This presentation is an expanded version of a webinar ... · This presentation is an expanded...

This presentation is an expanded version of a webinar sponsored by Krames Patient Education that I facilitated on July 29. You can get more information about Krames at www.krames.com. My name is Doug Seubert. I’m a health communications specialist, and you can learn more about health literacy and patient activation at my website, www.healthcommunications.org.

©2010 – Doug Seubert – www.healthcommunications.org

Agenda for this Webinar


Introduction: My name is Doug Seubert, I am a health communications specialist, and health literacy and patient activation are two things I am very passionate about. I’ve worked several years in health care and have been involved in some research projects, but recently moved over to the adult education/literacy side, working with literacy groups and public health organizations. Most of the information in this presentation comes from the work of others in the field. As a health communications specialist, and also as a health care consumer and patient and full-time care giver, I look for ways to draw from the research and to use available tools and resources to improve health communications. Improved health communications leads to improved health outcomes. Some disclaimers: I do not have any financial interest in or relationship with any commercial entities producing health care products or services. The information I am sharing with you, especially regarding tools and resources, comes from my personal and professional experience using them, I’m not here to endorse or sell anything. And I realize we have a mixed audience participating in this Webinar, so some of this information may or may not be new to you. And my health care experience was all within a clinic setting, so I tend to think in terms of patients and providers, but I am learning to now also think in terms of health care consumers and, in the literacy field, “learners” – so patient can also mean member, client, customer, etc.


With that said, lets begin with the concept of patient-centered, consumer-center, member-centered care. It’s care or services based on individual wants needs and preferences. It includes shared decision-making and respecting the decisions our patients, members, customers make. It’s also about providing them with the education and support they need to participate in their care.


Access to health information that is easy to understand and act upon is essential to empowering patients and consumers, and we as health care providers, service providers, have a responsibility to provide that information.


It is, therefore, the very definition of health literacy: the degree to which individuals have the capacity to obtain, process, understand health information and act on that information. A couple things about this definition form the Institute of Medicine: many tend to interpret the word “individuals” as only meaning patients or health care consumers. And “appropriate decisions” implies an attached judgment, as if to say we need to push people into making the decisions we believe are appropriate for them.


William Smith, who served on the IOM Committee on Health Literacy, participated in a discussion on the definition of health literacy on the national health literacy list-serv, and stated that “individuals” also includes organizations and communities, and health literacy also includes sharing information. So, this expanded definition includes all of us, on multiple levels: as patients and health care consumers, as community members, as health care professionals and service providers, and as care givers.


Dr. Schwartzberg, from the American medical Association, participating in the same discussion, made the point that health literacy also refers to the capacity of professionals and institutions to communicate effectively. And it’s about individuals and communities making informed decisions and taking appropriate actions to protect and promote good health.


Patient activation, as defined by Dr. Judith Hibbard, is simply the ability to manage one’s own health and health care. I’m using this definition and this term “patient activation” in this presentation because it includes a validated measure, backed by research. You may think of patient activation as engagement or empowerment, or even motivation, or self-care management, or self-efficacy. And it is all of these things. It is also the second part of health literacy definition: acting upon health information and participating in our care. Much of the focus in health literacy is still on the first part of the definition, obtaining, processing and understanding health information, with a large part of the research focused on how we as health professionals and service providers can make health information easier to understand.


To better understand the challenges of health literacy, we first need to look at literacy in America. There have been two national surveys so far: The National Adult Literacy Survey in 1992, and the National Assessment of Adult Literacy in 2003. A lot of information came out of these surveys and it is still being studied and reported. If you are not familiar with the data from these surveys, you can get full reports and report summaries from the US Department of Education web site.


This graph summarizes and compares both surveys: Literacy is divided into 3 types: Prose, document, and quantitative. Prose literacy involves the skills needed to read and understand passages of text. Examples include newspaper articles, educational brochures, and feature stories in a magazine. Document literacy involves the skills to both read and interact with the document. Examples include filling out job applications, navigating a table that compares different health insurance plans, using bus schedules and maps, and reading drug and food labels. Quantitative literacy involves the skills used in reading to make simple calculations. Examples include balancing a checkbook, figuring out a tip, completing an order form, or determining the amount of a co-payment. The findings in the first and second national literacy assessments are similar: Approximately one third of adults in America have basic or below basic prose and document literacy skills, and about one half of the adult population has basic or below basic quantitative literacy skills.


Reading grade level is another way to evaluate literacy skills. While the national surveys classify literacy skills as proficient, intermediate, basic and below basic, it is also helpful to consider reading grade levels. There is not a clear or direct correlation between the literacy skill levels and reading grade levels, but in general terms, based on related research, we know that the average adult in America reads at the 6th-8th grade level. That puts the majority of American adults in the basic and intermediate literacy levels.


