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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary 4 Outcomes and Challenges of eHealth Approaches: Panel 2 USING TECHNOLOGY TO IMPROVE MIGRANT HEALTH CARE DELIVERY Cynthia Solomon Chief Executive Officer, Access Strategies, Inc. MiVIA is a patient electronic personal health record (PHR) originally designed to engage a very vulnerable population—migrant and seasonal farm workers—in their own health care through the use of a personal health record. It was later expanded to include other vulnerable populations such as the homeless, those with special needs, women, and children. The MiVIA project is a collaborative effort of St. Joseph Health System in Sonoma County, California; the Community Health Resource Development Center; and Vineyard Workers Services. In 2002 and 2003 developers of the new system held meetings with farm workers and settled agricultural workers to explain the concept of the PHR and to ask them what information they would want to carry with them and have accessible to them. The developers quickly learned, for instance, that the participants did not want to be called users or patients or consumers; they wished to be called members. The members named the system MiVIA, which means “my way” in Spanish. MiVIA has evolved over the years. In 2003 it was a consumer portal for information storage on migrant and farm worker members. By 2005 it included a clinician portal that offered clinicians access to the personal health record (with member permission), but the data entered were read-
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary only. By 2005 MiVIA had expanded to include members of the homeless community. In 2007 four hospitals were using it as an electronic medical record and it had expanded its member rolls to include special needs children. The resulting PHR, which was designed with input from the members, is Web-based, and compliant with HIPAA (the Health Insurance Portability and Accountability Act). It is now being licensed to hospitals and clinics for use with mobile populations. Additionally, it serves as an affordable electronic health record for small clinics. When the MiVIA pilot project started in 2003, it had a goal of enrolling 50 migrant workers. That figure quickly became 250, then 300, then 400. Because MiVIA serves a very mobile population of migrant workers who may access many different clinics and health care systems from San Diego all the way up the coast to Alaska, it serves as a bridge among these health systems. It promotes continuity of care and engages and empowers members as active partners in their own health care. MiVIA stores medical and dental information and provides a photo identification and emergency information card which includes the member’s name, health conditions, the last provider seen, any allergies, and other special information, such as presence of implanted medical devices. MiVIA also includes an e-mail account offering a “permanent” address and provides information and resources with links to other health information resources, primarily to MedLine Plus, but also to some other health websites. Both family and individual memberships are available. It is interesting to note that 7 out of 10 of the providers engaged in MiVIA had not heard about MedLine Plus before getting involved with MiVIA. Once they learn about it, however, they love it. And it is not only providers who appreciate having the additional information available from MedLine Plus, but members appreciate it as well. One story illustrates the value of this resource. About a year and a half ago, an older gentleman came to the resource center with his daughter. The gentlemen was supposed to take seven medications but the daughter told an outreach worker that, while her father needed the medications, he did not take them. The outreach worker and the daughter sat with the father, logged on to MedLine Plus, looked up every medication, and printed the information in Spanish. That was what was needed to engage the gentleman in his health care so that he took his medication. The small amount of effort required to log into MedLine Plus and retrieve information from it made all the difference in that patient’s care. MiVIA has a clinician portal for professional entry and verification. A clinician can go to www.mivia.org, sign up as a clinician, and run a test account to check out the system. The log-in is also available in Spanish, although it is somewhat more limited. There are approximately 5,000
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary FIGURE 4-1 Patient dashboard. SOURCE: Solomon, 2008.
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary MiVIA members in Sonoma County and about 1,100 of them use the Spanish version. One useful feature of the system is the patient dashboard (see Figure 4-1). On the dashboard the member’s information is on the left-hand side. Among other things it tracks medications and providers, and it provides all the information needed to fill out the forms on a physician visit. The member identification card is probably one of the most popular features of MiVIA. The card can be printed anytime. If a change is made to the PHR (e.g., adding a medication), the card is reprinted and the new information appears. If a member who does not speak English visits a clinic or hospital where no translator is available, this card can be used to provide pertinent information and access to the patient’s PHR. MiVIA has many features. It is a single database with both member access and clinician access. A member can grant a clinician access to his or her MiVIA record. There is also “on-the-fly” clinician sign up, meaning that if a clinician wants a MiVIA member to see a specialist, the member can give the specialist immediate permission to access his or her record. There is also a Spanish version which is experiencing some challenges that will be described later. There is a service wheel which identifies resources by special population or region. Resources include information about employment, transportation, housing, community services, health services, and legal assistance. So, for example, if a member is in San Diego but is going to Sonoma to work for a while, he or she can click on housing and locate the different services available to him for migrant housing. The most recent version of MiVIA includes a feature that allows a continuity-of-care record (CCR) to be downloaded into a computer or another electronic medical record system. MiVIA is currently working with two electronic medical record companies to test this feature. MiVIA also has a complete audit-and-edit trail with date and time stamping. The system is located in a collocation facility that has managed servers. Encryption, SSL,1 and secure log-in and passwords are used. Member suggestions have led to a number of enhancements to the system. The success of MiVIA is due primarily to the outreach and lay outreach workers, or promotores. They are the champions of MiVIA. They conduct the enrollment and provide the training in the use of MiVIA. They also provide cultural and social support and check in with the members about their use of MiVIA. The promotores are provided with a training and enrollment manual that is very simple to use. There are about three training sessions each year that the promotores can attend. Each session lasts about two and a half hours and starts with the basics—what the computer is used for and how 1 SSL stands for secure sockets layer which is a technology used to protect websites.
