Linda Burhansstipanov

Linda B created and oversees the Native American Cancer Research website which is used not only by Native Americans but also by people from around the world. Linda is the author of nearly 100 peer-reviewed articles and advises many healthcare organizations about issues affecting Native Americans.

In this podcast, Linda B talks with Helen Osborne about:

• Native American concerns related to health and cancer
• Communication strategies including stories, metaphors, and pictures
• Creating a website with a strong cultural identity
• Lessons learned that health communicators can use with all audiences

More Ways to Learn:

• You can email Linda B at LindaB@natamcancer.net. But please know that it may take her a few days to reply as she may be in areas with no Internet connection.
• Native American Cancer Research Website, available at www.natamcancer.org

Rick Siegrist

Looking at satisfaction data along with patients’ sentiments is proving to be an effective way of understanding many aspects of the patient’s experience, including health communication.

In this podcast, Rick Siegrist talks about:

• Using satisfaction surveys to learn about and improve healthcare quality.
• Analyzing sentiments – a way to translate human emotion into hard data.
• Bridging sentiments, satisfaction and health communication in your practice.

More Ways to Learn:

• Press Ganey: Partners In Improvement, at http://pressganey.com
• “Mining the Web for Feelings, Not Facts” by Alex Wright, New York Times, August 23, 2009. Available at http://www.nytimes.com/2009/08/24/technology/internet/24emotion.html

Laurie Martin, ScD MPH

A prototype is being used in Missouri. The goal is to expand nationwide, providing tools that researchers and practitioners can use to target health literacy interventions in ways that are efficient and cost-effective. In this podcast, Dr. Martin talks with Helen Osborne about:

• Health literacy from a population perspective. How this differs from an individual perspective.
• Using a predictive model to estimate and map community-level health literacy.
• Lessons learned to apply on a population level, individual level, and community level.

More ways to learn:

• To learn more about mapping health literacy, contact Laurie Martin directly at Laurie_Martin@rand.org
• A Prototype Interactive Mapping Tool to Target Low Health Literacy in Missouri available at: http://www.rand.org/health/projects/missouri-health-literacy/
• Laurie N, Martin LT, et al.  (2010) Estimating and Mapping Health Literacy in the State of Missouri available at: http://www.rand.org/pubs/working_papers/WR735/
• Martin et al. (2009) Developing Predictive Models of Health Literacy. Journal of General Internal Medicine, Vol. 24, No. 11, 2009
• National Action Plan to Improve Health Literacy. Available at http://www.health.gov/communication/HLActionPlan/
• Health Literacy Out Loud Podcast #39 “National Action Plan to Improve Health Literacy,” an audio interview with Dr. Cynthia Baur. Available at http://www.healthliteracyoutloud.com/2010/06/08/hlol-39-national-action-plan-to-improve-health-literacy/
• Health Literacy Out Loud Podcast #30, “Making a Business Case to Move Health Literacy Forward,” an audio interview with David Walsh. Available at http://www.healthliteracyoutloud.com/2010/01/05/hlol-30-making-a%C2%A0business-case-to-move%C2%A0health-literacy%C2%A0forward/

John Comings

Dr. Comings’s research and writing focuses on the impact of adult literacy programs and factors that predict persistence of adult education students in the U.S. and Third World countries. In this podcast, he talks with Helen Osborne about:

• The literacy part of health literacy, including components of reading skills
• The health part of health literacy, including functional skills within health contexts
• Practical literacy strategies that health professionals can use today
• Ways the health system can collaborate with the adult literacy system

More Ways to Learn:

• You can reach John Comings directly by email at john.comings@gmail.com
• U.S. Federal government’s Division of Adult Education and Literacy: http://www2.ed.gov/about/offices/list/ovae/pi/AdultEd/index.html
• To locate the state office of adult education: http://www.naepdc.org/Members/members_home.html
• In Canada, National Adult Literacy Database: www.nald.ca
• National Assessment of Adult Literacy: http://nces.ed.gov/naal/
• NCSALL’s research: www.ncsall.net
• National Institute for Literacy www.nifl.gov

Mark Gibson

In this podcast he compares and contrasts ways to assess readability in the European Union (EU) and the United States. Topics include:

• Assessing readability: How does the system used in the EU compare to that in the United States?
• EU process of assessing readability: What works well and what does not?
• Lessons learned and resources that listeners can use right away.

More Ways to Learn:

• Mark Gibson’s business is RiW Design Ltd, www.riw-design.com You can contact him directly by email at mark@gibsonrs.eu
• Gibson M, Hochhauser M. “Readability Testing: European Performance vs USA Formulas,” SoCRA Source: A Publication of the Society of Clinical Research Associates. May 2010:69-71.
• Sless D, Wiseman R. Writing About Medicines for People. Canberra: Australian Government Publishing Service, 1997
• Guideline on the Readability of the Labelling and Package Leaflet of Medicinal Products for Human Use, European Medicines Agency, Revision 1, 12 January 2009. Available at http://ec.europa.eu/enterprise/sectors/pharmaceuticals/files/eudralex/vol-2/c/2009_01_12_readability_guideline_final_en.pdf [last accessed 09Jun2010]

Cynthia Baur, Ph.D.,

Dr. Baur is the lead author for the National Action Plan to Improve Health Literacy and helped develop CDC’s online health literacy training for health professionals. In this podcast, she talks with Helen Osborne about the National Plan to Improve Health Literacy. Topics include:

• How the National Action Plan to Improve Health Literacy was developed with input from researchers, practitioners, and community members.
• Ways individuals and organizations can use this health literacy action plan.
• A national and international perspective about health literacy.

More Ways to Learn:

• National Action Plan to Improve Health Literacy. Available at http://www.health.gov/communication/HLActionPlan/
• Proceedings of the Surgeon General’s Workshop on Improving Health Literacy. Available at http://www.surgeongeneral.gov/topics/healthliteracy/toc.html
• Healthy People 2010 & 2020. Available at http://www.healthypeople.gov/
• CDC: Health Literacy for Public Health Professionals (Web-based). Available at http://www2a.cdc.gov/TCEOnline/registration/detailpage.asp?res_id=2074
• HRSA: Health Literacy Free Online Course. Available at http://www.hrsa.gov/healthliteracy/default.htm
• Health Literacy Out Loud Podcast #17: Dr. Arthur Culbert Talks About Statewide Health Literacy Initiatives. Available at http://www.healthliteracyoutloud.com/2009/06/23/hlol-17-dr-arthur-culbert-talks-about-statewide-health-literacy-initiatives/
• Health Literacy Out Loud Podcast #15: Dr. Rima Rudd Talks About the Health Literacy Burden in Healthcare. Available at http://www.healthliteracyoutloud.com/2009/05/04/hlol-15-dr-rima-rudd-talks-about-the-health-literacy-burden-in-healthcare/

Andrea J. Apter, MD, MA, MSc

Both as a doctor and as a teacher, Apter knows the challenges of communicating numeric concepts in health education. To help, she along with collaborators, have proposed a model to make this task easier for all.

In this podcast, Dr. Apter talks with Helen Osborne about:

• Why numeracy matters in healthcare and preventive medicine.
• Strategies to improve understanding that givers and receivers of health information can use today.
• Thoughts about long-term solutions & need for health numeracy research.

More ways to learn:

• Apter AJ et al (2008), “Numeracy and Communication with Patients: They Are Counting on Us,” Journal of General Internal Medicine 23(12):2117-24.
• Apter AJ et al (2009), “Linking numeracy and asthma-related quality of life,” Patient Education and Counseling 75: 386-391.
• Apter AJ et al (2006), “Asthma Numeracy Skill and Health Literacy,” Journal of Asthma, 43:705-710.
• Golbeck AL, Ahlers-Schmidt CR, Paschal AM, and Dismuke SE (2005), “A Definition and Operational Framework for Health Numeracy,” American Journal of Preventative Medicine 29(4):375-376.
• Osborne H, (2007) “In Other Words…Health Numeracy: How Do Patients Handle the Concept of Quantity When It Relates to Their Health?” On Call Magazine, http://www.healthliteracy.com/article.asp?PageID=6509
• Osborne H, (2004) “In Other Words…Working With Numbers,” On Call Magazine, http://www.healthliteracy.com/article.asp?PageID=3745
• Osborne H, (2004) Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. Sudbury, MA: Jones & Bartlett. http://www.jblearning.com/catalog/0763745502

Click here for a transcript of this episode:

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month, and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some pretty amazing people. You will hear what health literacy is, why it matters, and ways we all can help improve health understanding.

Today, I’m talking with Dr. Andrea Apter. She’s a practicing physician and professor of medicine at the University of Pennsylvania, specializing in the treatment of patients with asthma.

Before being a doctor, Dr. Apter was a math teacher, working with students from sixth grade on. Both as a doctor and a teacher, Dr. Apter knows the challenges of communicating numeric concepts in health education. Along with some collaborators, she’s proposed a model to make this task easier for all.

Welcome, Dr. Apter.

Dr. Apter: Thank you for having me.

Helen: To be honest, I’m really intrigued by the topic of health numeracy. I think my intrigue is the opposite end of yours. My intrigue is the fact that numbers have always been hard for me. From your perspective, why does health numeracy matter?

Dr. Apter: That’s been the subject of my research. The first thing that happened was that I noticed patients had trouble with numbers. It caught my attention because I used to be a math teacher.

I noticed that if a patient was asked to take 30mg of Prednisone and was given 5mg pills, it was very difficult for many patients to figure out how many pills they had to take. I noticed that many patients from all walks of life had trouble understanding milligrams and denominations of medications, even though most of these patients could make change very easily.

I also noticed that physicians were stumped by numerical concepts every once in a while. Then I began to read, and I found that there had been studies that showed that people from all walks of life, whether they were doctors or patients, had trouble with numbers. I wondered if it impacted on health communication.

Helen: Do you think you were more sensitive to it with your background as a math teacher?

Dr. Apter: I’m sure I was.

Helen: For the person who had a hard time with the Prednisone because the Prednisone pill wasn’t in the same amount that person needed to take, what was the implication in healthcare?

Dr. Apter: The implication was that the patient possibly didn’t understand the instructions, or said another way, that the physician gave the instructions in such a way that they were not understandable.

This was an opening for errors, perhaps preventing the patient from getting better or even causing an adverse event. Most of these mistakes probably wouldn’t lead to very serious end points individually, but they could all add up to not getting the best healthcare possible.

Helen: It sounds like in that situation the person needed to divide or multiply, one of the basic arithmetic concepts. Is that what people need to do the most in healthcare, to add, subtract, multiply or divide? Is there something more we’re asking of our patients?

Dr. Apter: There is a lot of attention paid to preventative medicine these days, which is risk, probability and fractions. Those are difficult for many people. That becomes very important.

There are even simpler mathematical concepts that may be difficult for some people, like simply reading numbers. As an asthma specialist, we sometimes give patients peak flow meters. They may be hard for people to read. In addition, we sometimes ask them to track their readings and put them on a line chart. That may be hard for patients.

I’m not trying to say that people are incompetent. These sorts of problems have been shown in other research to have nothing to do with basic intelligence.

Helen: I think I’m Exhibit A in that one.

I actually have the nerve to sometimes give presentations on numeracy, which I think is silly in ways but also good in ways. I introduce myself and say, “My daughter is a biologist, my son is an engineer, my husband is a physicist, and me, I don’t do numbers.” I’m almost proud of it that way.

Then I might say, “Why am I talking about it? Because I’m Exhibit A. I know what it’s like to not understand numbers.” I relate to that, and I appreciate your sensitivity. It doesn’t matter how strong we are in other areas. There seems to be a fine set of skills that makes numbers a little bit different.

Dr. Apter: I don’t know what it is, and I’m not immune to mistakes, either. We often get white counts given one way, and we have to convert them another way. I catch myself  making a mistake every once in a while. I have a patient who is on a medication that I have to convert from one form to another all the time. I have to do it very carefully.

The point is that when patients are in front of doctors, they’re usually very anxious. It’s not a pleasant situation. Society can also make understanding of almost anything difficult.

Helen: It sounds like it’s certainly an issue in healthcare, which is what you do when someone comes to you needing medication or treatment, but you were saying that it’s also an issue in prevention and wellness. How do numbers crop up there?

Dr. Apter: If a doctor says to a patient, “If you lose 5% of your weight, your blood pressure will be much better, and your risk of stroke will be reduced,” in that sentence there are several mathematical concepts.

The doctor said 5% instead of saying how many pounds, which might be a simpler concept. Then the doctor said, “Your risk of dying from a stroke might be reduced.” Risk is a probability.

Helen: It’s not even just the numbers themselves. It’s the broader concepts. When I look at nutrition information, and I do look at this a fair amount because we’re talking about weight and measurement over the course of a day, and over the course of a week, there seem to be a lot of mathematical concepts in there that don’t look like numbers. They’re just words. It’s a plain old sentence like, “Reduce your weight.” It seems like there’s much more underneath all of that.

Dr. Apter: When you say things like, “If you take this medication, you will have a 1 in 10 chance of having _____ benefit, but if you stop smoking, your risk will be reduced much further to 1 in 100,” those are very difficult concepts.

Helen: I certainly appreciate the enormity of the challenge. What do you suggest we do about this?

Dr. Apter: I have suggestions for the people who deliver the information, which would be healthcare providers, and then I have some suggestions for those on the receiving end.

The message for those on the receiving end is to have courage and not fear telling people that you don’t understand, you would like another explanation, you’d like them to repeat it, or anything like that.

There are a lot of things practitioners can do. The onus is probably on them.

Helen: What are some of them?

Dr. Apter: The first thing is to simplify the numerical concept being used. You mentioned in the introduction that we put together a model of how that might be done.

We lined up on a grid all the mathematical concepts that are commonly used in talking to patients. We made a hierarchy from least difficult to most difficult using some concepts used by other researchers. We picked out the ones that would be most relevant in healthcare in our practice.

Helen: I’m actually looking at that paper as we speak. For the listeners of this podcast, we will have a link on the website. The article I’m looking at is called Numeracy and Communication with Patients: They Are Counting on Us. You are the first of several authors. This was published in the Journal of General Internal Medicine in 2008.

We will have a link for that. It’s a very important paper. It’s one I refer to a lot.

Tell us more about this grid.

Dr. Apter: It’s essentially a table. The vertical lines are math concepts of increasing difficulty.

Helen: “Vertical” meaning up and down.

Dr. Apter: Thank you. The most difficult are at the bottom. The horizontal grid from left to right has the communication skills necessary for understanding information, going from simplest to hardest, from “describe” to “interpret” to “decision-making.”

Helen: What are some of those numeracy elements as they go from the easiest to the hardest? What are the types of tasks you’re including?

Dr. Apter: The easiest might be reading numbers, counting and telling time. The more difficult ones would be arithmetic operations, estimating size or trends, understanding percentages, problem solving, logic, reading tables, estimation of error, and uncertainty and risk. Those are examples. It’s not a perfect hierarchy. There is probably overlap.

Then going horizontally is information that is purely descriptive versus information that has to be interpreted versus information upon which a decision has to be made.

Helen: Can you tell me more what you mean by “describe”? I’m looking at this table under “frequency.” That’s the task, looking at frequency. What are you looking for a patient to do when you’re talking about “describe”?

Dr. Apter: Suppose a patient is told to lose 5% of their weight. That would place them in the chart under “understanding percentages,” sort of midway down the grid, forcing them to interpret what 5% of their weight means in terms of losing weight.

Instead, if the provider says, “Lose 15 pounds,” that moves up on the chart to just “reading numbers and description.” The patient doesn’t have to interpret.

The numerical concepts and communication are simplified by changing the way the information is given by moving upward on the grid toward an easier math concept and more toward the left from “interpret” to “describe.”

Helen: Thank you. I think this table is rather brilliant, and I hope everybody will get that article and look at it as we are talking about it. What else can health communicators do to make this easier?

Dr. Apter: Changing to a simpler concept is certainly one thing. One doesn’t have to go through all the machinations in that table. There are some other things, too. One is to format for clarity. One might want to give several formats. A provider might want to give both verbal and written instructions.

If it’s written, there should be a lot of attention to whitespace. Did your English teacher ever talk to you about whitespace?

Helen: I hope I was paying more attention in English class than I was in math class. Whitespace is the unprinted area of a page, correct?

Dr. Apter: Correct. It’s not cramming the whole page full of numbers, formatting carefully with paragraphs, and not having one gigantic 20-line paragraph that scares one away before one starts to read.

It’s combining words, tables, graphs and pictures, as simply as possible. There don’t have to be a lot of them. Maybe there could be one line or a few words and maybe a picture. It doesn’t have to have all of them.

That goes along with removing any non-essential information. For example, suppose there is a brochure of a hospital for a patient. What the patient might want to know is what facilities are there, like the X-ray department and laboratory. Extra information, such as how many beds there are and other superfluous information, might not be important and can be removed.

Helen: It sounds to me as if that’s really incorporating all those wonderful principles of plain language, but making sure to do it with numbers as well. I’m a very visual person, so those pictures help me a lot. That’s something I recommend doing, and I try to do it as well.

When you are writing about numbers, the old style guides always said to write out the number until 10 and then use the numeral. Do those rules still apply, or do you think we should have a little more latitude?

Dr. Apter: I’ve been trying to break the rules lately. I just use the numeral instead of writing it out because I think it’s clearer, even when it’s below 10, but I can’t promise the editors won’t change it. I see people doing it more and more.

Helen: I’ve been trying to do that more and more, too. If you’re saying that that’s the good thing to do, I think people can go forth and have a little more clout in their argument.

What about the role of symbols? I know you specialize in asthma. I happen to be working on materials lately about peak flow meter measurements. I’m taking the information this client is giving me, and they use the mathematic symbols for greater than and less than. What do you think about symbols like that, not just the numbers and words?

Dr. Apter: I think it depends on the audience and the reader. If I were to use it with a patient, I’d make sure that the patient knew it, that’s all. Doctors are very good at using lots of abbreviations and symbols. We have so many of them that we begin to think everybody knows what we’re talking about, and that’s not the case. One has to be careful about symbols, too.

