National Action Plan to Improve Health Literacy
Nationwide Live Virtual Event

Michael Villaire, MSLM, and Gloria Mayer, RN, EdD, IHA 
Linda Harris, PhD, Office of Disease Prevention & Health Promotion, HHS 

The IHA Health Literacy Conference team paired up with the social media experts at Health Literacy Missouri to host its first annual live virtual event, with Facebook and Twitter participation, and a remote video hookup. The purpose of the event was to highlight how various organizations are implementing the seven points of the National Action Plan to Improve Health Literacy.

Approximately 100 people were there in person for the event. Another 87 watched the live video stream, while another 30 people contributed about 200 "tweets" via the Twitter feed. (You can watch an archived video of the entire event here and read a transcript of the Twitter feed here.)

Michael Villaire and Gloria Mayer (pictured at left) moderated the lively discussion in which many people were eager to share their stories. Linda Harris, lead of the Health Communication and e-Health Team, and Senior Health Communication and e-Health Advisor to the Deputy Assistant Secretary for Health & Human Services, Office of Disease Prevention and Health Promotion, joined in remotely from her office in Rockville, MD. Dr. Harris was instrumental in the creation of the National Action Plan.

Dr. Harris started the session by discussing how the Plan came into being. She emphasized that she was thrilled that all the attendees were coming together to work on discussing and sharing the Plan. She made a point of emphasizing how much has been accomplished within the health literacy field in just the past year, including the Affordable Care Act, Healthy People 2020, the Plain Language Act, and of course, the National Action Plan to Improve Health Literacy.

Julie McKinney (pictured at left) was first up to share her story. McKinney is the moderator for the LINCS health literacy discussion list. She mentioned that in her capacity as moderator, she has seen "a lot of health literacy stories." In her view, they are all very similar in that people interested in health literacy start out feeling very alone, as if they are the only ones who care about the subject. She added that once people find the listserv, they "start to participate and feel relief. They feel supported in their efforts." Dr. Harris gave McKinney's efforts very high praise, noting it as an exceptional resource.

A short video was then shown of a man talking about how something as simple as cutting soda out of his diet allowed him to help get his diabetes under control. In response, Villaire noted, "Everything we do has an effect. When we make positive life changes, we change the lives of those around us."

The next person to talk about their health literacy story was Siobhan Champ-Blackwell (pictured at left), community outreach liaison at Creighton University's Health Sciences Library. She also has a blog called Bringing Health Information to the Community.  She reminded the audience that libraries have great resources to help individuals and organizations put together their own National Action Plan. She added, "It is the mission of medical librarians to support this plan."

Champ- Blackwell was then joined at the microphone by Sharon Wilkerson, MD, a pediatrician at Children's Mercy Hospital in Kansas City, Mo. Dr. Wilkerson described a family library program she started in her hospital that allowed families of patients to read up on the condition of their loved ones. She noted that that people are always using the donor-funded library.

Champ-Blackwell responded that people come in to use medical libraries for lots of different things, including use of the Internet to look up information. Naturally, it is also very important for healthcare providers to evaluate the quality of that information, not just for accuracy but also for health literacy. A great example of this was another video of somebody who had heard that hypertension was a "silent killer." They took this literally to mean that they would be killed.

Villaire then pointed to the importance of medical libraries as part of health literacy's mandate to reach out to other disciplines. This is particularly important because health literacy issues don't fall into neat categories. It's not always easy to spot people with health literacy issues. Villaire added that medical jargon can be a particularly dangerous pitfall.

The discussion of medical jargon was a great jumping-off point for the next story, which was about how to train healthcare providers as to the importance of health literacy. One provider mentioned a group of nurses in training who did role-playing, where one of them played the part of the patient. At the end of the exercise, the exasperated nurse exclaimed, "Wow, I just couldn't keep up with all that jargon you were throwing at me!" This story is a perfect example of how even trained healthcare personnel cannot always comprehend medical information.

Gloria Mayer, CEO for the Institute of Healthcare Advancement, then told her story about how she got started with health literacy. In the process of picking up trash scattered around the healthcare facility where she served as Chief Operating Officer, she noticed that patients were almost immediately throwing out the educational material they were given. When she asked the patients why they were throwing away the material, they all responded that they couldn't understand it. She then realized that it wasn't that patients weren't complying. It was that they were not being given information in a manner that they could understand.

Adriana Batista, MPH, added her thoughts about making material easier for patients to understand and engage with. In addition to her work as a health educator with the Friends of Family Health Center in La Habra, Calif., Batista writes comic book stories. She stressed the importance of making material engaging and using humor as a great gateway to talking to patients. She added that it is also important to be aware of cultural issues. For example, a direct word-for-word translation into another language might not say quite the same thing as in the original language. Use the language of how people speak, rather than how they write.

