The final panel addressed several strategies for effectively communicating numeracy concepts. The presenters were Robert Krughoff from Consumers’ CHECKBOOK, an independent, nonprofit consumer information organization; Brian Zikmund-Fisher from the Department of Health Behavior and Health Education at the University of Michigan School of Public Health; and Michael Wolf from the Health Literacy and Learning Program within the Feinberg School of Medicine at Northwestern University.
Robert Krughoff, J.D.
Krughoff said his presentation would give details of one practical solution to help consumers choose the right health plan for them. Consumers’ CHECKBOOK has a health plan comparison tool that can be adapted by the health insurance marketplaces opened under the Patient Protection and Affordable Care Act (ACA). This tool can simplify the process of choosing a health insurance policy for consumers so that their choices are easier and also the right choices for that consumer. The purpose of the tool is to help consumers with little knowledge of insurance or the health
care system without requiring much time or training. The context for Consumers’ CHECKBOOK’s recommendations is the nonprofit organization’s decades of experience producing websites and publications rating a variety of consumer products, from hospitals to auto insurers. No Consumers’ CHECKBOOK website or publication carries any advertising; the organization’s products are supported by consumers who pay to access the information. Krughoff said this provides motivation for the organization to produce information the people find valuable and useful. Krughoff said the most relevant aspect of Consumers’ CHECKBOOK experience is that for 34 years they have produced CHECKBOOK’s Guide to Health Plans for Federal Employees.1
Certain features are considered key for a health plan comparison tool, Krughoff said. First, a single dollar amount actuarial estimate of average total cost, including premium and out-of-pocket cost estimates for people with similar characteristics to the consumer, must be provided. A good comparison tool will also include the user’s range of risk for each plan, giving the total cost for good years and bad years and the probability of the consumer having those types of years. There should be an all-plan provider directory that lets the user see immediately which doctors are approved by the plan, Krughoff explained. Finally, it should include a summary rating for each plan’s care and service quality that the user can personalize based on the things that are a priority to that user.
According to Krughoff, consumers tend to be most interested in cost comparisons. The most common cost comparison tool for consumers who have a choice in health plans is the benefits description model. This model shows the consumer the benefits and coverage details, such as deductibles, copayments, and out-of-pocket limits associated with each plan. The weakness of this model, Krughoff said, is that research has shown that many consumers do not understand the terms and are not able to do the calculations required to understand this information. Yet even those with very high numeracy skills have trouble making good choices given this information because they do not know the likelihood that they will need different types of health services and the fees for those services.
Other models have been developed in an effort to simplify the cost comparison process, Krughoff said. He explained that one solution is the known-usage model, which compares plans by having the consumer estimate the number of provider visits and prescriptions that will be required in the next year. The model then gives an estimate of the cost of these services. This is time consuming to do for each family member, Krughoff said. But
the main problem with this approach is that it does not account for the risk of an unforeseen health event that may be very expensive.
Another model that simplifies health insurance choice is the Enroll UX2014 website that was funded and developed by a number of foundations.2 One feature of that model is that it asks the consumer’s preferences up front and then filters plan choices based on those preferences. For example, the model will ask if a deductible above a certain amount is acceptable, if a consumer will consider a health maintenance organization (HMO), or if a specific doctor must be available through the plan. The choices presented to the consumer are based on the answers to those questions. Krughoff said the weakness of this model is that it eliminates choices before the consumer even sees them. Consumers do not realize they may be giving up thousands of dollars by answering questions a certain way. Krughoff said consumers can make false assumptions, such as that a low deductible is the best way to save money or a low premium is a sure way to save money. This is often not the case.
Plan standardization is another method of simplification. Krughoff said there is merit to this approach because it allows consumers to compare premiums within a specific benefit package. The problem is that it is important to compare across packages as well because individuals have vastly different needs, and a package that might save one consumer a lot of money might prove to be very expensive for another consumer. In addition, limiting the packages reduces flexibility in developing benefit designs for consumers.
The Consumers’ CHECKBOOK model uses data from the Medical Expenditure Panel Survey and other sources to estimate the likelihood of various levels of usage and the charges related to that level of usage. From this, the model estimates a single dollar amount that is combined with the premium to give consumers one number that they can use to compare plans, Krughoff said. In addition to average costs, the tool offers people the option of seeing what the costs would be in a very good year and in a very bad year. In recent years, Krughoff said, the Medicare Plan Finder has adopted the same approach.
Krughoff said it is very challenging to design a quality comparison tool that does not require strong literacy or numeracy skills. One challenge is that consumers do not attribute differences in health results to differences in plan quality. They tend to attribute differences in health results to the providers the consumer chooses within the plan or to the consumer’s individual behavior. If patients are going to be involved and engaged in thinking about plan quality, they need to be educated on how plans can impact quality. Another challenge is that it may be hard for consumers to interpret differences in plan scores. To simplify presentation, Consumers’
CHECKBOOK uses a five-star rating system, but that does not give a sense of scale to the consumer. Two plans might have big differences in some categories, but still end up in the same quintile, or small differences, and end up in different quintiles. Attempting to get beyond this simplistic rating system, however, requires a level of complexity that is difficult for people to manage. Krughoff said that consumers want, and Consumers’ CHECKBOOK provides, a summary measure of plan quality. In addition, Consumers’ CHECKBOOK gives them the opportunity to get more detail about the summary measure and to give their own personalized weights to various dimensions of quality and thus create a personalized overall quality score. The challenge with quality measures and with other elements of comparison tools is that if consumers are forced into too much detail, they become disengaged.