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary to access different programs. There is a quick overview of the Internet, with a brief look at different sites, and the session also covers the purpose of MiVIA, its use, and how to enter and access data. Since the training can be intense, promotores often return for a repeat session. When MiVIA first began, most of those who enrolled did not have an e-mail account, so MiVIA provided an e-mail account for anyone who needed one. Within a few years that changed so that most of those enrolling today come in to the system with their own e-mail accounts, indicating awareness of the Internet. Similar to the patient dashboard described earlier, there is also a clinician dashboard that MiVIA makes available to health care providers. Using this dashboard, a MiVIA clinician can, with a member’s permission, use the member’s log-in, password, or limited-access code to enroll the member on the clinician’s list of patients. This enables the clinician to pull up patient data. The clinician portal features an alphabetical list of individual clinicians or clinics, and patient lists by organization. Access to patient records is with the owner’s permission only. With that permission, clinicians can access patient records online at any time and from any place. Data entry is protected, as it is read-only to members and other clinicians. The latest version of MiVIA uses the SOAP2 format for data entry. This version allows providers to record whether the nature of a patient visit is preventive, emergency, or chronic care. The version also has a telemedicine component which becomes the record between the patient, the specialist, and the provider. Those granted access can retrieve a summary medical report that can be downloaded or else can go to specific parts of the record detailing such things as immunizations, medical office visits, and allergies. The information can also be shared across platforms. There are many member benefits of MiVIA. It reduces the divide between those who have access to digital and information technology and those who do not. It facilitates access to health and community services, clinics, and libraries. The promotores, when teaching about MiVIA, teach farm workers and their families to use the local library, taking them to the library, showing them around, and showing them how to access the Internet. Because the members have MiVIA cards, they are able to get library cards, which they were not eligible for before. Members become more engaged in their community. MiVIA also promotes health care literacy and peace of mind. Members know their information is safely stored and can follow them wherever they go for services. MiVIA has applications for children with special needs who have 2 SOAP stands for subjective, objective, assessment plan. The SOAP format is used to document observations and care provided.
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary multiple conditions as well as for the homeless. In the case of the children, MiVIA eases the burden of parents who are busy with multiple medical appointments, providing an easy way to carry health information with them at all times. In the case of the homeless, clients have a concise document on which to store health information. Relevant personal data from the U.S. Department of Housing and Urban Development can be copied and pasted into MiVIA. The MiVIA photo ID allows clients to pick up their prescription voucher at local pharmacies. In Fall 2007, the St. Joseph Health System conducted a telephone member satisfaction follow-up survey. Of 613 members, 40 percent of the people enrolled said that they log on to MiVIA on a regular basis. Eight percent (50) members had no prior computer experience and received basic computer training from MiVIA. Eighty-seven percent of members enrolled did not have a computer in their home. MiVIA also has a disease-management tool. The first disease targeted was diabetes, and work has now begun on asthma. With the diabetes-management tool, members can track their blood sugar and weight, graphing this information and sharing it with their health care providers. MiVIA is also working with several regional health information organizations (RHIOs) and EMR linkages. MiVIA is currently working in Sonoma County, California, with mobile medical and dental clinics, community clinics, a family practice residency “bridge” clinic for diabetics, a homeless center, and a resource center. MiVIA also works with two hospitals and three rural clinics in the California Central Valley. In Hood River, Oregon, MiVIA is working with a hospital, a mobile medical clinic, and a rural clinic. In the Finger Lakes region of New York MiVIA is working with five clinics, three voucher sites,3 and an integrated network and is involved in telemedicine. Hospitals that join MiVIA use it as a method for health information exchange between local physicians’ offices, their patients, and the hospital. Several lessons have been learned since MiVIA began in 2003. First, each community is different. Second, the value of the photo ID cannot be overstated. Third, promotores are invaluable resources trusted by members. Fourth, members gain computer skills through the use of MiVIA. Finally, it is extremely valuable to partner with local libraries and community-based organizations to provide computers and classes in English as a second language. One of the challenges MiVIA faces in serving limited-English- 3 A voucher is an agreement between a provider and the voucher program (usually a migrant health grantee), to reimburse a provider, who is usually in a distant location, for health services provided to the migrant worker. Voucher sites are local providers who are contracted with on a per-visit basis.