Here’s a good study to reference. I find it helpful to have evidence to back up statements such as this, because many people, when first hearing this statistic, don’t believe it. This is also the basis for universal design: aim for writing and designing health education documents that can be used with the broadest audience. Writing at the 6th-8th grade level will be appropriate for about 80% of your patients, members, clients or customers. The remaining 20% may be those who need information translated into another language, or those with vision impairment that need materials printed in a larger font, and those who cannot read at all, and those who prefer getting health information and education in other ways besides reading a handout.


And when you are trying to change the way your organization develops or purchases patient education resources, it’s good to have solid evidence to support aiming for a 6th-8th grade reading level.


Sometimes pushback comes from thinking we are “dumbing down” health information. First, that term itself is rather offensive, but second, research shows that most everyone prefers as well as benefits from health information that is written in plain language and that is easy to understand.


“Teaching patients with low literacy,” one of the most important texts in the field, gives the same recommendation to write health education materials at the 6th-8th grade level. But Doak, Doak and Root also provided research that shows most health information is written at a 10th grade level or higher. Thinking back to the national literacy survey results, health information at this level is aimed at the top 13% of the population with proficient literacy skills. In other words, we are making it more difficult for 87% of our patients, members and clients, and more likely that they will misunderstand or misinterpret the information, or greater still that they just won’t read it at all.


A few years ago I was awarded some grant funding to develop a health literacy toolkit and recommendations for improving patient education materials at a large physician group practice. Part of the project included accessing and evaluating existing documents. A survey went out to staff, and since the topic of the grant focused on healthy lifestyles (healthy eating, physical activity, prevention), I first determined which handouts in the current patient education catalog were used most often. Then I used the SMOG readability formula to calculate at what reading grade level these materials were written at, and came up with an average score of about 12th grade, which verifies the research of Doak and Doak and others that most health education is written at the 10th grade level and above. The survey also asked physicians, nurses, pharmacists, and other health care providers to agree or disagree with the statement “the education materials I use most often are written at a level that is easy to understand for most patients.” Most agreed, however nurses were more likely to disagree or at least somewhat disagree. As health professionals, we are familiar with the medical terms, and we are used to long sentences with multi-syllable words and lots and lots of prepositions! And when we write, we tend to have a preference for the passive voice.


Here’s a good example. What grade level is this written at? Yes, it has some medical terms, but it is important for patients to become familiar with the language of their condition, especially the words they will hear from doctors and pharmacists. If I need to have an INR blood draw over and over, I’d like to know what INR stands for, even if I may not fully understand it. But there are also long sentences, and passive voice “medications that are being taken” … and muti-syllable words like regulated and consistently.


It scores at about the 14th grade level. And that’s just one paragraph in a 30 page booklet given to patients when they enroll into the anticoagulation care management program. Many of these patients are over age 65. Most are reading at around the 6th grade level. As one of those patients would I struggle through this booklet? Would I even try reading it?


Here is the basically the same information, this time from a book available through the Agency for Healthcare Research and Quality. Shorter sentences. Information is broken down into three paragraphs. The color bar illustrates the main concept. International Normalized Ratio is still included, but the only other multi-syllable words are medicine and important, which are rather common and familiar. What grade level is this?


It scores at the 9th grade level. Without International Normalized Ratio it drops to about 7th grade, right in that 6th-8th grade target range.


Here’s another example in the form of a letter to a patient explaining recent lab results. Again, there are medical terms, but it may be important for patient to be familiar with these terms. If this a lab that is done frequently, the patient may be familiar with the medical terms and an explanation isn’t necessary. However, based on the rest of the letter, I doubt this is the case. This letter illustrates another proclivity of health care providers: they tend to write differently than they speak. When was the last time your doctor advised you to continue to utilize your medications? The principles of plain language, and a preference for a conversational tone (what the American Medical Association refers to as “living room language”) over medical and technical jargon, goes a long way in improving health communications.


This letter scores above a 14th grade reading level.


A quote from Einstein summarizes plain language.


I’m a Krames customer, and I’ve worked for health care organizations who use Krames education materials. In fact, as part of a Centers for Medicare and Medicaid demonstration project, I was part of a team that wrote and designed patient education materials on high blood pressure, high cholesterol, diabetes and heart failure, all of which has now been replaced with Krames products. Krames incorporates plain language guidelines and health literacy recommendations: information is written at the 6th-8th grade level, information is grouped into easy-to-manage sections or topics, and illustrations, graphics and video make the information easier to understand and enhances learning and recall.


