Institute for Healthcare Advancement

Sixth Annual Health Literacy Conference

May 3-4, 2007

"Health Literacy and Chronic Illness Management"

  Conference Summary

Thursday, May 3, 2007

Health Literacy and Chronic Disease Care: From Research to Practice

Dean Schillinger, M.D.

UCSF School of Medicine/San Francisco General Hospital

Director, Center for Vulnerable Populations

     Dean Schillinger, M.D. provided a review of the literacy and health research he’s been involved in the last seven years. He also spent time on intervention studies he’s been doing in public, primary care settings. Most of these have involved patients with diabetes and heart disease.

"Anyone with a chronic condition knows that there are high self-management demands," said Dr. Schillinger. "There is more to do with little time available to do it. Unfortunately, the lower your level of education, the more likely you are to have chronic disease. This is shown to be true in developing countries and in more developed countries."

Dr. Schillinger reviewed a number of statistics. Research with the elderly population (Sudore et al 2006) shows that limited literacy is associated with:

·        Worse self-rated access to care

·        Lower self-rated health

·        Higher rates of some chronic diseases

·        Higher adjusted mortality

·        Poor glycemic control and complications. Diabetes patients with limited literacy experience poorer quality communication and a two-fold increase in retinopathy.

"We are only beginning to learn how limited literacy affects health," he said.

Data from other studies involving how limited literacy affects verbal clinical interactions showed that it impedes understanding of technical information, explanations of self-care, and it also impairs shared decision-making. "The speed of dialogue, the extent of the jargon used and the lack of interactivity impairs medication communication.

"The strongest predictor of not knowing the basics of taking medication is literacy," said Dr. Schillinger.

Another study from 2006, by Rebecca Sudore, M.D., looked at the number of passes required through the consent process to obtain informed consent, by participation characteristics. It looked at the interaction between limited English proficiency and limited literacy. The informed consent was written at a 6^th grade reading level and in their native language. Patients were then asked four questions about why they were enrolling in the study. Patients with adequate literacy got all four questions right 36% of the time. Patients with marginal literacy, inadequate literacy, or who were born outside the U.S. only had a one in ten chance of getting it right. However, going back over the form with the patient one more time resulted in 45% - 62% of patients getting it right.

Interactive communication insures the information is understood; closing the loop. In a 2003 study by Schillinger, patients could recall or comprehend the information only 12% of the time when conveying a new concept. When new concepts included patient assessment, the patient provided incorrect responses 50% of the time. Surprisingly, visits using the interactive communication loop were not longer (20.3 min. vs. 22.1 min).

Schillinger (2006) identified 12 characteristics of the health system that contribute to poor communication for patients with limited literacy:

1. "High bar" communication objectives (we expect mastery of self care skills). We need a health care system that identifies those who cannot master self care skills and fill in the gaps.

2. Lack of interactivity with healthcare provider.

3. Lack of time

4. Reliance on patient to be proactive

5. Unprepared, untrained workforce

6. Reliance on physicians, rather than allied health professionals, teams

7. Reliance on single mode of communication (written vs. verbal)

8. Provider-population mismatch/deficiency across language, culture

9. Highly bureaucratic system

10. High concentration of patients in under-resourced safety net

11. Undeveloped technology platforms to support communication (pre-visit, visit, post-visit, inter-visit)

12. Competing demands of multiple chronic conditions

Based on the problems identified, Dr. Schillinger gave suggestions as to how we can do better in communicating with patients. How we engage lower literacy patients at the onset is critical, as is improving written communication. We need to prioritize key points and drop the rest. He also suggested we use teach-back opportunities and interactivity. "We need to build on 'need to do,’ not just 'need to know.’"

A randomized trial of forms for advanced directive (AD) used the standard written AD and an AD using visuals. The results showed that an AD using visuals was more acceptable and improves patient self-efficacy. However, noted Dr. Schillinger, "The bad news is these cannot be used in isolation. While the overall improvement in comprehension was greater, this improvement was not true across all literacy levels. People with limited literacy only improved 1.8 points with AD-easy, compared with 1.4 for the AD standard, so it was not significant."