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary proficiency (LEP) members is that printed and online content is not easily available in Spanish, with the exception of MedLine Plus, and appropriate translation services are difficult to locate. MiVIA’s first translation effort was carried out by a university and cost a substantial amount of money, which was paid for by a grant. Two years later MiVIA learned that it was not an appropriate translation. It was a word-for-word translation and, as such, did not make sense. MiVIA has received a great deal of criticism about that translation and is in the process of trying to identify the correct technical and financial resources to remedy the error. Still, despite its problems, the Spanish translation is being used for now since there is, as yet, nothing better. A final challenge relates to quality. Those who work in the field of electronic health records and information exchange are so involved with issues of technology, privacy, security, getting the project out, and preparing for interoperability that that they have not yet put in place a mechanism to measure the quality and content of the translation. This is a key challenge. Solomon made several recommendations for future efforts to construct patient-centered health information technology. First, when issuing requests for proposals, it should be a prerequisite for funding that the proposal should include provisions for serving LEP individuals. Second, resources should be made available to assist organizations in accessing, measuring, and deploying health content that is relevant and respectful of cultural differences. Finally, because many individuals in vulnerable populations do not read or do not read well, the development of downloadable audio and video content should be encouraged. Although many talk about the huge investment of resources needed to develop health information technology, the total amount of funding for MiVIA through the 6 years of its development is less than $600,000. This is not a huge investment, considering the benefits that accrue. Solomon concluded with a vision for the future of MiVIA and other personal health records. In that vision, these tools make it possible for both physician and patient information to be sent directly to the PHR from any electronic health record; there are condition-specific modules for self management; access to critical information is available 24 hours a day, 7 days a week; and the tools have the ability to bridge language barriers between patients and providers.
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary A USER-CENTERED PERSONAL HEALTH RECORD: THE DESIGN AND DEVELOPMENT OF THE SHARED CARE PLAN Dawn Gauthier, M.I.S. Web Usability Designer, PeaceHealth In 2001 the Robert Wood Johnson Foundation awarded a Pursuing Perfection grant to Whatcom County, Washington (the only community to receive such a grant) to implement a chronic disease model, including the development of a user-centered personal health record (PHR). The project was also supported by a patient safety grant from the Agency for Healthcare Research and Quality. With the publication of Crossing the Quality Chasm (IOM, 2001), those working on the project kept in mind the report’s six aims for improvement4 and the ten rules5 for the health care system as design work proceeded. Whatcom County had been very much interested in designing a patient-centered health care system. Development of a user-centered electronic health record, the Shared Care Plan, fit well with the activities of the County. The project began with a focus on chronic conditions and the design of a chronic-disease-management tool. The involvement of patients pushed the design in the direction of a personal health record. The design goals of the Shared Care Plan, which was an endeavor of the entire community including all the providers, were to facilitate patients’ interactions with the health care system, supporting the virtual Care Team concept, and planned care, and to ensure the “nothing about me without me” perspective of the patient; offer patients a tool that fosters a sense of responsibility for their own health and encourages them to learn about and practice principles of self-management (such as maintaining a medication list), thereby encouraging educated and engaged patients; provide a tool that enables patients to feel safer because they are informed and in control; and 4 The six aims for improvement for the health care system are that the system must be safe, effective, patient-centered, timely, efficient, and equitable (IOM, 2001). 5 The 10 rules for the health care system are that care should be based on continuous healing relationships, there should be customization based on patient needs and values, the patient should be the source of control, there should be shared knowledge and the free flow of information, there should be evidence-based decision making, safety should be a system property, there is a need for transparency, the health system should anticipate patient needs, there should be a continuous decrease in waste, and there should be cooperation among clinicians (IOM, 2001).
