A Recap of Plenary and Breakout Sessions
"Health Literacy = Effective Communication: Translating Ideas Into Practice"

 Thursday, May 5, 2011

A Decade of Dedication: Looking Back/Looking Ahead in Health Literacy
Dean Schillinger, MD

The conference keynote speaker, Dean Schillinger, MD, discussed progress made within the field of health literacy over the last 10 years, as a counterpoint to the IHA's 10 years of this conference.  

He kicked things off by discussing the Inverse Care Law. This law states: "Access to and quality of healthcare is inversely proportional to the needs of the population." In essence, those who need the most healthcare get the least amount. From this, Dr. Schillinger proposed, "We need to shift from healthcare literacy to public health literacy."

To elaborate on this, Dr. Schillinger showed data about the rates of uncontrolled diabetes in various parts of the city of San Francisco from 1999 to 2001. In more affluent areas, such as the Marina neighborhood at the northern tip of the city, diabetes rates were very low. By comparison, rates were more than 10 times higher in the Bayview/Hunter's Point neighborhood in the southeast part of the city. The fact that the Bayview/Hunter's Point neighborhood had more social vulnerabilities, including poor health literacy, meant that the level of diabetes control was much lower than in the Marina neighborhood. Dr. Schillinger noted that this was a perfect example of the Inverse Care Law. The neighborhood with the highest diabetes rates were more likely to also have lower literacy rates.

He then went on to discuss some of his findings in looking at the diabetes population. In a study he did in 2004, he looked at 408 patients to assess the correlation between health literacy level and quality of patient/doctor communication. He found that a higher percentage of low health literacy patients--compared to those with adequate health literacy--reported doctors using words they did not understand (32% versus 13%). Patients with low health literacy were more likely to not have their doctors explain test results (26% versus 13%). Twenty-one percent of the low health literacy patients reported being confused about medical care, while only 14% of the adequate health literacy patients reported this. Finally, 33% of the low literacy patients said that their doctors never or rarely understood about medication problems, while only 20% of those with adequate health literacy said this was the case.

Having discussed the problems that low health literacy can create, Schillinger then moved on to discuss some of the solutions. Some strategic examples he gave included:

·         Redesigning written materials

·         Using pictographs and simplifying/standardizing instructions

·         Using teach-back and teach-to-goal methods

·         Using narratives and reducing jargon

·         Using video to tell a story

Dr. Schillinger cited the IHA book "What To Do When Your Child Gets Sick" as a great example of redesigning written materials. One study showed that using the books as part of a patient education program reduced pediatric ER visits by half.

A good example of using pictographs or simplified instructions is for medication directions. Dr. Schillinger showed an example of using a hand shaking a bottle in place of the text "Shake well before using."

As an example of teach-back, Schillinger then discussed a phone follow-up program for patients with diabetes. At first, patients received five to eight calls for the first month. This was then reduced to every two to four weeks, depending on how well the patient demonstrated adherence to a set of goals. "We could increase levels of engagement as needed," Dr. Schillinger explained.

All of this research led Dr. Schillinger back to his initial point about needing to shift focus to public health literacy. He noted that if people - particularly young people - feel empowered to change their lives and change their environment, you will see a change in chronic diseases such as diabetes. To demonstrate this, Dr. Schillinger ended his presentation with two compelling videos done by young people. In the first video, a young man performed a rap song about choosing between buying healthy food from a regular grocery store versus buying fast food from a convenience market. The second video featured an African-American teen who performed slam poetry about the unhealthy food choices in her family and how they have led to a legacy of diabetes.

Looking back at the past 10 years, Dr. Schillinger summed up, "It may feel like we are moving as slow as turtles, but we have really made great strides."

Perspectives from a Low Literacy Patient
Toni Cordell

Changing gears from Dr. Schillinger's focus on health literacy research, Toni Cordell stepped up to tell a very different and very personal story. Cordell shared her experiences as a patient with low literacy, and the tremendous difficulty and hardship it caused her over the years.

Her learning difficulties started early in life. Her mother told her she was stupid. "It put me on a first name basis with failure." School did not get any easier for her. She explained that "It was like mountain climbing to deal with the debris of my education."

