP Relations Response Team. This team includes three people who respond to inqui - ries, suggestions, and comments that come in through the CMS SHIP mailbox. If there are questions that concern CMS policy, there is a list of CMS subject matter experts who are contacted for answers. The answers are shared throughout the program. Counselors have access to a list of frequently-asked questions through the SHIP website. Quincy asked if, for example, a number of clients had difficulty under- standing the term Part D, and if the counselors had success explaining Part D using other terms, would there be a mechanism for sharing that type

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76 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION of information with policy makers? Maultsby indicated that the response team would be one way to share such information. Another dissemination vehicle is the Communications Subcommittee of the SHIP Steering Com - mittee. The steering committee includes nine SHIP directors elected from among the SHIP network. This subcommittee reviews the Medicare and You Handbook and beneficiary letters. Each year, as the Medicare handbook is updated, the SHIP network serves as a focus group to vet information and content. Information is also shared during the monthly SHIP Forum calls. These calls sometimes include the Aging Network.2 There can be as many as 300 participants on those calls. Ruth Parker, roundtable member, asked Pisano about her insights concerning incentives for plans to reduce the cognitive load for consum - ers, and thereby reduce the dread that consumers feel when having to choose a plan. Parker noted that standardization of content can decrease cognitive load, and this may be part of the answer. Pisano cited some of the results of the consumer testing discussed by Quincy. That research suggests that consumers are extremely happy with a template and a suc - cinct summary of the essential elements of a plan, as long as it is very clear where additional information is available and is easy to access. The option of easily accessing additional information engenders trust. There has been a tendency to tell potential enrollees everything they might want to know, or ever need to know, Pisano said. Refocusing efforts on what consumers want and need to know is a major shift in educational strategy. The research literature also identifies the effect that health literacy has on a plan’s bottom line. If patients are engaged, they will have better health outcomes. Successful patient engagement depends on the quality and clarity of the information that is provided. One audience member commented on the communications within and across SHIPs, saying that these communications provide an oppor- tunity for feedback, interaction, and dissemination of research results to the SHIP counselors so they can integrate these findings into their prac - tice. SHIPs have also been involved in incentive programs. For example, enrollment in the low-income subsidy was a performance requirement. The SHIPs were able to earn bonuses to supplement their general grant if they documented meetings with clients who were eligible for the sub- sidy. Some of the SHIP activities have relevance to the work of navigators within the exchanges, he said. 2 The National Aging Network is a program of the Administration on Aging (AoA). AoA awards funds for nutrition, supportive home and community-based services, disease pre - vention/health promotion services, elder rights programs, and caregiver support programs to state units on aging, Area Agencies on Aging, tribal organizations, and native Hawai - ian organizations. Available at: http://www.aoa.gov/AoARoot/AoA_Programs/OAA/ Aging_Network/Index.aspx (accessed August 12, 2011).

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77 CURRENT BEST PRACTICES Maultsby said that it is important to include providers, especially primary care physicians, in the information exchange. She asked if there is a role for SHIPs to be providing outreach to doctors’ offices to move the health literacy agenda forward. Isham discussed the importance of community collaboration to bring all relevant parties together. There are many opportunities to create community conversations around health literacy that involve doctors, hospitals, health plans, and others, he said. Another audience member suggested that navigation programs could be assessed using a model such as the institutional review boards. Pisano discussed the feasibility of having a checklist of items against which to evaluate an exchange or a navigator program. An important item on that checklist would be local community engagement. Maultsby said that consumer input at some level is necessary so local needs and available services are recognized at regional and state levels. The audience mem - ber stated that input from the navigators is also key to program success. Isham agreed and highlighted the need for people working within a system to be integrated into the feedback loop so their knowledge and experience can be harnessed to improve services. An audience member noted that many of the brochures provided in clinic settings are very technical. Some of these are written and distrib- uted by pharmaceutical companies. She asked the panel if there were incentives that states could put in place that would encourage resource providers to develop materials with health literacy in mind. Roundtable member Margaret Loveland described Merck’s health literacy program. At Merck, all patient educational materials are reviewed using a health literacy checklist. One factor that prevents materials from adhering to health literacy practices is the inclusion of information about branded products. If they include such information, the material must mention the fair balance information3 on the product label. This product information is generally not written to adhere to health literacy best practices. Dis- cussions about the need for improvements in product labeling informa- tion are ongoing with the Division of Drug Marketing, Advertising, and Communications of the U.S. Food and Drug Administration. Loveland indicated that Merck’s unbranded print materials are improving and that other pharmaceutical companies are also considering health literacy in their communications. Isham discussed the roundtable’s work on phar- maceutical labeling (IOM, 2008) and wondered if similar issues might arise for state health insurance exchanges if there are legal requirements regarding disclosure of health plan details. He asked whether any such 3 “In direct-to-consumer advertising, fair balance refers to the presentation of accurate and fair assessment of the risks as well as the benefits of the drug.” Available at: http://www. pharma-mkting.com/glossary/fairbalance.htm (accessed August 25, 2011).

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78 FACILITATING STATE HEALTH EXCHANGE COMMUNICATION requirements compromise the exchanges’ ability to provide plan informa- tion in easy-to-understand terms. Parker added that pharmaceutical companies are finding that there is a return on investment when they use health literacy principles as part of their marketing practices. Pisano mentioned that AHIP’s model policy encourages member plans to only contract for the development of materials with vendors who have staff who are knowledgeable about health literacy. Progress will be made as private companies and govern- ment agencies require vendors to state how they are going to ensure their products will comply with principles of clear health communication. REFERENCES IOM (Institute of Medicine). 2008. Standardizing medication labels: Confusing patients less. Washington, DC: The National Academies Press. Peterson, P. N., S. M. Shetterly, C. L. Clarke, D. B. Bekelman, P. S. Chan, L. A. Allen, D. D. Matlock, D. J. Magid, and F. A. Masoudi. 2011. Health literacy and outcomes among patients with heart failure. JAMA 305(16):1695-1701.