Helen: I have this image of you right now as this kind of hybrid between a doctor and a math teacher. I keep thinking how reassuring it would be if I was your patient and you were explaining to me what the symbols were or how to do the calculations.

Dr. Apter: I’m as guilty as anybody of all these mistakes.

Helen: Do you find when you do this over and over again, as probably many of our listeners do, that you get caught up in assuming that everybody can use numbers as well as you can?

Dr. Apter: I think it’s easy to assume that somebody else is thinking the way that you are. That’s always problematic because we all come from different experiences.

Helen: That gets to the core of what health communication is all about. Beyond these strategies that people can use on a day-to-day basis, do you see greater ways to make a longer lasting difference in how people can understand and use numbers?

Dr. Apter: I think that’s a very difficult question. That’s the subject of my research. I assume that the answer is yes, of course, but there are a lot of difficulties. One is in measuring literacy.

In order to show an improvement, you have to measure whether the literacy changes. The literacy may depend on a particular medical situation, and there aren’t a lot of tools, questionnaires or ways of measuring literacy, so there isn’t a lot for specific situations.

Here I get into mathematical concepts. All tools or questionnaires have error in them. Whether the error is significant or not in these tools hasn’t been widely assessed. It’s really a beginning field.

Then one has to measure not only literacy, but how health improves. How to measure whether health improves is also very difficult. It often requires following patients over time, which is very difficult for patients and expensive for research.

Helen: You’re advocating that we go down that path of doing that good research.

Dr. Apter: Of course.

The other thing with literacy is that literacy rests on the educational experiences people have over the course of their lives. If people don’t get the very best education when they’re young, that influences literacy for the rest of their lives, and it influences the jobs, health insurance and healthcare that can be obtained. That has to be looked at, too. All of this is really a large task.

Helen: You’ve given us lots of strategies in the short term, some bigger ideas for research and some gigantic issues to tackle of changing the US educational system.. What are your recommendations for one thing we should add to our practice and one thing we should subtract from our practice?

Dr. Apter: That sounds like a great idea, and I like the words “add” and “subtract.”

Helen: What are your suggestions? What should we add, and what should we subtract on a day-to-day basis?

Dr. Apter: In terms of patient-provider interactions, I think these things have to be individualized. Any extra information that can be subtracted is really important.

Helen: You talked about adding and making it more individualized. You talked about subtracting, getting rid of all that extra stuff we don’t really always need to say or write about, and just confirming understanding for it all.

Thank you so very much for sharing this with me. As I said, this area fascinates me. I can’t think of a better person to interview than someone who not only is a doctor but also a math teacher. Thank you so much, Dr. Apter.

Dr. Apter: Thank you. It was really a pleasure.

Helen: I learned a lot from Dr. Apter and hope you did, too, but health literacy isn’t always easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free enewsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find more information about each episode, along with important links, at the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

Did you like this podcast? Did you learn something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

Wendy Welch PhD

Beyond these many professional achievements, Wendy co-owns a used bookstore, tours as storytelling performer and instructor, and is an accomplished craftswoman. In this podcast, she talks with Helen Osborne about using folktales, personal stories, fairy tales, and urban legends as tools for healing. Topics include:

• Using folktales with people of all ages, abilities, and cultures.
• Using folktales to motivate behavior change.
• Using folktales in community based participatory research.
• Using folktales in your practice and getting more involved with research.

More ways to learn:

• Wendy Welch welcomes hearing your story about using folktales as tools for healing. You can email Wendy directly at wow6n@uvawise.edu
• Healthy Appalachia Institute, http://www.uvawise.edu/health
• National Storytelling Network, http://www.storynet.org
• Osborne, H “In other words…Tools of change: Telling and listening to stories,” On Call magazine, October 16, 2008. Available at http://www.healthliteracy.com/article.asp?PageID=8051
• Pantheon and Dolch are publishing houses that do and did (respectively) collections of fairy tales and multicultural folktales. Welch advises that if you find collections from either publisher (at a second-hand bookstore, perhaps) then you can rest assured they will be good.

Izzy Gesell M.ED, CSP

Izzy not only is funny in his own right but also teaches others how to use humor and play. He is the author of numerous publications including Playing Along: Group Learning Activities Borrowed From Improvisation Theater and Cancer and the Healing Power of Play.

In this podcast, Izzy talks with Helen Osborne about:

• How humor & play can add positive energy, build bridges, and create bonds.
• Knowing when, and when not, to use humor in health communication.
• Being humorous, even when you think you’re not funny.

More Ways to Learn:

• To contact Izzy Gesell and access his many resources, go to Izzy’s website at www.izzyg.com
• Osborne, H. “In Other Words…Adding A Dose of Humor to Your Patient Teaching,” On Call Magazine, July/August 2003. Available at http://www.healthliteracy.com/article.asp?PageID=3797
• Health Literacy Out Loud Podcast #5: Jan Potter Talks about Using Humor & Graphics to Convey Health Information. Available at http://www.healthliteracyoutloud.com/2008/11/17/jan-potter-talks-about-using-humor-graphics-to-convey-health-information/
• Martin, Steve (2007). Born Standing Up: A Comic’s Life. Available in print and as an audio book.

Donald Rubin, PhD

Much of Dr. Rubin’s work focuses on assessment, training, and analysis of oral communication, including listenability. His current research looks at 1) health literacy and health communication message design, 2) public health workforce development in communication to reduce health disparities, and 3) assessment of language proficiency among non-native speakers of English.

In this podcast, Dr. Rubin talks with Helen Osborne about:

• Interactive health literacy. How do written and spoken communication differ?
• The communication environment. How physical and linguistic aspects affect communication.
• Older adults. A research study about their distinct communication needs.
• Practical strategies. How all health professionals can invite patients/consumers to participate verbally in their health care encounters.

More ways to learn:

• You can email Dr. Rubin directly at drubin@uga.edu
• Check out work on interactive health literacy being conducted at the University of Georgia’s Center for Health and Risk Communication. See especially http://www.chrc.uga.edu/research/healthliteracy.html
• Rubin, D.L. (2008, September). “Readability is Just for Starters in Health Literacy.” Newsletter of the National Public Health Information Coalition, Volume 19, No. 5, p. 4. Available at http://www.nphic.org/news/newsletters.html?start=5
• Rubin, D.L., Hafer, T., & Arata, K.  (2000).  “Reading and Listening to Oral-Based Versus Literate-Based Discourse.” Communication Education, Volume 49, 121-134.
• Osborne, H. “Communicating When Naked: My Perspective as a Patient.” On Call magazine, May/June 2006. Available at http://www.healthliteracy.com/article.asp?PageID=4221
• Agency for Healthcare Research and Quality. “Quick Tips—When Talking With Your Doctor.”  Available at http://www.ahrq.gov/CONSUMER/quicktips/doctalk.htm
• American Association of Retired Persons. “How to Talk to Your Doctor.” Available at http://www.aarp.org/health/staying_healthy/prevention/a2003-03-13-talkdr.html

Click here for a transcript of this episode:

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month, and your host of this podcast series, Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some pretty amazing people. You will hear what health literacy is, why it matters, and ways we all can help improve health understanding.

Today I’m talking with Dr. Donald Rubin, who is Emeritus Professor of Speech Communication, Language and Literacy Education, and Linguistics at the University of Georgia. He is also senior researcher at that institution’s Center for Health and Risk Communication.

Much of Don’s work focuses on assessment, training and analysis of oral communication, including something he refers to as “listenability.” His current project looks at health literacy and health communication message design. Don’s talents go beyond these many academic accomplishments. When he’s not designing communication messages, Don’s in the kitchen cooking up soups, stews and stir-fries. Welcome, Don.

Don: Thanks very much, Helen. I’m glad to be online with you and your audience.

Helen: We’re all in this one together, and we all want to hear about oral communication. Boy, wouldn’t my husband want me to learn a lot about listenability? It sounds like quite a talent.

Let’s take it from the top. Your interests are communication, which is evident by all your accomplishments, but also cooking. Is there any connection between the two? How are these two concepts alike?

Don: My concept of cooking is not necessarily by the cookbook. I always feel that the best way to cook is improvisationally. I get some kind of idea of what I would like the end product to look like, but the truth is when I am in the process of cooking I see a spice or ingredient that appeals to me and I pull that in. That might affect my next choice.

Really, that’s the way conversations work, too. Conversations may have some sort of an endpoint in mind, but we improvise our way to them. By the time we get to the end of that conversation, it often ends up in a very different place than we may have anticipated to begin with. That’s sort of the stew theory of conversation.

Helen: I like this metaphor. I could keep going with how they’re alike. It makes it very real to me when it’s something as abstract as how we talk and listen.

I know in health literacy there’s been a tremendous amount of focus on the printed word. You need to write it just so, measure it just so, and all those rules. How do those rules apply? What’s the difference with how we talk and how we listen?

Don: I want to begin by saying I have a tremendous amount of respect and appreciation for all of the work that’s gone into improving the readability and, even more important, the usability of all of the health documents that patients and consumers need to process in order to navigate the health system and protect their own health. I’ve participated in that work as well.

Sometimes it feels to me as if we have a little bit of a blinder on in our field of health literacy. We forget just how people process a lot of the printed information they receive. They actually process it in conversation.

Helen: Let’s make this real. We’re all just listening to this podcast. Help make this more clear. How do people process written information and spoken information?

Don: One of the most tangible ways to think about it is to think about how quickly we can read and how quickly we can listen, and how much effort it takes to read and how much effort it takes to listen. The scientists have told us for several decades that we read a lot faster than we listen.

Most people can read about 300 words per minute. If you’re like John F. Kennedy and have taken a speed reading course, you can perhaps read 1,000 words a minute or more. Most people can only speak at 125 or 150 words per minute.

Helen: That’s a big difference.

Don: That is a big difference. That means when we are listening, we are actually receiving information a lot slower than we are capable of processing it. We are capable of processing at least 300 words a minute, but when we listen we only receive 150 words per minute.

Helen: When you say “listen” do you mean really listen, or just that those words fly by and not much sinks in?

Don: I’m glad you brought that up, Helen. There is hearing, and then there is listening. When I say listening, I mean processing, understanding and going beyond the words given to try to figure out what the implications are for me. That’s where I was going when I was saying we have a lot of spare time when we’re listening because we are capable of pulling in a lot more information than we’re receiving.

What do we do with that spare time as listeners? If we use it well, we have the opportunity to make the connections, links and personal implications with the information.

To make that more concrete in terms of health information, when we are listening to somebody deliver a message to us, we have the leisure to say, “How does this apply to me? How am I going to use it? How is it going to affect my health?”

Helen: Does that mean we’re listening to what the other person is saying, but we’re kind of listening to what we’re saying inside? We almost have two conversations going on at once?

Don: We could call it two conversations I suppose, but I like to call it deep listening. Deep listening is more than just receiving the words. Deep listening is also taking those words and incorporating them, making them yours.

Helen: Can you give an example?

Don: One of the best examples I like when I talk about the idea of interactive health literacy, the term we have been using for this conversation, has to do with how people make the decision to get an H1N1 vaccination.

Helen: H1N1 is the flu we’ve been dealing with lately.

Don: That’s right. It’s been much in the news. Information out of the CDC is that given the huge amounts of publicity that H1N1 has received and the tremendous amount of material on the web and newspapers, in the end, fewer than 40% of eligible Americans actually took an H1N1 inoculation.

The question is how people made the decision to receive it or not. We all watch the evening news or “Good Morning America.” We heard all these wonderful spokespersons talking about it. Some people hear the message about the importance of H1N1 and hear it as just another government warning. They don’t necessarily apply it to their own health.

Other people listened really carefully to that message. They deeply listened to it and said, “What are the risks to my family,” for example, “if I should get H1N1? Do I really want to subject my family to those risks? What would happen in my workplace if someone got H1N1 there and I was not protected against it?”

The people who listened to that message deeply were the ones who made the connections to their own life circumstances. The people who just listened to it might have the same information, but didn’t tie it to their own circumstance. They never saw it as a decision they needed to make for themselves.

Helen: Don, if I talk about something I’ve learned, and I do this in all of my writing, always in the first paragraph and usually in the first sentence, I use the word “you” because I want the person to know it is for him or her. I’ve heard of this principle by the acronym WIIFM, “What’s in it for me?”

When I start giving messages, I always start that way. Even in these podcasts, I like to introduce that way. What’s in it for the listener to get from this? Is that a principle that you’re talking about with this deep listening?

Don: It certainly turns our receivers on when we get that what’s in it for me message right from the beginning. I sometimes use that same acronym. I say it’s one radio station that everybody likes to listen to, WIIFM.

If you can let people know, “Here’s a message which is not just coming at you for academic reasons or because the government is trying to promote yet another program. Here is information you can use that will help you in your own personal circumstances,” of course people are going to engage in that deeper listening process, going beyond the words uttered and trying to make the connections with their own situation and personal health.

Helen: Is that a strategy for those of us communicating health information to help the receiver of this message make that application in their own life?

Don: Absolutely. I like the idea of starting every opening paragraph with the word “you.” One of the ways in which written and oral language is distinguished is that oral language has a lot more of those personal pronouns.

When we speak face-to-face, we obviously use “I” and “you.” Those are the two parties in the conversation. Sometimes in writing we try to depersonalize things and use the third person more often.

Helen: With “the patient,” “the person”?

Don: “The patient,” “the person,” or “the client who is coming for counseling.” It’s that sort of thing. If we could remember that people get engaged by interpersonal interactions, we could try to make our writing a little more interpersonal. One of the ways of doing that is to use personal pronouns.

We all got our wrists slapped when we tried to use the word I in our high school essays, didn’t we? I think if we used “I” and “you” a lot more in our writing, that would simulate oral language and help people see that there is going to be something in this message for me.

Helen: You’re the expert on oral communication. I realize a lot of my questions are about the written. Let’s get into the oral. How can we, as communicators, create an environment where people really can do this deep listening and deep understanding?

Don: First of all, when we speak about environment, we can speak about physical environment.

We’ve been doing a lot of workshops lately about communication between pharmacists and customers who come into drugstores. We believe pharmacists have a tremendous amount of health information. If we could encourage more citizens to take advantage of the huge knowledgebase that exists on the corner of every Main Street in the United States, that would be a tremendous way to get across a lot of health information.

One of the problems with communicating with your pharmacist is that you’re standing in the middle of a retail environment. Very often, there is some embarrassment or desire for privacy which seems to be violated when I’m standing in between the toothpaste and deodorant.

Some pharmacists have managed to arrange a little space for consultations, even if it’s just with a bit of a barrier, a cubicle kind of arrangement where the pharmacist can go tete-a-tete with the customer. There’s no visual distraction, and you get a feeling that someone would have to be working really hard to listen in to this conversation.

That kind of environment really improves the capacity for a real health communication interaction between a pharmacist and a client. The same thing is true in the physician’s office as well. I know you have spoken and written about communicating naked.

Helen: For listeners who may not know, the article was “Communicating When Naked: My Perspective as a Patient.” What I was getting at was that feeling of vulnerability and fear, or all the ways that stand in between communication when you are scared, sick, and indeed naked, talking with someone who is all dressed up, standing up, with a voice of authority. It’s a real inequity, and it can really interfere with communication for at least a while.

Is that what you were talking about?

Don: Absolutely. What’s our number-one concern in the examination room? Trying to keep that strange little string tied in the back of our gown. It’s very hard to be even a little assertive with your physician. You might want to get a little more information out of the physician, or perhaps get the physician to think a little outside the box he or she is thinking in. It’s hard to assert yourself when you’re worrying about that string getting untied in the back of your gown.

All of that relates to the physical environment of communication that might present barriers to listening. There is also a linguistic environment which promotes listening. The linguistic environment is one, frankly, which might require a little more time, being a little less rushed so that if I have a story to tell, I can get that story out.

In the typical managed care environment that many healthcare interactions occur in, sometimes time is at a tremendous premium. That clearly is a barrier to good listening.

Helen: What can we do about it? I don’t think that time issue is going to get any better soon.

Don: There is some data I’ve looked that suggests the average consultation with a physician in the examining room is about seven minutes long. When that time can be stretched to nine minutes, there is an appreciable increase in patient satisfaction. We’re not talking about 30-minute interviews with our doctors or limiting the doctor’s capacity to see patients by any quantum amount.

A lot of times, if doctors could set aside two minutes extra for a patient and say, “This is your time to talk and my time to listen,” just those two minutes could make a huge difference in terms of patient satisfaction.

We know that patient satisfaction is also related to patient compliance. If we’re concerned about medication compliance, for example, people actually taking their meds the way they’re supposed to take their meds, two minutes extra in the consultation room might make a big difference.

Helen: You raise another point that intrigues me. You talk about listenability, but you’re also talking about silence. We don’t always need to keep chattering away, do we?

Don: Silence, for a physician or other healthcare providers trying to elicit information from a patient or customer, is one of the most powerful tools. There is a saying that nature abhors a vacuum. A conversation abhors silence.

We all have a natural inclination to want to fill that space when we’re face-to-face with somebody. We find it very uncomfortable. In fact, a pause over two seconds long is a pretty noticeable pause. If we stretch that pause out to 10 seconds…

…that’s pretty uncomfortable.

Helen: Boy, did I want to interrupt you and say something!

Don: You showed great self-control there, Helen.

Helen: It is. I hope our listeners stayed with us through that pause. It’s even hard to listen to. Was that 10 seconds?

Don: That was 10 seconds, yes. If a physician or any kind of healthcare provider is interested in eliciting information from a patient or customer, imposing those kinds of silent pauses is a very powerful tool. It’s probably even more powerful than asking direct questions. A lot of times, patients are not very well prepared to answer questions. They may answer them in very vague ways. When they’re confronted with silence, they will open up and do whatever they need to fill that silence.

Helen: I find that fascinating. Right there, you talked about time and adding a couple more minutes. It seems maybe we can get there. Maybe we can add two minutes. We can’t change the whole healthcare system, but maybe we can just be quiet for a moment or two. If that can go a long way in improving understanding, it’s really accomplishing a lot.

