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The Role of Health Literacy in Health Information Technology

HEALTH LITERACY AND MEANINGFUL USE OF HEALTH IT

Joshua Seidman, Ph.D.

Meaningful Use, Office of Provider Adoption Support

Office of the National Coordinator for Health Information Technology


The meaningful use of health information technology (IT) has a role to play in reducing health disparities. There are challenges posed by health disparities and barriers around health literacy, but there are potential solutions. When the American Recovery and Reinvestment Act passed in February 2009, it included a set of incentives around the meaningful use of health IT.1 Congress provided money for adoption as well as money for the meaningful use of health IT to improve the quality, safety, and efficiency of healthcare.

Meaningful use is not about technology. Technology is the tool, but meaningful use is about improving health and transforming health care. There are three stages of meaningful use. The first stage is focused on data capture and sharing. This first stage can help in understanding health literacy. Stage two focuses increasingly on advanced care processes. Stage three focuses on improving outcomes. The Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 established a federal advisory committee that will make recommendations to the Department of Health and Human Services (HHS). The recommenda-



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4 The Role of Health Literacy in Health Information Technology HEALTH LITERACY AND MEANINGFUL USE OF HEALTH IT Joshua Seidman, Ph.D. Meaningful Use, office of Provider Adoption Support office of the national Coordinator for Health Information technology The meaningful use of health information technology (IT) has a role to play in reducing health disparities. There are challenges posed by health disparities and barriers around health literacy, but there are potential solutions. When the American Recovery and Reinvestment Act passed in February 2009, it included a set of incentives around the meaningful use of health IT.1 Congress provided money for adoption as well as money for the meaningful use of health IT to improve the quality, safety, and efficiency of healthcare. Meaningful use is not about technology. Technology is the tool, but meaningful use is about improving health and transforming health care. There are three stages of meaningful use. The first stage is focused on data capture and sharing. This first stage can help in understanding health literacy. Stage two focuses increasingly on advanced care processes. Stage three focuses on improving outcomes. The Health Information Technol­ ogy for Economic and Clinical Health (HITECH) Act of 2009 established a federal advisory committee that will make recommendations to the Department of Health and Human Services (HHS). The recommenda ­ 1 See http://www.hhs.gov/recovery/. 

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH tions become a series of objectives and measures. A notice of proposed rulemaking was issued in January 2010.2 Health literacy is important to each of the five outcome priorities estab­ lished by the health IT policy committee. These outcome priorities are to 1. improve quality, safety, efficiency and reduce health disparities; 2. engage patients and families in their health care; 3. improve care coordination; 4. improve population and public health; and 5. ensure adequate privacy and security protections for personal health information. It is clear that health literacy is relevant to the first priority, which specifically aims at reducing health disparities. But health literacy is also relevant to thinking about how health information is used to reach the goals of engaging patients and families, improving care coordination, and improving population and public health. Public hearings are being held on these priorities. The first public hearing, on patient and family engagement, was held in April in Washington, DC. HHS is accepting public testimony at the hearings, but there is also a Federal Advisory Committee blog3 for input from the public. All comments become part of the public record. A series of themes has emerged from the first hearing and the blog. Each has implications for creating information for patients that truly addresses their health literacy needs. The following are the list of themes: • Provide real­time patient access to data • Incorporate patient­generated data into EHR • Encourage innovation — Connect home and community to care delivery settings — Consider a bold initiative (e.g., 50 percent of care rendered at home) • Create sense of community among patients and with health team — Achieve 4 es: engage, educate, empower, and enable — Meet needs of diverse population • Focus more on patient outcomes measures versus traditional pro­ cess measures • Engage with the public about meaningful use — Consider reorienting meaningful use criteria to what is mean­ ingful to patients 2 Final rules were issued in July and can be found at http://www.hhs.gov/news/press/ 2010pres/07/20100713a.html. 3 See http://healthit.hhs.gov/blog/faca/.