The National Assessment of Adult Literacy included an assessment of health literacy, providing a wealth of information about how people read, understand, evaluate and make decisions regarding health information, including texts and documents commonly used in clinic and hospital settings, public health and prevention, and the health care system in general: appointment reminders, prescription labels, information about specific conditions, how to select a family doctor and choose a health care plan.


The results for health literacy are closely related to literacy overall, with over one third of the adult population having basic and below basic health literacy skills and only 12% having proficient health literacy skills, meaning as much as 90 % of the adult population at sometime may have difficulty following the directions on a prescription bottle or understanding tests results, or even filling out a health history form. While literacy and health literacy are closely related, they are not mutually inclusive. Someone with adequate literacy skills can have low health literacy, simply from the fact of not being familiar with medical terminology, for example knowing what LDL means or that hypertension means the same thing as high blood pressure. There are other factors that impact our ability to process and understand health information, including depression, pain, fatigue, anxiety, and even some medications. For example, hearing bad news, such as a diagnosis of cancer, can make it very difficult for a person to listen and understand what the doctor is saying. But mostly, the same risk factors for low literacy also apply to low health literacy: for example, poverty, race and ethnic background, level of education, and age.


In these two graphs, health literacy skills are separated by race (on the left) and age (on the right). Significant differences suggest disparities, particularly for populations whose native language is not English. Looking at health literacy skills broken down by age, there is very little change over the life span through adulthood, until the age of 65 and above. This suggests that older people are more likely to have lower health literacy skills. There are many contributing factors, including the decline in vision and hearing that is a normal part of the aging process, as well as other cognitive changes including memory loss. Also, health care becomes more complicated for many older people. As much as 80% of the population over age 65 have at least one chronic disease, and, on average, is taking 11 prescribed medications. It’s important to note that some people can be in more than one risk group. For example, an elderly Hispanic woman is more likely to have low literacy skills, particularly is she is managing one or chronic conditions.


So, who is at risk for low health literacy? Older adults Racial and ethnic minorities Non-native speakers of English People with less than a high school degree or GED certificate People with low income levels People with compromised health status Is there anyone missing from this list?


Everyone – that’s one thing that distinguishes health literacy from literacy. Our literacy skills are learned and usually remain stable. But health literacy can fluctuate over time. A new diagnosis, medical terms we are not familiar with, hearing “bad news” or just being sick can impact how we process and understand health information.


In the literacy field, we do use tests and evaluations to assess literacy levels, but we don’t typically screen for low literacy in health care settings. There is a stigma of shame and embarrassment associated with low literacy, and most people who cannot read work hard at hiding it and will often develop compensation strategies. As many as 75% of those with low literacy skills will not share this information with their health care providers, coworkers, and even spouses. Even those with adequate literacy skills may have low health literacy skills, and likewise will usually not tell their doctor that they do not understand her instructions, and often will not ask questions because no one likes to feel stupid in front of the doctor. So, we shake our heads yes when we are asked if we understand, and when we are asked if we have any questions we’ll usually respond, “no” and then leave the medical appointment confused, uninformed and dissatisfied. So you can’t tell by looking, and you can’t expect patients to tell you. There are clues to watch for (missed appointments, incomplete health forms, statements like “I’ll read this later” or “I forgot my glasses” and identifying medications by sight, not by name).


There are also several tests or screenings for low health literacy, the three most common being: Rapid Estimate of Adult Literacy in Medicine (REALM) Test of Functional Health Literacy in Adults (TOFHLA) The Newest Vital Sign (NVS) REALM and TOFHLA are typically only used in research, but the newest vital sign was designed to be used during a medical appointment. A patient uses a food label to answer prose, document, and quantitative literacy questions. Each of these tests or screenings generates a score that can be used to evaluate a patient’s health literacy skills.


But much of the current evidence does not support screening for literacy or health literacy within the clinical setting. One reason is the stigma of shame and the fact that some patients may take offense. But also, if patients with low literacy avoid medical appointments because they are afraid of being “found out,” how many are more are going to skip medical appointments if they know they their literacy skills will be assessed with a test or screening at the visit? There is also a time factor – screening can take anywhere from 3 to 15 minutes, not to mention the time for training providers how to administer the screening and evaluate the results. But the strongest argument against screening for literacy in the clinical setting is what happens after you determine a patient has low literacy skills? Does that mean you then need to take extra time to explain medical terms, use the “teach back” method to check for understanding, provide patient education materials that are easier to read and understand? Well, these are things we should be doing for every patients, all of the time.


The recommendation, then, is to exercise universal precautions, which makes sense knowing that only 12% of the adult population have proficient health literacy skills. We’ve already discussed printed education materials and the recommendation to aim for a reading level of 6th-8th grade. There are other communication techniques that have evidence showing they improve comprehension and recall, as well as improve adherence to treatment and overall health outcomes.