Don: It really can go a long way just to give people space in the conversation for them to fill and not always feel that the person who is in the position of power, namely the healthcare provider, is the one who needs to do all the talking. If we went back to our original metaphor of conversation as a stew we’re making, it invites you to decide if you want to add a little more salt or maybe a little more pepper.

Helen: I like going back to that. I know that some of your research now is focusing on older adults and communication. Could you tell us a little about that, please?

Don: We know from all of the research and testing that has been done using measures of written health literacy, the wonderful tools we have for written health literacy, that older adults often come out looking worse in terms of health literacy skills. They seem to come out very poorly in terms of the capacity to acquire and understand information.

The irony is that when we ask older adults, “How satisfied are you with your healthcare?” typically older adults say, “I’m really satisfied with my healthcare. My doctor is so smart and cares so much about me. I know that my doctor takes really good care of me. I’ll do anything my doctor tells me to do.”

When they walk out of the appointment and you ask, “What did you learn in your doctor’s office?” they say, “I really don’t know, but my doctor is smart and really cares about me. I’m satisfied with my care,” but typically come out knowing very little. One of the reasons is because their level of participation in that health encounter is so low.

Older adults have low health literacy, although they have high satisfaction.

One of the things we’re trying is a project we call Health Literacy on Wheels.

Helen: Health Literacy on Wheels. Isn’t that interesting?

Don: It’s Health Literacy on Wheels because we’re delivering our training via community members who have tremendous trust and access to older adults, Meals on Wheels volunteers.

Helen: I see the connection.

Don: Meals on Wheels volunteers are welcomed visitors in the homes of many older adults every day, bringing nutrition. In the course of that interaction, they know their clients really well. They know their clients’ health status well. They’re trusted and welcomed. We feel if they can bring a little training in health literacy along with them, that’s a very teachable situation.

The instruction in health literacy that our Meals on Wheels volunteers bring with them is how to ask questions when you’re in the doctor’s, or any health provider’s, office, how to be a little more participative so not only will they feel satisfied, which they already do, but they will also be able to say, “I did learn something. I had a question I needed the answer to, and I had my question answered.”

Helen: That’s a very interesting way of paring that together. I sense a theme here. You’re still bringing together food and communication.

Don: That’s true. We say the way to a man or woman’s heart is through food. That’s also the way to health literacy.

Helen: What a nice way to do it. Before we leave, if we could add a special spice or ingredient to our communication spice shelf, what would you like us to add?

Don: I am an advocate for eating fresh foods, so I think it’s important for any healthcare provider to be able to look at each patient or client who walks through the door as a new person, as an individual.

It’s very easy when you see 12 or 20 cases a day to not be able to engage in that active listening process and go through the health interview and counseling as if it were a recipe and each dish gets prepared the same way.

I think it’s important that those healthcare providers who themselves exhibit the greatest health literacy, and who encourage the most health literacy among their clients, don’t go through their interviews as if it were a recipe. Instead, they should look at the fresh ingredients in front of them. What makes this person unique, and what is this person bringing to the interaction? Talk to that person one-on-one like an individual human being.

That ability to take the ingredients as they come to you is the way I would say we prepare a successful dish of health information.

Helen: Thank you. I, for one, think I will be thinking about you the next time I’m in the kitchen. I will be thinking about you, health literacy, and how I put all the different pieces together.

Thank you so much for sharing that with the listeners of Health Literacy Out Loud.

Don: It’s my pleasure.

Helen: As we just heard, there’s a lot to health literacy. It’s not always easy to put all the different pieces together in just the right way to make sure the message is listenable, understandable and actionable.

For help clearly communicating your health message, please visit my Health Literacy website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly enewsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loud comes out every few weeks. If you subscribe, you’ll hear them all. You can learn more about each podcast along with references we mention and links by going towww.HealthLiteracyOutLoud.com.

Did you like this podcast? Did you learn something new? If so, tell your colleagues and tell your friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

Stacy Robison MPH, CHES

For the past three years, Stacy has been writing and designing health content for Quick Guide to Healthy Living — part of the award-winning healthfinder.gov Web site from the U.S. Office of Disease Prevention and Health Promotion. This site has been tested and developed with close to 800 Web users, most of whom have limited health literacy skills.

In this podcast, Stacy Robison talks with Helen Osborne about:

• How people with limited literacy skills, health literacy skills, or limited time use online health information.
• What is different when communicating about wellness and prevention (health promotion) v. communicating about diagnosis and treatment (health care).
• Ways to design health content so that Web users can, and will, take action.

More ways to learn:

• CommunicateHealth, at www.communicatehealth.com. You can email Stacy Robison at stacy@communicatehealth.com
• Health Literacy Online, from ODPHP (Office of Disease Prevention and Health Promotion, available at http://www.health.gov/healthliteracyonline
• Quick Guide to Healthy Living, at www.healthfinder.gov/prevention.
• Health Literacy Out Loud Podcast #19: “Communicating Clearly on the Web.” An audio interview with Ginny Redish, at http://www.healthliteracyoutloud.com/2009/08/03/hlol-19-communicating-clearly-on-the-web/
• “Health Literacy Online: Building an Easy-To-Use Health Information Web Site,” a Health Literacy Month story posted October 20, 2009. At http://healthliteracymonth.org/hlm_article.asp?PageID=9167
• Osborne, H. “In other words…What Makes Web Sites Patient-Friendly? On Call magazine, July 2005. At http://healthliteracy.com/article.asp?PageID=3803

Click here to read a transcript of this episode:

Health Literacy Out Loud Podcast #34: Creating Usable, Useful Health Websites for Readers at All Levels.

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some pretty amazing people. You will hear what health literacy is, why it matters and ways we all could help improve a health understanding.

Today I’m talking with Stacy Robison who is co-founder of CommunicateHealth, a consulting company based in Northampton, Massachusetts. As a certified health educator, Stacy uses plain language to meet the learning needs of audiences with limited health literacy skills.

For the past three years, Stacy has been writing and designing health content for the Quick Guide to Healthy Living, which is part of the award winning www.Healthfinder.gov website from the US Office of Disease Prevention and Health Promotion. This site has been tested and developed with close to 800 web users, most of whom have limited health literacy skills.

Welcome, Stacy.

Stacy: Thanks so much for having me.

Helen: Right from the top, I have this question. There are websites for people with limited literacy or health literacy skills. Is that really the population that’s looking for health information online?

Stacy: That’s a great question, Helen. That comes up a lot. I call this a catch-22. It’s one of those situations where you hear a lot of people make the argument that people with limited literacy skills or limited experience on the web aren’t going online for health information. Therefore, there’s no point in even tailoring your web content for this audience.

Helen: I’ve heard that for a while. Can you explain that because we have an international audience? When you say catch-22, are you talking about that book from long ago?

Stacy: I am sort of talking about that book, but what I mean is that it’s a self-fulfilling prophecy. It’s this puzzle that we can’t get out of because we say there is no point in creating this web content for people with limited literacy skills.

At the same time, if we don’t have any easy to understand or easy to use health information online, then folks with limited literacy skills aren’t going to start using the internet to search for health information.

Helen: It’s really this puzzle there. Are people using it? Where are they going? How are they finding it? What are doing about that?

Stacy: One of the issues is that adults with limited literacy skills usually have very little training and experience searching the web. They struggle with reading the content on the page, but they also struggle with managing all the information as they move through a website. There are a lot of different pieces there that affect how these users are interacting with the information online.

This is one of the things that I’ve really enjoyed about working on this Healthfinder project for the Office of Disease Prevention and Health promotion at HHS. They were committed right from the start to building a health information website that’s easy to use and understand, especially for people with limited health literacy skills.

Helen: Are you talking about limited health literacy skills or limited literacy skills? Are you talking about one distinct population, or is there a difference there?

Stacy: They’re related, but they mean something a little bit different. One thing that we did as we were building this Quick Guide to Healthy Living as a part of this Healthfinder website is we used a series of criteria when we recruited the people we wanted to test with, knowing that we wanted to reach these adults with limited health literacy skills.

Using what we know about the prevalence and the populations with limited health literacy skills, we came up with three general criteria. We were looking for people who had a high school education or below, people whose income was below the poverty threshold, and then we looked for people who had not searched for health information on the internet in the past year.

By using those three questions, it was sort of a proxy measure. We were able to feel pretty confident that we were getting people who had limited literacy skills, but because we’re dealing specifically with health information and searching for health information online, we’re also talking about limited health literacy skills.

Helen: Those criteria are really interesting. I haven’t heard anyone frame it quite that way.

You were very clear about who your audience was when you were testing these materials. When you were thinking of those criteria, is that how you were writing it?

Stacy: Yes, exactly. That was a little bit of a workaround because right now a lot of the assessments and measures that we have for health literacy skills are a little bit more related to a healthcare setting, maybe when you’re at the doctor’s office or things like that. They’re also a little bit cumbersome to administer when we’re trying to recruit a large number participants for some of these usability studies.

We worked around that by coming up with these three criteria, and we’re feeling pretty confident that we got the people that we were targeting.

Helen: Now I have a much better sense of your audience. Thank you for that. Can you talk a little bit about the content that’s on your website?

I spent quite a while on there this morning. I am so impressed by what was there. I was clicking here, clicking there, finding a survey, finding more information, and finding something quick and easy. There is a lot there. Can you introduce us to that website in a quick way? If you share the URL, people can be looking at that too.

Stacy: The website is part of www.Healthfinder.gov. The specific tool that we build for users with limited literacy skills is called the Quick Guide to Healthy Living, and right now we have close to 60 different topics in the Quick Guide.

One of the things that’s unique about it is it has a focus on prevention and wellness. This is something that’s really critical when it comes to online health information. If you think about the last time you searched for health information on the internet, a lot of times it’s to look up a specific symptom or diagnosis.

The other day my finger started going numb when I was typing at work, and the first thing I did was go to Google. I think this is true for most people.

Helen: We go online when we have a problem, but wellness is the opposite of having a problem.

Stacy: Exactly, and that’s one of the tricky parts.

In this case, with health promotion and disease prevention information, the users aren’t, as we say, motivated. You don’t always have the motivation to look for information on how often to get your cholesterol checked or how to prevent bone loss as you grow older. There’s an inherent challenge in presenting health promotion content on the web.

Helen: I think that’s a challenge that people in public health and all kinds of settings face all the time. How do you communicate wellness and prevention messages? That’s before there’s that great sense of urgency or pain.

Stacy: One of the main things is that you really want to involve web users in the health content in a way that motivates them. One way that we did this in the Quick Guide is by really looking at people’s self-efficacy. By self-efficacy, I mean a person’s belief that they can be successful in changing their behavior.

Helen: What would that be for cholesterol?

Stacy: When it comes to self-efficacy for something like cholesterol, it has to be helping people feel like they can actually do something. They can make positive changes. They can lower their cholesterol if it’s high. They can take control.

What we did for all of the health topics in the Quick Guide is we included a start-today box.

Helen: Start today?

Stacy: Yes. It has three easy action steps that people can take. These are really simple things like drinking water with lunch instead of soda or testing your smoke detector in your home. They are things that people can do that day.

By doing that, we help increase people’s self-efficacy because the issue doesn’t become so overwhelming. “I need to lower my cholesterol, lose all this weight and radically change all this in my life.” It becomes these really simple steps that people can do right away.

Helen: They’re steps that really go toward that goal. As I was clicking around, I was looking at back pain. I have to watch that because I’m typing all the time.

It goes from simple things you can be doing to just stretch or have good posture. Then you could be finding much more complicated information there as well.

Stacy: Exactly. This is one of the things we found as we developed the website. As you mentioned, we tested it with close to 800 users. We used a real iterative process, meaning we started with early drafts of the website. We tested them with users. We applied what we learned. We went back to the drawing board, fixed it some more and tested it again.

Through this process, one of the things we learned was that people were really looking for just the basics. They really wanted those essential pieces of information, and they wanted to know strategies and actions they could take. We really focused on that. Then we give people the option to drill down further into the content if they want to.

We focus on that basic information you would need to know in order to take action. That really came from all of our testing with users.

Helen: That’s really interesting, but our listeners are probably not going to be developing a website as big, comprehensive and wonderful as yours. They still might have that wellness prevention message. What strategies and actions can they take? What can people take from what you’ve learned after all this testing?

Stacy: There was a lot we learned about communicating the wellness and prevention messages, and there was a lot that we learned about how to write and design a website so that it’s easier to use for people with limited literacy skills.

Over the years of testing, we observed a lot of characteristics of some of these users with limited literacy skills that affect how they use a website.

Before I go into those, I really want to preface that by saying that these characteristics are things that all web users do. I do these things when I’m online too. I sometimes miss links or maybe I mistakenly click. I might not focus on all of the content.

There are a lot of behaviors that we all do, but I think the degree to which we saw them in some of the users with limited literacy skills was a lot greater.

One of the things that we really observed with this user group was about where they were focusing their attention on the screen, and they were looking almost entirely at the middle of the page. They weren’t looking to the left or the right. They were hardly ever scrolling down. What they were really seeing was right there in the center of the screen.

Helen: Do you mean not scrolling down as in not continuing a few paragraphs later?

Stacy: Yes. Very rarely were these users actually using the scroll function. They would get to a page and they would focus on what was right there in the middle and maybe click on a link or two. If there was a lot of content down further in the screen that you couldn’t see, a lot of users weren’t ever seeing that.

A takeaway from that is to keep your most important messages right there in the middle of the screen. We call that “above the fold,” and the fold just means that bottom line of your screen. You want to keep your most important messages right there in the center so users don’t have to scroll down.

Helen: What else can we take from what you’ve learned?

Stacy: We try to use what we call stand-alone sections of text on the website, and that’s because we found that a lot of users with limited literacy skills had a hard time scanning the whole site. Instead of scanning all the text on a page, they would just skip around or skip over whole chunks of text. They might just land in the middle of the paragraph or somewhere further down the page.

By creating a lot of stand-alone subheadings and small sections of text, it would let them move around on the page and still get a full piece of information.

Helen: Even though you said people don’t particularly look to the left or  right, can you put these other sections to the left or right?

Stacy: You still really want to keep them in the center or the screen. The thing about content on the right side of the screen is that a lot of people mistake it for an advertisement, so they have a tendency to ignore it.

I do this a lot when I’m on a website. I block out a lot of what I see on the right-hand margin because I’m just so used to seeing advertisements over there. A lot of people do that. That’s one reason to keep it in the center of the screen.

Another interesting thing that we learned was about really dense chunks of text on a website. We found that people would skip over those right away.

In some of our testing, we actually found that users would skip over a paragraph when there were more than three lines of text. That’s not sentences. That’s actually lines of text.

Helen: They would skip over more than three lines?

Stacy: Yes. They would just say, “Okay. This looks too overwhelming and too difficult. I’m going to just sort of move on and look for some bullets or links.” That’s why bullets are really important on a website. You should also break your text up into small groups, lists and anything to avoid those dense paragraphs.

Helen: Your definition of dense is different from what other people might be thinking.

Stacy: Yes. I’ll say that this is really hard to achieve. A lot of what we learned is really hard to put into practice on everybody’s website. Obviously you’re going to have to put some content below the fold or on the left or right. Sometimes we do need to have more than three lines of text.

These are just some goals to think about. If you can get away from that whenever possible, I think you’re going to keep people on your website a little bit longer, especially these users with limited literacy skills. They’re going to be able to navigate the content a little bit better.

Helen: Stacy, like you, I do a lot of plain-language writing. I do it for other people and organizations. What I find is that one of the hardest parts for them is to let go of content.

You’ve done a remarkable job when you can talk about lower back pain in two or three lines. How do you work with others to let go of some of that content that they want to say?

Stacy: That’s a huge challenge and one that we face a lot in managing this website because it’s a federal government website. All the information we have on the website has to be cleared by subject matter experts in the Department of Health and Human Services. We all know that sometimes these folks have some struggles, as you said, letting go of the words.

I think that’s where it’s really great, and I would really commend the Office of Disease Prevention and Health Promotion on this. You really have to be an advocate for those limited literacy users and audiences that you’re trying to reach.

When you can keep coming back with that, keep making a case and letting people know that you’re conveying the same information, you’re just doing it in fewer words. I think you really have to be determined and you have to be an advocate.

That comes across overall in the writing style in the Quick Guide. It’s really familiar and simple language. Word choice is an important part of that.

Helen: I get the sense that it’s also respectful. You’re not talking down to me. I might go there to learn about whatever condition I want to be learning about. You’ve done a remarkable job, and I really encourage podcast listeners to go to the site and see how you’ve put these principles in place.

I know you’ve done this website for this specific audience of people with limited literacy or limited health literacy skills. Are you finding that other people are going to the site too, or is that just for that distinct group and other users go elsewhere?

Stacy: No. The site is really popular. You deal with this a lot, Helen, and I know a lot of people do in the health literacy world. There’s that misconception and misperception that by writing content for folks with limited literacy skills and limited health literacy skills, you’re somehow dumbing it down or not making it relevant or interesting to people who may have stronger literacy skills.

That’s just not the case, especially with online health information. It’s different than print information. This is something I think that Ginny Redish has really done well.

Helen: Ginny Redish is one of our podcasts. We’re put a link there. Her book is about letting go of the words. She’s masterful at making websites that work.

Stacy: She is tremendous at it. I think it’s the idea that people go to websites to answer a question or do a task. A lot of times they’re multitasking. Short, simple, succinct content benefits all of us and certainly is the most appropriate way to write for the web.

When we talk about what we did with the Quick Guide to Healthy Living, a lot of times we say it’s for people with limited literacy skills and people with limited time. I think that’s really key because, frankly, that’s most of us.

Helen: That is. Thank you so much for sharing all that.

I have one more question before we go. You talked about how you frame your message in terms of actions people can take today. Looking ahead, what actions would you like those of us communicating health messages to take tomorrow?

Stacy: What I really love about working with health information on the web is working with web designers, and I love people who work in the world of usability. In our world of health literacy, our measures are all about the individual, their skill level and literacy skills, and how well they can understand things.