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 tHe RoLe In HeALtH InFoRMAtIon teCHnoLoGY Health literacy is an important part of the theme, “creating a sense of community among patients and with the health team,” especially when thinking of the four E’s: engage, educate, empower, and enable. Patients need information they can understand, use, and act upon. A June 4 hearing focused on using health IT to eliminate health dis ­ parities, with a strong emphasis on solutions. The first of three panels cov­ ered health literacy and data collection, the second was on cultural issues including language, and the third was on access—to health care, health information, and technology. Panelists considered several questions: What are the greatest risks of health IT implementation in increasing dispari ­ ties? What innovations can prevent these risks? What research can guide health IT implementers? What patient/family engagement strategies can help support future meaningful use of health IT? How can meaning ­ ful use of health IT reduce disparities? What health IT applications can improve literacy, access, cultural relevance of health information? While considering strategies to pursue, it is clear that ignoring tech ­ nology is not a viable strategy. There are challenges in accessing technol ­ ogy, one of which is that it may create additional barriers and increase disparities. This is a real concern, and HHS is very focused on the poten ­ tial, unintended consequences of evolution of health IT in this country. But that should not prevent forward movement because barriers can be overcome. Ethnographic observations are critical for identifying needs, Seidman said. When he was a board member of a transitional house for homeless women who needed help becoming self­sustaining, the women asked for a computer in the house so they could become fully active participants in society. With the computer, they were able to obtain some basic computer skills, which helped them get jobs. When spending time with populations that might use a technology, it is important to meet people where they are. Providing information in writing may not be the answer; maybe audio or video is a better approach to use. One must think about different ways to deal with health literacy barriers than have been used in the past. A young child who needs to learn how to use an asthma inhaler might learn better watching a video of himself being taught to use it than reading written instructions. EHR­generated data can help with tailoring health information. Data collected through the EHR—through health risk assessment, biometrics, remote monitoring—can improve understanding of how to target infor­ mation to a person’s individual needs at a particular moment in care. Health literacy is an important part of this targeting. Making data available in real time for patients is another important theme that emerged from the patient­family engagement hearing. It is important to think about not increasing disparities when determining

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6 InnovAtIonS In HeALtH LIteRACY ReSeARCH how to implement an EHR. According to Seidman, Neil Calman4 found lack of trust and respect to be a tremendous barrier to sharing data with patients. However, when exam rooms were designed for a more trustful and respectful relationship between patient and clinician, the two could view the EHR together. When the data in the record are shared in this way—either in the exam room or through a portal in the home—it poten ­ tially changes what is in the record and how it is written. Strategies are needed for translating clinical administrative data into lay terminology. Seidman encouraged participants to visit the Health Information Technology Website5 and post to the federal advisory committee blog. All comments are entered into the public record and help shape how meaningful use deals with issues of health disparities. PROMOTING HEALTH LITERACY VIA INNOVATIVE HEALTH TECHNOLOGIES Michael Wolf, Ph.D., M.P.H. Feinberg School of Medicine northwestern University How can health IT deliver health information to patients and families, streamline and standardize health care practices, and continuously connect with patients in order to simplify health system demands? Health educa­ tion is not a one­time endeavor, nor is connecting with patients to support their role and responsibilities in health care. Can health IT help to continu ­ ally and systematically connect patients to what they should do to manage their health? What are the range of uses one might envision for various health technologies in the context of the health literacy response? First, what does health IT encompass? The IOM report (2004) pointed out the health system’s complexity as a target for intervention. Health IT can include using telephones to monitor disease (Schillinger et al., 2008). Electronic health records are increasingly popular, not only as a support for quality care, but also to promote patient education in a timely manner. The Internet is a valuable source of information, but such use requires some sort of rating for people to know which health information is accu ­ rate and easy to understand. Interactive video and games are especially good technologies for kids. The Centers for Disease Control and Preven­ tion’s (CDC) website has many sophisticated games for teaching self­ 4 Neil Calman is President and Chief Executive Officer of the Institute for Family Health. 5 See healthit.hhs.gov.

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 tHe RoLe In HeALtH InFoRMAtIon teCHnoLoGY management of asthma and other chronic diseases. Handheld devices, such as cell phones, smartphones, and iPads deliver health education. Medical devices enable home monitoring, sending real­time information back to a provider. And finally, computerized agents enable tailoring of information to the needs of the patient at discharge (Bickmore et al., 2010). Health IT can be based anywhere; in hospitals and clinics, pharmacies, schools, public libraries, workplaces, and patient homes. Health IT can be used for many purposes, including • conveying patient information and promoting behavior change, • eliciting patient issues and concerns and for screening, • monitoring chronic disease, • standardizing clinical protocols, • tracking patient progress and outcomes, and • prompting related health care provider behavior. Through health IT, one can expand the target audience, tailor tools as needed to the individual, deliver information in a timelier manner, standardize the message, and layer content for patients who want to dig deeper using videos, interactive technologies, and websites. Processes of care can be automated. Resources can be delivered more efficiently and tools can be more sustainable. There is potential for cost savings as well, Wolf said. Imagine that a patient comes into a general internal medicine practice and is led to an exam room and his or her vitals are taken by a nurse. The nurse identifies the patient through the EHR as being eligible for colon cancer screen­ ing. The patient watches a brief video before the doctor visits because time motion studies have revealed that short, brief educational tools fit within that space before the doctor enters the room. The doctor does not have to worry about what to tell the patient about colon cancer screen­ ing. The focus is more on the decision making and coming to a resolution. The patient can then be handed a print tool with tangible information generated so the patient can review the content that was discussed with images and language mapped to what they saw in the video. Even in offices that do not have EHRs, such as federally qualified health centers, there are ways to help with chronic disease management. For a Missouri Foundation for Health study, Wolf’s team worked with a Microsoft Office package to give practices basic tools to flag patients who need diabetes education and to help with tracking and follow up. One has to work within the confines of a practice—what is available for it and what its patients are able to use. In addition to benefits, there are also incredible constraints, Wolf said, especially working with lower literate populations. These constraints