After graduating high school, although she could not read past a 5^th-grade level, she found herself in an abusive marriage with two small children. As she described it, "I read well enough to read Dr. Seuss to my children, but not to read a book on how to nurture them. I read well enough to get by, but not to get ahead."

Perhaps the most powerful part of her story, however, is what happened when she went to see her gynecologist. He reassured her that the problem was easy to fix with surgery. She was given stacks of paper to sign. "I was very compliant and signed everything. But I didn't read it," she added.

Six weeks later, she went back to the doctor for a follow-up visit. The nurse asked her, "How have you been doing since your hysterectomy?" Cordell said that while she tried not to show it, "On the inside, my jaw dropped. How could I have let this happen? How could I have let them take a piece of me without my knowing it?"

Because of her experiences, Cordell became a champion for health literacy, serving as an example of a patient who does not look as though they are not literate. She reminded the audience that wealthy financier Charles Schwab struggled with dyslexia issues. "Low literacy does not mean low intelligence," she explained. "What's clear to you is clear to you."

To elaborate on this point, she told an amusing story about when her second husband was working as a news cameraman. He and his partner were getting out of their van at a big political rally and preparing to get footage of the politician up on the stage. Referring to the camera and microphone, he told his partner, "Get the shotgun, get on top of the van and shoot him from here." Of course, what he had meant was for his partner to get a shotgun microphone and record what the politician was saying. Unfortunately, the security personnel for the event interpreted the words completely differently and the two men were arrested.

Because of her experiences, she has learned to ask questions of healthcare providers. "When I am given forms to sign, I ask what everything means. I even write on them, 'What does this mean? I don't understand this.'" Cordell referred to a famous quote from First Lady Eleanor Roosevelt about communication needing to be a two-way street. Cordell emphasized that any communication must be crystal clear.

In closing, Cordell reminded the audience, "Your education may be greater than mine, but my humanity is equal to yours."

Teaching Health Literacy to Healthcare Professionals
Cliff Coleman, MD

One of the largest groups of people who don't understand the need for health literacy may well be the group that needs to understand it the most; medical doctors. The need for clear communication may seem to be self-evident. However, according to Dr. Cliff Coleman, the exact opposite holds true. He explained, "Most of the health literacy effort has gone into the patient side of things. We've made very little effort to turn the lens back onto ourselves and ask why this is important."

As part of his efforts to make doctors, particularly medical students, aware of the need for health literacy, Dr. Coleman directs the health literacy curriculum for the Oregon Health Sciences University School of Medicine in Portland. He admitted that it can be an uphill battle at times because doctors get very little health literacy training in medical school. He added, "Medical school makes doctors even worse communicators than they were before."

Among the barriers to providing quality health literacy education to medical students:

·         Health professions students not necessarily selected for communication skills

·         Medical students learn about 16,000 new words

·         Hidden nature of low health literacy

·         Crowded curricula

·         Barriers to continuing education

·         Fast-paced health care encounters

"Clear communication is not valued in our current health care system," Dr. Coleman stated. "Doctors are not penalized for bad communication, and they certainly are not rewarded for clear communication."

In terms of skills, Coleman cited a 2003 study in the Archives of Internal Medicine by conference keynote speaker Dean Schillinger. The study looked at how often 38 primary care doctors used the teach-back method with 74 low literacy patients who had diabetes. The results showed that only 20% of the doctors used teach-back with their patients. Furthermore, those patients who received teach-back education had better glycemic control than those patients who did not receive teach-back. The full text of Dr. Schillinger's study can be found at http://archinte.ama-assn.org/cgi/content/full/163/1/83.

Clearly, doctors are not properly prepared to understand the issue of low health literacy. This raises the question of just how much training is being done and how it is being done. Dr. Coleman conducted a survey of 133 medical school deans in 2010. He found that, of the 63 who responded to the survey, almost three-fourths (72%) reported including some health literacy instruction in their curriculum.

Dr. Coleman noted that while this number may seem impressive, "it only added up to three hours' worth of instruction. Furthermore, most of it was done during the first and second years, rather than through the course of students' time in medical school." As one might expect, most of the instruction on health literacy in schools that had such a program was done in a lecture format (84%). By comparison, only 25% of schools used experiences with adult low literacy patients as a means of teaching.