In the web world, it’s completely different. You design a website. You test it with users, and then you see where users are getting stuck when they’re on your website. Can they find the information? Do they know how to click on the button?

If they don’t find what they’re looking for or they’re not able to do the task, as the web designer and the web writer, you go back to the drawing board and fix it. It’s never a fault of the user. It’s the job of the web writers and designers to make the website clear and easy to use.

I love that. I think that’s sort of a reframing of health literacy and clear communication. I would love to see the field move a little bit more in the direction of taking that burden off of the individual and putting it on us as communicators, writers and designers.

If people don’t understand and they’re not finding the information, then we need to go back to the drawing board and do our jobs better.

Helen: Stacy, thank you. What a wonderful way of wording concepts I so whole-heartedly agree with. It’s not about what other people can’t do. It really is about what we can and will do. Thank you so much for sharing your experiences and lessons learned with all of us.

Stacy: Thank you for having me. This was really fun.

Helen: I learned a lot from Stacy Robison and hope you did too. Health literacy isn’t always easy, and we talked about that.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, “What’s New in Health Literacy Consulting.”

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can go to the website and learn more information about each episode along with important links at www.HealthLiteracyOutLoud.com.

Did you like this podcast? Did you learn something new? I hope so. If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne. ###

Lee Aase

When not working at his “day job,” Lee is the Chancellor of Social Media University Global (SMUG) — a free online resource he created to provide practical, hands-on training in social media for lifelong learners. In all situations, Lee makes it his personal mission is to help people get comfortable with social media.

In this podcast, Lee Aase talks with Helen Osborne about:

• “Social media pyramid” of: Twitter and micro-blogs; Facebook and other networking sites; Web audio (podcasts) and video (YouTube); Blogs.
• How newcomers can get started and why they should.
• Examples of using social media to communicate about health.

Ways to learn more:

• You can email Lee Aase directly at Aase.lee@mayo.edu
• Mayo Clinic News Blog at http://newsblog.mayoclinic.org/
• Sharing Mayo Clinic, http://sharing.mayoclinic.org/
• SMUG at http://social-media-university-global.org
• Osborne, H. “In Other Words…Using Text Messages to Improve Medication Adherence,” http://healthliteracy.com/article.asp?PageID=7987
• Follow Lee and Helen on www.Twitter.com : @LeeAase, @HelenOsborne, and @HealthLitMonth.

Michele Berman, MD

In this podcast, she talks with Helen Osborne about ways to make the most of teachable moments and use celebrity news to teach about health.

Topics include:

• How “teachable moments” provide context for new learning
• Why and how this website connects celebrity with health
• Lessons learned that all health communicators can apply

More Ways to Learn:

• CelebrityDiagnosis.com, http://celebritydiagnosis.com/
• ResoundingHealth.com, http://www.resoundinghealth.com/home/index
• Lawson, P. J. & Flocke, S. A. “Teachable moments for health behavior change: a concept analysis” (2009). Patient Educ Couns 76:25-30. http://cli.gs/dd2DmQ

Linda Neuhauser, DrPH

In this podcast, she talks with Helen Osborne about participatory and user-centered approaches to health communication.

Topics include:

• Communication challenges for both givers and receivers of information
• A structured approach to participatory, user-centered design
• Overcoming objections of limited time, money, or other resources

More Ways to Learn:

• Neuhauser L, Rothschild R, Graham C, et al. “Participatory Design of Mass Health Communication in Three Languages for Seniors and People With Disabilities on Medicaid,” American Journal of Public Health. 2009;99 (12).
• Neuhauser L, Constantine WI, Constantine NA, et al. “Promoting Prenatal and Early Childhood Health: Evaluation of a Statewide Materials-based intervention for Parents. American Journal of Public Health. 2007;97(10):1813-1819.
• Health Literacy Out Loud Podcast #13: Len & Ceci Doak Discuss Health Literacy’s Past, Present, and Future (includes a discussion of the SAM materials assessment tool), Available at http://www.healthliteracyoutloud.com/2009/03/23/hlol-13-len-ceci-doak-discuss-health-literacy’s-past-present-and-future/

Click here for a transcript of this episode:

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of health literacy Consulting, Founder of Health Literacy Month and your host of Health Literacy Out Loud. In these Podcasts, you get to listen in on my conversations with some pretty amazing people. You will hear what health literacy is, why it matters and ways we all can help improve health understanding.

Today, I’m talking with Linda Neuhauser who is Clinical Professor of Community Health and Human Development at the University of California, Berkeley School of Public Health. Linda’s work focuses on translating research into improved health interventions and mass communication. She is especially interested in participatory approaches that match the literacy, linguistic and cultural needs of diverse audiences. Linda knows what it is like to not understand. She is a former U.S. Health Officer in Western and Central Africa. Sometimes her only tools of communication were pictures hand signals and very simple words. Welcome, Linda.

Linda Neuhauser: Thanks a lot, Helen. I’m delighted to be here today. And I say hello to all the listeners.

Helen Osborne: We’re all happy to be learning from you. I’ve actually heard you in person, too. I was so wowed about your presentation about participatory design that I wanted to share this with the great big wide world of podcast listeners. You have a lot to teach us. My first question to you is — you’ve been on both sides of communication challenges. What’s harder — being the giver of information or the receiver of information?

Linda Neuhauser: Well, I think the hardest thing is to understand that both are so important. Traditionally, the givers of information — often people like ourselves [quote “experts”]–have not paid enough attention to what’s going on with the receivers of communication. One of my favorite quotes is by George Bernard Shaw, which says, “The problem with communication is the notion that it has occurred.” So we often live in a bubble thinking that we have communicated all with our best intensions, but often the message and the motivation does not come through on the other end.

Helen Osborne: I’ve been in that situation many times. We think our job is done because we came up with this real gem that we shared with people — we said it, or we wrote it. Is that the problem — people think their job is done at that point?

Linda Neuhauser: Exactly. Part of it is the traditional model of communication we have used. Although it is happily changing now, in the traditional model — experts take scientifically-supported information and send it out to the intended receivers — typically without the participation of those receivers in helping to design it and in seeing whether it worked for them.

The advertising folks have always been many steps ahead of the public health communication people in understanding they need to go to the end-users first and find out what’s going on with them.

Helen Osborne: From the receivers’ end, what’s its like when people get these messages — be they public health or scientific or even marketing messages — and don’t quite understand? What’s that like?

Linda Neuhauser: Well, I think we have all been in those situations. For example, think about a situation in which you’ve been to see your doctor and you’ve gotten news that you haven’t been especially pleased about. You haven’t really understood what’s going on, what you need to do, and what the path ahead is going to be like for you. You’re anxious, you’re confused, and you may be angry and upset with the communication. Essentially, you may leave feeling that whatever just happened in there was not something successful for you.

Helen Osborne: With all the variables that you bring as the receiver — you’re overwhelmed, you’re scared, you’re preoccupied. And you may or may not have literacy or learning challenges along the way, too.

Linda Neuhauser: Exactly. When you add in literacy or learning challenger, linguistic barriers, or cultural differences, then the challenges can be overwhelmingly big.

Helen Osborne: So, we looked at both sides. Thank you for making that so clear and vivid about the problems in both the giver end and the receiver end of the communication. What are we going to do about it?

Linda Neuhauser: Helen, I was just thinking about another saying that I really like. I don’t remember the author, but the saying goes something like this, “I didn’t understand what you said because who you are is thundering in my ears.” I really like that because it shows that often communication is hampered by power imbalances — patients and providers, teachers and students, sometimes media and the public or politicians and the public. Think of the many kinds of power imbalances where the group that is less in power is struggling to understand and gain control over a situation that’s important for them.

Helen Osborne: And it’s often that the person who has less control is the very person who has to take action.

Linda Neuhauser: Exactly.

Helen Osborne: Be it to do some procedure that may be hard, uncomfortable, unpleasant, cost a lot of money, or be inconvenient. And that’s what we’re asking the person to do in this imbalance that I really like how you share that.

But let’s not leave it at this hard place. I know that your special focus is on user-centered design. I think you also call it participatory-centered design. Can you tell us a little bit about that as a tool to improve the both sides of the conversations?

Linda Neuhauser: Yes. Maybe I’ll start with a story about how I got interested in this. And it really was from own experience of struggling as a receiver and giver of information when I was living in Western and Central Africa — working as a health officer for the U.S. Department of State. Often, I would be in situations where I did not understand the language that was being spoken, the cultural norms, the gestures–any kind of sign or signal from the group. It was extremely hard for me to understand.

And I had a very large challenge. In one case, I was setting up a national vaccination program in a country that did not have one yet. I was keenly aware of the importance of the work I was doing and the challenges I faced by not really understanding what was going on. I had that dual experience of being the giver and the receiver.

I found that the successful path forward was to really engage with the intended users of this vaccination system and have them identify the objectives, the challenges that might be coming up, how to overcome those barriers, how to keep something like this going, and how to evaluate it. By being in the position of both the person with a charge to do and a person on the low control end of communication, I really came to understand the power of doing things in a participatory way. That’s something that I have now made central to all of my work.

Helen Osborne: Can you describe for us what you mean by this participatory way of doing your work with communication?

Linda Neuhauser: Participatory-design or user-centered designer –there are a number of terms for this structured approach. These are types of formative research methods that involve consumer and professional audiences in developing, implementing, and evaluating communication.

Helen Osborne: I’m looking at your paper here and we will certainly have a link to it on our website. The paper I’m looking at just recently came out: “Participatory design of mass health communication in three languages for seniors and people with disabilities and Medicaid.” It’s quite the process. You even have a timeline showing how you’re engaging all parties. Can you share some of the key steps in this process?

Linda Neuhauser: Yes, and just to roll back to the goal of this project. It was to serve one of the most vulnerable groups that we have in society — seniors and people with disabilities who are on Medicaid. In California, we have somewhere between 600,000 and 900,000 people in this category at any one time. And of course, we have about 6 million people who are on Medicaid.

These groups have many communication challenges. Older people — because with time people tend to lose cognitive capacity and older people typically have less education than younger people. Many may not have graduated high school, et cetera, and their health literacy levels tend to be low, as many of us know. People with disabilities can have a number of challenges, from cognitive challenges to challenges of seeing or hearing or mobility to access information.

At the beginning of this project, we started out with the goal of involving our intended users as co-designers to meet our goal of developing a guidebook that could be sent out widely to these people. And we had a number of different approaches that we used. You mentioned the name of the paper that you’ll put it on the Website for anybody who is listening who may be interested in looking at some of the details of how that process worked. I’ll briefly go over that.

Our first step is to identify the audiences and stakeholders. That may seem simple but what I have found is that often when we begin a project, we think of just the end users. In this case, seniors and people with disabilities on Medicaid, but many other stakeholders are involved in the whole communication process. The health and social services providers with whom these people interface, the media, state policymakers, local advocacy groups, and others. So, at the beginning of the process, we identified the major types of groups and we brought together representatives in an advisory group that stayed with us throughout the whole time of developing this guidebook. That was an extremely useful process to go through. We began with doing key informant interviews with all the representatives to get a sense of some of the challenges from their point of view that would be faced in the project.

Then, once we had a number of issues that we wanted to consider– information for the guidebook, et cetera — we did a draft, which we call a prototype. We had focus groups look at that information. We did more key informant interviews with people from the stakeholder groups — both the consumers and the professionals. We did usability testing, which is a one-on-one process, where you sit with someone in an independent stakeholder group and you watch as they go through a document. You get their feedback about what works for them, what doesn’t work them, recommendations they have to improve it. Then, after doing a number of these kinds of tests, we would do another draft and do readability testing using computerized software. We also found it useful to do the SAM test (Suitability Assessment of Materials) because that brings in a number of cultural issues.

Helen Osborne: What I’m hearing from you is that this is a very complex process. You said it sounds simple, but I’m hearing all the many layers to it. There is identifying your audience and your stakeholders, interviewing people about their challenges, drafting and creating a prototype of the material, assessing that with users, readability testing and SAM (Suitability Assessment of Materials — which is a wonderful checklist by Doak, Doak, and Root). I actually interviewed the Doaks for a podcast about this. So it’s a wonderfully rich, multi-layered process that you go through. Is that the end? Is there an end point? Is it like climbing a flight of stairs and once you get to the top, you’re there?  Or is there more to it?

Linda Neuhauser: No, there is more, and I’ll mention a few other processes which are laid out in that paper you mentioned. One of the important ones after going through all of these phases that I just mentioned is to consider doing linguistic adaptation. I’m not talking about translation, but adaptation, which is again a participatory process with the intended users in their various linguistic groups. For example, let’s say we’re doing something in Spanish — you would make sure you have a cross-section of users who speak different kinds of Spanish. Maybe Spanish from Puerto Rico or from Mexico or from El Salvador or Argentina, making sure they’re all represented so the ultimate adaptation is one that works across linguistic groups.

And then, of course, there is the concurrent process of planning the implementation. Plan that with the users and the various stakeholders so that by the time you finish developing the communication, you have a really good way of getting it out to them. And, then, an evaluation. As you asked Helen, no – there is no top of the stairs here.

Helen Osborne: It’s more like one of those stairmaster machines you see when you workout that just keep going and going and going?

Linda Neuhauser: Well, it’s more like you take the stairs to one level and when you reach the top of that level –where you have developed a communication that looks solid – then you’ve gone through enough iterations of the cycle. I mentioned having enough prototypes so stakeholders are happy with it. Then you get it out. Then you can breathe a sigh of relief and expect positive results, which you’ll usually see from the evaluation. But you also note if something should be revised. It’s a constant circular process–getting inputs and doing more revisions. But the staircases after that tend to be short ones.

Helen Osborne: Oh, so it’s not so hard after you’ve been through this. How long did this process take you for the project that you wrote about?

Linda Neuhauser: This process took about 18 months, and 12 months of that being really intensive work.

Helen Osborne: I kind of gasp at that. I work on a lot of projects as a plain language writer. Sometimes we have a month or six months, or a week to work on a project. What do you suggest for those of us who are under tight timeframes?

Linda Neuhauser: Well, I would say that this is not a recipe. I’m talking about a very complex project that was done in English, Spanish and Chinese — all those linguistic adaptations had to be done. We had very complex sub-categories of seniors and people with disabilities and various stakeholders. We had state regulations to meet, federal regulations to meet, and so on. So this is much more complicated than many of the things that we typically do {at my center). That’s why I picked it out for a paper as it shows something very complex.

Helen Osborne: Can you help make this more real. What lessons can we take from what you learned and apply to our day-to-day work?

Linda Neuhauser: I would say the central lesson is to be sure at the outset. to identify your stakeholders, especially those end-users. And work really closely with them from the very beginning. It could be that you’re doing something fairly simple. Maybe you have a short brochure and it’s a couple of pages. Well, gather some of those stakeholders and have them look at what’s been drafted. Perhaps you could do something in a week or two and get some evaluation from them and it would be good. But they have to be involved. Listen very closely to their critiques and take them to heart. And if they say, “Look, you need to go back to square one,” then do go back to square one. And like I say, take the long view of time and cost because doing something wrong in the beginning takes a lot more time than doing it right.

Helen Osborne: I was wondering about the costs involved in this. We need to make a compelling case why it’s worth all the time and the money. People may be at deadline, or don’t have any money for this. What would you recommend we say in response to those concerns?

Linda Neuhauser: I’ve had this experience very often working with state clients and others at the federal level in other countries. At the outset, people tend to react like you just did Helen, “Well, that’s going to take a long time or cost more money than we had intended.” I think it’s important to point out that the history of health communication is one that has a lot of disappointments. When you look at the outcomes of evaluations — oh, say the past 30 or 40 years — you see a lot of things that have not worked.

In some cases it has truly misled the users. Sometimes these are life and death situations when we are talking about health information. So, I would take the view that unless something is done carefully at the beginning, it’s likely to fail. That has certainly been my experience. Things that I have been involved in that have not involved the users in a really good process of participatory design — whether it be for a couple of weeks or year and a half — those things have tended to fail, tended not to be used, have ended up in shelves or in the trash bin or in the parking lot outside the clinic.

And those things that have been developed with the users have tended to be successful, have helped people really take control over their health, make good decisions. Ultimately, that’s what we are looking for — effectiveness, success, outcomes.

Helen Osborne: And in your research have you found that?

Linda Neuhauser: Definitely I have found that. I did a very interesting project in which I’m still involved — to help develop a kit of educational materials for new parents. This is given out to 500,000 new parent families in California every year. A lot of participatory design processes were used in developing this multimedia kit, with a lot of attention to health literacy issues, readability, cultural and linguistic factors, and others.

The longitudinal three-year evaluation showed outstanding results for a very low cost kit. This kit cost something like a $12 to $17 per family served. And it can be used from the time of pregnancy until the child is five years old. When you think about spending say $12 or so on a family and getting really incredible outcomes, that’s something to stand up and listen to.

I have seen many educational materials for parents that have failed miserably. People have spent years on them, sent them out, with very weak effects. If I were a funder, that’s what I would be particularly interested in — what’s the best investment for the limited resources I have? I say the best investment for anyone who has funds for communication programs in health is to focus on user-centered design and constant evaluation and revision. That’s a key to success. As I said, the advertising agencies know this — they’ve been doing it for a long time and they have to show outcomes or they’re out of business.

Helen Osborne: Are there ways to learn how to do this? You are a researcher — this is your expertise. Are there ways that people can learn how to do some of these processes?

Linda Neuhauser: Yes, a couple of suggestions. One would be to read some of the literature. There are a number of really useful papers out there. In the paper that you mentioned, Helen, about this Medicaid project, there is a fairly extensive literature review

that one could look at. And there is also reference to a paper that I wrote about the development of this parenting kit in California and some of the participatory processes there and also the outcomes.

I think starting with literature is a good place. Another suggestion would be to find someone who has had experience in doing participatory design and link up with them somehow. It’s becoming so important as the field of health communication and health literacy advances that I don’t think it’s too difficult to find people in your area who have been doing this kind of work. Maybe look at the universities. I often find that advertising and social marketing groups tend to be skilled at this too. Some of the private sector groups can be helpful.