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary give patients access to their clinical information from multiple community health care systems so that they may organize it into a single meaningful lifelong personal health record and then make appropriate parts of that record available to those who need it at the patient-owner’s discretion. The second goal may be of particular interest to those attending this workshop because of its health literacy aspects. The idea behind the goal is that if patients could be encouraged to use the Shared Care Plan, even if they did not understand everything they encountered, not only would their health literacy increase but, if their Shared Care Plan was up to date, they would be in a good position to deal with any issues that might arise in their health care. There are currently more than 1,400 Shared Care plans in Whatcom County. There are also a couple of pilot sites in Oregon. The regions in which the plans are being implemented are the PeaceHealth regions. Patient involvement was key to development. The user-centered design approach is more than just a methodology; it is a philosophy and a process in which the tasks, needs, wants and limitations of the end user of a system (in this case, the patients) are given extensive attention at each stage of the design process. Jakob Nielsen (2005) developed the following key end-user principles or “rights” for user-centered design. First, people should be considered superior to technology. While that may seem obvious, there are those involved in technology development and programming who may sometimes need to be reminded of this. Second is the right to empowerment. Third, users have the right to simplicity, that is, to have things that are well-designed, easy to use, and designed to complete the task one needs to complete, not someone else’s idea of what one needs to complete. Finally, people have the right to have their time respected. One can waste a great deal of time using poorly designed technology. Such technology is very frustrating and can be intimidating. Through an approach called user research, system designers working on the Shared Care Plan project set out to determine what tasks patients were actually attempting to accomplish. They observed, they listened to patients tell their stories, and they asked questions about why patients did things in a certain way. Several approaches were used to gather information including one-on-one contextual interviews, usability testing of design ideas and prototypes, patient focus groups, and surveys. A very popular approach is the use of focus groups. It is important in such groups to make sure you have a range of representation including patients who most successfully navigate the health care system;
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary patients who are healthy and rarely use the system; patients who fully understand what you are trying to do (may be health care professionals themselves); and patients who have no idea what you are trying to do. The difficulty with the focus group approach is that one can end up with “group-think.” That is, people begin agreeing with each other even if what they hear is not actually how they do things. Furthermore, people may say that they do things in a particular way but when they are actually observed, they are doing it differently. In user-centered design one figures out what patients are trying to do, designs something that one thinks will allow patients to accomplish their tasks, tests the design with the patients, and then evaluates whether the design worked or not. The resulting feedback is then used to refine the system design as necessary. One does not need a fully functioning prototype to evaluate a design; one can use ideas and drawings on paper for the tests. The best approach is probably one-on-one contextual design. In this approach one goes into the field to talk with patients. During such interviews one might accompany patients to physician office visits and watch their interactions with physicians. One might even, accompanied by the patient, look through the patient’s medicine cabinet. An important part of user-centered design is producing a task analysis, because such an analysis crystallizes the design work. In a task analysis one lists all the tasks that are observed and then prioritizes the tasks based on how important each task is to the patients. This helps define the scope and focus of the product. In terms of scope, for example, even though survey after survey has shown that the thing patients most want to be able to do is refill their medications online, and even though project designers knew it was a high priority for patients, the decision was made to not include that in the personal health record. That decision was made because the task was too large to accomplish for every single health organization in the community, and the Shared Health Plan is a community-wide resource. It was an intentional decision, therefore, to leave that tool out of the scope of the PHR product. Task analysis also serves to keep design and development work focused on the task at hand. It is easy to get off track because there are so many interesting and wonderful features that can be tried in this arena. A task analysis, however, focuses designers on what patients are trying to accomplish. This focus clears a great deal of static from the design process. Most importantly, when one has user research and a task analysis
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary in hand, decisions are made by referencing user data rather than relying on opinions and assumptions. This is very important, especially if one is working with health care professionals. Such professionals frequently believe that they know what is best for patients and that, if patients would just do things the way the professionals say, everything will work out fine. So user research is a way to keep the focus on the patients. When this was done, it was found that patients’ tools are very different from the tools one might build for clinicians and health care professionals. Finally, the design work focused on how to support the tasks that were identified, rather than making up the tasks that one thinks patients should be doing. The project also had a Patient Action and Advisory Committee. Gauthier strongly recommended that anyone designing technology for patients convene such a group. It makes it easier to find patients to work with, and the committee members invigorate staff, keeping them focused on the reasons the product is being developed. Much of the design work and problem solving for the system was tested with patients using a wireframe6 before a single line of code was written. Patients were given a graphic representation of a Web page and told they could use their finger as a mouse to click on the various options. They were then asked questions such as, “What would you click on to add a new medication?” Using a wireframe with patients allows the designer to determine where changes should be made. It also allows for rapid iterations that bring one closer and closer to a really great design that most patients will be able to pick up and use quite easily. The following examples illustrate how a task was designed in the user interface. The first task was for a patient to be able to find the generic name of a medication. There is a great deal of confusion among patients over the myriad names for a single drug. The design decision was made to always pair the brand name with the generic name so that patients always see the two together (see Figure 4-2). When patients add medications to their lists, the lists will always show both the brands and, when available, the generic pairing. The page also shows the patient which strengths of the medication are available, a piece of information that patients were very interested in knowing. 6 A wireframe “is a visualization tool for presenting proposed functions, structure and content of a Web page or Web site. A wireframe separates the graphic elements of a Web site from the functional elements in such a way that Web teams can easily explain how users will interact with the Web site. A typical wireframe includes (1) key page elements and their location, such as header, footer, navigation, content objects, branding elements, (2) grouping of elements, such as side bars, navigation bars, content areas, (3) labeling, page title, navigation links, headings to content objects, and (4) place holders, content text and images” (Jupitermedia Corporation, 2008).