Krughoff gave a tour of the tool that Consumers’ CHECKBOOK has developed to overcome these challenges. The tool is based on the website used by federal employees to choose plans from the Federal Employees Health Benefits Program and adjusted for use with the health insurance exchanges. Krughoff said that Consumers’ CHECKBOOK has learned that people receive information better in some formats than in others. As a result their websites provide information in text, audio, and video formats.
Personal and family information is imported into the tool from the eligibility module of an exchange, so a consumer does not have to enter that information twice. The first step of the comparison tool is to answer questions on self-reported health status. According to Krughoff, the Medicare Expenditure Panel Survey asks about self-reported health status, which is a very good predictor of usage. Next, the consumer can identify some medical procedures or expenditures that are expected within the next year, such as childbirth or a hip replacement. The consumer can also enter the names of one or more doctors that he or she would like to have available through the plan, and the tool then automatically shows them which of these providers are in each plan. This step comes with a warning to consumers that if certain providers are really important, they should check with those providers to make sure the plan will include them the following year.
The results are presented in a way that highlights average yearly costs, which is a combination of the yearly premium minus any tax subsidy and the costs that the consumer may pay out of pocket. Krughoff said the tool also provides consumers with the most that they would pay in a very high-usage year under each plan. This is important because the information given by individual plans may not be presented in a straightforward manner or may lack some information, such as failing to include drug costs in the out-of-pocket maximum. The quality measures are presented simply using the five-star rating method, but consumers are able to personalize the components included in the quality score. According to Krughoff, more than
60 percent of people make their plan choice based on the summary page, which includes total annual cost, highest possible cost, quality measures, and whether the consumer’s preferred doctors are in the plan. Consumers’ CHECKBOOK surveys and user testing have indicated that this is the information consumers want and the way they want it to be presented, he said.
More detailed information is available for those who want it, Krughoff said. Smaller numbers of plans can be compared side by side in more detail, for example. The consumer can also see more detailed cost information, including comparing a low-cost year and a high-cost year and the probability of one of those years occurring. Consumers can also look for plans with coverage for certain services, such as fertility treatments or acupuncture. They can also find out what the members of each plan have to say about various quality measures. This is helpful for those who are interested in a certain aspect of a plan’s quality rating, such as customer service or availability of doctors, and of others’ experiences in those areas.
Consumers also have the option of eliminating broad categories of plans that they do not want, such as HMOs or high-deductible plans, Krughoff said. But this option is offered after all of the plans have been presented to the user in the summary page. This way the consumer is less likely to exclude plans that would be a good fit without even knowing it.
Krughoff noted that it is possible to give consumers the information they need while keeping the format simple and understandable and allowing them to decide the level of personalization and detail.
Brian J. Zikmund-Fisher, Ph.D.
Department of Health Behavior and Health Education,
University of Michigan
Zikmund-Fisher said his presentation was not a review of the evidence on numeracy, but an argument that he hoped would be provocative. He began with the example of a fictional person called “Robert” (Zikmund-Fisher, 2013a). Robert is a stereotypical middle-age man living in the United States. He is not as healthy as he should be or wishes to be because he has hypertension, is overweight, and does not get enough exercise. Robert decides to use an online risk calculator to find out whether he is at risk for cardiovascular disease. The risk calculator asks Robert his blood pressure, his weight and height, his cholesterol, and a few other pieces of information before providing the result. Robert learns that his 10-year risk of cardio-
vascular disease is 14.52 percent. But Robert is confused; he still does not know whether he is at high risk or not.
The number provided to Robert—14.52 percent—may be the best estimate of his risk of disease that modern medicine could give him, Zikmund-Fisher said. Yet that number does not meet Robert’s need for information. Robert’s risk is not being effectively communicated to him through that number. Zikmund-Fisher said there are several problems with the way that his risk of cardiovascular disease was communicated to Robert. First, there is the level of precision. Although it is common for risk calculators to give numeric risk estimates to two decimal points, it is not necessary or beneficial. Research has shown that an integer is considered more believable as well as easier to remember than a more precise representation of risk (Witteman et al., 2011).
More important, Zikmund-Fisher added, is the fact that Robert did not get the information that he needed from the number. Robert needed to know whether he was at high risk of developing cardiovascular disease or not. Merely giving him a number does not answer that question for him. Decision-making research uses the term “information evaluability” (Hsee, 1996), which means that the meaning of a number depends on its context and whether the number can be evaluated by itself or requires reference standards to convey meaning.
For example, Zikmund-Fisher said, if workshop participants were shown a number that corresponds to the level of dioxin in blood, many would not know how to evaluate that data (i.e., to know whether it represents a high or low concentration or even whether being high or low is good or bad). The sense of confusion that workshop participants likely felt when presented with information about dioxin is the same feeling that many patients have when they are given any type of number in a health or medical situation without the contextual knowledge to explain whether the number is good or bad. Another example might be a person with type 2 diabetes who is working to improve glycemic control. If this person starts with a hemoglobin A1c measurement of 9.3 percent and after some time lowers that number to 8.3 percent, there is an important question: Will that person know whether the difference between those two numbers is large or small? Experts know that hemoglobin A1c values exist in a relatively narrow range, and thus a change of 1 percent is important. However, if the person with diabetes does not know that fact, then his or her ability to make sense of their test data is limited. Zikmund-Fisher said health professionals are trained to have the contextual knowledge for the numbers they give to patients, but they may forget that the patients often do not have the same background and hence will have a hard time deriving meaning from numeric information.