Helen Osborne: That really is one of the reasons I’m so intrigued with health literacy — it’s so much bigger than any person or profession or program. You’re suggesting we go outside our traditional comfort zones — whatever that is — and start working perhaps with advertising or other profession. That’s really interesting — how we can pair up, learn from each other, and make the world a more understandable place.

Linda Neuhauser: Yes and it works two ways too. As I work with advertising agencies and other kinds of private industry firms, I realize that they’re very interested in learning more about health literacy and health disparities. This is something that many of them haven’t thought a lot about. They think about going to the user groups that they intend to influence, but they often have a weak understanding of health literacy issues.

So I think many people listening to this podcast could find a place for their skills. To those of you listening to this podcast: if you’re skilled in the area of health literacy and user design and so forth, go to some of your local advertising agencies who may be working on health issues and offer your services there. I think you’ll find that’s very synergistic combination.

Helen Osborne: I love that. And that gets back to where we started this conversation — talking about the two sides of communication, with the giver, receiver, and the imbalances that can happen between. If we call up our local advertising company, we are certainly not in a position of power because we feel so new. But there is so much that we can soak up and learn about how to communicate and how to test. There is so much that they might want to know, too, about key messages in health and public health. That very beautifully puts it altogether.

In all your work you have done — and you’ve been doing this for quite a while — what were some of the big surprises or ah-ha’s that you found along the way?

Linda Neuhauser: I hesitate a little bit about the using a word “surprise.” I guess, the first time something happens you’re surprised and there is an ah-ha moment. And then, as you move along, you come to expect it. So some of the first things that really surprised me was when I was working in Africa and understanding that once you moved away from the so-called “experts” and focused on users as your co-pilots that you really captured this amazing power and wisdom that can guide communication.

That truly is an ah-ha moment. And I must say that every time I participate in a focus group or usability test or navigation test for a Website — I’m constantly amazed at the perceptiveness that the participants have about what they are experiencing. Often, it was a communication issue that I or my colleagues did not think about when developing the draft.

So I like to go with an open mind to any of these experiences and focus groups, usability tests, interviews, or being in an advisory meeting. I like to go in with the expectation that I will come out with lot of new knowledge that I didn’t go in with. So I’m not surprised with that because I expect it. And that’s what I think is the real fun of this. Lots of people may think , “Well, there are all these things you have to do.” You have to keep doing it until it works — I say that’s the fun of it. You keep learning things everyday. You don’t have to think that you are the fountain of knowledge. But you’re soaking it up from all the people you come in contact with. You can apply all this new learning the in next time you do something. So if something takes a while to do, I just think it adds to the fun.

Helen Osborne: Oh, thank you. What a beautiful way to frame that. We’re always learning. And then we can apply it, try it out, learn from others, and keep going and keep growing.

I want to thank you so much for sharing this wealth of wisdom with us about participatory design. And I also invite you to share some resources to put on the Health Literacy Out Loud webpage. We will also include links to your articles.

Linda Neuhauser: Helen, I’d be glad to. It was a pleasure to talk to you today. To anyone who maybe listening — I wish all of you well in advancing this whole area of participatory design in health literacy. I’ll be glad to offer a few resources for the Webpage.

Helen Osborne: I learned a lot from Dr. Neuhauser and hope you did too. But health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.healthliteracy.com. And while you are there, you’re welcome to signup for my free e-news letter,  “What’s New in Health Literacy Consulting.”

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find more information about each episode, such as the resources we talked about today, on the Health Literacy Out Loud website, www.healthliteracyoutloud.com.

Did you learn something new from this podcast? Are you intrigued to put this into your day-to-day practice? Hope so. I am. Tell your colleagues, tell your friends together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

David Walsh

Walsh recently helped develop a business case for Health Literacy Missouri and worked to launch them as a new, independent non-profit business entity. In this podcast, he talks with Helen Osborne about the importance of using proven business principles to move health literacy forward. Topics include:

• Knowing why you need to make a business case for health literacy
• Using the language of business (key terms and acronyms)
• Creating a workable and measurable business plan
• Understanding business drivers, goals, and the importance of focus

More Ways to Learn:

• David Walsh is a principal at SmartLaunch, in Havertown PA. You can reach him by email at dwalsh@smart-launch.com or phone at 267-438-6015
• Health Literacy Missouri, at www.healthliteracymissouri.org
• Good to Great – Lessons for the Social Sector; http://www.bridgespan.org/LearningCenter/ResourceDetail.aspx?id=624
• LaSalle University: Guide for Non-Profits, http://www.lasallenonprofitcenter.org/p-79-Guide%20for%20Nonprofit%20Organizations

Click here for a transcript of this episode:

Transcript:

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy month and host of this podcast series Health Literacy Out Loud. In these podcasts, you get to listen in on my conversations with some pretty amazing people — hearing what health literacy is, why it matters, and ways we all can help improve health understanding.

Today, I’m talking with David Walsh who is a principal in the consulting firm, SmartLaunch, which is based in Havertown, Pennsylvania. With expertise in strategic and business planning, marketing, and financial management, David helps both for-profit and not-for-profit businesses manage change, maximize opportunities, and launch new ventures.

David recently helped develop a business case for Health Literacy Missouri and launched them as a new, independent, non-profit business entity. David has a lot of experience working with groups. He tells me he is number eight in a family of twelve children. He sure knows how to stand out from a crowd and get heard. Welcome David.

David Walsh: Thanks Helen, happy to talk with you today.

Helen Osborne: When I got started in health literacy about 15 years ago, there wasn’t a crowd at all. But now more and more groups and organizations are coming in and getting active in health literacy. Why do we need to consider business principles as we go forth in this work?

David Walsh: Healthcare is a very big business — a multi-billion dollar operation. Hospitals, healthcare companies, insurance companies and doctors are now thinking much more in terms of the business and the financial side.

Helen Osborne: So, we need to be thinking like businesses. It is not just enough to know about health literacy and care about it to our core. We have to talk the language of other people making financial decisions. Is that right?

David Walsh: Yes, I think you need to really talk that language because that’s how they’re thinking. I always like to say you should put yourself in your partner’s shoes and think of how they’re looking at their operation. A lot of these discussions come down to the financial side — it’s really the money that allows hospitals and healthcare organizations to provide the highest level of care, to have the funds to do cutting-edge research, and have the resources to be their best.

I always like to look at things in these financial terms because that’s how organizations view their business. If you can talk this language and understand their perspectives, you will have a leg up on many other people in the community.

Helen Osborne: Listening to you, I sense an association to what we’re asking of patients and families. We’re asking them to learn the language of healthcare, patho-physiology, treatment, and screening. Are you asking us to understand and work with the terms and language of business?

David Walsh: Exactly.

Helen Osborne: Okay, so we have to do something that’s really hard. Can you start us down that path. What are some beginning words and terms we need to know to be a participant in this conversation?

David Walsh: Some of the words that come up are “return on investment” — what kind of financial benefit or mission benefit these organizations have for making an investment in health literacy. They’re going to have to put dollars out there. But what are they going to see in return? “Return on investment” is something that you’ll hear in any sort of financial discussion.

Helen Osborne: Does that have an acronym?

David Walsh: It has, ROI.

Helen Osborne: So we have to not only learn the terms but also those nasty little acronyms.

David Walsh: You have to learn the acronyms and things like “P&L,” which is “profit and loss.” And profit is not a bad thing. In any business, be it for-profit or non-profit, profit allows organizations to fulfill their mission. It allows them to do what they set out to do. In the case of healthcare companies, it’s to provide higher levels and better levels of care for their patients. So profit is not a bad thing. It’s not a dirty word.

Helen Osborne: So you already introduced a few different terms. We have return on investments, ROI, profit and loss, or P&L. And you’re saying profit is an okay thing, in fact you need it. And you’re also talking about mission– why people are doing this work. Is that the underlying concept?

David Walsh: Yes, I think that’s what is so important in the work that non-profit organizations do. It’s really about the mission, whether it be making healthcare more understandable as many health literacy organizations do. Or it’s providing patient care and cutting-edge research. It’s all about the mission – the dollars allow you to fulfill that mission.

Helen Osborne: You also talked about some structures.  When I introduced you, I talked about for-profit and not-for-profit, also called as non-profit. Can you distinguish between those types of businesses, please?

David Walsh: For-profit and non-profit — it’s really a distinction about tax regulation. A for-profit operation is set up to benefit the shareholders. A shareholder could be a single person or a large group of people, as is the case of many large corporations. In a non-profit, the excess revenue does not go back to any shareholders but gets invested back into the organization. That is the main difference between the two. Profit in a for-profit goes back to shareholders. In a non-profit institution, it gets invested back in the mission of the organization.

Helen Osborne: Probably the vast majority of our podcast listeners are working at not-for-profit organizations. But no matter what our business structure, we all need to be mindful of that bottom line — return on investment.

David Walsh: Yes if you can understand the language of business then you’ll be able to help move your organization forward in a much better way.

Helen Osborne: You just talked about moving forward. What does that mean — to be moving forward?

David Walsh: Moving forward is about advancing the mission, making progress, and having greater impact with the various audiences that you want to interact with. It is getting your message out there in a much larger way — reaching a larger number of people that are hearing your message. In the case of health literacy, it’s making healthcare more understandable.

Helen Osborne: Is it ongoing? Will this sustain us if we’re moving forward?

David Walsh: Yes, I think it will sustain you. I don’t know if you ever get to a specific end point because I think you always want to continue pushing yourself to do better, do more. There are always going to be additional opportunities, additional people to talk to, and additional stories to tell. You are constantly keeping things going. Sustainability is another one of those words that people should understand. Sustainability can mean a lot of different things. In different industries, people are talking about sustainability from an environmental standpoint. But from a business standpoint, sustainability means that the organization will be able to continue because it has the resources. That is, it can pay people to be involved with the organization, pay for marketing, and pay for programs and services.

Helen Osborne: We in health literacy need to think about this. A lot of people who contact me are excited about health literacy. Maybe they just heard about it, believe in it very strongly, have done something towards it and feel it’s very important. I know there is a gap from that first passion into making a long-term difference. What advice do you have for people as they move forward?

David Walsh: My advice is to create a plan focused around the business side. Say what it is that you’re going to do. Decide what product, service, or program you want to get out there. Decide who is going to get that service. Now you have a program and audience. Then look at how you are going to deliver that service. What do you need to do? What kind of people? What kind of technology? What kind of support do you need to do that?

And then you need to find ways to fund those resources — coming up with the dollars, revenue to support it. You can find revenue in a lot of different ways. One is through “contributed support” which is private donations, foundations, or research grants.  Or maybe it’s “fee for service” when people pay for your knowledge, expertise, or training programs.

You want to create a plan that shows you have enough resources to adequately carry out and provide that service, and that it’s sustainable. It’s like your monthly budget at home. If you have more money going out than coming in, over the long term you’re not going to be sustainable. The same principles apply to your health literacy passion. No matter whether you set it up as a separate business or a separate organization, you still need a plan to say what you’re going to do and how you’re going to do it. Maybe it’s to work within an existing organization and provide a plan to your “higher ups” – such as a department within a larger hospital. They want to see a plan as to why health literacy makes sense for them.

Helen Osborne: I really appreciate that. I remember from my hospital days when I first heard about health literacy, I knew that the people I needed to convince were the chief financial officer and the hospital president. Clinicians “got it” right away why health literacy mattered. It would have really helped a lot at the time if I knew these business components. Is having these principles in place sufficient to move forward?

David Walsh: The other piece that I think you need to move forward is a strong champion — someone you can go to who is really going to help and give an added voice to your cause. You might look for this champion or advocate within some other part of your company or organization, or even outside. But I think it’s important to have someone else voicing support of the program. I think that’s critical. The other part of a good plan is the people — that’s where this champion comes in.

Helen Osborne: So, it’s not just the “worker bees” but also outside voices giving credibility?

David Walsh: Yes.

Helen Osborne: Who are the other people that should be involved?

David Walsh: Looking at a typical organization, you need to get people from your marketing department involved because additional exposure is always good. I think having someone from the legal side is important because lawyers can always throw up some roadblocks to any good idea or good program. Get them involved early in the process. And you want to have some finance people helping with numbers. These are some of the key players who need to be involved within any type of organization.

Helen Osborne: That helps us get started. Now, let’s move this forward. After a program or business entity has the people and plan in place, then what? How do you kind of keep on track as you go ahead?

David Walsh: You need to look at the key drivers of the marketplace.

Helen Osborne: That’s another new term. What do you mean by “drivers”?

David Walsh: Drivers are the things that are really important to your audience. One good driver is patient satisfaction. Health literacy can help improve patient satisfaction. From a hospital’s standpoint, one of their goals or drivers (another way to look at a driver is as a goal) is to attain a very high level of patient satisfaction. But if you have patients walking into your hospital who can’t figure out where to go and t get lost or confused, some may walk right out of the door or not get to appointments on time or miss appointments.

If you can create way-finding programs or signage that allows these patients to better navigate the hospital, then their levels of satisfaction will go up. They’ll be happier and might go back to the hospital over and over again. It’s just like in any regular business  that wants to see happy customers. A hospital wants to see happy patients. I think health literacy can help them get there by giving clear communication, better communication, easier to understand communication — so patients feel confident and pleased with their overall experience. And so the driver in this case is patient satisfaction. If your organization can talk that language and say this is how we help improve patient satisfaction, it goes a long away.

Helen Osborne: I can think of so many different drivers or goals we could have. We can have patient satisfaction, we can have reducing medical errors, we can have reducing dollars or decreasing returned or unplanned visits. I could think of so many different ways that we can have those goals. It almost feels overwhelming.

What I’ve also learned from watching you work with Health Literacy Missouri is a concept of, I forget the exact word, a kind of shedding of goals.

David Walsh: That’s right. The terminology I used was “goal sacrifice.”

Helen Osborne: Goal sacrifice.

David Walsh: It means prioritizing your goals and saying which ones are the most important. Then which ones can you sacrifice at this point given what you want to do? As the outsider coming to help move Health Literacy Missouri forward, there are so many opportunities. That’s what I’ve seen in my work over the last several months with Health Literacy Missouri — opportunities are so vast that you have to really pick and choose which areas, goals to go after.

One of the other important things in any business is focus. You need to have that focus. Tying back into how to keep things moving forward — you need to have a discussion with hospitals, healthcare companies, insurance companies to see what their top goals and priorities are. A lot of times they’ll have a public strategic plan or annual report that clearly identifies their goals. If you can tie into goals that are most important for these companies and organizations, you’re going to get a lot more attention from their senior people. And that, in turn, allows you better access and potentially better funding and resources.

Helen Osborne: Once we have the plan and goals, how do you know if you are on track and accomplishing the goals?

David Walsh: That goes back to having a plan. You want to make sure that you have some measurable goals so you can go back and check how you’re doing. Any good plan has milestones and timelines associated with it — what you want to do, by when. So you can go back and say — we said we were going to talk to this many people by this time of year. You should be able to say, “Okay, we achieved that goal.” And if you haven’t, that’s your opportunity to re-look at your plan.

In the planning work that I do, I always like to see on an annual basis that you go back and revisit your plan. Whether or not you feel you’re doing great or doing bad, no matter what, you should always go back and say, “Okay, here’s what we said we’re going to do a year ago. Now lets see how we did up against those goals.” There is a phrase from the business world, “If you don’t measure it, you can’t manage it.”  All your goals should be measurable.

Helen Osborne: I actually do that for my own business. Even though it’s a small business, I do have measurable goals. I also put myself on a routine. December is the time I look at the year past and plan for the year ahead. Is that a common cycle?

David Walsh: Yes, it is. Year end is when a lot of companies do their annual planning. I think the important part is getting into a routine, doing that on regular cycle. As long as you are doing it regularly, you’ll be okay.

Helen Osborne: Lets fast forward a year from now. Wearing your business hat, where would you like to see health literacy programs go?

David Walsh: What I would like to see is higher visibility of health literacy. I’m hearing a lot of talk about it at the state level, at various state coalitions. But I think there is an opportunity to get it out on a much broader scale, into more mass media outlets so that people are talking about health literacy.

I compare it to some of the discussions that have gone on over the last year about financial literacy. In this economy, people have said it’s really important to have good financial literacy — to understand mortgage or credit card documents. I think that should be the same for health literacy because of all the healthcare contracts and insurance contracts we sign –we need to understand what we’re doing.

And I think this year with healthcare reform, however it turns out – there will be a lot more responsibility put on the consumer. If we start to understand that language a lot better, we’ll be in a much better place. I think there is real opportunity to get it talked about on a much broader scale than is happening right now.

Helen Osborne: Thank you. You’ve put together the drivers, goals, time, vision and mission. I thank you very much for sharing these business principles with us. With health literacy, we cannot just say “I’m just doing a good job, this is important to me, this is important to my patients.” We also have to frame this in a sustainable way which means learning the language of business and using its principles. I thank you so very, very much David.

David Walsh: Thank you, Helen. I really enjoyed this.

Helen Osborne: I learned a lot from talking with David Walsh and hope you did too. But health literacy isn’t always easy. For help communicating your health message, please visit my Health Literacy Consulting website at www.healthliteracy.com. And while you are there, feel free to signup for the free e-newsletter, “What’s New at Health Literacy Consulting.” New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find more information about each episode along with important links at the Health Literacy Out Loud website, www.healthliteracyoutloud.com.

Did you like this podcast? Did you learn something new? If so, tell your colleagues, tell your friends. Together lets let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

Karen Schriver, PhD

Dr. Schriver’s first book, Dynamics in Document Design: Creating Texts for Readers—now in its 9th printing—is regarded as an essential text in its field. Winner of ten national awards for her work, Schriver is writing two new books: the first on developing expertise in information design, and the second on visual and verbal design moves to engage readers online.

