Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary (2009)

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5 Emerging Tools and Strategies A Guide for Developing and Purchasing Successful Health Information Technology Cindy Brach, M.P.P. Senior Health Policy Researcher, Agency for Healthcare Research and Quality The Agency for Healthcare Research and Quality (AHRQ) is a leader in the field of health information technology (HIT). It has an extensive HIT portfolio and operates the National Resource Center (NRC) for HIT. Previous speakers have noted that there is not a great deal of awareness about health literacy issues in the IT world and that we need to raise that level of awareness. As an evidence-based agency, AHRQ wants to put forward what is known in the field about better ways of developing HIT that will lead to more effective ways to communicate effectively with all audiences. The NRC was asked to develop a health literacy guide for HIT developers and purchasers. The project was managed jointly by Prashila   NORC (the National Opinion Research Center), “in cooperation with several partners, has led the development of a national resource center (NRC) for AHRQ’s Health Information Technology (health IT) initiative. The AHRQ NRC supports over 100 AHRQ HIT grantees, five State and Regional Demonstration (SRD) projects working toward health information exchange, as well as 33 states and one territory working on a Health Information Security and Privacy Collaboration” (National Opinion Research Center, 2008). 73 

74 HEALTH LITERACY, eHEALTH, AND COMMUNICATION Dullabh and June Eichner. The goal of the guide is to assist developers, the people who are creating new software programs, to become more aware of and more knowledgeable about health literacy issues. For pur- chasers, the guide includes a checklist of things they should look for when evaluating whether to buy a particular HIT product. The project first reviewed the literature, both the IT and HIT literature, to find out what was known about ways to develop health information technology so that it would be accessible to limited-literacy audiences. Project staff also looked at various products and websites such as MiVIA. Finally, project staff held discussions with individuals who develop and purchase HIT as well as with researchers involved in the evaluation of HIT for limited literacy populations. Not surprisingly, the literature on developing accessible health infor- mation technology for limited-literacy audiences is scanty; very little has been published about the best way to proceed. As discussed in this workshop, there may not be a single “best” way; instead systems should be adapted to a particular community or population. AHRQ views health information technology as including personal health records, electronic health records, and health information exchange. The guide covers a number of different types of technology that can be used to convey health information to various audiences, including Inter- net websites, touch screen kiosks, personal wireless devices (e.g., cell phones, BlackBerrys, and personal digital assistants or PDAs), and home monitoring devices. The guide promotes the use of universal basic design principles. First, use a simple structure with clean looks that highlight important elements. Second, build well, taking advantage of the technology inherent in the application in order to give consumers choices. Finally, for Internet sites, it is important to use HTML rather than other formats because HTML is more accessible to consumers. An example of a simple design is shown in Figure 5-1. This design, which is still in testing, is a version of an update to prevention information in healthfinder.gov, which has been attempting to find which approaches are more responsive to and work best for consumers. As can be seen, the design contains only five headings of two or three words each: (1) Eat Healthy, (2) Get Active, (3) Get Screened, (4) Quit Smoking, and (5) Watch Your Weight. Each of the subsequent Web pages takes a similarly clean approach, presenting quite a bit of information but in a clear, simple, and understandable way. Much of the guide adheres to current guidelines for print materials.   The guide is called Accessible Health Information Technology (IT) for Populations with Limited Literacy: A Guide for Developers and Purchasers of Health IT. It is available on AHRQ’s National 

EMERGING TOOLS AND STRATEGIES 75 FIGURE 5-1 Simple design. SOURCE: Brach, 2008. Figure 5-1, bitmapped For example, the content should assume that the browser has little or no background knowledge, information should be relevant to users, it should deliver a limited number of messages, and it should use numbers and percentages that are appropriate. Furthermore, one should use graph- ics only if they clarify text. There should be white space, lines should be short, and text should be broken up and chunked. Text should be in a large and familiar dark font on a light background, and there should be a consistent use of font sizes and styles with both upper and lower case letters, and justification to the left-hand margin only. It is also important to develop content that is culturally competent. Guidelines for cultural competence require content that is culturally appropriate and sensitive to users, and that members of groups be por- trayed accurately in pictures and other graphic illustrations. The guide- lines also require that translation from English be accurate and that idi- oms and expressions be appropriate. Iterative testing is critical. The recommended process is to draft a prototype, conduct a team review and a review by health-literacy experts, Resource Center for Health Information Technology at http://healthit.ahrq.gov/portal/ server.pt/gateway/PTARGS_0_3882_803031_0_0_18/LiteracyGuide.pdf. 