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary to sit with an expert who provided hands-on attention while the users worked through the system. To build awareness, presentations were given at such locations as community centers, senior centers, and churches. Once a few people became excited about the Shared Care Plan they acted as ambassadors, talking with friends and family, and spreading the idea. This was a very successful way of spreading ideas and getting people to sign up. The final challenge is management of patient expectations. This is incredibly difficult. It takes a great deal of explaining to get people to sign up for the personal health record. Once they sign up, they are very pleased to find they can add any of their clinicians in the community to their care team and set the access level for each person. But once they have done this, they tend to expect that the clinicians will be constantly logging on to the PHR to record and access information. Not all clinicians, however, entirely engage in using the system. Patients also expected to be able to log in to the system and immediately have all of their health care records electronically available for them to download into their personal health record. But as Marchibroda mentioned, only a small percentage of physicians use electronic health records. Thus, it was necessary to work with patients to explain the limitations and to temper their expectations. Another common patient expectation was that a critical mass of clinicians would be engaged. It is a great deal of work to fill out the Shared Care Plan and it is even more work to maintain it. Patients were lucky if one of their clinicians was a participant in the Pursuing Perfection Project. A large number of patients did not have any officially participating clinicians which meant they did not see their clinicians participating. Unfortunately there were a number of stories of patients taking their printed Share Care Plan to a clinician visit, even the wallet-size version, only to have the clinician completely disregard it, even throw it into the trash can in one extreme case. Imagine the effect that had on the patient’s perception of the value of filling out the large amount of information in the Shared Care Plan. Patients will understand the value of PHRs only when they start actually seeing them significantly improving their experiences within the health care system. (e.g., not repeating their medication lists verbally, not having to fill out repetitive forms, etc.). In other words, patients won’t value PHRs until their own clinicians value and use them. Recently, emergency medical services (EMS) in Whatcom County have decided to participate with the system. Ambulances have installed wireless Internet, and now EMS has the ability, when receiving a 911 call, to cross-walk the telephone number with a patient’s Shared Care Plan, if there is one. If the patient has given the community clinicians ability
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary to access the PHR, the ambulance drivers can actually look up information as they are driving to the patient’s house. This is very appealing to patients. Improvements to the system are always being made. A new version of the Shared Care Plan was recently launched, for example. While it appears similar to users, there is a great deal of new technology in place, including new support for localization (such as language). This version is being piloted in New Zealand and Sweden, among other places. There is also a beta version that will enable integration with emerging platforms such as Microsoft’s HealthVault. The original version of the Shared Care Plan is available for free to anyone who wishes to use it. The full source code and complete documentation of the tool are available at http://www.peacehealth.org/scp. Anyone can download it. Hundreds of people all over the world have downloaded the code base and the documentation guide. One question PeaceHealth staff is currently pondering is how its patient portal should interact with the Shared Care Plan and other PHRs. One idea is similar to the concept upon which Quicken (the financial management software) is based—that is, to try to standardize the systems so that a patient can interface his or her PHR with multiple organizational portals where patients may choose to receive services. Gauthier concluded by saying that there is no shortage of great ideas from patients that then lead to new designs and built systems. The Shared Care Plan will keep evolving to incorporate those ideas. OBSERVATIONS FROM THE EXAM ROOM: PATIENT-CENTERED HIT IMPLEMENTATION IN DIVERSE PRACTICE SETTINGS Joshua Seidman, Ph.D., M.H.S. President, Center for Information Therapy Information therapy sits at the intersection of patient-centered care and health information technology (HIT). The Center for Information Therapy is an independent nonprofit organization whose mission is to advance the practice and the science of information therapy in order to improve people’s health. The vision of the center is a future in which every health decision is informed.7 The center uses the logo “Ix” because Ix is a corollary to Rx, the standard symbol for a medical treatment or prescription. People talk about all the information that is available on the Web and, in general, it is positive that consumers have access to that information. But too much information 7 The Center for Information Therapy website is www.ixcenter.org.