In 2007, physicians, nurses and pharmacists attending continuing education programs on patient safety and health care quality were invited to participate in a survey about effective communication strategies.


The survey asked providers to rate strategies and recommendations designed to improve communication with patients: What communication strategies are most effective? What communication strategies do you use most often? I know the graphic is hard to read, but the black lines represent effectiveness and the gray lines frequency of use. Just quickly glancing over the graph, there are several communication strategies near the bottom that are considered to be very effective, but at the same time are used less frequently. These strategies include using illustrations and models to “show” as well as “tell,” following up by having another member of the care team speak with the patient immediately following the visit with the provider or within a day or two of the visit by telephone, and having another family member or care giver present at the appointment. But let’s look at the top of the graph.


I enlarged it to make it easier to read. Using simple language ranked as the both the most effective as well as the most frequently used communication strategy. Using printed materials was ranked as the second most used communication strategy, but it was ranked last in effectiveness. Using handouts is a quick way to get information to patients, and many patients request them, but it ranks low in effectiveness because many providers expect most patients do not read them, and as we have seen in the earlier examples, most health information is written at the 10th grade level or above, making it a challenge to read and understand for many patients. Using the teach back method to check for understanding is ranked as effective by 90% of the providers in the survey, yet less than half report using this strategy frequently. Teach back can be used to check for understanding. It’s commonly used after going over instructions with a patient and then asking them to repeat back what they are going to do. It can—and does—happen that antibiotics prescribed to treat an ear infection are administered in the ear. Using the teach back method is a good way to check for understanding and to correct and restate directions if needed. But teach back that includes a “show” as well as “tell” are even more effective.


Consider this example: Patients in a research study were screened for literacy and then given the direction “take two tablets by mouth twice daily.” The teach back method was used to check for understanding. The requirement was to indicate that two pills would be taken in the morning, and two pills in the evening, or any similar statement resulting in a total of 4 pills taken in the day, two doses of two pills separated by a time interval (two pills at breakfast, two pills at bedtime, etc.). About 90% of those with adequate literacy skills were able to restate the directions correctly. About 84% of those with marginal literacy skills were able to restate the directions correctly. And about 71% of those with low literacy skills were able to restate the directions correctly.


Next, the participants were asked to demonstrate how they would take the medicine. The requirement for a correct answer was removing four pills from the bottle, and separating them in to two doses of two pills, and again stating the directions indicating a time interval between the doses. About 80% of those with adequate literacy skills were able to demonstrate the directions correctly.


About 63% of those with marginal literacy skills were able to demonstrate the directions correctly.


But only about 35% of those with low literacy skills were able to demonstrate the directions correctly. That means about half of those who correctly restate the directions are unable to actually take the medication correctly. Teach back that includes “show me how” helps identify and correct potential medication errors. Another quick example from a care management program: A nurse was doing a follow-up phone call with a patient, and while reviewing the patient’s medical record and results of his most recent medical visit, noted the provider instructed the patient to increase the amount of fiber in his diet. The nurse asked how that was going, and the patient reported that he looked at the fiber powders and supplements at the pharmacy and said he couldn’t afford them. The nurse then discussed other ways he could get more fiber into his diet. Most likely what happened, the doctor said “increase your fiber intake,” patient said “ok,” doctor said, “any questions?” patient said, “no.” A discussion about how to do this, followed by a teach back (or “tell me how you are going to add more fiber in your diet?”) would have caught this.


So what are the impacts of low health literacy? There are high health care costs associated with low health literacy. A health care policy report published in 2008 estimates that in the United States, low health literacy increases health care costs by hundreds of billions of dollars every year, with staggering projected costs in the future. We also know that health care costs for patients with low literacy skills are on average 4 times higher than patients with adequate literacy skills, and there are several contributing factors.


People with low literacy skills are less likely to obtain preventive health services such as cancer screenings like colonoscopies and mammograms, and immunizations such as an annual flu shot. People with low literacy skills are twice as likely to be hospitalized, and when they are, they remain in the hospital more days per each admission compared to patients with adequate literacy skills. People with low literacy skills are less likely to adhere to treatment recommendations, are more likely to misunderstand directions for taking medications, are more reluctant to ask questions and seek clarification from their health care providers.


But what about people with low activation? What we know might sound familiar: People with low activation are more likely to delay care and less likely to seek and obtain preventive health services. People with low activation are less likely to comply with recommended treatment and less likely to engage in self-management of health conditions. People with low activation are less likely to report that they set goals or were taught how to self-monitor their condition and people with low activation also appear to get less support in managing their health. And people with low activation are less likely to ask questions and seek out additional information about their condition or treatment.