In this podcast, she talks with Helen Osborne about using good information design to get readers to read, and keep reading. Topics include:

• Using good information design to help readers feel valued and respected
• Being a visual detective, observing what works and what doesn’t
• Engaging readers with contrast, consistency, grouping, and other design moves

More Ways to Learn:

• You can reach Karen by email at kschriver@earthlink.net
• Schriver KA, Dynamics in Document Design: Creating Texts for Readers (1997). John Wiley & Sons: New York, NY.  Available at http://www.amazon.com/Dynamics-Document-Design-Creating-Readers/dp/0471306363
• Info Design Patterns, at http://interface.fh-potsdam.de/infodesignpatterns/news.php
• Info Design: Understanding by Design, at http://www.informationdesign.org/
• Info Understanding by Design, an Interview with Karen A. Schriver, http://www.informationdesign.org/special/schriver_interview.php
• Tactical Technology Collective, at http://www.tacticaltech.org/infodesign

Click here for a transcript of this episode:

Transcript:

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, Founder of Health Literacy Month and your host of Health Literacy Out Loud. In these podcasts, you get to listen in on my conversations with some pretty amazing people. You will hear what health literacy is, why it matters and ways we all can help improve health understanding. Beyond learning what to do and why to do it, I hope that the people you meet and listen to inspire you, as they inspire me, to make a health literacy difference.

Today, I’m talking with Dr. Karen Schriver who is president of KSA Communication Design and Research — a consulting firm based in Pittsburgh, Pennsylvania. Prior to this, Dr. Schriver was Professor of Rhetoric and Information Design at Carnegie Mellon University where she co-directed graduate programs in professional writing and document design.

Dr. Schriver’s first book Dynamics in Document Design: Creating Text for Readers is now in its ninth printing. It won a national book award and is considered an essential text in its field. Matter of fact, this book was how I first heard of and got to know Dr. Schriver. I would go to her book whenever I had a plain language problem. Sure enough, the answer was almost always there. One sentence from this book stays with me even today. It reads, “Whether we call our audience readers, users, customers or stakeholders, they all want to know the same thing — to feel that someone has taken the time to speak clearly, knowledgeably and honestly to them.”

To me, that sentence conveys the essence of health literacy. Welcome to Health Literacy Out Loud, Dr. Schriver.

Dr. Karen Schriver: Thank you, Helen. It’s a pleasure to be here and I’m really happy to talk with you today.

Helen Osborne: How does good document design and all the principles that you’re talking about make readers feel respected and valued?

Karen Schriver: Readers can feel respected and valued when two things happen. One, when they understand the text. When they actually “get” whatever is being said via words and graphics. The second is when they feel as though the text itself responds to them emotionally. People really feel both are important when they are reading and understanding.

When people look at a text that is confusing, they don’t feel respected because they feel as though they’re not being talked to, just being talked at. An example is a pamphlet with difficult words, complicated sentences, or paragraphs that go on and on and on. These visual and verbal problems can be very confusing and troubling for patients.

A second kind of problem that text and graphics can create is an emotional one — when the person looks at a document or a Website and feels talked down to or insulted or even frightened by what they see. Good information design considers the reader’s likely emotional response to text and graphics. We know from years of research that reading isn’t just an intellectual cognitive activity. It’s an emotional activity as well.

Let me give you an example. A few years ago, I went to get a mammogram after having the feeling that I might have detected a lump in one of my breasts. In the doctor’s waiting room I was given a form to fill out. The waiting room was full of men who were waiting for their wives. I started filling out this form. At the beginning there was the usual name and address kind of thing. And then I came to this question about my breasts. There were two simple black circle line drawings intended to be breasts. But the strange thing was that the circles had been dissected into eight sections, so it looked like a grapefruit. And I was supposed to put an X on the section of the breast where I thought where the lump was.

I’m looking at this and was immediately horrified by the picture. I was thinking, “Oh my gosh, they might cut a wedge out of me like this picture.” And then I saw this guy looking over my shoulder and I felt really panicked and wanted to leave. At that point, I just put down the clipboard, sat quietly and didn’t fill out the form. I thought it would be better if I said nothing because then the doctors will have to find it on their own and I wouldn’t be part of my own demise. Now you could say see I overreacted to just to a simple line drawing. But I think when it comes to health that many of us panic over any indication that we might need surgery.

Helen Osborne: I’d be interested in taking this step by step, talking about the three components: the visual part, the verbal part and the affective or feelings part.

Karen Schriver: Yes.

Helen Osborne: I wonder if we could take those one by one. You’ve already given great illustrations of what goes wrong. How could we make this better in documents we are writing?

Do you want to start with the visuals since you’re talking about a breast that looks like a section of grapefruit? Obviously, that didn’t work. How can we use the visual parts of a document to help people feel more respected and valued and also understand?

Karen Schriver: It’s hard to specify without looking at a concrete case because it’s difficult to generalize. But there are some things that people can do, whether or not they have training in visual design. My first recommendation is to collect examples of the type of documents or Websites similar to what you are working on. Be a kind of detective — a visual detective — and try to notice what works and what doesn’t work.

Now, if possible, find examples that have been usability tested. People who did the testing could tell you what worked and what didn’t.

Helen Osborne: And by usability testing, you mean that this document was tested with actual readers or users of the material?

Karen Schriver: That’s right. Actually having someone sit down with the material and go through it looking at all the words and pictures and interpreting them together.

One of the things about information design is that the words and the images are not necessarily separate. We see them separately but when we look at a document we’re inspecting the whole thing. Often because pictures grab us faster, our eyes are attracted there first. Typically, we’ll look at the pictures and then the captions and then scan for headings and subheadings. After that, if those things seem interesting and as though they’re oriented towards us, then we might get into the text and start reading.

Helen Osborne: So it’s not that people start at the top and go down in a logical order — people look all over a document and find where they want to start.

Karen Schriver: That’s right. Writers often make the assumption that people begin with the first word and then just keep reading. As designers, we tend to think that people start at the top left and just move left to right and down the page. But research shows that isn’t what happens.

People are attracted primarily to contrast, which is one of the key visual principles that has been studied by researchers again and again. Contrast is created by differences in light and dark, thick and thin, big and small. For example, headings that are bolder than the text, pictures that are big in relation to small pictures. And readers will scan the text for those things that jump out at them. If everything is the same hue or the same shade of grey, then nothing will jump out. That sort of disempowers people and they don’t want to keep going.

Helen Osborne: You were talking about looking at what works and what doesn’t work and now you’re talking about the contrast. Is this a category of something that does work? Do we want to have contrast in our documents?

Karen Schriver: Yes, we do. We want to have contrast in the typography — the headings and the sub headings should be darker than the body text. We want to have contrast in our line lengths so that important things have shorter line lengths and captions, for example, might have longer line lengths. If we have opportunities for using color, we would want to save color for parts of the document or Website that you really want people to focus on. They’ve done studies that even tiny babies can detect differences between light and dark, thick and thin, big to small, short to long. Our eyes seemed to be hard-wired to detect dissimilarities. One key principle of information design is to capitalize on that natural attraction to contrast and build that into your document.

Helen Osborne: Is there a time when there is too much contrast? I’m picturing a document like a quilt made with different scraps of fabric. It can have so many colors and so many designs that I’m not sure which I like the best. In a document trying to teach information, could that be distracting or does this enhance understanding?

Karen Schriver: Well, a document is unlike a quilt in that the kind of contrast that we want is for similar information to be signaled in similar ways. And so, if we look at a quilt, each square is independent and bound together such that the whole view together is an interesting tapestry. But when we look at a document, we don’t want to see, for example, some headings in one font and one level of boldness and some headings in another font and a different level of boldness. We wouldn’t want to see some procedures formatted as steps using numbers, while other procedures are formatted as itemized lists, and yet other procedures formatted as paragraphs. That would be chaotic contrast and confusing to the reader.

What we want to see is the designer or writer step back from the text and say, “what are the families of information here?” “What goes with what?” Another principal of document design is grouping. What we want is to create grouped families of content so that all procedures are formatted in exactly the same way. For example, all general overview information might have a longer line length, might have a lighter hue of text and serves as a kind of umbrella over the text so that the reader gets the sense, “I see this is the big picture.”

Helen Osborne: Will readers respond to that visually? Will this bring them into the document and make them want to read it and get into more of the body of information?

Karen Schriver: Yes, it will. When they see these cues that lead them into the text, very often these high contrast areas will be what they focus on most. And if those few initial things look interesting, then people tend to go back into the text and look more. Now, if when they actually start reading and find that the text is not responsive to their needs or perhaps condescending or irritating, then they shut down. It doesn’t matter how clear the writing is or how good the design is. If the content is not there in terms of what the reader expects to see and what they need, then the reader will eventually stop. We really need to try and do everything we can first to get the reader to read and second to keep them reading.

A few years ago, my colleagues and I did a study of how teenagers interpret drug prevention literature. These are brochures and pamphlets intended to discourage children and teenagers from taking drugs. We wanted to find out whether brochures and pamphlets in this genre were effective. We collected over 100 brochures and handouts from national and local drug prevention agencies in my area (Pennsylvania, West Virginia, Ohio). And a lot of these were funded by taxpayer dollars, so they were important documents with good money spent on them.

We asked over 300 students to take part in this study. They were from inner city schools and suburban schools, a wide range. We asked them to look at these brochures and pamphlets and to participate in focus groups, surveys and interviews. We used a method called “think-aloud” protocol where students read aloud and just comment on the words and the graphics and pictures as they go along.

Helen Osborne: What did the students tell you?

Karen Schriver: They told us a whole lot about what worked and what didn’t. I could tell you about one brochure called “Snappy Answers.” It was a one-page flyer and supposed to go to preteens to early teens. At the top of the pamphlet was the heading “Here are some snappy answers to the question. Want some alcohol or other drugs?” This pamphlet then went on to list 10 or 11 answers that teens could say back if someone said this question to them. Some of the answers were things like “No, thanks, I’d rather walk my pet python.” Or “No, thanks, I’m all American” or “I’ll stick to milk.” Or “I’d rather not, I’m too special.”

Now, you can imagine when students started to read this pamphlet they started laughing and making fun of it. They said first off, no one would ask the question, “Would you like some alcohol or other drugs?” Just saying both of those things in the same question seemed lame as they put it. This is what we were talking about earlier — you can get them in with the catchy heading although they didn’t respond well to it. The items for them to say back were formatted as a bulleted list and so one would think, “Well, that would draw them into the text.” It did, but just once. When students saw the answers, they started saying things like, “Oh, that must have been written by some weird hippy who thinks he’s cool, but he’s not.” It really had no relevance. And it seemed to them like the author was condescending and talking down to them.

When we looked across these brochures, we looked at two things. Did they get it? Did they understand it? That’s the cognitive part. And then, how did they feel about it? Were they persuaded by it? We found that students understood the brochures about 80 percent of the time. They could say, “Well, I know how many seconds it takes for crack cocaine to enter the bloodstream.” From a cognitive point of view, they got it. But when they actually thought about it and we asked, “Were you persuaded by that?” They would say, “No, it was a joke.” In over half of the cases where they got 80 percent correct on comprehension, the students thought the message was not persuasive and they would not be influenced by the brochure at all.

Helen Osborne: Since you are the “guru of design,” I want to ask you another age-old question: Do you recommend using serif or sans-serif fonts?

Karen Schriver: That question is asked quite a lot. Well, here is what the research says: fonts look a little bit different, depending on whether you’re presenting your information on paper or on the Web. If you’re designing on paper, it’s usually a good idea to present your body text using a serif font.

Helen Osborne: And serif is like Times New Roman?

Karen Schriver: That’s right, Times New Roman has extra details on what are called “ascenders” and “descenders.” They have little curly-q’s on the edge of the a’s, p’s, h’s — that kind of thing. Sans-serif does not. It’s a very clean line, the kind of line you would see on a stop sign.

Helen Osborne: So on paper, the body text should be serif?

Karen Schriver: Yes, on paper the body text should be serif roughly between 11 points and 13 points depending on who the reader is. If it’s an older reader, you’re going to want to pump that up to even 14, 15, 16 points, depending on what we call the “x height.” The size of the height of the small letters is really what matters in terms of legibility. If you start noticing that a’s and o’s and e’s are closing up on you — even slightly when you’re squinting — then you know you need to pump up the size of the body text a little bit. In contrast, you want to make your headings sans-serif and bold. Typically we want to have headings at least two shades bolder than our body text.

Moving to the Web is a different story. There, serifs sometimes tend to scintillate because light is coming from behind the screen and projecting towards you. And so in designing for the Web, generally speaking it’s a good idea to go with sans-serif fonts because they are cleaner and much easier to see with light projecting behind them. But I have to say that both serif and san-serif faces have been found to be equally legible.

One of the funny things is that the font that people really want to see depends on the country they are from. In the U.S. and Canada for example, we have grown up on a tradition of textbooks all created in serif. Think back to books you read as a little child, most of them were printed in serif faces — New Century Schoolbook, Garamond, Times, Palatino, a variety of serif faces. But Europe has a completely different tradition. And so, if you are designing something that must cross cultures you really need to think about what the tradition is. Again it’s not just an issue of cognition; it’s an issue of preference. Some people don’t want to read stuff that isn’t like what they’re used to. That may not be fair but that’s how it is.

Helen Osborne: Thank you for sharing that. As you’re explaining that I’m thinking we could just have a whole podcast just on type. I’m just curious if non-romance languages even have serif sans-serif. This talk of the cultural aspects is fascinating and I thank you so much for sharing it.

I know it’s also a challenge for listeners to just have auditory in this podcast. Is there a way to learn more about these topics?

Karen Schriver: Yes, there are several ways. One is to search the Web for the term “information design.” There are many Websites related to information design and I will be happy to provide some links.

Helen Osborne: And we’ll also have those links on the Health Literacy Out Loud podcast page.

Karen Schriver: Sounds great. There are also books that can help train your visual eye. I was saying you should look at a lot of examples. If you look at expert designers, they are really excited about looking at texts and taking mental pictures of those texts — they remember the good parts and the bad parts. That’s the kind of thing we want to build up over time. There are good books out there to help you do that.

Helen Osborne: We want to include a link to your book as well — I know how much it has helped in my plain language practice. Many of our listeners are content experts who know their topic but are not necessarily experts about design.

Good design is not necessarily intuitive but rather something we need to learn. Thank you for giving us some heads-ups and tips about doing just that. And for resources to start getting a sense of what works and what doesn’t. I thank you so much for sharing with us on this podcast, Karen.

Karen Schriver: You’re welcome and thank you for doing this podcast series. It’s just been fabulous. I’ve had a chance to listen to many of them and I’m just so impressed.

Helen Osborne: Thank you. I learned a lot from Karen Schriver and I hope you did too. But health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting Website at www.healthliteracy.com.

And while you are there, feel free to signup for the free e-newsletter, “What’s New in Health Literacy Consulting.” New Health Literacy Out Loud podcasts come out every few weeks. You can subscribe for free to hear them all. You can also find more information about each episode, such as the links that Karen Schriver mentioned, at the Health Literacy Out Loud Website www.healthliteracyoutloud.com.

Did you like this podcast? Did you learn something new? I sure did. If so, tell your colleagues, tell your friends together. Let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

In this work, Dr. Lawrence oversees the city-wide implementation of LAC’s Health Literacy Initiative. He trains teachers and health professionals about health literacy principles and strategies. He also facilitates partnerships between literacy agencies and health care institutions.

In this podcast he talks with Helen Osborne about ways to apply adult literacy principles to medicine and public health. Topics include:

• Why and how a literacy organization got involved with health literacy
• How teaching practical health literacy skills helps teachers and students alike
• Ways health literacy partnerships benefit both literacy and health programs
• Resources to start building health literacy partnerships near you

More Ways to Learn:

• Literacy Assistance Center in New York City, www.lacnyc.org
• Lawrence, W. “Advancing Health Literacy: Building Health Communication from the Patient Side.” J of Communication in Healthcare (2008). Vol. 1, No. 2: 182-193.
• Lawrence W, Van Brackle L. “Addressing Health Disparities Through Adult Literacy Education” Literacy Harvest (2007). Available athttp://www.lacnyc.org/resources/publications/harvest.htm#current
• Lawrence W, Soricone L. “A Conversation with FOB: Learning How to Teach Health Literacy,” Focus on Basics (2005). Vol. 8, Issue A. Available at http://www.ncsall.net/?id=995
• Health Literacy Out Loud podcast #15, “Dr. Rima Rudd talks about the health literacy burden in healthcare.” Available at http://www.healthliteracyoutloud.com/2009/05/04/hlol-15-dr-rima-rudd-talks-about-the-health-literacy-burden-in-healthcare

Carolyn M. Clancy, M.D.

In 2009, Dr. Clancy was chosen as the most powerful physician-executive by the readers of Modern Healthcare and Modern Physician magazines. She was also awarded the 2009 William B. Graham Prize for Health Services Research.

In this podcast she talks with Helen Osborne about AHRQ’s new CAHPS Health Literacy Item Set. Topics include:

• Health literacy and how it relates to quality, safety, and patient care
• CAHPS Health Literacy Item Set: A way to measure patients’ experience of care and communication
• Vision for the future with health literacy as part of every practice

More Ways to Learn:

• Agency for Healthcare Research and Quality (AHRQ), http://www.ahrq.gov/
• AHRQ: Health Literacy and Cultural Competency, http://www.ahrq.gov/browse/hlitix.htm
• AHRQ News on Twitter, http://twitter.com/ahrqnews
• Healthcare 411, a podcast series from AHRQ at http://healthcare411.ahrq.gov/
• Questions are the Answer, a campaign from AHRQ to help patients be more active in their care, http://www.ahrq.gov/questionsaretheanswer/
• Osborne, H. “’Questions Are the Answer’ to Helping Patients Understand Their Health,” On Call Magazine, June 2008. Available at http://www.healthliteracy.com/article.asp?PageID=7707
• Weiss, BD. Health Literacy and Patient Safety: Help Patients Understand. 2007. American Medical Association Foundation and American Medical Association. Available at http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf

October is Health Literacy Month. This is the 11^th year that advocates everywhere are raising awareness about health literacy and ways to improve understanding. This year, we decided to focus on stories – stories about why health literacy matters to healthcare providers, policy makers, researchers, educators, students, patients, families, and all others who care about health.