76 HEALTH LITERACY, eHEALTH, AND COMMUNICATION and then revise the prototype based on the results of that review. After that, the revised design should be tested with a target audience that is culturally diverse and that includes limited-literacy members. During the test the audience should be observed using the technology, they should be asked about their experiences, and their comprehension should be assessed. Based on this test, the technology should be revised again and, if the technology will be in multiple languages, it should be tested in all those languages as well. Some considerations are specific to HIT. For example, design needs to be usable with both old and new hardware and software. Some users may have black and white monitors, some may have slow Internet connections that would take a very long time to load fancy images, and some may not have the plug-ins needed to access complicated graphics. The home page of the website must be simple, and information should be prioritized with a minimal amount of text per screen. Furthermore, it is important that navigation is simple and consistent, with minimal need for scrolling. Lim- ited-literacy individuals often have great difficulty with the concept that they have to scroll down to obtain more information. AHRQ frequently uses the three-click rule, that is, one must get users to the information in three clicks or face the possibility of losing them. Searching must be simplified, as it is one of the more difficult opera- tions for individuals with limited literacy. They frequently misspell words, and they may find it difficult to understand the search engines. The site should have clearly defined hyperlinks and a printer-friendly option. Audio transcription is an option to consider, especially for people who have difficulty reading or seeing, as well as for those who have a hard time finding information, particularly such things as instructions for using home health equipment. It is also a good idea to give users information about how to call for assistance. Certain lessons have been learned about the use of computer kiosks. For example, it is important to have a practice session to familiarize users with the eLearning method. There should be one idea or question per screen and information should be limited to what is needed to manage the health problem. There should also be an option that allows the user to repeat a message and there should be some kind of teach-back built in so that learning can be reinforced. Again, audio transcription should be considered. The guide also discusses personal wireless devices. When developing programs for these devices for use by adults with limited literacy, reliance on text should be minimized, and text messaging should be simplified. There are a number of ways to make home monitoring devices such as glucometers and blood pressure cuffs easier to use including limiting the number of steps needed to use the device, using large keys with clear 

EMERGING TOOLS AND STRATEGIES 77 icons, including a self-calculating feature, and adding voice instructions and results. Clear presentation of results is important. For example, a person with limited literacy will find it easier to understand a message that says “Your blood sugar is too high” than one that provides a number that must be interpreted. Instructions should be clear and easy to follow, using simple print and video tutorials with illustrations for each step of use. One should avoid very small fonts and technical medical language, for instance. Critical components or warnings should be emphasized. Brach concluded by saying that, in thinking about the future it is important to start incorporating literacy and health literacy considerations into the development of personal health records and ePrescribing. Discussion George Isham, M.D., M.S. HealthPartners Moderator One audience member said that many of her patients who use the Internet have difficulty so they look for a telephone number to call to obtain assistance. Yet, she said, it is usually not possible to find a tele- phone number. The audience member urged AHRQ to be careful about posting guidelines on telephone use if there is not someone available to receive calls. Brach agreed that it was important to have someone avail- able to answer calls. Another participant asked if Brach could elaborate on what she meant when she talked about making information culturally relevant. Brach responded that some of the things one might look for are whether the graphics are relevant to the population. Unfortunately, there is not a sci- ence base that one can point to and say, if one follows this checklist, one will be culturally competent. It is a very complex issue. Another audience member pointed out that there does not seem to be a consensus about what the three to five actionable items are that could lead to quality improvement in various areas. What is it that everyone needs to know how to do in order to improve diabetes outcomes, for example, or asthma outcomes? It is a great deal easier to build platforms for communicating if one agrees on the actionable points. Any leadership or guidance that AHRQ can provide on how to do a better job of coming up with some common consensus about what one needs to know about health literacy would be very helpful. Brach responded that AHRQ and those in the Department of Health and Human Services (HHS) working on healthfinder.gov have been in the process of building consensus on the top prevention and health promo- 