People can have low health literacy and low activation. That puts them in the highest risk category: at risk for making medication errors, not adhering to treatment, missing appointments, missing prevention screenings and services, etc. We can reduce these risks by raising health literacy skills (we do this by providing health information that easy to obtain, process and understand) and by increasing activation. Doing both can move patients into the lowest risk category.


One finding of Dr. Hibbard’s research that fascinates me is that activation may actually compensate for lower literacy skills.


Dr. Judith Hibbard, form the University of Oregon, developed the concept of patient activation and the Patient Activation Measure (PAM).


I want to take a couple minutes to talk about a national study using the Patient Activation Measure to access the level of activation in the U.S. adult population. Just as we have national data for literacy and health literacy, this study conducted by the Center for Studying Health System Change provides a snapshot of patient activation.


Some of the key findings: Levels of activation vary considerably And activation is lowest in populations with low incomes, less education, those who self-report poor health, and Medicare/Medicaid enrollees. These are the same populations at greter risk for low literacy and low health literacy.


The study found that less than half of all adults are in the highest level of activation. Even at this level, most people still struggle to maintain healthy behaviors. Activation also fluctuates, and can change overtime.


The four levels of patient activation. A patient can move both forward and backward on the patient activation spectrum. Overall literacy often remains the same over time: can decline with age, can improve if patient with low literacy skills seeks assistance from a resource such as their local literacy council. Health literacy and patient activation fluctuate over time, impacted by a number of factors, and is often independent of a person’s overall literacy skills. In other words, a person with high literacy skills can have low health literacy or low activation or both. Likewise a person with low literacy skills can be activated, and higher activation can compensate for lower literacy skills.


Common beliefs and statements of patients at various levels of activation. Notice the difference at Level 1: “My doctor takes care of me” vs. Level 4: “My doctor can only do so much. I have to manage my health.”


Part of the patient activation measure survey (short form is 13 questions). Patient activation begins with an awareness that I am responsible for managing my health.


The Patient Activation Measure (both the long and short form) is validated, reliable, and predictive.


Increased levels of activation correlate with increased self-management behaviors.


Using chronic disease as a summary/comparison of low health literacy and low patient activation. Patients with low literacy as well as patients with low activation (and a patient can have both) are less likely to engage in self-care management and less likely to comply and follow through on lifestyle changes and treatment recommendations.


A research example: Project IDEAL looked at health knowledge acquisition and retention and compared it to adherence over a 12 month time period. Participants in the research were enrolled in the program through community health clinics. Strategies to improve health literacy skills were included in the design of the education program. Participants were tested and surveyed regarding their knowledge of several self-management behaviors to manage diabetes.


Participants scored very high in knowledge of medications to manage diabetes, as well as how to take the medications, what they do, and why they are important. Participants also tested high in knowledge of how to test blood sugar and why it is important. Participants also scored high in knowledge about healthy eating. After a month, only 78% of participants were adherent in taking their medications, and after a year adherence dropped to 51%. While knowledge was high about how to test blood sugar levels and why this is important, after one month 66% of participants were testing their blood sugar as directed, and after a year adherence dropped to below 60%. Healthy eating seems to be a behavior many patients struggle with. While nearly 90% of participants scored high in knowledge of healthy eating strategies, after one month, only half were adhering to the recommendations; and after a year, adherence dropped to under 20%.


What do these findings tell us? Knowledge is not enough Self-management skills must be included, and patients need to be activated or motivated to adhere to recommendations Education and support needs to be continuous Health literacy and patient activation should be considered as strategies to improving patient-centered care Evaluate and meet patients where they are


Meeting patients “where they are” is an important element of patient activation. Using the Patient Activation Measure as baseline, and then measuring at set intervals does a couple of things: First, it helps the provider, care management nurse, case manager, care giver evaluate activation levels and to tailor education and action steps accordingly. Second, it provides an opportunity to check for progress over time. Research using the Patient Activation measure in this way revealed the benefits of a step approach, and that patients can be moved to higher levels of activation by building off of small successes that increase confidence and self-efficacy. Also, more complex, complicated behaviors require higher levels of activation. For example, focusing on exercise and counting carbs requires level 3 and 4 activation skills and confidence, and would not be an effective strategy for patients in the lowest levels of activation. Starting there most likely would cause high levels of anxiety and increase the likelihood of failure, and it’s hard to recover from failure. It leads to “I tried that and it didn’t work” syndrome. But taking small steps and building on success is an effective strategy for increasing activation. And increased activation, the research shows, leads to improved self-care management.


So lets put this all into perspective by highlighting some examples from the field. For each example I have included a research study and then describe initiatives designed to translate those research findings into practice. The first impact case study focuses on health literacy and patient activation strategies to improve adherence to medication and treatment plans.