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary can create an information overdose. If people access inaccurate or incorrect information, that too can have negative side effects. Therefore, the issue can be seen as a matter of titrating the dosage of information. How does one figure out the appropriate dose, frequency, and duration of the information to provide? How can the right information be delivered to the right people at the right time so that they can better manage their health and make better health decisions? Kerr White, an epidemiologist, developed the idea of the ecology of health care and medicine (1961). His idea was to examine a population of 1,000 people to determine how people experience health and health issues and how they use the health care system. This research was updated by Larry Green (a family physician) and colleagues (2001). Green and his colleagues found that in a population of 1,000 people, on average about 800 would report symptoms of one sort or another. Of those reporting symptoms, 217 would visit a physician’s office (including 113 who would visit a primary care physician), 65 would visit a complementary or alternative medicine provider, 21 would visit a hospital outpatient clinic, 14 would choose to receive home health care, 13 would visit an emergency department, and 8 would be hospitalized (with fewer than 1, on average, hospitalized in an academic medical center). There is a big difference between the number of people reporting symptoms and the number who actually seek care. How does use of the Internet for seeking health information fit into this picture? Of those 1,000 people, it is known that considerably more than the number who seek care, but probably less than the 800 who report symptoms, will access the Internet for health information. There are different degrees of access to the Internet—some people have access at home, others at work, and still others have access through a family member. The Pew Internet and American Life Project found that 60 percent of people with household incomes below $40,000 per year had access to the Internet (Esterbrook et al., 2007). More people now go online for health information every day than visit a doctor, which is what Susannah Fox of the Pew Internet and American Life Project referred to as the “Dr. Google” phenomenon. That raises the obvious question, What happens when physicians tell their patients not to go online? When surveyed on this question, consumers said that they either change where they are going for medical care or else just no longer tell their physicians about it (Fox and Fallows, 2003). If one asks consumers where they would prefer to obtain information, they report that their first choice is from their personal physician. But when they do see their physician, the visit is often carried out in a very condensed timeframe with insufficient time to discuss everything they would like to talk about. Furthermore, about 50 to 80 percent of things a
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary patient hears in the physician’s office is completely forgotten by the time he or she gets home (Eiser, 1982) When the patient returns home, he or she will generally have numerous questions still unanswered. In response, the patient goes to the Internet. The patient may also go to other places as well in the search for information. It is not difficult to find information on the Internet. The difficulty is finding information relative to a specific need. Even if people find what they need, they may not understand what they find. If they find and understand the information, the next challenge is to remember it. If they find, understand, and remember the information, they must then figure out how to contextualize it, that is, they must determine what the information means for their particular care and needs. This is the task of information therapy; to figure out how to bring two worlds together in order to make sure that the information people need is there for them at the right time. Information therapy recognizes that there is a difference between data and information. If one looks at a PHR, for example, it may contain data that are hard to read and interpret. But going from data to information therapy requires making sense of those data and putting them into some context that leads to information, then to knowledge, and ultimately, to behavior. Appropriate use of HIT can help individuals make informed health decisions. The Center for Information Therapy took part in a project that observed how clinicians and patients use HIT to advance patient education and to make better use of HIT tools.8 Time was spent in a wide variety of settings—small practices with one or two physicians, for example, multi-specialty groups, and in integrated delivery systems. About half of the time was spent in federally qualified community health centers. Health literacy issues cut across various populations. One important observation of the project was that some of the biggest health literacy challenges occur with people who have significantly impaired cognitive function, such as people with mental illness. If one is to understand what actually happens with patients, one must spend time on site. For that reason, project staff spent a great deal of time observing the interactions of clinicians and patients. But before they observed these clinician/patient interactions, the project staff spoke with administrators of the facilities. One finding was that the way in which administrators viewed things was often contradicted by what 8 Safety net providers observed included the Institute for Family Health (New York); East Boston Neighborhood Health Center; Cambridge Health Alliance (Massachusetts); La Clinica de La Raza (California); District of Columbia Primary Care Association; Lifelong Medical Care (California); Queens Health Network (New York); UNITE HERE! (New York); Urban Health Plan (New York); Baltimore Medical System; Redwood Community Health Coalition; and MiVia/La Luz Community Center (California).
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary actually was happening. In one community health center, for example, the chief information officer told the project staff, “Oh, we don’t really need a PHR because our patients don’t really want to access information electronically.” But when the staff observed the primary care physician serving his patients over a 2-hour period, the physician received e-mails and text messages from patients on his cell phone. It turned out that the clinician’s patients already were using electronic technology, but the message was not getting to the administrators of the center. Rather than making assumptions about what technologies patients do or do not use, one should use data and observations to determine what is actually occurring. The project found that there was a great deal of variability in terms of the technology that patients were using. For example, in one inner-city community health center with a population that was about 95 percent Latino, the clinicians said, “All our patients use e-mail.” In other communities patients were using smartcards. These smartcards contain patient information which can by read by smartcard readers at health care facilities in order to quickly obtain information about the patient. The smartcard readers cost about $15, so this approach is fairly inexpensive to implement. The problem is that facilities frequently do not plan in advance to buy smartcard readers when they buy their computers. Similarly, many facilities are implementing electronic health records without thinking about the portal access. Furthermore, planning for PHRs is often done without thinking about the link between an individual’s health information (e.g., a person’s lab data, medical record, and medication information) and the context within which that information will be used. This is a serious concern, and it is important to think carefully about the best way to contextualize content. There is a great opportunity to do things correctly the first time, to make sure electronic records are patient-centered, as PeaceHealth and MiVIA have done. There are many instances when PHRs are implemented but not much used. Providers don’t promote their use or they may even object to their use—as in the case that Gauthier spoke of earlier where the physician threw the Shared Care Plan card in the trash. Patients need to be engaged, but clinicians must also be active participants in the process because patients do pay attention to what their clinicians say and give it a great deal of weight. Observation shows that people are hungry for information but do not have very high expectations. As mentioned in earlier presentations, people need a reason to use technology. Once they have an experience of value to them, they are much more likely to use the technology. For example, technologies could create after-visit summaries in English, Spanish, or other languages. Given that patients forget 50 percent to 80 percent of