78 HEALTH LITERACY, eHEALTH, AND COMMUNICATION tion messages. They started with an exhaustive search of all HHS docu- ments and have winnowed the material down to five messages. So there is recognition that this is an important avenue to pursue. One audience member asked if AHRQ is tracking who is asking for and using the health literacy guide and if there are plans to determine whether or not the guide makes a difference. Brach responded that AHRQ tracks the number of hits and downloads of the document, but it cannot collect information about who is using the guide and what their experi- ence is. It might be possible to conduct a study to examine those issues. Health Literacy, Health Information Technology, and Healthy People 2020 Linda Harris, Ph.D. Lead, Health Communication and eHealth Team Office of Disease Prevention and Health Promotion Charles P. Friedman, Ph.D. Deputy National Coordinator for Health Information Technology Department of Health and Human Services Healthy People is a comprehensive set of national 10-year objectives that provide a framework for public health priorities and actions, Harris explained. As many know, Healthy People 2010 has a communication focus and, within that focus, one of the objectives is to improve and address limited health literacy. Other topics in the 2010 communication focus area are meaningful access to the Internet, health website quality, research-based health communication with an evaluation component, and supporting patient-provider communication. Planning for the Healthy People 2020 is now under way, with the mission, the vision, and the objectives yet to be defined. Work began in 2005 with meetings of experts to provide suggestions for how it should be organized. In 2007 this group presented its ideas. The year 2008 has been and will continue to be focused on building a framework for Healthy People 2020. During 2009, measurable objectives will be developed and, in 2010, Healthy People 2020 will be launched. The group of experts involved in the planning of Healthy People 2020 presented a different approach from the alphabetical categorization of objectives in Healthy People 2010, proposing two major focus areas. The current idea is that the primary focus would be on risk factors and deter- minants of health, that is, on the primary factors related to health and disparities. The secondary focus would be on diseases and disorders. 

EMERGING TOOLS AND STRATEGIES 79 The intent is that Healthy People 2020 create a systems view of health, to organize it around different contexts and different important factors. There are three high priorities in public health. First is prevention, second is preparedness, and third is HIT. In late 2007, the Office of Disease Prevention and Health Promotion, the Office of the National Coordinator for Health Information Technol- ogy, and the Centers for Disease Control and Prevention (CDC) formed a federal interagency subgroup on health communication and information technology. The purpose of the group is to create a vision and project a future in which health communication and information technologies sig- nificantly advance the goals of Healthy People 2020. Public forums, a blog and a wiki will provide an opportunity for input from the public about how health literacy is important and the role that health literacy should play in the development of the framework for Healthy People 2020. Friedman said that it is fascinating, exciting, and an enormous chal- lenge to combine health literacy, health information technology, and health communications as a major foundational element of the Healthy People 2020 activity. The Office of the National Coordinator (ONC) for Health Information Technology, in collaboration with a large number of people, has been working to conceptualize a vision of what information technol- ogy might look like in the future and to develop a national 5-year HIT stra- tegic plan (2008 to 2012). Efforts in this area began in 2007 and the plan is in the final stages of federal clearance. The plan has two broad goals. The first goal centers on person-focused health care. In addition to discussing the hardware and software aspects of IT, much of what is discussed in the plan will address the person–focused aspects of health care. Furthermore, the plan envisions IT as a means to achieve a healthier population. A second goal concerns the improvement of population health. The plan defines population health as having four components: public health, preparedness, biomedical research, and health care quality improvement. The plan is national in scope and is federally focused, setting forth a set of strategies that can be undertaken across a broad range of federal agencies. Each of the two goals in the plan has four objectives with measurable outcomes. For the eight objectives there are a total of 43 strategies listed, each with a milestone. Some of the milestones are near-term (i.e., 2009 or 2010), while others are longer-term (i.e., 2011 or 2012). Perhaps the most important feature of the plan is that it will include a compendium of fed- eral activities already under way that are related to the various objectives of the plan and that are taking place in the agencies and departments involved in putting the plan together.   The ONC-Coordinated Federal HIT Strategic Plan: 2008-2012 was released June 3, 2008. 