Dr. Schillinger wrapped up his presentation by talking about the Automated Telephone Diabetes Self-Management (ATSM) program. The study involved comparing two models of self support. One is a technologically oriented model with automated telephone self-management support. With a nurse care manager, patients get weekly phone calls and the primary care physician oversees it. The service provides weekly surveillance and health education. Weekly reports to the nurse resulted in behavioral action plans.

The ATSM model was compared to another system of self management support called Group Medical Visits (GMV) where 6-10 patients attended monthly group meetings. The facilitation was by a bilingual health educator and a primary care provider. Patients were encouraged to become active in self-care through participatory learning and peer education.

The reach of these two programs was compared. "The higher the number, the higher the reach. The reach score for the phone group was higher, so we were able to reach more people this way and engage them in action planning," said Dr. Schillinger. "Interestingly, the reach within the phone group was higher for those who had communication barriers."

The study also looked at patient assessment of chronic illness care. Automated phone and group medical visits improved care; there was no difference. However, communication scores went significantly higher with the automated phone model, and self management behaviors, in particular, improved. Self efficacy also improved. Unfortunately, improved behavior did not translate into improved blood pressures or improved blood sugar levels. Dr. Schillinger believes that this happened "because we were not doing anything with people’s medications, we were getting them to change some dietary behavior."

In conclusion, Dr. Schillinger stated, "The mechanisms by which good literacy affects health care are still not very clear. There are likely multiple reasons. It’s apparent that improving literacy levels can achieve important health objectives."

Future directions include the need to expand our capacity to reach lower literacy populations with innovative communication technologies and interventions. Dr. Schillinger also recommended mass media approaches and extending beyond demonstration projects.

Communication Skills in Chronic Disease Management

Michael K. Paasche-Orlow, M.D.

Boston University

    A general internist and clinical investigator, Michael K. Paasche-Orlow, M.D., has quite a bit of experience with limited health literacy in chronic disease management. Dr. Paasche-Orlow is currently involved with several health literacy intervention projects.

He started off his session with an attention-getting slide:

"Mnay fo yuor pinetats hvae tbuorle
wtih the slef-crae tksas tehy need
ni oderr to saty hlaehty.

Waht are you gnoig ot od aubot ti?"

If you can’t read that, it says "Many of your patients have trouble with the self-care tasks they need in order to stay healthy. What are you going to do about it?" This unique approach shows how communication is a big factor in how well a patient is going to do if they don’t understand the message.

Dr. Paasche-Orlow stressed the need to communicate using plain language. Stay away from jargon and mirror the patient’s dialogue. "Naming conventions are difficult. What patients call things are different with each patient. Mirror your language with theirs. Don’t demand that they understand your own vocabulary," he said. "For example, if you ask a patient, 'tell me about your diet,’ the patient may say, 'I’m not on a diet.’"

Don’t give too much information or assume that your explanation is simple. You want to identify the critical information and ask yourself from the patient’s perspective, "What do I need to do?" Dr. Paasche-Orlow also stated that what is easy for you - is easy for you. "Providers don’t provide explanations or they just repeat what they gave the first time. Find ways to explain things in a different way," he said. "If I tell you your LDL is 103, what does that mean? But what if I say I need your cholesterol to be under 103? Patients understand on an affective level, this provides an interpretative framework. How is this going to apply for what they need to do?"

"You need to be very specific with your instructions," said Dr. Paasche-Orlow. "Take pills twice a day is open to interpretation by the patient because it is not specific enough. I had a patient tell me, 'If you wanted me to take the medication forever, why did you only give me 30 pills?’ The patient didn’t have a concept of refills. It took me awhile to realize that that is not a universal concept. Find where your learner is at and take their perspective."