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH include not only patient access and skills, but also provider access and skills. Patients often need new skill sets to interface with health IT; can they navigate a website, can they interact with the EHR patient portal? For providers, how is the practice changing and what are patients being asked to do? Is the clinical environment ready to change? In the Missouri Foundation study, asking staff to obtain new skills was very difficult. Another constraint may be communication barriers between IT sys­ tems. Health care systems use different electronic health platforms that may not always translate one to another, or from a medical system to a pharmacy system. On some systems, such as Microsoft’s HealthVault, a personal health record includes not just health care provider informa ­ tion, but also patient­entered information, which has to be kept up to date by the patient. Finally, automating certain patient or provider processes may be beneficial in terms of streamlining care, but the risk is that people become dependent on the tools. They think things are happening, when in fact, they may not be. One constraint is illustrated in a recent study of 131 low­income adults (Jensen et al., 2010). Those with low health literacy skills reported less Internet use (e.g., email, search engines, and online health information seeking), and differences were mediated by age. A larger study showed patients with more limited cognitive abilities, less education, and older age showed greater anxiety with adoption of new technologies (Czaja et al., 2006). In another study it was found that, regardless of education and prior computer experience, the majority of older adults struggled when asked to go onto a Medicare website to try to perform some basic informa­ tion retrieval (Czaja et al., 2008). The Internet can be an incredibly effec­ tive tool for many, if not most patients, but more user testing is needed, along with much more research on how best to design Internet tools and to make the interface accessible for all patients across literacy skills. Efforts to develop effective and sustainable chronic disease self­ management tools can run into trouble if the tool does not meet the practice’s needs, for example, putting a kiosk with one educational tool on colorectal cancer screening in a center when that tool only meets the needs of 10 percent of the practice. Even low­tech strategies are a chal­ lenge without additional financial resources, ongoing IT support to deal with problems that occur, and a champion who can influence the practice to make sure it is implemented. Even a prescription label, designed and tested, was found, once it was moved into a pharmacy software system, to have many limitations that prevented making all the changes desired. A switch was made to a different system, with fewer limitations, but the example illustrates how each system has its unique barriers. From a systematic literature review conducted with the Foundation of Informed Medical Decision Making, Wolf reviewed 21 studies com ­

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 tHe RoLe In HeALtH InFoRMAtIon teCHnoLoGY paring multimedia with print tools in terms of effectiveness, regardless of whether the outcome was education, decision making, instilling atti ­ tudes, or promoting a health behavior change. It does matter, however, if the outcome is procedural versus declarative. Video might be better for showing how to use an asthma inhaler. But for declarative content, such as learning the basic facts about asthma, print materials may be better because they offer an opportunity for repeated review. There is a value in video and print, especially when it is integrated. Having a tangible tool supports learning with video. Add video if there is a good reason, not just because it is snazzy, Wolf said. In the context of promoting good health through health IT, standard ­ ization is important. Several studies examining how EHRs have uploaded physician instructions for medication have found problems. System break­ downs include unnecessary variability across different health systems (Bailey, 2009) and poor translation in pharmacy software and language access (Sharif and Tse, 2010). Many of the systems have been automated, yet there is incredible variability and poor quality because they are using insufficient health technologies to perform the translations. Some use web­based browsers that can provide inaccurate language or inconsistent information. Problems can occur with e­prescribing, and data can be lost. It becomes difficult for an EHR to obtain good quality data on medication adherence, for example, if some patients are paying out of pocket for generics. The information is not being captured. When thinking about developing health IT systems, one must also think about the limitations in the use of health IT. Continuous quality improvement means health technology designers have to be aware of how the providers and patients will be interacting with the technology. When thinking about health IT, there are several things to consider, Wolf said. Comprehensive evaluations are needed to assess not just the impact, but the fidelity of the rollout of health technologies to promote health lit­ eracy. The effects by age and literacy level are important to examine. Cost must be assessed and researchers must ask if using health technology will increase disparities. Will health IT be accessible or will it disenfranchise places that serve the most vulnerable populations? Critically consider use of new technologies. The iPad might be the new thing, but will it be around for awhile? Finally, seek to improve IT linkages across systems. DISCUSSION Isham began by asking about the impact of the iPad, cell phones, and smartphones on the issues of access and health literacy. Wolf replied that there are many studies on the use of cell phones and monitoring devices