The first research example is Williams et.al, “Inadequate literacy is a barrier to asthma knowledge and self-care,” a study from 1998, between the two national literacy surveys.


This study included about 500 patients with a confirmed diagnosis of asthma. The REALM was used to measure health literacy, a 20 question oral test and inhaler technique demonstration was used to measure asthma knowledge. Less than 30% of the participants read at above the 8th grade level, 40% read at the 6th grade level or below. Key findings: Patient reading level was the strongest predictor of asthma knowledge Reading level was the strongest predictor of MDI technique Inadequate literacy was common and strongly correlated with poorer knowledge of asthma and improper MDI use How can we improve adherence with patients with low literacy? Can increasing patient activation compensate for lower literacy and improve asthma knowledge and medication adherence?


A pilot study is currently looking to answer these and other questions. It is a pharmacist-led, telephonic intervention with patients enrolled in a federally qualified health center. Demographic information for this mostly rural population includes low income and low education levels, so we anticipate higher levels of low health literacy and low activation and have built in strategies within the intervention to address these issues.


We defined non-adherence using this criteria.


Our initial pull of data from a sample of the population showed a high incidence on non-adherence.


We used the TOFHLA to assess health literacy at baseline. We are also using the Patient Activation Measure at baseline and post intervention; the Medication Adherence Measure; monitoring prescription refill data; conducting the Asthma Control Test at baseline, at each intervention with a pharmacist (three telephone calls over 6 months) and again at the end of the study; as well as collecting additional data through participant surveys and review of the medical record.


The goals of the study are to: Increase asthma patients’ adherence to prescribed regimens Identify barriers, including health literacy and patient activation Tailor education and coaching within Medication Management Therapy And test a standardized counseling framework My role included quality assurance of phone calls The study concludes this fall, manuscript will be published.


There are some initial findings: Participants have different definitions of good asthma control For some, having to use a rescue inhaler 3 times a week is “good control” – even though scores on the Asthma Control Test do not coincide. There is a lack of understanding about the different types of inhalers, control vs. rescue inhaler, and the purpose of each. In fact, a common request of participants is to only have one inhaler. Part of the standardized framework includes an evaluation of inhaler technique over the phone. Not surprisingly, inhaler knowledge and technique varies considerably. Many patients express that they would more education and support, but are unaware of available resources.


The second impact case study focuses on patient access to the electronic medical record.


The research example illustrates the impact of a web-based diabetes program and personal health record on diabetes quality of care.


The purpose of the study was to evaluate whether patient access to their personal electronic health record could impact glycemic control and other risk factors in patients with diabetes.


Participation in the program required each person to create a user name and password on the web-based health management system and complete a diabetes assessment questionnaire as part of the chronic care management tool. The tool provided participants with an assessment that included a diabetes report card displaying user-specific information on treatment goals, risk-factor management, and screening tests in an easy-to-understand format. The tool also provided each user with a summary of his/her results (from the EHR) for a number of measures including hemoglobin A1c, blood pressure, LDL-cholesterol. The data were stored in the user’s personal EHR and accessible through his/her secure web portal. In addition, the data were delivered electronically to the healthcare provider of each participant and follow-up with the provider was encouraged.


During the six months following web-based diabetes education and goal setting, HbA1C fell significantly from 8 percent to 7.2 percent in the participants, but not in the control the control group.


Similarly, total cholesterol and LDL cholesterol were reduced in the participants but not in the control group.


One important factor is that the education program used in this study focused on patient empowerment and emphasized the importance of each patient knowing target goals for A1c and LDL, and that feedback of lab results included their providers.


Is there a digital divide? In a recent survey of members in a federally qualified health center, 60% reported that they never use the Internet, and another 9% said they rarely use it. This follows data gathered through the National Assessments of Adult Literacy that showed those with below basic literacy rarely use the Internet as a source of information. The best way to reach patients who would most benefit from health literacy initiatives, then, is not through the Internet. But most of the information and tools available are web-based. Health care providers and organizations need to find ways to make this information accessible to those who do not use the Internet.


Patient wellness summaries or personal health records take the information available in electronic health records and can make them available through a secure web portal, or they can also be printed to share with patients who do not use or have access to the Internet.


What is the patient wellness summary? A document shared with patient during a primary care visit that draws from the electronic medical record in real time that can include: current and trended data for vitals and lab results current medication list preventive services list care plan


Similar to the research example we just looked at, similar findings came out of pilot testing a paper copy version of a patient wellness summary in a large physician group practice. Feedback from patients and providers showed promising results in that the wellness summary: Promotes personal responsibility Serves as visual aid in discussion during the care visit Provides feedback that shows the impact of treatment interventions Promotes causal links: “My weight has gone up and so has my blood pressure and my LDL” Serves as motivator for patients who do not want “OVERDUE” on their list of preventive services Promotes goal setting and shared decision making: “What do you want to do about this?”