Use multiple channels; do not assume that just verbal or printed materials will be sufficient to get the message across. "I like to draw with patients in the office. I started drawing for chest pain. I draw a diagram for the patient in my office: this is where you swallow and there is this special muscle is to keep food in and acid not to come up. If the muscle gets weak, you get pain. These are things that cause the muscle to get weak: caffeine, alcohol, and smoking. By doing this I learn all kinds of stuff," he said.

Another example of using multiple channels of communications is how Dr. Paasche-Orlow teaches patients to use an asthma inhaler. "I don’t just give them a handout; I physically demonstrate or I ask them to demonstrate how they use it. Low literacy patients did worse at baseline. Through teaching to mastery it didn’t take long for them to learn. You have to use the teach-back method. Some things people just didn’t get even though you said, 'That’s two puffs, then shake, shake.’ They still did it wrong."

Dr. Paasche-Orlow stressed to not create a shameful environment when posing questions to the patient. Do not ask, "Do you understand?" Instead create open ended questions to establish a learning environment.

Lastly, confirm comprehension with the patient by having them tell you or show you how they have interpreted what you have explained to them. "You want to assess patient understanding. Close the loop. Ask the patient questions like, 'Tell me what you are going to do with this medicine. When you go home, what are you going to tell your family about what you need to do?"

Using Pictures in Health Education

Len and Ceci Doak

Patient Learning Associates, Inc.

                        Leonard and Cecilia Doak are a husband and wife team who work together testing the literary skills of patients, writing books, and consulting with hospitals, medical schools and pharmaceutical companies on health literacy. They are authors of the seminal health literacy textbook, Teaching Patients With Low Literacy Skills, a copy of which was given to all conference attendees, courtesy of IHA.

Len Doak started off the session by stating, "People with limited literacy skills are not lacking in intelligence. If we teach them in ways that are acceptable to them, they can learn anything we want to teach them." He went on to explain that you need to use pictures to create attention, recall, comprehension, and compliance. 

People have many perceived obstacles to using pictures. They say that they have no artistic training or skills, don’t know how to "think visually," don’t know how to pay for a picture, or don’t think their brochure can compete with those from big-name companies. Many of these fears are unfounded. Ceci Doak tells us that some great sources for pictures can be staff illustrators or someone at a local college art department. Illustrators can be found through the yellow pages, by doing an online Google search, or looking through a government health publication.

Len Doak also explained that based on their research, certain words will need pictures to help the reader understand. Words such as concept words and phrases, category words, and value judgment words will need pictures to support the message you are trying to convey since each person may interpret these words/phrases in a different way.

Visuals are powerful. Many readers will look first at the visual, then at the caption, and will read the text last. "Visuals have more power than words because the brain has more sites to record pictures. Color often enters into the memory. I remember the location of the book, the color of the book, but the name of book escapes me," says Ceci Doak.

A study by Peter Houts examined recall of instructions with and without pictures. The study showed that the average recall without pictures was 15% and recall with pictures and words was 85%. Another study done by Delp and Jones looked at the benefits of visuals for trauma care at home. Ninety-eight percent of the patients given instructions with pictures and notes read the instructions, while only 79% of the patients read the instructions if they were text only. With text and visuals, 46% of the patients could recall six things they were supposed to do, versus only 6% of the patients who received text only instructions. Adherence almost doubled, from 45% with text only, to 82% with text and visuals.

Other studies that the Doaks looked at showed varying amounts of improvement using pictures, but almost every one of them showed at least a 35% improvement in recall comprehension.

Skilled readers look at pictures differently. The first impression is the cover. Good readers scan the picture, whereas a poor reader wanders around the page and gets caught on a detail. Ceci Doak gave the example of students asked to recall a picture, and their eye was caught on the A frame house in the picture background because they’d never seen one before.

Cue desired behaviors with comparisons, such as with food portions; for example, a picture of too much versus a picture of a better choice for portion size.