In this special edition podcast, you will hear six people share their stories about why health literacy matters. I recorded this podcast in May when I was giving a workshop at the Institute for Healthcare Advancement’s (or IHA) 8^th Annual Health Literacy Conference.

This is the second of two Health Literacy Month podcasts. In this one, you will hear from:

• Arthur Culbert, Health Literacy Missouri Foundation
• Stacy Bailey, Northwestern University
• Mary Ann Abrams MD, Iowa Health System
• Roberta Dickman, Advocate Healthcare Lutheran General
• Gloria Mayer, Institute for Healthcare Advancement (IHA)

More ways to learn:

• Health Literacy Month website. Thanks to a team of remarkable volunteers and amazing authors, each day in October there are one or more health literacy stories posted at www.healthliteracymonth.org.
• Health Literacy Out Loud. Hear interviews with those in-the-know about health literacy by going to www.healthliteracymonth.org
• Health Literacy Consulting. Find out more about Helen Osborne’s work and background by going to www.healthliteracy.com
• Institute for Healthcare Advancement. Find out about this organization and its upcoming health literacy conference by going to www.iha4health.org

Here are photos of them listening to this recording:

Dr. Seibel is a practicing physician and professor of obstetrics and gynecology at the University of Massachusetts Medical School in Worcester, MA. He also is a composer and performer who uses music and song to teach about health. You can learn more about Dr. Seibel’s wonderful work by going to his HealthRock website at www.healthrock.com.

In this HLOL podcast, you will hear two health literacy songs along with Dr. Seibel talking about why he composed them. Dr. Seibel has kindly offered a free download in honor of Health Literacy Month. To do so, go to www.healthrock.com and then click “podcasts.”

In this special edition podcast, you will hear five people share their stories about why health literacy matters. I recorded these in May 2009 when I was giving a workshop at the Institute for Healthcare Advancement’s (or IHA) 8^th Annual Health Literacy Conference.

This is the first of two Health Literacy Month podcasts. In this one, you will hear from:

• Michael Villaire, Institute for Healthcare Advancement (IHA)
• Cindy Brach, AHRQ (Agency for Healthcare Research and Quality)
• Michael Wolf PhD, Northwestern University
• Beccah Rothschild, Health Research to Action at UC Berkeley
• Jutta Ulrich, Health Guide America

More ways to learn:

• Health Literacy Month website. Thanks to a team of remarkable volunteers and amazing authors, each day in October there are one or more health literacy stories posted at www.healthliteracymonth.org.
• Health Literacy Out Loud. Hear interviews with those in-the-know about health literacy by going to www.healthliteracymonth.org
• Health Literacy Consulting. Find out more about Helen Osborne’s work and background by going to www.healthliteracy.com
• Institute for Healthcare Advancement. Find out about this organization and its upcoming health literacy conference by going to www.iha4health.org

Carol Levine works at the United Hospital Fund in New York City. There, she directs the Families and Health Care Project which focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in health care settings. You can see this project online at www.nextstepincare.org.

Levine has won numerous awards for her work on health and social policy issues. In 1993, she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. In 2007, she was named a WebMD Health Hero.

In this podcast she talks with Helen Osborne about “Writing health information that caregivers can understand and providers will accept.” Topics include:

• The growing interest in transitions of care
• Writing information in ways caregivers can understand
• Getting buy-in from a cross-section of providers
• Successes, lessons learned, and recommendations

Dr. Stuen’s entire career has been in the field of aging and she currently is Chair of the American Society on Aging. She is the author of numerous publications on topics that include age-related sensory loss, access to environments for older adults with impaired vision, and contributions older adults and their family and friends can make to program planning and service delivery.

In this podcast Dr. Stuen talks with Helen Osborne about age-related vision loss. Topics include:

• The continuum of vision as people age
• How to know when someone has vision loss (but doesn’t say so)
• Ways to communicate effectively in print and on the web

More Ways to Learn:

• Lighthouse International is a leading non-profit organization dedicated to fighting vision loss through prevention, treatment and empowerment. Available at http://lighthouse.org
• Making Text Legible: Designing for People with Partial Sight. Includes guidelines and examples of effective legibility choices for anyone. Available by the Lighthouse International at www.lighthouse.org/accessibility/legible
• Effective Color Contrast: Designing for People with Partial Sight and Color Deficiencies. Guidelines and specific examples of effective color contrast. Available from Lighthouse International at www.lighthouse.org/accessibility/effective-color-contrast
• Making Your Web Site Senior Friendly is an informative checklist Web designers can use while creating online material for older adults. Published by the National Institute on Aging and the National Library of Medicine, it is available at www.nlm.nih.gov/pubs/checklist.pdf
• Making Web Sites More Accessible for Users Who Are Older and/or Have a Disability. Sponsored by the U.S. Administration on aging, this website includes background information on visual disabilities and offers strategies for improving accessibility. Available at www.adrc-tae.org/tiki-index.php?page=TAEIssueBriefs
• LowBrowse^TM is a free add-on extension to the Mozilla Firefox web browser to help people with low vision access the web.  www.lowbrowse.org or email lowbrowse@lighthouse.org.
• Osborne, H. On Call Magazine, 2000. “In Other Words…When Vision Is an Issue…Communicating With Patients Who Are Visually Impaired” Offers practical tips for designing materials for people with visual challenges. Available at www.healthliteracy.com/article.asp?PageID=3774
• Worldwide Web Consortium. Available at http://www.w3.org

Selina is recognized for her outstanding work. In 1996, she received the Community Builder of the Year award. In 1997, she was a finalist for the Nelson Mandela Award for Health and Human Rights.

I first learned about Selina when reading the book, The Community Is My University: A Voice from the Grass Roots on Rural Health and Development. On a recent trip to South Africa, I had the privilege of speaking with her and recording this podcast.

In this podcast she talks with Helen Osborne about:

• What trachoma is and how it is passed from one person to another.
• Strategies to educate a community about disease prevention.
• Using song, dance, role-play and other ways to teach about health.

More Ways to Learn:

• Maphorogo S, Sutter E, Jenkins J (ed), 2003. The Community Is My University: A Voice from the Grass Roots on Rural Health and Development. Available from KIT Publishers at http://kit.nl/smartsite.shtml?ch=FAB&id=8332&ItemID=1034&RecordTitle=The%20community%20is%20my%20university
• Osborne H, On Call Magazine, 2007. “Perspective: Health Communication Half a World Away.” Available at http://www.healthliteracy.com/article.asp?PageID=6482

Ginny has won many awards for her work and is the author of numerous publications on usability, task analysis, accessibility, document design, plain language, and writing for the web. Her latest is the widely-acclaimed book, Letting Go of the Words – Writing Web Content that Works.

In this podcast she talks with Helen Osborne about ways to communicate clearly on the Web. Topics include:

• Writing for print or the web. What’s the difference? How are they the same?
• Appreciating that every web use is a conversation started by the site visitor.
• Understanding your web visitors by thinking of “personas.”
• Applying principles of plain language to health websites.
• Using usability testing to measure how well your website works.

More Ways to Learn

• Redish & Associates, Inc., www.redish.net
• Redish J. Letting Go of the Words — Writing Web Content that Works. Elsevier, 2007. Available at http://redish.net/content/books/lettinggoofthewords.html. You can download two chapters to get a sense of the style and tone by going to    http://redish.net/writingfortheweb/index.php/sample-chapters
• Dumas J., Redish, J. A Practical Guide to Usability Testing. Intellect Ltd.,
  First edition, 1993; Revised edition, 1999.
• Hackos, J., Redish, J. User and Task Analysis for Interface Design. John Wiley
  & Sons, 1998.
• Osborne H. “In other words…What Makes Web Sites ‘Patient Friendly?’” On Call magazine, July 2005. Available at http://www.healthliteracy.com/article.asp?PageID=3803

About plain language: www.plainlanguage.gov & www.centerforplainlanguage.org

About usability: www.usability.gov & www.usabilityprofessionals.org

In this podcast, he talks with Helen Osborne about developing healthcare materials with and for village health workers. Topics include:

• Overview about the Hesperian Foundation
• About Hesperian’s books, including Where There Is No Doctor
• Materials development process using the participatory model
• Lessons learned and shared with the health literacy community

Ways to Learn More:

Hesperian Foundation (English): http://www.hesperian.org
Hesperian Foundation (Spanish): http://espanol.hesperian.org

Prior to moving to St. Louis, Dr. Culbert spent 31 years as a faculty member and a dean at the Boston University schools of medicine and public health. He has over 25 years of teaching experience in the fields of public health, medical sociology, and medical education. Throughout his career Dr. Culbert has been a pioneer, an innovator, and a leader in the fields of public health and medical education.

In this podcast, he talks with Helen Osborne about statewide health literacy initiatives. Topics include:

• Statewide health literacy initiatives: What Missouri and other states are doing
• Synergy and collaboration among statewide health literacy initiatives
• Stakeholders and other necessary partners in these initiatives
• Economic considerations and essential resources to get started

More Ways to Learn:

• You can email Arthur Culbert at aculbert@mffh.org
• Iowa Health System at www.ihs.org
• Minnesota Health Literacy Partnership at http://healthlit.themlc.org
• Missouri  Foundation for Health at www.mffh.org
• Wisconsin Literacy at www.wisconsinliteracy.org

Dr. Davis’s many health literacy accomplishments include: developing the Rapid Estimate of Adult Literacy in Medicine (REALM); chairing Louisiana’s statewide Health Literacy Task Force; serving as master faculty of the AMA’s Train-the-Trainer Health Literacy Curriculum; and participating as a member of the Healthy People 2010 Health Literacy/Health Communication Section, and the FDA’s Drug Safety and Risk Management Advisory Committee.

In this podcast, she talks with Helen Osborne about helping patients take “baby steps” (action planning). Topics include:

• What baby steps are and why they are needed in healthcare today
• How baby steps help in the management of chronic disease
• Ways to build baby steps into your healthcare practice

• American College of Physicians (ACP) Foundation, Living with Diabetes: An Everyday Guide for You and Your Family. To learn more and order copies, go to http://foundation.acponline.org/hl/diabguide.htm
• Bodenheimer T. “Coordinating care–a perilous journey through the health care system.” N Engl J Med 2008;358(10):1064-71.
• Bodenheimer T, Davis C, Holman H. “Helping patients adopt healthier behaviors.” Clinical Diabetes 2007;25(2):66-70.
• DeWalt DA, Davis TC, Wallace AS, Seligman HK, Bryant-Shilliday B, Arnold CL, Freburger J, Schillinger D. ”Goal setting in diabetes self-management: taking the baby steps to success.” Patient Education and Counseling, April 7, 2009, PMID: 19359123.
• Handley M, MacGregor K, Schillinger D, Sharifi C, Wong S, Bodenheimer T. “Using Action Plans to Help Primary Care Patients Adopt Healthy Behaviors: A Descriptive Study.” J Am Board Fam Med 2006;19(3):224-31.
• Lorig K. “Action Planning: A Call To Action.” J Am Board Fam Med 2006;19(3):324-5.
• Lorig, Bodenheimer. Ready, Set, Action Plan. 5 minute instructional video for providers and health educators.  The video demonstrates an easy, brief method for helping 3 patients create small achievable action plans. http://foundation.acponline.org/images/diabetes_dvd.wmv
• MacGregor K, Wong S, Sharifi C, Handley M, Bodenheimer T. “The action plan project: discussing behavior change in the primary care visit.” Ann Fam Med 2005;3 Suppl 2:S39-40.
• MacGregor K, Handley M, Wong S, et al. “Behavior-Change Action Plans in Primary Care: A Feasibility Study of Clinicians.” J Am Board Fam Med 2006;19(3):215-23.
• Osborne H, “In other words…How to help patients manage their action planning.” On Call magazine, June 26, 2007. Available online at http://www.healthliteracy.com/article.asp?PageID=6111
• Seligman HK, Wallace AS, DeWalt DA, et al. “Developing low-literacy patient educational materials to facilitate behavior change.” American Journal of Health Behavior 2007;31(Suppl 1):S69-78.
• Seligman HK, Wallace AS, DeWalt DA, Schillinger D, Arnold CL, Shilliday BB, Wallace AS, Seligman HK, Davis TC, Schillinger D, Arnold CL, Bryant-Shilliday B, Freburger JK, DeWalt DA. ”Literacy appropriate educational materials and brief counseling improves diabetes self-management.” Patient Education and Counseling. 2009.

Dr. Rudd is widely recognized as a leader in health literacy – helping to shape both the research and practice agenda in the US, Canada, and Europe. Dr. Rudd works closely with the adult education, public health, oral health, and medical sectors. Her current research looks at literacy-related disparities and literacy-related barriers to health programs, services, and care. Her Harvard website on health literacy serves scholars and practitioners.

In this podcast, she talks with Helen Osborne about the health literacy burden in healthcare. Topics include:

• Literacy-related disparities and barriers as they relate to healthcare
• Deconstructing healthcare language, instructions, and activities
• Literacy demands in chronic disease management, prevention, and navigation
• Why it’s time to reconsider the definition of health literacy

More Ways to Learn:

• Harvard School of Public Health, Health Literacy Studies. www.hsph.harvard.edu/healthliteracy
• Communicating Health: Priorities and Strategies for Progress (2003), US Department of Health and Human Services & Office of Disease Prevention and Health Promotion.  Dr. Rudd wrote the chapter about health literacy. Available at http://odphp.osophs.dhhs.gov/projects/healthcomm/
• Literacy and Health in America (2004), Educational Testing Services. Dr. Rudd is one of the authors. Available at http://www.ets.org/Media/Research/pdf/PICHEATH.pdf
• National Center for the Study of Adult Literacy and Learning (NCSALL), http://www.ncsall.net
• Nielsen-Bohlman L, Panzer AM, Kindig DA, (ed), 2004. Health Literacy: A Prescription to End Confusion. The National Academies Press: Washington DC. Dr. Rudd was a member of the Institute of Medicine committee as well as writer/contributor to the book. Available at http://books.nap.edu

Click here for a transcript of this episode:

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month, and your host at Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some amazing people. You will hear what health literacy is, why it matters and ways we all can help. Beyond learning what to do and why to do it, I hope that the people you meet and listen to inspire you, as they inspire me, to make a health literacy difference.

Today, I’m talking with Dr. Rima Rudd, who is a senior lecturer on society, human development and health at the Harvard School of Public Health. Her work centers on health communication and the design and evaluation of public health programs.

Dr. Rudd is widely recognized as a leader in health literacy — helping to shape both the research and practice agenda in the US, Canada and Europe. Dr. Rudd works closely with the adult education, public health, oral health and medical sectors. Her current research is looking at literacy related disparities and literacy related barriers to health programs, services and care. Welcome, Dr. Rudd.

Rima: Thank you, Helen. I’m really delighted to be part of this.

Helen: You and I have known each other for many years. We’ve been doing this health literacy work for a long time. Of course, I’m well versed in health. That’s been my career. I know about literacy. Certainly, we both know about health literacy. What do you mean by the terms “literacy related disparities” and “literacy related barriers” as they relate to healthcare?

Rima: Helen, I think we were both jarred with the published findings from the First National Adult Literacy Survey that came out in 1993. I think with that survey, for the very first time, we really began to understand very concretely the literacy skills of the adult population in the US and then a few years later, of most European industrialized nations.

I think it was a wake-up call and reminder that those of us schooled in a variety of disciplines and professions were accustomed to speaking with people in our group and related professions. I think we lost touch sometimes with problems of words, jargon, everyday speech and the demands of the modern society.

Helen: Did that report come out in 1993?

Rima: Yes.

Helen: At the time, I was working at a hospital. I used to write a lot of worksheets and give out a lot of written information. Wow, was that a comeuppance when I realized the patients I was writing for didn’t understand the information. Are you talking about those disparities and barriers?

Rima: In part. I don’t mean to be disparaging to anyone who wrote health materials at the time or subsequently after. I was, of course, among them. It’s not so much that it was a wake-up call as to what people could or couldn’t do, but also as to how poorly we were doing our job as communicators. We were forgetting to really focus on the common language of everyday life.

Helen: Tell us more what you mean about that common language of everyday life.

Rima: I’ve done several lit reviews of this growing field of health literacy. The bulk of the literature in peer-reviewed articles actually focuses on assessments of health materials. We do very poorly. Our health materials are filled with jargon and scientific and medical terms that don’t resonate in the sense that people don’t use these terms in everyday language.

I’ll give you just one easy example. I remember when dentists used to talk about your gums and gum disease. Then suddenly, my dentist was talking to me about tissue. I was able to make that translation, knowing that he meant gum for tissue, but that is also a word that has to do with blowing our nose.

That’s just one simple example of how words have very different meanings, and as professional groups try to fancy up their language, we’re stepping away from the language of everyday talk.

I think that we have to be respectful of the everyday words that people use in common discourse. At least be aware that when we use a word that has a specialized meaning, we ought to explain ourselves. We ought to make sure that we’re on the same page.

Helen: That’s a great example about the dentist going from an easy three-letter word “gum” to “tissue,” which has certainly more than one meaning.

You talked about people fancying up their language. Why in the world do you think that we, and I include myself, as health communicators, are coming up with convoluted, more complicated language at the same time that people need to understand us more than ever?

Rima: I think this is a long-held tradition. I remember my ninth grade English teacher really encouraging all of us to expand our vocabulary. I think it’s a great idea.

I remember working with Diana Chapman Walsh who had been the chair of my department. We were writing an article together. She sent back my first draft and highlighted a couple of words. She put a circle around the word “utilize” and said, “Rima, is there something wrong with the word “use”? Is that not respectable?” Of course, that made me laugh, and it stands as a good example.

I think it’s very important. As people who enjoy theater, plays, novels and poetry, we certainly need to expand our vocabulary. There’s nothing wrong with a wonderfully rich language.

When we’re focused on providing people with tools for action, as we need to do with health, we have to be careful. We must give careful directions about taking care of yourself, taking care of a wound and taking medicine. We have to be very careful to make sure that our language is direct, clear and simple. That is not the time for fancy language or expanding vocabulary.