A similar tool, called a patient care report, was developed and studied in a small physician group practice.


Results of the study again showed that the patient care report engendered a sense of personal responsibility and that patients want to check their numbers during visits with their providers.


The Medical College of Georgia is also studying how access to an electronic personal health record empowers patients. I like this patient comment: “We don't waste a lot of time on history, on how have you been, what have you done? It's more, ‘We had goals and where are you at now with that? How's this working out?’ I feel like my 15 minutes is fully packed, whereas before 10 of it was spent trying to get to where we needed to be.”


Any questions? WHEN DO PEOPLE USUALLY ASK IF YOU HAVE QUESTIONS? At the end of the presentation At the end of the visit


One third of patients leave the doctor’s office without getting answers to important questions. REMEMBER: patients with low literacy skills and patients with low activation are both less likely to ask questions. Asking questions is an indicator of an activated patient.


The third impact case study I want to share is about encouraging patients to ask questions and to create a list of questions as an agenda setting tool for medical appointments.


The research example comes from Katz, et. al, “Patient literacy and question-asking behavior during the medical encounter.”


The study looked at the impact literacy has on the number and types of questions asked by patients during primary care office visits. Patients with low literacy skills asked fewer questions. They were also more likely to ask the physician to repeat something that was just stated. Patients with higher literacy skills asked more probing questions and in effect received more information about their medical conditions and treatments. One of the characteristics of activated patients is asking more questions. Raising activation levels in patients, regardless of their literacy skills, could help bridge the information gap… but can asking more questions actually improve health outcomes?


There is actually very little published research to show that interventions that encourage patients to ask questions have a positive impact on health outcomes. However, there is evidence to support that even simple interventions increase question asking among patients who would otherwise not ask questions. Use of question prompt sheets and agenda setting tools are often well received and considered useful by most patients; they increase patient satisfaction; and in one study, where patients were offered a list of questions prior to a medical consultation, doctors reported these patients to be taking more initiative and control, especially in subsequent visits. While there is no direct evidence linking “question asking” to improved health outcomes, it is not a big leap to suggest that increased patient satisfaction, higher levels of trust, and increased patient involvement lead to better understanding, improved patient adherence, and a decrease in the opportunities for miscommunication and medical errors. Overall, these benefits do impact patient health and outcomes.


Ask Me 3 is one tool that encourages patients to ask three simple but essential questions and the end of each visit.


The three questions are: What is my main problem? What do I need to do? Why is it important for me to do this? Which question is most important?


What if I ask these three questions and I still don’t understand? To be effective, patients need to be trained to ask the questions and health care providers need to be trained how to answer them. Some recent studies have shown that the three questions alone have little impact of changing outcomes.


Questions are the Answer is a tool developed by the Agency for Healthcare Research and Quality. It is a national consumer education campaign.


Questions Are the Answer Website


Questions Are the Answer PSA.s. You might have seen the singing/dancing doctors and nurses. New PSAs added include examples of people asking lots of questions: a woman ordering dinner at a restaurant, and a man shopping for a cell phone. Each commercial ends showing them at a doctor’s appointment with the doctor asking, “Any questions?” and both say “no.”


Interactive “build your list of questions” tool


“Questions Are the Answer” is different than Ask Me 3 in that it promotes pre-visit planning and agenda setting. The focus is on preparing for the appointment and thinking about what questions to ask. (Ask Me focuses question asking at the end of the visit).


Questions Are the Answer also reinforces strong patient-centered, patient-activated messages.


AHRQ tools and resources in the public domain and can be linked from your organization’s web site. In this example, several AHRQ tools, including Questions Are the Answer, are linked to the “request an appointment” page and also on a page encouraging patients to prepare and plan ahead for upcoming visits.


And Questions Are the Answer was imported into their Krames library, including a link to interactive ‘build your list of questions” tool. Since we discussed that patients with low literacy skills or low activation are less likely to use or have access to the Internet, Questions Are the Answer is available as a brochure. It can also be used as a question prompt tool or agenda setting tool that is mailed to patients with their appointment reminder, or available for them to fill out in waiting areas, or can be gone over with the patient as part of the patient rooming process.


There is definitely an issue that is typically raised about more active patients -- namely whether they increase the length of appointments and, thus, result in excess time and cost.