Build interaction into your pictures (such as food portion pictures where they check a box for the better choice). Says Ceci Doak, "Keep the picture in direct relationship with the text. People look for consistency." She also mentions that, "Multicolor is a distraction with low literacy. Be cautious in changing font colors and sizes. Be predictable in font sizes, otherwise it becomes a distraction."

Also be aware of problem visuals. "Some visuals are not appropriate to the message. The words say one thing and the feel-good picture says something else," explains Len Doak. An example of this is the caption: Some microbes can travel through air, with a picture of a person talking on phone. "It looks like they can travel through the phone, says Len Doak." In another example, the drawing showed a bottle of pills with a glass next to it. "Some patients thought this meant to take whisky with their medicine" said Len Doak.

Len Doak went on to say, "Showing the positive is a better way to explain even if the negative is more familiar to them." Make sure to test the suitability of your pictures as well. "Field testing pays off. Test for objectives and key messages. Match logic, language, and experience. You can get useful results from small sample sizes," he said.

Research shows the potential benefits of using pictures. Ceci Doak suggests that healthcare workers include visuals in their patient instructions.

Quick and Low-Cost Ways to Test Your Written Material with Readers

Jeanne McGee, Ph.D.

McGee & Evers Consulting

     Jeanne McGee, Ph.D., a health care communications and research consultant, has earned a national reputation for her contributions in health literacy. She recently created the Toolkit for Making Written Material Clear and Effective, for the Centers for Medicare and Medicaid Services. This Web-based, 11-part toolkit, expected to be released later this year, is easily understood and easy to use.

For this presentation, Dr. McGee talked about Part 6 of her Toolkit - How to Make Written Material Clear and Effective. McGee explained that to be clear and effective, materials must attract the reader’s attention, hold their attention, make the readers feel respected and understood, help them understand how it applies to them personally, and it must move them to action. "Don’t assume what motivates us will motivate the reader. Feedback from readers is the gold standard of evidence on whether your written material is clear and effective," says McGee.

McGee recommends four methods to get feedback directly from readers:

·        Ask questions

·        Ask the reader to "think out loud"

·        Give the reader a task

·        Observe the reader’s behavior.

"When you ask questions, you are discovering if the purpose and content of the material is clear to the reader," emphasized Dr. McGee. The second method asks the reader to think out loud so that the interviewer can hear the reader’s reactions and thoughts. In the third method, the reader is given a task such as filling out a new form to see how easy it has been designed. The last method, observing the reader’s behavior, is to watch the reader and ask follow up questions to any noticed non-verbal clues.

"Focus groups can work very well to develop materials, preliminary design concepts, etc., but it is not a good technique to review design-ability. The focus group is used primarily for asking questions," explained Dr. McGee. "Individual interviews are a quick and low cost way to improve materials.

 "The more interviews you can do at the early stage, the better. You can find the problems with the material and make the changes. Then you test again after making changes. Two or three times through the material are usually enough. The problems will show up in the first five interviews." One thing to note is that there are more advantages than disadvantages to having a two person team conduct interviews. One person can take notes while the other is doing the interviewing and the team can talk about the interviews later to make sure nothing was missed. Dr. McGee also advises, "Dress appropriately for the people you will be interviewing. Dress similar to reduce barriers to make people feel at ease with you."

Part 6 of Dr. McGee’s toolkit also gives a template for creating a script for on-site recruitment for interviews. Start by getting the person’s attention, give a brief background on the project and its purpose, and ask screening questions to see if the person meets the requirements you’ve set. Be specific about what’s involved and give assurances if needed. Ask whether the person might be willing to participate and answer questions. Either begin the interview or schedule one for a later time.

Dr. McGee’s basic guidelines for creating interview questions include:

·        Make questions sound like natural speech

·        Phrase questions in a neutral way

·        Ask open ended questions

·        Keep questions friendly and non-intimidating.

"Pay attention to the body language of the participant to make sure you aren’t repeating questions or causing them to feel uncomfortable," said Dr. McGee. "Tactful, careful phrasing helps put readers at ease and helps keep feedback sessions from feeling like testing situations."