80 HEALTH LITERACY, eHEALTH, AND COMMUNICATION Harris said that the Federal Interagency Advisory Group will be the decision maker for Healthy People 2020. Current members of the group include only agencies from HHS, but the membership will soon expand to other agencies. As mentioned earlier, there is a Health Communica- tion and Health Information Technology subgroup. The group’s task is to determine how health communication, health literacy, and HIT can provide an infrastructure for the achievement of Healthy People 2020. The strategic thinking presented in the ONC strategic plan will be woven throughout the work of this subgroup. Questions to be addressed include, What should be measured in health literacy and how should that be measured? Harris concluded by saying that an effort to envision the future of an integrated system of health literacy, health communication, and HIT has begun. The subgroup will be advising the Secretary of HHS. Input is needed from those who are expert in the area of health literacy as well as from the public in general. Discussion George Isham, M.D., M.S. HealthPartners Moderator One audience member from a private health system said that his system has had a series of 5-year goals and each time it prepared for the next set, the system attempted to evaluate what had been learned from the previous set of goals. What information from Healthy People 2010, he asked, is being used as input to Healthy People 2020 in terms of the communication objectives and, more specifically, health literacy? Harris responded that it is not clear that Healthy People 2020 should measure the same things that Healthy People 2010 measured. At present the health literacy of the population is being measured. But if one thinks in terms of infrastructure, one could measure other things, such as how many physi- cians are trained in health literacy. One might set an objective to have all providers obtain continuing medical education credit for health commu- nication or health literacy training. This is the kind of objective that could be incorporated into Healthy People if one thinks of it as representing an integrated infrastructure with skills, tools, and best practices. Friedman asked for input from members of the audience about whether they believed that Healthy People 2020 should include objec- tives directly related to HIT, health literacy, or health communication or whether those three components should be viewed in a more integrated fashion as a means to an end. One audience member replied that objec- 

EMERGING TOOLS AND STRATEGIES 81 tives should relate directly to health literacy. The bottom line is that what is measured is what gets done. Low health literacy has been a barrier to many improvements in health. To create the correct incentives, one must measure the correct things, so only if there is an explicit focus on health literacy will people address its issues. One audience member said that it appeared to him that a set of goals for the nation must be anchored in improving the health of the popula- tion. Many things are enabling factors to improving the health of the citizens of the United States. Ultimately, however, the goals must lead to improving the health of the population. How one thinks about that is informed by one’s experience over time. The government has been engaged in this effort for 40 years now, and this will be the third decade of the iteration of these goals. What specifically is being learned from what has happened in the past? An audience member noted that there is an Institute of Medicine report on health literacy that made a number of recommendations (IOM, 2004). It would probably be helpful to review those recommendations and determine the kind of progress achieved for the recommendations related to the communications and health objectives of Healthy People 2020. Another participant asked if the primary goal or vision of Healthy People 2020 is as global as improving the health of the nation or is more specifically focused on reducing disparities. Health information technol- ogy is very broad. Health communication, being about health information and its transfer, is a bit more specific. And health literacy is about what people understand and what they can do with the information they have been given. Will Healthy People 2020 attempt to weave these three things together to improve health or to reduce disparities? Harris responded that Healthy People 2020 is about both improving the health of the population and reducing disparities. Health communi- cation and HIT will have to be able to address both. Friedman said that they are attempting to mix three different cultures—HIT, health commu- nication, and health literacy—that have similar problems and issues but that have addressed them in different ways. The challenge is to integrate the fundamentally different approaches that these three groups take to address problems. If successful, there will be a synergy that creates a whole far greater than the sum of its parts. The Health Communication and Health Information Technology sub- group is inviting people who represent these three domains to work together. The hope is that through a combination of interaction and analy- sis a synergistic product will emerge. Perhaps in 2008 it is possible for these domains to function separately, but by 2020 it is likely that the groups will have had to merge. When addressing the issue of who is missing from the discussion of 