Harris summed up the event nicely by stating, "Health literacy is no longer a sidebar to healthcare."

Write Your Own National Action Plan Workshop
Michael Villaire, MSLM 

Following up on the successful National Action Plan virtual event, in which attendees learned what various organizations and individuals have done to fulfill the Plan, Michael Villaire hosted a nuts-and-bolts workshop to show how to create your own Plan.

Before letting everyone roll up their sleeves and get their hands dirty, Villaire started by explaining why you would want to create a Plan in the first place. He had several main points:

·         It helps create health literacy culture and identity. This allows for the field to grow and expand.

·         It allows you to answer questions others may have. This sets up your organization as the "go to" place for health literacy.

·         It allows your organization to ask and answer the "bigger questions" about healthcare, such as how to reach as many people as possible with your message.

·         It helps establish a heath literacy culture and identity. This raises the credibility of the field not only among other professionals, but also among the general public.

Villaire stated that making a Plan does not mean you have to start from scratch. You can work the Plan into your existing organization by targeting the needs that your organization already fulfills. Think about which areas you want your Plan to focus on. See what other people have done and what is already out there. This will avoid duplication of efforts.

Creating a Plan may seem daunting, but Villaire reassured the audience that it can be done. You need to establish accountability. This means outlining which person will be responsible for which tasks, and then making sure they complete those tasks. Building a roadmap helps with this, as it allows you to break down the entire Plan into manageable pieces.

In order to do this, you need to have both leaders and advocates. Villaire explained that leaders are those people within the organization who take responsibility for the objectives and goals set up for your Plan. They are the people who make timelines, assign tasks and verify that those tasks have been completed in a timely fashion.

By comparison, an advocate is somebody who can help you remove barriers to achieving your objectives. Villaire added that one of the strongest advocates you can have is somebody within senior management: "You need their buy-in to make this work. Remember, marketing healthcare is not like marketing a Ferrari"

He also warned that the biggest roadblock is likely to be the legal department, particularly with regard to informed consent. He noted, "It's not so much informed consent as it is a signature under pressure."

Audience member Cheryl Stephens responded that there are two good resources to consider. One is called Lawyers for Literacy and provides resources to help lawyers write more clearly when providing legal services. The other is Clarity International, a group of international lawyers dedicated to using plain language instead of legalese.

Mayer then made the point that you need to look at your financial resources as well. What funding is available? Can you apply for grants or sponsorships?

It was then time to turn participants loose on creating their own Plans. Villaire kick-started things by having them think about how to communicate with partners and patients, both about the Plan and health literacy as a whole.

After breaking into small groups, attendees regrouped to discuss the Plans they had devised. One group had come up with the goal of making their website easier to understand and navigate. Some of their action steps included having focus groups go over the site material, and redesigning the site so that users can get to information with fewer clicks. They also considered looking at which parts of the site needed to be redone. This breaks a very large task down into smaller, more manageable pieces.

Another group wanted to assess if their healthcare providers were doing patient teach-back appropriately. They came up with the idea of videotaping the teach-back sessions (with patient permission, of course) so that healthcare providers could review the tapes. This allows them to see what they are actually doing, so that mistakes or misunderstandings could be corrected. The other advantage is that this training helps create a culture of health literacy among the providers. It turns health literacy into a long-term endeavor.

Attendees appeared eager and enthusiastic to further work on the Plans they had started during the session once they got home. Villaire reminded them that having these Plans in place was proof that their organizations were "walking the talk" of health literacy.

Health Literacy 101: An Introduction to the Field
Michael Villaire, MSLM

The popular "Health Literacy 101" rounded out the preconference sessions. This beginner's course, taught by Michael Villaire, provided not only data to support health literacy, but clips from a powerful video from the AMA Foundation.

Villaire started off with some of the most common definitions for health literacy:

• ·         Health Literacy: "The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" (Ratzan and Parker, Introduction to National Library of Medicine Current Bibliographies in Medicine: Health Literacy. 2000)

·         Health Literacy: "The ability to read and comprehend prescription bottles, appointment slips, and the other essential health-related materials required to successfully function as a patient." (AMA Council of Scientific Affairs, 2000)

He added that the problem with most definitions of health literacy, like the ones above, is that they put the responsibility on the patient. The problem is, "There is no class on being a good patient. We learn by trial and error."

By comparison, he shared his preferred definition from the Calgary Charter on Health Literacy that puts the responsibility on the healthcare providers:

·         "Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improve the ability of people to act on information in order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills."