An interesting study, which by the way confirmed findings from 4 similar studies, compared a group of patients who received activation training with a control group who did not receive any training. The training included a communication skills training booklet that was mailed to patients 3 days before their scheduled appointments. Patients were also instructed to check in 30 minutes early to participate in a face-to-face follow-up with session before seeing the doctor. This relatively simple and inexpensive intervention was very effective. Patients who received the training provided more information about their health status and concerns. They also sought out more information, namely by asking more questions. Patients in the trained group also verified information more frequently. For example, they would repeat back what they understood the doctor said to them and asked if they were correct, like a self-initiated “teach back.” During follow-up interviews, both patients and providers had higher satisfaction about communication and patients felt they had a better understanding of the doctor’s recommendations. This study also looked at the length of the appointments. Patients who were trained to be active by providing and seeking out more information, asking more questions, and verifying information did not require longer appointments. In fact, on average, appointments with trained patients were nearly four minutes shorter than appointments with patients who did not receive communication skills training.


Time to Talk CARDIO is a program to help patients and health care professionals make the most of their conversations by building communication skills to help better manage heart health. You start by completing a survey, rating statements on a scale of strongly agree to strongly disagree. Statements for patients include: My health care professional sometimes used confusing medical terms. My health care professional did not explain my medical problem in a way that I could easily understand. I was not comfortable asking questions. My health care professional did not help me feel that I could take care of my health and understand my treatment. After completing the survey, you can view of list of communication skills that are most relevant to you; you can view these skills in action by watching short videos of simulated office visits; and you can print or save your list of skills. The goal is to then practice and use the skills you learned during your next medical visit.


Start page for patients.


Example of skills with links to videos. In this example, patients learn to ask for clarification by repeating what they understand the health care provider just said to them. In a way, it is a “teach back in reverse.” --- “so, you want me to take this new medication twice a day: once in the morning with breakfast, and then again in the evening with dinner?” By watching video clips of each skill in action, patients can gain the confidence to try these communication strategies at future appointments. It activates the patient to take the lead and not have to rely on the health care provider to initiate a teach back.


Survey questions for health care providers include: I did not get all of the detail I wanted on the patient's current problem and symptoms. The patient has difficulty remembering my instructions. The patient was unfamiliar with medical terms. The patient does not take responsibility for his/her own health. Communication strategies from the health care provider point of view are demonstrated in a series of short video clips. Health care providers can learn more about these strategies and practice skills that can improve communication with patients.


Good patient-centered resources, including free tools that other health care professionals and organizations have developed and used with success, are available at the Institute for Healthcare improvement website.


The U.S. Department of Health and Human Services, Health Resources and Services Administration, has good information about health literacy available on the hrsa dot gov website.


The resources there include a six-part series of training in health communication that addresses health literacy, cultural competency, and limited English proficiency. The training is offered free of charge.


Another good and free training opportunity is the CDC’s health Literacy for Public Health Professionals.


The Agency for Healthcare Research and Quality commissioned the University of North Carolina at Chapel Hill to develop and test this Health Literacy Universal Precautions Toolkit. The toolkit offers primary care practices a way to assess their services for health literacy considerations, raise awareness of the entire staff, and work on specific areas. It contains 20 evidence-based tools for improving health communications and removing literacy-related barriers to improve care for all patients. Among the tools included is the teach back method and Questions Are the Answer. The toolkit also includes a self-assessment for clinical practices and health care organizations.


Patient activation tools, resources and best practices are available from the New Health Partnerships community Website. New Health Partnerships is a project of the Institute for Healthcare Improvement and offers resources and tools to clinicians, patients, family members, and communities so that they can effectively collaborate in self-management support.


Insignia Health is committed to helping patients and health care consumers develop the behaviors that are crucial to becoming more active self-managers and engaged members of their health care team. The Patient Activation Measure is licensed through Insignia Health. Their website includes links to current research on patient activation and you can download tools and resources from the community forums section of the site.


And Krames has a series of Go-To-Guides multimedia self-care workbooks that offer an engaging, interactive option for patient education. You can view samples on the Krames website.


I had a chance to review the Go-To-Guide for Living Well with Asthma, and the content is not only well written, but the interactive format really draws you in. Each Go-To-Guide includes a combination of easy-to-understand information and supporting tools to empower patients and build self-management skills that promote healthy behaviors. The intuitive interface makes it easy for users to get the information they need in the learning style that best suits them: reading, listening, viewing or any combination of the three. There are also interactive quizzes for learning verification. The content stresses the patient’s role managing chronic disease and provides tips and suggestions on working with your health care team. These really are excellent resources.


That’s all I have. I believe we have some time to take a few questions. You can also contact me by email ([email protected]) and you can download this presentation, a list of the tools and resources a mentioned and access other information on health literacy and patient activation at my website, www.healthcommunications.org.


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