An example of information being presented with some contextual
information is the National Cancer Institute’s breast cancer risk assessment tool, Zikmund-Fisher said. The tool presents an individual’s risk compared to the average woman’s risk.3 A woman whose results show that she is above average may not remember her numerical risk, but she will likely note that she is in more danger of developing breast cancer than the average woman. Whether she will understand her risk in absolute terms is difficult to determine.
Information evaluability is linked to decision making, Zikmund-Fisher said. Easy-to-evaluate data have intrinsic meaning. For example, when speaking about health insurance plans and cost, an individual knows how much $100 is worth to him or her. People also know the difference between two doctors who are 10 minutes away versus an hour away. They do not need a reference standard to evaluate those numbers. They might, however, need a reference standard to make sense of an unfamiliar laboratory value or a breast cancer risk statistic. Decision-making research has found that hard-to-evaluate data given without a reference standard are generally ignored. It is possible to distort people’s perceptions by choosing one reference standard over another, but in the absence of any reference standard, the information receives no attention at all.
Zikmund-Fisher drew the analogy that information evaluability is related to numeracy in the way that functional health literacy is related to health literacy. It is the key to enabling someone to function in the numerical world—not just to recognize the number, but also to draw the meaning they need from the number to make the choices they need to make.
Zikmund-Fisher showed an example of a table from an electronic health record (EHR) (see Figure 5-1) that gave a patient’s lab results along with the normal range for those types of laboratory tests. He noted that patients are being exposed to information presented in this way more often because of EHRs and patient portals. The numeracy-related task for patients with information of this type is to recognize whether the values of their tests are outside of the range of normal. Some patients will be able to do that and others will not, Zikmund-Fisher said.
Yet, a better question to ask, said Zikmund-Fisher, is: Is this the information that is most important to the patient? Perhaps it is more important for patients to understand harm anchors or thresholds for action than the normal range. Using a different reference standard can give the patient information that is clearer and actionable. It is important to think about structuring information in ways that empower the patient, Zikmund-Fisher said.
Zikmund-Fisher said another problem with Robert’s story is that he
FIGURE 5-1 Can patients use this? An example of information from an electronic health record.
SOURCE: Zikmund-Fisher, 2013b.
was only given a number without any way of visualizing his cardiovascular risk. Zikmund-Fisher noted that he has done a number of studies that support the use of icon arrays as a way to communicate health information visually. One problem with these arrays, however, is that they are not easy to create with standard software packages. A tool, available at iconarray.com, has been developed at the University of Michigan that enables people to make and download icon displays in an effort to promote communication using more effective graphics.
Given that visual displays of information are often effective ways to communicate information, Zikmund-Fisher asked if Robert even needed a number. In areas outside of health, such as investing and financial management or consumer products, data are often presented qualitatively to facilitate decision making. For example, investment websites break risk down into categories. The potential investor can see which investments are high risk and high return versus low risk and low return without seeing any numbers. Consumer product reliability data are also often not reported in numeric form. They are reported in icon form because that best helps consumers understand the trade-offs involved in choosing one product over another. Zikmund-Fisher stressed that he believes data are important. However, conscious choices can be made to focus less on detail and more on the overall goal of the communication. Health may also be an area where a similar trade-off is appropriate. Patients have varying data needs, he said, and all communications are not equally informative.
Zikmund-Fisher noted that risk information exists on a spectrum (Zikmund-Fisher, 2013a). A risk communication designed to communicate all possible risks can be very simple, whereas a risk communication
designed to quantify incremental risk reduction associated with a particular therapy may be more complex. Considering the example of Robert again, Robert is looking for motivation to act. He wants a categorical communication that aligns with that goal, which he did not get from the risk calculator. Zikmund-Fisher said that communicators must always consider the congruence of the data types and formats given to patients to their immediate and specific needs. In other words, give people the right tool at the right time.
Patients have many needs with regard to information and communication that must be met to allow them to navigate the health care system and make the best choices for their situation. Zikmund-Fisher said this often leads health providers and communicators to feel the need to tell patients every piece of information known about their diagnosis or situation. Research shows, however, that this is not always what is best for the patients. The recipient of the message can be so overwhelmed by the data and the tasks involved in interpreting it that the information is lost. Zikmund-Fisher gave as an example an animation tool that he and some colleagues had developed to communicate information and aid in decision making (Zikmund-Fisher et al., 2011). The people using the tool became so involved in learning how to manipulate it that they lost sight of the information it was intended to convey. The lesson here is to focus on what people need to know and then give them that alone.
If the goal of the communication is for the person to assess whether they are at high risk or low risk, does that need a number? If the goal is for a person to make a careful trade-off between two courses of action, then a number may be necessary. Zikmund-Fisher stressed that he was not advocating withholding information, but rather recognizing that there is a difference between what needs to be seen initially and what needs to be seen eventually. Seeing information for the first time and trying to make sense of it is a different task than when the information has been absorbed. Communications need to be designed with goals and tasks involved in the communications in mind, he concluded.