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0 InnovAtIonS In HeALtH LIteRACY ReSeARCH for patients with HIV and medication adherence. There are several iPhone applications that would probably translate to an iPad application to help patients. iPill is a medication management tool worth examining in this way. None have been fully evaluated in any context. It would be interest­ ing to see how people would use it and what the cost­effectiveness is. William Ross, roundtable member from Washington University said he has seen vulnerable patients who are very willing to watch a video while waiting for an appointment in his nephrology practice. But is there a way to standardize approaches? Wolf responded that the key is evaluation and process outcomes. How are people using the technology? How do they want to receive information? Approaches vary widely. Some send audio messages through iPads even though research shows that audio messages alone are one of the most ineffective methods in terms of retention of education messages. Others send text messages, although the effectiveness of that approach is not known. Because of their efficiency, using many technologies may be a good thing to get the messages across. Rather than standardization, Seidman said his group is interested in disseminating best practices. HHS has grants with 60 regional extension centers around the country along with a health IT research and resource center that helps identify and share best practices to build communities of practice around what works and what does not. These centers share the leading examples of how to use various technologies for meaningful use of health IT. When asked how meaningful use in health IT can address literacy and culture, how it can be incorporated into rule making, Seidman replied that, without commenting on the final rule, he would like to see more sharing of what is being done, how technologies are being used to deliver patient­specific education resources that are tailored to individual needs. It would be valuable to determine how to communicate and use that experience as a guide for the rest of the industry. Through other grants and contracts, HHS is looking for ways to stimulate innovation by under­ standing consumer needs. HHS also has contracts through extension pro ­ grams to learn how EHRs are being used for patient­family engagement strategies. He expects to see a series of case studies and best practices generated. The regional extension centers are serving small practices and safety net providers. Scott Ratzan, roundtable member from Johnson & Johnson, reflected on all the technology opportunities that have arisen in the past 20 years, most recently the wireless technologies. Mobile phones have penetrated deeply, even into vulnerable populations. The launch of Text4Baby with the White House was an innovative partnership. But it is still unclear how to determine the number of people who are getting the information

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 tHe RoLe In HeALtH InFoRMAtIon teCHnoLoGY and making health behavior decisions that are appropriate. What can the roundtable do to foster information sharing and help with discussions on disparities? The IOM has several groups on disparities, communications, health literacy, quality. It is time to foster the next steps. Seidman called for more integration of technologies into the care delivery system. Studies clearly show that patients still want to get infor­ mation from their personal clinician. Could something like Text4Baby be integrated into the EHR and create an interface so one of those messages goes to the consumer, but also is shared with the provider and entered into the record? What parts of the record can be used to better target and tailor messages that go to the patient, such as those in Text4Baby? He added that the meaningful use workgroup of the health IT policy commit­ tee is discussing integration and targeting of messages as part of the stage two and stage three meaningful use objectives, attempting to set expecta ­ tions at increasingly higher levels without dictating exactly what should be done so that room for stimulating innovation and creativity remains. When asked about the use of videos for patients, Wolf described the importance of evaluating the protocol in the clinic setting, examining each step in the process, determining how patients move in and out of the clinic, and the different roles of the providers that are touch points for the patients. Such an evaluation can result in substantial change in what is actually done. For example, in a study on medication therapy manage ­ ment, the original idea was to involve nurses in the reconciliation process. But it was found that was not needed. Whether it is using a patient educa­ tion video or changing a process to ensure a patient and a clinician talk together, it is important to evaluate what is happening. Isham made several comments. First, health literate IT programs are those that are designed so that the default options are the norm, as opposed to having to put together a series of activities that require wind ­ ing one’s way through a maze of steps and technology in order to do the right thing. This is the design principle that should be used in develop ­ ing EHRs. Second, in thinking about applications being designed for direct consumer use, it seems that the current health IT design assumes a simple illness that is complemented by in­person care. Such systems do not take into account the illness complexity of many patients. Finally, in encouraging innovation in health IT it is important to provide incentives and determine meaningful use, but it is equally important not to stifle innovation. Paasche­Orlow said he hopes to see innovation that pushes providers to change how they are using EHRs. Right now EHRs are used to protect the business model and defend the movement of data to make it hard for patients to get data moved from place to place. That must change, he said. There is too much emphasis on how the doctors use the EHR. The

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH health literacy conversation brings into the discussion how consumers and other nondoctors are going to use these systems. Wolf said it is important to think as broadly as possible about the use of health IT. The current statutory authority focuses on the use of EHRs, and the leverage points are with Medicare and Medicaid providers. But in the long term, it is important to think much more broadly than this, he said.