In terms of easy tools that both physicians and medical students can learn to incorporate, Dr. Coleman suggested using plain language, slowing down when speaking to patients, and using the teach-back method to ensure they understand instructions.

Ultimately, Dr. Coleman said he believes that it is the duty of physicians to be more aware of health literacy issues to better communicate with their patients: "If patients aren't coming away with the information they need, it's not their fault. It's our fault for not properly communicating."

The Rise of the E-Patient: Understanding Social Networks and Online Health Information-Seeking
Lee Rainie

One key component to reaching people with understandable and meaningful healthcare messages is to know where they are going to receive those messages. Much of where Lee Rainie's research as Director of the Pew Internet & American Life Project examines how people's Internet use affects their families, communities, health care, education, and work places.

Rainie started by sharing the story of a couple in Oregon who worked as self-employed software engineers. One day, the wife slipped and fell, hitting her head on the sidewalk. She required immediate neurosurgery. Although she recovered, they were having difficulty paying her medical bills. In response to one blog post by a friend telling their story, it spread throughout the Internet and help came pouring in.

Rainie used this story to illustrate how our networks today are very different from the past. He referred to this new trend as Networked Individualism. He listed several characteristics of this new network:

·         Social networks are more important than the tight-knit groups of the past

·         Social networks are more segmented and layered than in the past

·         Social networks are more vivid and tied to creation of information/media

He went on to say that this environment has given rise to a whole new type of content creator. These people represent what Rainie called the "Fifth Estate of content creators." In much of their content, these people tell their stories and share their voices. The content they provide also tends to be more partisan and personal than the objective information of the past. Rainie went on to point out that there were three distinct technological revolutions that allowed for this to happen.

Internet and Broadband Revolution

Over the course of 10 years, from 2000 to 2010, Internet use among American adults rose from 46% to 72%. Interestingly, one of the sharpest increases was among adults ages 50 to 65, who showed a 30% increase in Internet usage. Rainie added, "Two thirds of adults and 80% of teens are now content creators. This is the big change that the Internet has introduced to the media landscape." In terms of broadband, 70% of Americans now use this instead of slower dial-up access. This has created an increase in volume, variety and relevance of content.

Rainie then talked specifically about how this Internet and broadband revolution has changed the way patients (or potential patients) seek out health information. For example, 61% of all adults get their health information online. Nineteen percent consult healthcare provider reviews and rankings, and another 18% provide those rankings and reviews. Rainie added that all of this means that today's e-patient is "empowered and engaged."

Wireless Revolution

The second revolution is that of the cell phone. Fully 85% of all Americans now own a cell phone. Fifty-five percent of Americans now own a laptop computer, and 57% use some sort of wireless access.

Rainie noted that 17% of people use their mobile device to gather and share healthcare information. Seven percent of people have some sort of healthcare app, such as a calorie counter, on their handheld devices. Most of these people tend to be young, minorities, living in an urban environment or from a higher socio-economic class. There appears to be no difference in usage between men and women.

Social Networking Revolution

One of the most interesting statistics Rainie shared was that the biggest increase in use of social networking sites from 2005 to 2010 was among adults ages 50 to 64. It went from 7% to 47%. This is particularly significant when you consider the increased use of health care resources by older people.

All of this has given rise to those Rainie refers to as "amateur experts" on healthcare issues. He concluded by stressing that this revolution in health information may seem scary, but "it provides a great opportunity for health literacy people to engage and participate in the process."

Health Literacy and the Web: Is Your Health Website Easy to Use?
Stacy Robison and Xanthi Scrimgeour

Stacey Robison and Xanthi Scrimgeour of CommunicateHealth noted that 74% of American adults and 95% of teenagers are online, looking for health information. Six in 10 say that their most recent search had an impact on their health.

The crux of designing a health literate website is to determine who the user will be and how to find out about them. Robison and Scrimgeour offered a series of methods, each focused on a stage of website design. To research the user, they suggested using focus groups, literature reviews, interviews and collaging. To identify and organize content, they recommended task-flow analysis and card sorting. To design and build prototypes, Robison and Scrimgeour emphasized usability testing.

Who is your audience?