Michael Wolf, Ph.D., M.P.H.
Health Literacy and Learning Program,
Feinberg School of Medicine, Northwestern University
Wolf said he was invited to talk about effectively communicating medication instructions, and he would narrow the topic to the numeracy and problem-solving skills required in medication use. Medication is one of the
most common tools in medicine to promote health and control chronic disease, but using this tool is difficult and challenging for people.
First, Wolf said, it is necessary to deconstruct the task and ask, “Why is taking medicine so hard?” Medication use is a dynamic task, with medications often being added and taken away from a patient’s regimen as well as dosages being increased and decreased (see Box 5-1). There are multidrug regimens with variable doses. Although the tendency is to think of medications as always occurring in pill form, in reality there are multiple devices to deliver medications. Medicines are prescribed in tapered and escalating, daily and nondaily, and as-needed or extended dosages. In addition, some patients must handle medications from multiple prescribers and pharmacies, increasing the complexity. Insurance can also have an effect on medication. As coverage changes, medication can change from brand name to generic, changing the appearance of the medication. It can also be difficult to synchronize refills, which can lead to multiple trips to the pharmacy.
Chronic conditions are on the rise, said Wolf, and patients are taking more and more medications. The focus must be on regimen use, safety, and adherence. The skill set required to manage medication tasks includes not only numeracy but other skills, such as reading, attention, and problem solving. All of these skills are related, Wolf said. Research based on data from the National Institute on Aging has shown there is a strong correlation between literacy and numeracy. High reading skills are strongly associated with being able to perform health tasks, and numeracy skills are associated
- A dynamic behavior (adding, changing, removing medication)
- Multidrug regimens, variable doses
- Multiple devices (pill, injection, inhaler, liquid, nasal, eye drops, lotions, etc.)
- Tapered and escalating doses
- Doses dependent on measurement (i.e., weight, blood sugar)
- Daily versus non-daily medicines
- Limited-duration versus chronic, extended-duration medicines
- “PRN” (Pro Re Nata) or “as needed” and seasonal medicines
- Multiple prescribers, multiple pharmacies, variable instructions
- Brand versus generic drugs (variable trade dress)
- Unsynchronized fill dates from pharmacy
SOURCE: Wolf, 2013.
FIGURE 5-2 Deconstruct the task: A medication self-management model.
SOURCE: Wolf, 2013.
with the ability to perform tasks around medication use. But the combination of reading and numeracy skills is far more significant than either of them alone because medication use requires such a diverse set of skills.
Wolf proposed a model that he is developing with a colleague as a way of further deconstructing the task of taking medications and understanding targets for intervention (see Figure 5-2). First, there is the decision point for which medication and how to take it. Questions concerning options, effectiveness, and risk must be answered. Next there are questions about dosage and timing that must be addressed by the provider and patient. There are further questions regarding how to handle unusual situations or a break in the routine. People have a difficult time getting answers to these questions because providers have not adequately communicated with them regarding the medications, Wolf said.
A great deal of research shows that people have trouble taking their medications, Wolf said. Half of people misunderstand common dosing instructions (Davis et al., 2006). Patients’ abilities to decipher the instruction “Take two pills by mouth twice daily” depended on their literacy levels. The instructions could be written more clearly, however, to make them easier for everyone to understand. The National Assessment of Adult Literacy found that 60 percent of patients struggle with auxiliary instructions for medication dosage. A study done at New York University found that one in four make large dosing errors with pediatric liquid medication (Yin et al., 2008). Eighty-five percent of patients may unnecessarily over-complicate drug regimens. Providers may not help people understand the
most efficient way to take their medicines or work with them to integrate the dosing instructions of different medications. Regimen complexity, along with cost, is one of the most common reasons that people stop taking medications, Wolf said.
For over-the-counter (OTC) pain medications, one in four may exceed maximum daily dosages. Wolf cited research he conducted that showed that consumers often combined products when they should not have and commonly exceeded the maximum daily dose limit. Many retail stores have large OTC pain medication sections with a wide variety of products, Wolf said. Consumers are very familiar with these products, often having used them for decades. How many people are reading the bottles for new information or new warnings? There are many differences between products, and consumers may not be paying attention to how those differences should affect dosing.
The consequences of this complexity are that half of adults demonstrate inadequate adherence to prescription regimens. Such a low level of adherence is commonly found in the cardiovascular and diabetes research. Wolf said that only adherence to HIV medications is consistently higher, but that is because adherence to HIV medication has been a main focus for researchers and providers. According to Wolf, 20 percent of new prescriptions are abandoned and never filled at the pharmacy and more than 1.5 million adverse drug reactions occur annually, with a quarter million of those occurring in children. He also noted that one-half of acute liver failure cases in the United States are caused by acetaminophen overdose. Sixty-one percent of these cases are unintentional, and exceeding the maximum dose was identified as the root cause, Wolf said.