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary what they hear in a physicians office (Eiser, 1982), such summaries could have a big effect on how the patients view technology. A major challenge is the reimbursement system and the way that incentives are structured. Currently, particularly for community health centers, the in-person visit is the major source of income. But if technology use decreases the number of visits, it also decreases income. This issue must be addressed. Crossing the Quality Chasm stated that health care in the past has been based on episodic encounters with the delivery system (IOM, 2001). It is important to create a system with a more continuous cycle of care and continuous healing relationships. Furthermore, as the report states, the system should encourage “all types of health care interactions that improve information transfer.” On average, a patient’s visit to a clinician lasts 16 minutes, during which the conversation between clinician and patient may cover six topics (Blumenthal et al., 1999). Information therapy and patient-centered HIT can help patients maximize the value of these visits by, for example, allowing them to obtain information in advance of the visit. By using HIT to obtain information in advance, the patient has a better sense of what might be expected, which sets the stage for more efficient use of time during the encounter. An after-visit summary would then reinforce what went on during the visit. Seidman concluded by saying that use of PHRs increases ongoing communication for risk reduction, health promotion, care management, and, ultimately, decision support, particularly concerning high-end procedures. The Center for Information Therapy’s annual meeting will explore HIT and patient-centered care as well as information therapy and health disparities, plus information therapy and health literacy. DISCUSSION George Isham, M.D., M.S. HealthPartners Moderator An audience member said that what has been presented certainly has implications for building the medical home. The challenge will be to involve patients. Gauthier responded that in the PeaceHealth project participating clinics were often the first ones to introduce the concept of the Shared Care Plan and its personal health record to patients. They would display tent cards on their desks and stickers on their windows that said, “We support the Shared Care Plan.” That advocacy for the personal health record helped convince patients. Solomon said that MiVIA is actually the medical home for the people
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary it serves because those members have so many providers. A member may go to a public health clinic, an emergency room, and two or three clinics in a just a few months. If the patient’s health information is dispersed throughout all those sites, it can contribute to poor outcomes for the member. MiVIA, as a single storage site, can facilitate better coordination and outcomes. This does not mean that the various facilities do not have their own charts, but all the information relevant to the member is stored in the MiVIA personal health record. The same participant asked what the repercussions are regarding reimbursement and revenue streams for using these electronic tools, especially for the providers who are providing clinical care. Solomon replied that, for MiVIA, the members are mostly uninsured and use clinics that are reimbursed under special programs. It is critical, however, to start looking at how to promote reimbursement to providers so that they participate as partners with their patients in getting this information online. PHRs, especially with vulnerable populations, contribute to costs savings because results of tests are located in the record, which negates the need for running the same test or for scanning multiple times as the patient visits multiple providers. One participant said that hearing about the Shared Care Plan is awe inspiring. How applicable is it to other parts of the country? The Shared Care Plan is in a rural area with a defined set of providers, and the patient research was conducted in that community. What can be learned from that work to think about how to apply this in other places? Gauthier responded that the circumstances in Whatcom County did enable the project to move farther than, perhaps, other locales would. What was done in Whatcom County is available for download, but what is of foremost importance is that those constructing PHRs should conduct user research. One may or may not end up with the same kind of PHR that Whatcom County did. Certainly the example of MiVIA shows that things vary from city to city. Another very important lesson is to give patients the respect they deserve for what they are trying to accomplish in the health care system. Many people have the attitude that getting clinicians together in a room to brainstorm about what patients need is sufficient, but that is simply not true. Just because a clinician works with patients on a day-to-day basis does not mean that the clinician understands what patients are experiencing at the pharmacy or when they go home. Another useful thing would be to standardize the definition of a personal health record and the components that make up that record. Solomon said that the Markle Foundation, as part of its Connecting for Health work (http://www.connectingforhealth.org/workinggroups/personalhealthwg.html), will be releasing some recommendations, principles, and
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary policies regarding personal health information and the term “network PHRs.” The technology is fast developing to the point where, given standards, one should be able to take a PHR from one system to another and share information. In terms of usability in separate locations, MiVIA has been implemented not only on the West Coast but also in New York. Two networks that have migrant streams that go from New York to Florida are enrolling the members in New York and then having the clinics in Florida connect with those in New York. But the most important things, Solomon continued, are first to educate, then to engage in outreach, and finally to proceed with implementation. One needs to educate the public and the provider communities about how PHR and technology can help. Next, outreach with communities and providers must be undertaken. Finally, one must implement the program. One audience member said that, given the discussion, it seems correct to say that there is no standard PHR design or dominant design in the country. Is there a standard interface with electronic medical records? Solomon responded that a standard interface is emerging. Just as CCHIT (Certification Commission for Healthcare Information Technology) offers certification for electronic medical records, HL79 will soon be releasing recommendations for interfaces around certain parts of the PHR. Standardization could happen, although it has not yet been accomplished. Information can be downloaded from the HL7 website at www.hl7.org. Gauthier added that there are definitely opportunities for standardizing personal health records, but there will always be a need for segmentation. For example, a patient could take an activation quiz to find out where he or she is on the health literacy scale and then be prescribed a certain type of PHR based on how health-literate that patient is. As the patient progresses in health literacy, he or she could easily move information to a different PHR. That is where standards would be key. Solomon was asked whether she thought that at some point any commercial application of EHR in the country would be able to feed MiVIA data. Absolutely, Solomon responded. MiVIA is already working with two electronic medical record companies and with other PHRs to accomplish this. One questioner asked whether, within the MiVIA PHR design, there are any standards for the way information is displayed, for the level or 9 “Health Level Seven is one of several American National Standards Institute (ANSI)-accredited Standards Developing Organizations (SDOs) operating in the healthcare arena. Health Level Seven’s domain is clinical and administrative data” (Health Level Seven Inc., 2008).