The first steps to user-friendly web design are to identify your audience, understand their motivations, and identify their goals. In the case of low literacy users, this is usually something very specific. They want to accomplish a task or answer a question. You can use in-depth interviews and focus groups, and make personas, scenarios, and collaging. The last three involve creating a model user much like you would create a character in a novel. This character will have a name, family history, goals and even quotes. In the case of collaging, you can even create a visual representation of the character, called an "avatar."

What is your content?

According to Robison and Scrimgeour, content boils down to fulfilling the user's goals. Users spend an average of only between 27 seconds and two minutes to decide if a website will suit their purposes. In order to provide good content, follow these five principles:

• Put the most important information first
• Describe the health behavior
• Give specific action steps
• Write in plain language
• Check content for accuracy

Robison and Scrimgeour noted that high literacy users may be more willing and able than low literacy users to search through links. One of the things you can do is to engage users with interactive content. This can be a poll, true/false questions, or tips tailored to the user.

In terms of information display, Robison and Scrimgeour mentioned the "F" pattern. Literate users read a webpage in an "F" formation. They focus on the left-hand side and scan, then to the top right of the page. They scan less far as their eyes move down the page. This is not true for low literacy users, who skip instead of scan. In addition, they may first read the middle of the text, rather than to the left. They tend to skip over entire chunks of dense text.

Researchers note that more than three lines of text triggered low literate users to skip text, as did numbers, percentages and big words. Readers then started clicking on links instead of reading the content. In addition, limited literacy users ignore links and content in the right-hand margin, and rarely scroll. The solutions:

• Use bulleted lists and short sentences
• Limit text to three lines
• Keep key text above the fold
• Use only center and left navigation elements

Get organized!

Robison and Scrimgeour noted that good organization enables users to find information quickly. This involves having a category structure and labels. They demonstrated this principle by having participants engage in card sorting. Categories created by users often vary widely from categories created by website creators. 

They also stressed the importance of usability testing, or "how well users can learn and use a product to achieve their goals and how satisfied they are with that process."A crucial feature of usability testing is that it measures the product, not the user. It doesn't buy in to the deficit model; that is, it doesn't assume that we need to "fix" the user. Rather, it is the responsibility of the producer to make information accessible.

Create and Sustain a Plain Language Initiative
Jessica Ridpath

Jessica Ridpath, Research Communications Coordinator for the Group Health Research Institute's Program for Readability In Science & Medicine (PRISM), discussed how to get your organization to develop and institute a plain language initiative. She listed three main goals:

• Identify common obstacles when striving for culture change toward clear communication
• Describe specific strategies to help overcome these obstacles
• Use and share tools and resources that help create and sustain plain language initiatives.

Ridpath listed the three key components for the development of a plain language initiative: writers skilled in plain language, content experts, and readers (consumers or users) representing the intended audience. She described a successful initiative as one that makes a bridge between professionals and patients. Plain language is embedded in the entire organizational system, rather than just being useful to low literacy patients.

Starting such an initiative can be slow, and takes time and effort. Ridpath discussed her own six-year journey through challenging the notion of what "informed consent" was. This resulted in research on readability in informed consent, and PRISM, the Program for Readability In Science & Medicine (PRISM) Editing Service and Writing Workshops. PRISM centers around helping researchers and other health care professionals use plain language. It offers editing and consulting services, and an online training course for researchers.

PRISM began as six people from different departments who decided to begin using plain language. This gradually became an endorsement to spend time (but not money) on the initiative. It then turned into more than 40 people from different departments whose goal was to make plain language a kind of "universal precaution" in a system of 9,000 workers.

The second step was to focus on consent documents at all clinics for all procedures. This started by asking one clinic at a time to let the group revise their documents. Ridpath noted, "Now, the clinics are asking us."

She mentioned some of the obstacles to getting buy-in from the organization. There is the claim that the problem does not exist, the issue of time and money, and the claim that it's not acceptable to "dumb down" language. Ridpath explained, "The keys are: taking the challenge on personally, getting leadership involvement, making the business case for involvement, and framing the initiative as a solution rather than as a health literacy problem. It's not that we have a problem, but rather that we have an ideal; to communicate clearly."

Ridpath suggested using the show-me technique: "Revise first, then take the revision to the content experts and ask them to show you, if meaning is changed, how it has changed so that further revision can be done if necessary." She added that convincing the expert that a document needs to be changed is easier if you demonstrate the change first.