The task of taking medication is complicated and the consequences are significant, Wolf said. This is a multifaceted problem that requires a multifaceted solution. First, medication labeling can be standardized and improved. A great deal of work is being done in this area, Wolf said, especially in California and by the U.S. Pharmacopeia. Second is to increase the prevalence and quality of patient counseling. Improving drug labeling is an important task, but it is not the only thing that will help simplify medication use. More provider–patient communication is needed, Wolf said, to help people understand these complex tasks and they need to stay connected with patients because the task is always changing. Finally, a variety of support tools needs to be engineered for different contexts. These interventions could help people perform the numeracy tasks required and check to make sure that the correct information is heard and understood by patients. This can help simplify the behavior that patients have to perform on a daily basis and prevent it from becoming obtrusive in their lives.
An example of a useful tool is the universal medication schedule, Wolf said (see Figure 5-3). A great deal of evidence establishes the universal medi-
FIGURE 5-3 Universal medication schedule.
SOURCE: Wolf, 2013.
cation schedule as a best practice, and Wolf said he believes making it standard, and incorporating it into EHRs and pharmacy labels, would lead to better patient understanding of medication instructions. Imagine how much clearer it would be if all medication labels read morning, noon, evening, or bedtime instead of “once every 12 hours” or “twice daily,” Wolf said.
Wolf is also working to develop a tool that can be used at the point of prescribing, not just for one medicine but for an entire regimen. This tool would use the universal medication schedule for the entire regimen. Eventually the tool could be put onto a patient portal so that patients can receive updated information about their regimens without waiting for a new appointment or for instructions to be mailed. Working with the new medium of the EHR brings new opportunities to meet patient needs. There is also important work being done at New York University on improving communication about medications, Wolf said. Their research has shown that using icons when dosing with syringes and cups can have a powerful effect on patient understanding. Another tool that is under development is a standardized prescription drug facts box on the medication label. The information attempts to both quantify and qualify risks. This tool, however, is still being refined because some patients have found it confusing.
Other efforts have focused on improving medication guides, building
bridges between providers and pharmacists, and increasing the prevalence of counseling, Wolf said. There is also a large body of research around a very complicated medication context, congestive heart failure, which addresses issues such as how to communicate with a patient when medication use is dependent on other factors such as weight. Wolf said there are also a number of external aids that have been less tested, but show some promise, such as blister packs or mobile phone apps that help with medication management. He concluded by saying that there is a lot of ongoing work in this field and best practices are continuing to develop.
Moderator: Paul Schyve
Benard Dreyer, roundtable member, commented on the importance of connecting the pharmacist and physician to better manage medication use for patients. He asked how it might be possible to better integrate pharmacists into the process. Wolf answered that there have been a few studies on embedding pharmacists into primary care practices, but that for most practices this would not be cost effective. Adding pharmacists as part of a medical home is another idea that is currently being explored, but it is not certain whether this could be a sustainable model. There are also several demonstration projects being undertaken with some national pharmacy chains that explore ways to leverage technology to provide direct support to patients by linking and partnering with other providers, Wolf said. There is a question, however, of whether medical practices can give a pharmacist who is not an employee access to a patient’s EHR to use that information to provide medication reviews and decision support. Wolf added that he thought that things would change when there is reimbursement for medication therapy management for those 65 and older or with complex chronic conditions.
Darren DeWalt, roundtable member, asked whether the 14 percent risk of cardiovascular disease mentioned in Zikmund-Fisher’s presentation would be considered high. He said that, as a clinician, he would consider it a high risk, but that another clinician might not. Zikmund-Fisher commented that this question got to the point of the presentation. One cannot say from the number whether a person should be taking a particular set of actions, but this brings back the original question of whether this risk calculator is of value. If the purpose of the risk calculator is to serve as a signal to action, the 14 percent estimate does not fulfill that purpose because it is not meaningful to the user. DeWalt said he agreed and believed that Zikmund-Fisher’s presentation raised the right points. He said it was important to
recognize, however, that when a clinician or a tool says that a risk is high that a value is being placed on that risk. He noted that different people have different perspectives on whether a risk value is high, and that one of the most difficult things to do as a provider is to elicit a patient’s values. Many providers will follow the guidelines, which for cardiovascular disease set 10 percent as high risk, DeWalt said. He gave as an example a risk calculator that is used at his clinic with which the patient’s risk number turns red when it reaches 10 percent. This is effective at getting the patient’s attention and prompting action. Patients whose risk is at 9 percent are not as motivated, yet there is little practical difference between 9 and 10 percent.
Zikmund-Fisher responded that he agreed that whenever underlying data are categorized, a value judgment is being imposed as to what differences and thresholds are meaningful and what ethical questions arise from this. Not providing the categorization, however, is also an ethical choice, Zikmund-Fisher noted. It is a choice to leave the recipient of the number without any context or knowledge of how to interpret that number. Zikmund-Fisher said the question of patient values is reflected in the signal being given. Framing the result as a signal to talk to one’s doctor is qualitatively different from framing it as a signal to act. Zikmund-Fisher noted that not all labels are equivalent and there are different ways to group or categorize information for certain circumstances. It is important to ask what task people are being asked to do. Are they being asked to have the self-concept of a person with high risk? Or is the task to act or not to act? Conscious choices must be made about what people are being asked to do and how information is being presented, Zikmund-Fisher said.