A Cognitive-Learning Perspective for Designing Health Literacy Interventions

Michael S. Wolf, MA, MPH, PhD

Northwestern University

Dr. Michael Wolf is an Assistant Professor of Medicine, Institute for Healthcare Studies, and Director of the Health Literacy and Learning Program (HeLP) within the Feinberg School of Medicine, Northwestern University. Dr. Wolf is also a social/behavioral scientist with expertise in many areas of health literacy. He is a member of many health panels and at this time is funded by the Centers for Disease Control and Prevention for a cutting edge study on health literacy.

"Health literacy skills reflect general literacy skills," said Dr. Wolf. "Health is one of the most complex systems that we have to navigate. People’s health literacy skills are comparable to their general literacy skills."

Dr. Wolf noted that reading is both a fundamental skill and a cognitive function. Dr. Wolf discussed three types of literacy, which are used in the NAAL (National Assessment of Adult Literacy): prose--read and understand sentences organized into paragraphs; document--locate and use information contained in tables, charts, or graphs; and quantitative--apply arithmetic operations, either alone or sequentially.  "Inadequate literacy leads to greater mortality with Medicare enrollees," says Wolf.

"Health literacy may be still too broad a term," said Dr. Wolf. "Here is a breakdown of the cognitive model of comprehension: Verbal fluency, which is basic reading skills; Semantic memory, which is prior knowledge; Working memory, which is the ability to multitask; Abstract reasoning, is problem solving which allows patients to apply new information.

"We need to make health information more organized and easy to understand and support learning," says Wolf. "The overall objective is to get the patient to comprehend, retrain and problem-solve."

The reason why health literacy is failing today, according to Dr. Wolf, is because of the reading difficulties of health materials, language, cognitive load (too many concepts at once), competing tasks, inference, time, modality, and patient perspective.

Dr. Wolf believes that medication labels are long overdue for an overhaul. "'For external use only’ - that dates back to 1890. Readers don’t know what 'external’ means. Instead it should say, 'Use only on the skin.’ 'Take two tablets by mouth twice daily’ should really read as 'Take two pills in the morning and two pills at night.’ Labels are confusing and distracting."

He noted that multimedia is becoming more popular. "You can learn better with both visual and verbal. Multimedia can be a spoken word with writing on a chalkboard. We should be designing information to literacy levels and I’m not sure if one size fits all," said Dr. Wolf.

Screening Patients for Low Health Literacy

Lorraine S. Wallace, Ph.D.

University of Tennessee Graduate School of Medicine

Lorraine Wallace, Ph.D, is an associate professor of family medicine at the University of Tennessee, Graduate School of Medicine - Knoxville. She is a well-known author in the medical and especially the health literacy communities. She has authored more than 30 articles published in the Journal of General Internal Medicine, Cancer Control, Family Medicine and others.

Dr. Wallace noted that a large gap exists between the patients’ education and their literacy skills. "The number of years of formal schooling you have only tells us what you have been exposed to, NOT what skills you have acquired," said Dr. Wallace. The average reading level in the United States is a 6^th to 8^th grade level.

Dr. Wallace believes you need to start with patient behavior in understanding their health literacy. Some of the behaviors to watch for include:

·        Seeking help only when illness is advanced

·        Making excuses for not reading materials in front of the provider ("I forgot my glasses")

·        Being quiet or passive

·        Frequently skipping appointments

·        Being non-compliant with their medications

·        Being unable to name their medications or explain their medication's purpose

·        Having difficulty explaining their medical concerns

·        Having no questions at all.

Asking about a patient’s education, reading and learning styles is also important. Asking a question such as, "How do you learn new things?" will help determine what the best approach is with that particular patient. Dr. Wallace recommends reviewing the patient’s medications. Have them bring in their medications and ask them to name and explain the purpose of each medication. This will give you an opening to help the patient learn exactly how and why each medication needs to be taken.