Writing for the Low Literacy Patient
Gloria Mayer, RN, EdD

In this session, audience members learned how to gear their healthcare messages to a low literacy audience. Gloria Mayer, CEO for the Institute for Healthcare Advancement, led the discussion with plenty of examples of actual material, both good and bad.

She started by discussing key concepts for participants to consider when writing for a low literacy audience. First, remember that your audience for the material will be very diverse. Some may have learning difficulties. Others may not use English as their first language. Still others may have had to leave school early for various reasons.

Once you have this in mind, you can identify the message you want to send. Are you promoting a class or a health fair? Or are you looking to provide general health information, such as the benefits of eating right and getting exercise?

Mayer explained that the message you want to send will often determine the format of the message you send out. If you are advertising a class or a health fair, a flyer may be what you want. On the other hand, health tips may be better presented in a newsletter format.

Once you have determined the message you want to send, and the format you wish to use, you can then move on to constructing the actual message. Mayer shared a few key concepts to keep in mind:

·         Limit your message to one or two. The fewer the messages, the greater the chance of understanding the message

·         Focus on action items, or "need to do." This provides the reader with what they need to do to achieve the goal.

·         Tell them the benefits of doing it. This provides them a reason to do the action.

·         Make sure your message is consistent with your other messages. This provides continuity and reduces confusion.

Mayer also suggested putting the most important message first. She added, "If people don't understand the first sentence, they won't read any further." She also suggested using subtitles and grouping like items together.

In looking at word choices, the most important thing is to avoid jargon. Mayer also suggested using contractions and personal pronouns, as well as one- or two-syllable words when possible.

Some words, such as "pregnancy" or "Medicare" just cannot be simplified but instead must be taught to the patient. Mayer suggested using a glossary of terms to help patients understand such terms. You can also have a separate, internal glossary for your organization to have on hand. She added, however, to be careful in using "drugs" to replace "medicine" or "medication" because some people might think you mean illegal street drugs.

Toward the end of her session, Mayer had some actual examples for attendees to critique. In many cases, the language was not simple enough. In other cases, there were confusing graphics that detracted from the message. One particularly striking example was a flyer offering a class in "Spanish only," but written entirely in English. Mayer added, "I'm not sure who they think will show up for a Spanish-only class if they don't advertise it in Spanish."

In closing, Mayer reminded attendees that while some say writing in plain language is insulting to patients, the truth is quite the opposite. "Nobody asks for things to be harder. We all want things to be easier."

Developing a Collaborative Style Guide and Glossary
Alan DeNiro

One of the more challenging problems organizations face is finding a way to share information in such a way as to avoid duplication of efforts and to allow people to "build" on each other's work. Such an information-sharing system can also build company culture and identity by allowing for collaborative efforts. Some tools that may help achieve this are intranet wikis, style guides and glossaries.

Alan DeNiro led off his discussion of these tools by first defining the word "wiki." Most computer users have heard of the Wikipedia web site. It defines a wiki as "A collaborative website which can be directly edited by anyone with access to it." In the case of an organization, a wiki is defined somewhat differently.

As Steward Mader explained in his article, "Your wiki isn't Wikipedia," from the January 2009 issue of Intercom magazine: "Inside an organization, the audience is much more stable and easily identified; it usually consists of employees, business partners, and, in some cases, customers. The more important considerations inside an organization are: interoperability with other business tools; ability to organize content by department, team, or project; and the ability to assign read-and-edit permissions to the appropriate content for each person."

Of course, once terms were defined, the next question to consider is "Why use these tools?" As DeNiro explained, "It's really a case of form following function. You want a collaborative way for tools to become a part of your health literacy effort."

DeNiro then went on to discuss the various tools that easily lend themselves to being stored in a wiki format:

·         Style Guide: Health literacy basics; "dos and don'ts"

·         Abbreviated Style Guide: The smartphone version of your style guide

·         Glossary: Substitutions of health literate words and phrases; clinical substitutions; basic style and grammar usage

·         Link sharing: Health literacy resources online

·         Community: Blogging

It may be difficult to determine where to start with all of this. What sort of material do you want to share in this collaborative manner? DeNiro suggested starting with a plain-language thesaurus, to get everyone in the organization thinking about health literacy. He added, "You can then think about augmenting from there by adding a style guide and a glossary."