Cindy Brach, roundtable member, commented that in developing the Health Literacy Universal Precautions Toolkit, she and DeWalt struggled with the most effective way to communicate test and laboratory results to patients. In the end the method they chose was to tell people whether their results were high and, if they were, to consult a physician. She noted that this was an imperfect approach, but the only one that struck an appropriate balance between just giving information and actually providing people with the tools to interpret that information. The goal is to illuminate the meaning behind the number, but this can come at the expense of the conversation that the patient needs to have with the provider about personal preferences and notions of risk. Zikmund-Fisher responded that the conflict between how to simplify yet accurately reflect the complexity of risk is inherent in the problem. Providers and patients need to have a conversation about potential risks and benefits when there is no clear, simple answer. The signal that needs to be given is to have the conversation, not that there is a clear answer. Zikmund-Fisher gave as an example the question of when to stop routine cancer screenings. He said he would not want to define an absolute threshold, but there is a point at which mammograms and colonoscopies
are no longer beneficial. He said he would like to develop a way to determine when having that conversation with a patient is appropriate, rather than a guideline for when to stop screening.
Linda Harris, roundtable member, commented that if patients and providers had substantive conversations about risk, then the number would matter far less to a patient’s confidence that he or she had made the right decision. A relationship with a trusted, reliable person developed over time is going to make a bigger difference in whether people believe they have made good decisions. Zikmund-Fisher replied that he both agreed and disagreed with that statement. While there is value and importance in that relationship, he thinks that people are more trusting of a categorization or a recommendation if they know data are supporting it. A patient does not have to be given the data up front, but there are times when it is beneficial to see the numbers and have some context. Harris then asked, what kind of conversation should providers and patients be having? What is the design of that conversation? Zikmund-Fisher agreed and said that just because the information exists does not mean it is the best way to inform someone of their risk or actions that should be taken. Providers should ask themselves what needs to be communicated at that level; maybe it is the numbers and data or maybe it is a more qualitative communication.
Roundtable member Ruth Parker asked Krughoff about the lessons he has learned over the years from being involved in providing information about health plans and health choices to people in a way that helps consumers make good choices. She also asked how he and his organization solicited feedback from consumers with the goal of improving the process. Krughoff answered that one of the biggest lessons he has learned is that people care a great deal about cost comparison. He added that comparing the costs of health plans can be baffling, however, and must be made simpler to allow people to understand it. He said that when soliciting feedback from users, his organization would watch people as they used the health plan comparison tool, record what they do, and then talk to them about why they made the choices they did and what could be improved. He noted that when choosing which aspect of a health plan is most important, people will make very different choices in some areas, while other areas remain constant. The importance of coverage for specific diseases varies greatly, but the quality and availability of doctors is consistently important to people. Two options—whether the health plan helps its members choose the right treatment and whether the plan participates in coordination of care—are consistently rated as not important by consumers. Krughoff said he believes this is an area where better consumer education may help because health plans can play a big role in these areas, but consumers do not seem to be aware of that. Parker followed up by saying that the ability to understand costs was one of consumers’ most pressing needs. Krughoff agreed and said
that his organization has been involved in the development of two state health insurance exchanges and he has been shocked by how little attention has been paid to the ability of consumers to compare plans. It has been overshadowed by eligibility and enrollment concerns.
Wilma Alvarado-Little, roundtable member, asked if any accommodations were made in the Consumers’ CHECKBOOK tool for consumers who are visually impaired, have limited English skills, or have other challenges to using the tool. Krughoff replied that not enough accommodations were available for users with disabilities or challenges. He said he hopes that states or the federal government would make funds available to implement necessary accommodation and that Consumers’ CHECKBOOK would be happy to help make that happen.
Kim Parson, roundtable member, asked how long the Consumers’ CHECKBOOK tool has been in use. Krughoff answered that the tool has been in use for 34 years. For the first 22 years, it was in book form, but for the past 12 years, it has been available online. Many federal agencies subscribe to it for their employees. Parson then asked whether consumers have been satisfied with the tool and whether it has helped people to make better choices. Krughoff replied that the consumer satisfaction feedback they receive is very good; people have been very happy with the tool. Consumers’ CHECKBOOK follows up with consumers about their choices by asking what plan they had, what plan they currently have, and why they made that choice. He said the appropriate choice question is heavily weighted toward cost. Although the organization may think a consumer made the wrong choice, he said it might not be wrong for that consumer. It is important to ask people why they chose as they did and compare their choices to what they say they care about. He added that Consumers’ CHECKBOOK tries to get feedback and learn from it and that he does think the tool is helpful.
Roundtable member Linda Harris asked if Consumers’ CHECKBOOK would be providing a tool for the health insurance marketplaces. Krughoff said the organization had written a paper on what should be included in the marketplaces to help consumers choose between plans.4 The paper has had some positive response. Krughoff said that right now people are preoccupied with the mechanics of the marketplaces, and helping consumers choose has not been a priority. He said he thinks it will come eventually, but not when the marketplaces first open, unfortunately. Consumers’ CHECKBOOK is developing a provider directory for one state and has been able to access the U.S. Department of Health and Human Services’ physician
4 The paper is available at http://www.checkbook.org/exchange/Health%20plan%20comparison%20tool--best%20practices%20recommendations.pdf (accessed October 29, 2013).
comparison website for that project. He noted that a consumer organization may have access to information that others do not and the credibility to make the system better.
Margaret Loveland, roundtable member, commented that the workshop highlighted that numeracy affects everyone. She added that health care providers and professionals can partner with journalists and consumers to communicate more clearly and that education must play a larger role in helping people develop better numeracy skills. She concluded by saying that ethics must be ingrained into everything a health professional does and that providers should not use their opinions to influence patients instead of giving them the facts.