In order to act on this responsibility, healthcare providers must take into account several components. These include reading and writing, verbal communications and listening skills (both provider and patient), cultural or belief systems, and understanding any provider/patient mismatches.

To demonstrate his point about the need for health literacy, Villaire then took the audience through an exercise. He read a paragraph from a very complicated academic article on nuclear physics. He then asked the audience what it meant. As expected, nobody could understand what he had just read. Villaire noted that this example proved the point that if patients can't understand what their healthcare providers are saying, they won't follow through properly.

Villaire then showed the AMA video and asked afterward for audience reaction. People mentioned that there was a huge sense of shame with not being literate. The patients in the video mentioned that they did not feel they could easily ask questions of their providers. Some even would avoid going to the doctor's altogether out of a fear that their low literacy would be revealed.

Villaire also highlighted some of the biggest health literacy myths. Among them:

·         Writing at a low grade reading level or using plain language is "dumbing down"

·         Using plain language that is easy to read is unprofessional and insulting

·         Writing at a lower grade level is easy to do

·         Why do this? Most people understand what we send to them

Villaire then moved into a discussion of other health literacy statistics. One study cited the fact that 44% of Americans have either basic or below basic literacy skills in reading words. Thirty-four percent have low literacy when it comes to reading forms or documents. Finally, an astonishing 55% have low literacy when it comes to numbers. In comparison, only 12% were found to have proficient health literacy skills.

In looking at who has poor health literacy, Villaire noted:

·         Nearly 60% of those age 65 or older have either basic or below basic skills

·         Those with employer health insurance have higher health literacy

·         Those with Medicare, Medicaid or no insurance have lower health literacy

·         43% of those living below the poverty level have below basic skills

·         75% of those who said they had poor health had below basic skills

As expected, poor health literacy is very costly to the healthcare system. Villaire cited one study that estimated $73 billion in annual unnecessary health costs due to low health literacy. Another study estimated an even higher annual amount of somewhere between $106 billion and $238 billion.

Once the audience understood the full scope of the problem, Villaire then went on to discuss possible solutions. One of the most important is what he called "Universal Precautions." This involves, among other things:

·         Assuming that all patients read at about a 5^th-grade level.

·         Limiting to three "need to know" messages.

·         Using the phrase, "What questions do you have?"

·         Don't ask "Do you have any questions," as patients are likely to simply say "no," even if they don't understand.

Another important solution is using plain language. Villaire supplied a list of common medical jargon terms, along with possible alternate words. For example, you can use the phrase "throw up," instead of "vomit." Essentially, it involves using what Villaire terms "living-room language." This would be the level of conversation you might have among family or friends on a daily basis.

Finally, use various teach-back techniques. Explain the concept to the patient. Have them repeat back in their words what you told them. Go back and forth until you are confident the patient understands.

Villaire mentioned one example of such a technique, known as the "brown-bag test." Have the patient bring in all their medications in a brown bag. Ask them to identify each medication, along with how often they take it and what they take it for. This can also serve as a quick literacy test, since patients who cannot read the instructions on the label will instead look at the medication itself to identify it.

In closing, Villaire recounted the story of former New York Mayor Rudy Giuliani's reaction to finding out his prostate cancer test was positive. Giuliani assumed that this was good news; that he did not have cancer. Villaire gave this example to show that even a very intelligent man such as Giuliani cannot necessarily understand complex health concepts. He commented, "The word 'negative' is considered bad in every context except health care."

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Friends of Family Health Center Tour
Gloria Mayer

On Wednesday evening, a group of 30 conference attendees went on a field trip to visit Friends of Family Health Center (FOFHC), a licensed community clinic that works with IHA to make itself more user friendly for those with low health literacy skills. Gloria Mayer, the CEO for IHA (pictured at left, in the Pediatric side of the health center), led the tour.

Visitors were led on a tour through the expanded adult clinic, as well as the pediatric medical and pediatric dental clinics. One of the tour highlights was a giant wall mural painted by self-taught artist Katherine A. Taylor. The colorful mural in the pediatric wing of the clinic depicts various sea creatures reading books to each other, including "Green Eggs and Clams."

Other highlights of the tour included visitors getting to see some of the low literacy patient education material that FOFHC offers, as well as a brief lecture by Mayer on how the clinic was set up. Those on the tour also got to enjoy a light dinner.

Tour attendees were very enthusiastic about the opportunity to see a real-world application for health literacy. When asked to provide feedback at the end of the conference, many asked for the tour to be included again next year. Some even remarked that it was the conference highlight for them.