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary density of text, or for readability levels of charts or information. This would seem to be important given the differing abilities of people to read and comprehend. Or is this an issue that people are just beginning to realize is important? Solomon responded that this is an important issue. MiVIA has focused on technology, privacy, and security of applications. This third generation needs to start looking at health-literacy aspects. One participant, noting that several of the speakers touched on training and helping people understand how to use the technology, asked, Are there any best practices or standards for how to do that effectively or well, or is it so early that one is just at the point of doing something and sharing information? Gauthier responded that it has been her experience that people do not expect or want to have to go through a 2-hour training session to use a website. People expect to be able to sit down and use any website that is out there. With the newer technologies—for example, the so-called Ajax Rich Internet Applications—there is an opportunity to build robust contextual help. Patients may be listing their care team on the form with no problem, but then they get to the advanced directions and are at a loss for what to do. It is at this point that they are ready for a training module embedded in the application that could walk them through the process. Embedding more contextual training in the applications themselves is probably the best approach to take. Seidman agreed, although he pointed out that there is a portion of the population that is not yet versed in computers and does not use them. The idea of using promotores or community health workers as educators is a good one which seems to work well. There are other resources that can be deployed as well, such as librarians and other ancillary health professionals. In many cases, however, it is the community health workers who have been found to be most effective and the best use of resources. In one case, for example, a janitor’s union engaged unemployed janitors to help train union members in the use of computers. Union members’ reception of the training was very positive. Solomon remarked that, on average, it takes a physician anywhere from 4 to 12 hours to learn to use an electronic medical record. Outreach and training for the community using the promotores engages the members and is a good model. Such training is really health advocacy. During the session members learn about all kinds of things, including how to talk with the physician, how health care is important to the member, and the importance of the member being a partner in the health care experience. One audience member said that it is important that those designing PHRs want to listen—to hear from the patients about their needs. Starting with people’s needs and working with them is crucial. But how does one
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Health Literacy, eHealth, and Communication: Putting the Consumer First - Workshop Summary make that grow? Are there ways to use these approaches in adult education or in K-12 education to involve the next generation in skill building around use of these technological tools and to learn about the kinds of chronic conditions one might have, the immunizations one needs, and the medicines one takes? Another alternative might be to work with large employers and labor to engage populations in understanding information about their health and how to act on such information. Solomon responded that one of the successful things MiVIA did was to create a curriculum called the Student Health Ambassadorship Program. MiVIA representatives visited the local high school and, through the high school principal, recruited three ESL (English as a Second Language) students. For 3 months, these students met once a week for about 2 hours to learn about information technology, health advocacy and bilingual assistance. They worked with the outreach workers as well. One of these students was a shy young lady about 16 years old who would not look at anyone directly. That young lady is now a sophomore in college, focusing on health care. She has created her own curriculum and is working with PTAs (parent-teacher associations), the councils, and with teachers at various schools. Patient navigators or student health ambassadors are an important tool. Seidman said that working with promotores and community health workers to train people in the use of the Internet also creates other social and employment opportunities. He described his experience as a volunteer and president of the board of directors of a transitional house for homeless women in recovery from substance abuse in the mid- and late 1990s. At that time computers and the Internet were just beginning to emerge as being of major importance to individuals, and his group realized that women wanted to develop their skills with the computer. The board bought a computer for the house, and it became an important benefit for the women living there as they created their independent lives. Creating these kinds of opportunities is something that should be kept in mind. Isham concluded the discussion by stating that the presentations and conversations had been excellent in terms of helping the audience realize that there is an interesting interface between health literacy and technology that needs to be explored. It is not clear, however, that most of those engaged in developing these technological tools are currently aware of or exploring that interface.
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