Lindsey Robinson, roundtable member, commented that oral health was not highlighted in the workshop, but that it is important with regard to health literacy and numeracy. The oral cavity is the gateway into the gastrointestinal system and the entire body. She added that the concept of translating information and communicating effectively with patients and consumers can best be expressed in terms of keeping it simple so that people can understand.
Another roundtable member, Steven Rush, said it was energizing to hear about the research being undertaken on numeracy and cognitive skills. The challenge is how to move from thinking that health literacy is based on reading skills to realizing that health literacy is also math skills and cognitive processing skills when the focus has been on grade-level reading skills for some time.
Laurie Francis, roundtable member, found the workshop to be an important reminder that health literacy is bidirectional. It is a combination of both the communicator and the patient or consumer. A person may have low health literacy, but the provider may have low communication skills. It is important to teach providers and the entire team of people who work around the patient to communicate well. She noted that it was exciting to consider taking this concept outside of the medical model and that it is intriguing to think that health information technology can play a role in helping providers and patients communicate better.
Wilma Alvarado-Little, roundtable member, asserted that there are a number of urgent tasks related to health literacy and numeracy. Education is key to increasing numeracy and cognitive processing skills. Alvarado-Little said that youth are not being taught math to use in real-world situations and that there is a disconnect between education and real-world skills. She added that numeracy must also be part of the conversation regarding health insurance exchanges, navigators, and community-based organizations that are working to help people obtain health insurance.
Cindy Brach, roundtable member, commented that it was gratifying to learn that Consumers’ CHECKBOOK is using Agency for Healthcare
Research and Quality data from the Medical Expenditure Panel Survey and the Consumer Assessment of Healthcare Providers and Systems surveys to help people make real-world decisions about their health coverage. She added that she spends a great deal of time focusing on reducing the demands of the system for health literacy and that there is not very good science on reducing the cognitive demands for quantitative information. This is not a call for more research, said Brach, but rather an endorsement of a universal precautions approach to health literacy. This is particularly important when considering that evidence shows that people will often say they understand the information, but when asked to demonstrate that understanding, they cannot. It is important to use methods like teach-back all the time because the question of how to communicate quantitative information effectively has not been answered. In addition, Brach said, it is disheartening to hear about the poor state of math skills and math teaching in the schools. She worries that it will lead to a further retreat from subjects such as art, music, and physical education. This should be a call for education to include those math skills in the teaching of other subjects rather than to forego those subjects in favor of further math drills.
Terri Parnell, roundtable member, said the workshop reminded her of the burden that numeracy interpretation places on health and treatment decision making, especially for areas such as end-of-life and palliative care as well as outcomes and costs. The discussion was energizing, she said, and led her to start thinking of ways to use numeracy to engage and empower patients and consumers.
Susan Pisano, roundtable member, expressed a need for a summary of the principles for good approaches to numeracy and icons and for the overall issues of numeracy. She noted that she found Apter’s tool for helping providers communicate better with their patients to be particularly helpful.
Ruth Parker, roundtable member, commented that just as much of literacy is beyond words, numeracy with regard to cost is beyond numbers. Transparency in costs and helping people understand costs will require a culture shift in health care and new language and approaches. She noted that people are not given the price of an airline ticket when they arrive at their destination, but that is what happens in health care. Changing this approach will be an enormous change for both providers and consumers, but it is key to helping people understand and make decisions about their health care. Parker said she also believes it is time for health literacy professionals to build meaningful relationships with those who communicate in journalism and social media.
Another roundtable member, Gemirald Daus, said it is important to consider numeracy and literacy separately. Separating the two sets of skills will help to conceptualize the challenges that people will face with the ACA and the health insurance exchanges, in particular with the infrastructure
that will be required to help people choose a health insurance plan. A significant proportion of new health care consumers may be from traditionally disadvantaged groups such as racial and ethnic minorities and those at low socioeconomic levels. The guidance and resources that are put toward enrolling people in health insurance plans must confront the challenges of low numeracy skills directly.
George Isham, roundtable member, commented that he was interested in the earlier conversation about the meaning of numbers in risk communication. The magnitude of the problem of communicating health information is enormous when one takes into consideration low health numeracy and the number of tasks that require numeracy skills, from preventive and medical care decision making to daily tasks of medication management. The evidence presented at the workshop shows that a large proportion of the millions of people engaged in those tasks will have trouble performing them due to a limited understanding of the numbers involved. In the short term, this problem will not be solved by better education, Isham added, but by focusing on decision architectures for common decisions and reducing demands on the patient. Education is very important in the long term but, given the magnitude of the problem, is not a solution for the next few decades. Physicians will need help with the process engineering that will help patients make more informed decisions. There are many compelling examples of decision making in contemporary American medicine, Isham said, that are wrong from the standpoint of use and misuse in which professionals have been silently complicit. This raises the ethical issue because there is a question as to the proper role for the medical professional in patient decision making.
Linda Harris, roundtable member, observed there seems to be a paradox at work with regard to numbers, precision, and decision making. That is, the more precise the number given, the less informative it tends to be for the patient. Reducing complexity is not enough; health communication must be focused on the interaction because that allows for embracing the complexity and finding ways to communicate it. Harris also asked about the ethics of giving a patient a number and not giving them the opportunity to have a meaningful conversation with a provider about it.