82 HEALTH LITERACY, eHEALTH, AND COMMUNICATION health literacy, one audience member suggested that the behavior side of the equation is less prominent than it could be. A major goal is to motivate behavior change that will lead to improved health. However the people who are experts in behavior modification and behavior change don’t seem to have played a major role. Harris responded that, at is core, Healthy People is a stakeholder- driven effort. The groups organizing it are made up of federal government people. But there is an important forum for the public and for profession- als to put forth their ideas about what Healthy People 2020 should look like. Friedman stated that it is often said in health informatics that the field is 80 percent about psychology and sociology and 20 percent about technology. It may be that individuals are attracted to the field because it is more about people and changing the way they work in a positive way than it is about software and hardware. One audience member said that one of the specific objectives in the health communication goal of Healthy People 2010 was to increase individuals’ health literacy. The National Assessment of Adult Literacy (NAAL) instrument was developed as a way of measuring this objective. Because there was measurement at only one point, however, it is not possible to determine whether individual health literacy has improved. Furthermore, the measure is about reading comprehension in a health context, which is not the same as health literacy. Dave Baker says that health literacy is the interaction or the combination of what the individual brings to the situation and the demands placed on the individual, both the print and verbal demands. Much of the discussion and effort surrounding health literacy has focused on trying to reduce the demands. Some of the other measures in Healthy People 2010 concern people’s use of the Internet for health information. There is a graphic of the NAAL results that displays the amount of information that people get from the Internet by health literacy level. People with below basic levels of health literacy had very low rates of using the Internet and people in the profi- cient category had very high rates. This might be a good measure to use. IT could be measured again in 5 years to determine if there is an increase in people with limited literacy using the Internet for health information. Another audience member asked whether we are accommodating or skill building. Accommodating is a legitimate strategy, but it needs to be recognized as such. One must also recognize that the determinants of health are very broad. One participant asked how much of the IT conversation addresses   David W. Baker wrote The meaning and the measure of health literacy. 2006. Journal of General Internal Medicine: Official Journal of the Society for Research and Education in Primary Care Internal Medicine 21(8):878-883. 

EMERGING TOOLS AND STRATEGIES 83 population-level tools today versus a potential tomorrow. In Minnesota, for example, probably about 80 percent of the providers have HIT tools, but that is very different from the country overall. It is also interesting, the participant continued, that HIT is not yet associated with performance. That is, having HIT is not yet a factor in terms of improving performance because many systems are old-school technologies. Perhaps there should be short-term and long-term objectives that address the progress in improving health, with old-school technolo- gies being used while the infrastructure for IT is being built in order to enable something more in the future. It frequently is the case that things take longer to occur than one envisions, so it may be that the benefits of IT will take much longer to achieve. If one places a great deal of emphasis on IT in Healthy People 2020, one may not actually make a lot of progress in improving the nation’s health in the interim. Another participant stated that IT can, if developed with more than just a focus on the individual, facilitate examination of population-level health. How do the risk factors as determinants of health relate to the infrastructure IT issues? Friedman agreed that it is important to focus on population HIT tools. Harris replied that that is part of the framework development that the groups are working on. How might they relate to one another? Also, for the first time, there is public advisory group that is providing input to the Secretary. Jonathan Fielding is chair of that 13-member group which will also be discussing these issues and questions. There is a dialogue between the federal interagency group and the public advisory group. A public comment page has been added to the Healthy People website and everyone is urged to ask questions and make comments. One audience member said that 10 years from now it will likely be possible to measure genetic risk factors for various populations in order to judge which interventions will work best for which populations. Will Healthy People 2020 address genetics? Friedman responded that this is one of the areas that, as an audience member observed earlier, will prob- ably take longer to achieve than is currently anticipated. Another audience member said that many people still do not under- stand health literacy or its importance for health. Healthy People is an important effort that could help bring much needed attention to the issues of health literacy and its affect on health. One may say that health literacy is a tool that flows across objectives, but if there are not explicit objectives related to health literacy, important stakeholders will be missing from the discussion and action. Health literacy is a determinant of health, one which will be of even more importance by 2020. The participant concluded by saying that including specific health literacy objectives in Healthy People would place a national focus on this important area.