Jill Griffiths, roundtable member, commented that as vice president for communications at Aetna, she speaks to reporters every day who are looking for information on the ACA. There is a need and an opportunity within the fields of both journalism and health literacy to build a stronger partnership, and that is an area where the roundtable can be helpful. She added that two of the graphics in the speaker presentations were two different triangles representing the relationships between doctors, patients, and information and doctors, patients, and pharmacists. She asked if it was possible that these relationships could be merged together to create a differ-
ent paradigm. This possibility creates significant opportunities to improve patient and consumer understanding.
Lori Hall, roundtable member, noted that context has been a recurrent theme from speakers at roundtable workshops. Bridget McCandless, a speaker at the Organizational Change to Improve Health Literacy workshop on April 11, 2013, spoke eloquently on the need to frame conversations about health and risk in ways that are relevant to patients. McCandless said that her patients were primarily low-income individuals living paycheck to paycheck and that she had found it was more useful to talk to them about the short-term consequences of poor health than the long-term consequences. Hall said that low numeracy skills in the population bring about a similar circumstance and highlight the importance of communicating risk in a language that is meaningful to the audience. Hall added that from a pharmaceutical industry perspective, it is important to note that numeracy skills are often measured in healthy individuals. When a person is sick or under stress, however, even those with the highest skill levels can struggle to understand the information they are being given. This is parallel to a phenomenon seen in clinical trials, Hall said. A patient’s experience with a medication regime in a clinical trial is very controlled. Once the medication is on the market, the evidence from the real world may not match the evidence from the clinical trial because people are taking the medication under different circumstances, when they are under stress and do not have the same support as in the clinical trial. This highlights a challenge faced by the pharmaceutical industry with regard to representing risk and providing information to consumers. The language that pharmaceutical companies use to communicate risk is limited by the regulatory environment. It is very difficult to provide plain-language information to consumers. Hall said she believes this could be a topic for a future workshop.
Kim Parson, roundtable member, said numeracy adds another level of complexity to health and health care. She challenged the roundtable as a group to look for opportunities to partner with consumers and work to simplify this complex system.
Patrick McGarry, roundtable member, commented that numeracy is one of the greatest health literacy challenges. This workshop underscored the importance of numeracy and patient education, particularly the concept that the way information is conveyed must take into account the patient’s specific and immediate needs. He added that he agreed there are important ethical considerations in the debate between when it is appropriate to present data to inform or to persuade.
Roundtable member Rima Rudd agreed that numeracy is a central issue of health literacy. Numeracy is important not just to understanding, but is also central to decision making. Rudd noted that many of the presentations were a reminder of the importance of scholarship and rigor in health lit-
eracy work. The most successful interventions were those that were piloted and rigorously examined. It is also important to form partnerships with other disciplines; health literacy professionals can do much more when they partner with communication or numeracy experts. That there are many adults with poor literacy and numeracy skills is not new information, Rudd said. She remarked that it is no longer an ethical dilemma on how to communicate effectively with patients and consumers, but an ethical imperative to learn how to do so. It is unethical to continue to make such huge demands on people when it is known that they are not able to meet them.
Darren DeWalt, roundtable member, noted that numbers are ubiquitous and that everyone faces challenges in understanding them at certain times. The solution to the problems of low numeracy skills is the same as many other health literacy problems: reduce complexity. There are some tools for accomplishing that that are specific to numbers, but the general concept is the same. It must be allowed, however, that there is complexity that must be faced and addressed in a conversation with a provider. Finally, DeWalt said, it is important to remember the task when designing a tool. Often things are designed in a way that does not take into account the task that the person using it must accomplish.
Robert Logan of the National Library of Medicine (NLM) commented that the question is how to help people make sense of the huge amount of information available to them. He noted that the NLM has created a database with summaries of clinical trials in a standardized format. Making this information available to the public was the result of a massive effort that took years to complete. It is important, however, to realize the work is not done. The fact that the information is available does not make it understandable and useful. People, including patients and providers, need to be taught how to use these kinds of resources that are becoming more and more available to them.
Benard Dreyer, roundtable member, agreed that numeracy is a critical issue in health literacy. Numeracy skills are very low in the general population. Even if a person is measured as proficient, he or she will probably still struggle with numeracy in times of illness or stress. In addition, health care professionals are not always proficient in numeracy and must be better trained and educated in numbers and communicating numbers. Dreyer added that in his opinion, there is a need to make information meaningful by categorizing and evaluating it for the patient or consumer. The complexity of the data can be addressed for people who would like that, but it should not be required for making decisions.
Transparency adds to trust and secrecy adds to mistrust, asserted roundtable member Paul Schyve. People trust their physicians when they believe there is transparency in their communication. Sometimes simply having the information available where an individual can access it if he or
she desires creates this trust. Many things in society are becoming more complex, and numeracy plays a part in that, whether an individual is working in a factory or a restaurant. However, addressing this complexity is particularly urgent for the health care system because it affects lives and health. Schyve concluded by saying there is a lot to learn about improving communication and numeracy from fields outside of health care, and as professionals within the health care system learn and adjust, they can help to address the larger societal issues.
Schyve concluded the day by thanking the presenters and roundtable members for a fascinating and informative workshop.
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