Helen: I know that you’re looking very closely and doing a lot of research about deconstructing the language that we are using and looking at what we are asking of our patients and families in terms of our instructions. That has very much of a linguistic and literacy base to this. Can you tell us a little bit more about what we are asking of people and how language and words make a difference?

Rima: Yes. The deconstruction task that I’ve taken on with members of our health literacy team begins with deconstructing activities. Let me just give you an example that has to do with chronic disease management.

We very often talk about an activity such as taking medicine. That provides a good, and perhaps very simple, example of how to deconstruct an activity. When we look at that activity of taking medicine, we can break it down into component parts.

There are many different tasks involved in taking medicine. For example, in order to do that, you have to get a prescription filled, bring the medicine home and be able to read the label. If, as is true for many people, you happen to be taking other medicines, you have to differentiate Medicine A from Medicine B. You really have to read the label with a great deal of care and be able to at least recognize, if not pronounce, the name of the medicine.

You have to be able to read and comprehend the directions. The directions are very frequently poorly written. That’s why there’s a big movement afoot to really improve directions on labels for medication.

Let’s say you’re told that you need to take this medicine on an empty stomach. That is a jargon term. You have to be able to be familiar with the words of the trade. An empty stomach means not just that you haven’t eaten for the past two hours when you take the medicine but that you’re not going to eat for another two to three hours. That’s not clearly directed.

Other activities have to do with looking at the time that you’re taking the medicine and being able to use a clock. You need to be able to look at the days of the week that you’re going to take the medicine. You might take some arthritis medicine only once a week.

You need to be able to track and monitor these activities and perhaps use a calendar to make sure that you don’t run out of medicine. This means that you need to know when you have to get a refill so that you’re not skipping a couple of days.

I don’t mean to go on and on with that, but as you can see, that activity of taking medicine really covers a wide variety of tasks.

In our deconstruction process, we identify the tasks that people have to engage in. We also simultaneously identify the tools that people need to use in order to accomplish those tasks: a label, clock and calendar. Then we were able to identify the literacy skills that people need to apply to accomplish the task and use the tools.

Helen: Listening to your list, I’m totally exhausted. I didn’t count how many different tasks there were, but I would guess that for your example of taking one medicine, and that’s all you were talking about, you must have had 15 or so separate tasks that we are expecting and assuming that people can do.

My background is an occupational therapist. I’m used to breaking activity down into its simplest components. The fact that you were looking at the whole of what we are asking in healthcare is really quite fascinating.

Am I the only one who hadn’t thought about this, or is this a factor that’s going on throughout healthcare? Are we all equally un-savvy about what we are expecting and assuming our patients and families can do?

Rima: In order to help grow this field, I am like you, asking for a systemic change as a matter of fact. We’re talking to a wide variety of professional groups. This activity comes as a surprise to many people, but they really enjoy engaging in it, and I think we learn a great deal from it.

I had the privilege of being in a room, over the course of several meetings, with adult education research people, adult education practitioners, nurses, doctors and public-health folks. We, for example, looked at all chronic diseases. We listed all the activities that people need to engage in to manage your chronic disease. We highlighted those that are common to all chronic diseases. Then together we began to deconstruct those activities.

I’ll tell you, it really took the contribution of all of us from different fields and perspectives to begin to break that down. We found that to be extraordinarily insightful.

I’ve shared this widely. There are a number of colleagues who have really put this into action, including Dean Schillinger with diabetes management and Darren DeWalt in North Carolina with hypertension and heart disease. People are indeed beginning to do this and are finding that it’s extraordinarily helpful.

Helen: I know you’re a researcher, and that’s a large part of the work that you’re doing. I appreciate and I get that sense of breaking this down. Is there a way to measure or quantify this and do it in a consistent way so that we know more about those literacy demands in healthcare?

Rima: In part, we’ve done that. I worked, as I mentioned, with folks from the adult education sector. This is part of what had been the National Center for the Study of Adult Learning and Literacy, a publicly funded center. We produced training materials for the adult education sector. We focused on health literacy.

We focused on three different aspects, each of which relates to health disparities. The first is managing chronic diseases. The second is screening and early detection, or what we call prevention. The third aspect is access to care or navigating the health systems.

For each of those three very important health areas, we produced charts and concrete examples of how to break down the variety of activities. We produced a full set of materials for continuing education for adult education teachers – designed as a five session program with time in between to try out lessons in class. This material is available free and can be downloaded by anyone at www.NCSALL.net. It’s also available on my website at Harvard, www.HSPH.Harvard.edu/healthliteracy.

Helen: We will also be having that information on the Health Literacy Out Loud podcast website with this podcast.

I’m getting the profound sense from you that healthcare, health communication and health understanding is really about the interaction between anyone who communicates, like the providers or public health people, and anybody on the receiving end. That’s not quite the same health literacy definition I know. Tell me more about how you would frame this within the definition of health literacy.

Rima: Helen, I think you just did it very well. You highlighted what the IOM (Institute of Medicine) report highlighted as well. Health literacy does not reside in individual skills. Health literacy really needs to be thought of as an interaction.

I might be a very highly literate person, but truth be told, if you give me a physics text and test my comprehension in regard to that physics text, I’m not going to come across very well. It’s been too long that I ever paid attention to issues of physics. I was never very well schooled in it to begin with.

If the text is difficult, no matter what your skills are, they’re not going to show up well. Literacy has to do with the interaction of the demand side and skill side. I think that we really do need to re-examine our definition of health literacy. There’s too much emphasis on the skills of individuals and not enough emphasis on the demand side and expectation side.

Helen: That’s fascinating. I love to see that. I almost see that like an equation with the demand side and the skill side on one of those balance scales where they have to balance each other out. Is work being done to alter that definition to include this more interactive and inclusive perspective?

Rima: I think so. I think people tend to skip over that in the IOM report, so it’s incumbent upon us to highlight that over and over. I know that you have a more balanced definition of health literacy on your website. I think we need to speak out about that. We need to have a bit of a movement to modify the existing definition of terms so that we do understand, as you pointed out, that there is a balance we need to pay attention to.

Helen: Thank you for mentioning my definition. I have been using this for years, and it probably comes out of my core in clinical practice. My definition has not been accepted by anybody else but me, I don’t think.

The way I frame health literacy is that it has to do with mutual understanding. I say that health literacy happens when patients, or anyone on the receiving end of health communication, and providers, anyone on the giving end of health communication, truly understand one another.

At that point, when I’m presenting in person, I actually lace my hands together to show that mutual communication and that no one side is either more at fault, more to blame or more powerful than the other. We are all in this one together.

Rima: I’m totally supportive of that. Wonderful.

Helen: Thank you. I don’t think this definition has ever taken off. I’m not a researcher. I don’t know if it’s quantifiable and measurable, but it certainly gets to the core of why I feel so passionately about health literacy.

From here, gaze into your crystal ball. Where would you like to see all this going?

Rima: I’d like us to fill in some of the gaps. For example, a good deal of attention has been paid to written materials and reading skills. Literacy, of course, contains five core components. Reading is only part of it. There’s reading, writing, oral exchange of listening and speaking, and of course, numeracy.

I think that the field is only now beginning to venture outside of the initial focus on reading, writing and materials to really look more closely at the oral exchange and to include and understand the demands that have to do with numeracy.

Numeracy includes the quantitative skills of adding, subtracting, multiplying, dividing and measuring that we’re asking people to do all the time. Also, numeracy incorporates an understanding of the mathematical concepts that we expect people to grapple with.

Second, I know that a number of new fields are now being more attentive to health literacy. You’re seeing articles that have to do with surgery, dentistry and mental health. What’s lagging behind, quite frankly, is my profession of public health.

I think that we need to be more attentive to the assumptions and demands that we make. Some of those have to do with disease prevention, early screening and detection, and messages that we provide people hoping that they will take action based on information. I think we need more coming in that area as well.

Finally, the missing element is that we need to have a clear understanding of what will bring about improvements and how to make change. We need to have good studies of the kinds of changes that are needed and recommended. Once they are under scrutiny and we know what works and what does not work – then will improve the situation.

Helen: We’ve been talking a lot about the deconstructing. What about the barriers in healthcare? What about that environment in which this is not taking place? Talk about that a little bit, please.

Rima: We’ve been looking at the health literacy environment of social service agencies as well as hospitals and health centers. Actually, we developed a workbook available for free online at the two sites that I mentioned earlier. This workbook helps people understand that any physical space may also use spoken or written words, and those words can sometimes get in the way.

We’ve developed a process that enables people to enter a facility, walk about and look about. They are able to examine signage, forms and paperwork. They can see the way people talk to one another and the words that people use and begin to assess the demand that these facilities are making. This process determines whether or not the use of the word helps you find your way and accomplish your tasks or gets in the way and erects unnecessary barriers.

Helen: I’m thinking again about your dentist who switched from gum to tissue. That could be the most befuddling of messages, looking at that environment. It just is striking me what a barrier we can put into place without even thinking about it.

Rima: Wonderful. It’s like a sign that says “Nephrology unit this way.” We know that nephrologists and all the staff who work with them know where they work. The poor patient with the kidney disease may not know that that sign is important to pay attention to.

Helen: You’re doing such great work and just bringing our awareness to this. I really thank you for being such a leader in making this message so clear about the work we have ahead of us.

Rima: Thank you. It’s an absolute pleasure.

Helen: Wow! I learned a lot, and I hope you did too.

Health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there, you’re welcome to sign up for the free newsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find more information about each episode along with important links, such as the ones that Dr. Rudd mentioned today, at the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

Did you like this podcast? Did you learn something new? I did. If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne. 

Dr. Isham is active nationally, as well. He works with a wide range of associations including America’s Health Insurance Plans, Alliance of Community Health Plans, Accreditation Association for Ambulatory Health Care, and Bridges to Excellence. Dr. Isham chairs the Institute of Medicine’s (IOM) Roundtable on Health Literacy.   

In this podcast, he talks with Helen Osborne about economic side of health literacy. Topics include:

• Framing health literacy economics in terms of effectiveness and efficiency
• Looking at the relationship between health literacy and health outcomes
• Making a compelling case for organizations to invest in health literacy

More ways to learn:

• IOM Roundtable on Health Literacy, http://www.iom.edu/?id=32786
• Isham G, Halvorson G, 2003. Epidemic of Care: A Call for Safer, Better, and More Accountable Health Care. Jossey-Bass: San Francisco, CA.
• Nielsen-Bohlman L, Panzer AM, Kindig DA, (ed), 2004. Health Literacy: A Prescription to End Confusion. The National Academies Press: Washington DC.
• Osborne, H. “In Other Words…Making a Bottom-Line Case for Health Literacy,” On Call magazine, Sept/Oct 2006. Available at http://www.healthliteracy.com/article.asp?PageID=4804

Ceci started as a commissioned officer in the US Public Health Service. During her more 20 years there, Ceci developed and led numerous health education programs. In fact, she received a commendation from the Surgeon General for her work educating the public about cancer.

Len comes to health literacy via adult education, volunteering for many years as a tutor of non-readers. Len’s first career was as a Navy engineer and among his many accomplishments he helped simplify instructions for crews working on ships and submarines.

Len & Ceci co-authored the award-winning book, Teaching Patients with Low Literacy Skills. In their non-profit business Patient Learning Associates, Inc., Len and Ceci have written guidelines for many important projects and analyzed the suitability of over 2,000 healthcare materials in virtually all formats. They have presented at more than 200 health literacy workshops, training thousands of health professionals in all disciplines.

In this Health Literacy Out Loud podcast, they talk with Helen Osborne about the past, present, and future of health literacy. Topics include:

• How health literacy began more than 30 years ago
• Why health literacy was important then and is even more so today
• Strategies to improve communication and assess if messages are understood
• Ceci & Len Doak’s vision for health literacy in the future

More ways to learn:

• Doak, Doak, & Root, Teaching Patients with Low Literacy Skills, Second Edition. 1996. Available for free at Harvard University School of Public Health’s Health Literacy Studies website, http://www.hsph.harvard.edu/healthliteracy/resources/doak-book/
• Houts, Doak, Doak, Lascalzo. “The role of pictures in improving health communication:  A review of research on the benefits of pictures on attention, comprehension, recall, and adherence.”  Patient Education and Counseling, 61 (2006) 173-190, 2005 Elsevier Ireland Ltd.
• Osborne, H. “In Other Words…Can They Understand? Testing Patient Education Materials With Intended Readers,” On Call Magazine, Nov 2001. Available at http://www.healthliteracy.com/article.asp?PageID=3811

Click here for a transcript of this episode:

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month, and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some amazing people. You will hear tips, strategies and other great ideas for clearly communicating your health message. Beyond learning what to do and why to do it, I hope that the people you meet inspire you as they inspire me to make a health literacy difference.

Today, I’m talking with Cecelia, or Ceci, and Leonard, or Len, Doak, a husband-and-wife team who I consider the founders or grandparents of health literacy. Their book, workshop, articles and all around wisdom and support has inspired many of us, myself included, to improve health understanding.

Ceci started as a commissioned officer in the U.S. Public Health Service. During her more than 20 years there, Ceci developed and led numerous health education programs. In fact, she received a commendation from the Surgeon General for her work in educating the public about cancer.

Len comes to health literacy via adult education. He was a volunteer for many years, tutoring non-readers in how to read. Len’s first career was as a Navy engineer. Among his many accomplishments, he helped simplify instructions for crews working on ships and submarines.

Together, Len and Ceci coauthored the award-winning book, Teaching Patients with Low Literacy Skills, which is now available for free from Harvard University’s School of Public Health website.

Len and Ceci work together in their not-for-profit business, Patient Learning Associates, Inc. Together, they have written guidelines for numerous projects that analyze the suitability of more than 2,000 healthcare materials in virtually all formats.

They have presented at more than 200 health literacy workshops across the country and around the world, and have trained over 11,000 professionals of all disciplines. Talk about making a difference! Wow!

Personally and professionally, Ceci and Len are my heroes. Thank you for talking with us, and welcome to Health Literacy Out Loud.

Len: It’s tough to be a hero.

Helen: You are my heroes. I love seeing you whenever we meet at conferences all across the country. To me, the two of you are the trendsetters, the groundbreakers, the people who got health literacy started. Do tell. How did all this begin?

Len: I guess the best way to say it is that our work in health literacy started with our marriage in 1973.

Ceci: I was in continuing education for physicians and allied health personnel way at the other end of the continuum from literacy. When I met Len and he told me he was volunteer tutoring people who couldn’t read and write, I said, “My heavens! How do people with low literacy skills understand medical advice? What happens when they go to the doctor?”

Len: I said, “Often, they don’t understand. They may pretend to understand to avoid embarrassment.” Of course, that helps fuel the belief of many doctors and nurses, “We don’t have any of those low-literate people in our practice.”

Ceci: That’s where we started.

The thing that’s important here is that people who don’t read well are not lacking in intelligence. As Roger Shuy pointed out, who is a reading specialist, “People in general make judgments about other people by the way they talk.” If they speak in broken phrases, like, “I done took what you told me to,” or “Them and those,” we sort of click in our minds, “This person isn’t very bright.”

What we’ve started doing is separating out some of the misunderstandings and misconceptions about literacy. People are not dumb. It’s a matter of skill.

Helen: How did this get started?

Len: My first student was a man named Alan. He was 26, married and had children. He had a good job as a machinist in a small town in upstate New York. He couldn’t read or write. He didn’t even know the letters in the alphabet.

He could sign his piecework as a machinist because somebody had taught him by rote how to write his name. He practiced it a hundred times. You could learn to write your name in Arabic backwards if you practiced it a hundred times.

I asked him, “How do you get by at work? Don’t you have to read blueprints?” Allen said, “Yes, but we don’t get them too often.” I said, “What do you do when you get them?” He said, “I steal a print and take it home. My wife reads all the dimensions, materials, lubrications, tolerances and so forth to me. I memorize that. Then I go back to the plant and make it.”

Was this man lacking intelligence?

Helen: It sure doesn’t sound that way.

Ceci: That was one of the first things when we started workshops and working with health professionals, clarifying this point. What we’re talking about is building a skill and helping health professionals work around the problem of literacy.

We’re not trying to solve the problem. We’re trying to manage it and work around the literacy issue so people can more readily understand. That means simplifying instructions.

Helen: That’s an important point. I like the way you frame it. It’s trying to manage it or work around it, not trying to introduce those literacy skills. As a health provider, I know that we don’t have time to deal with that when we’re in the middle of a clinical encounter. It’s just about how to work with that.

Ceci: The reading field is made up of people who have spent their careers learning the skills of teaching people to read. We don’t want to do that. We want to work around the problem so the patient walks out of the office knowing what to do and how to do it.

The definition of health literacy, which came out in the Department of Health and Human Services bulletin for 2010, is, “The degree to which individuals have the capacity to obtain, process and understand basic health information.” It’s not just a matter of reading. It’s also understanding and being able to process the information.

Helen: Thank you for that. Can I take some steps back with you, please? It’s 30-some years ago. You’re working with Alan. You two are newly married. You’re realizing that not everybody understands health information.

It’s quite a leap from there to what you just told me about a definition that’s in Healthy People 2010. A tremendous amount of work must have happened in that time from your very first awareness. How did health literacy get started as a field or discipline for study that people are really paying attention to? What happened in those early years?

Len: When we first started doing workshops, people were terribly hungry for a solution. The doctors, nurses, dieticians, nutritionists and other people who were on the firing line in contact with patients realized that the patients didn’t understand, but they were trained formally using college-level words.

They didn’t know how to cope with and manage this and make their message understandable and motivating to people.

Ceci: One of the first things we did was to look at the literature on health education and literacy. We found that there were only three professional papers written before 1979 on health literacy.

Dr. Pat Lawrence at the University of North Carolina did a research project on how many pamphlets or materials were available on diabetes in health literacy. This was in 1979. She found that there were only 12 publications with a reading level of Grade 7 or below, and 10 of those were on single-concept sheets that really didn’t stress very much about the behavior of the patient.

One characteristic that we noted as we viewed health instructions back in the early days was that the instructions followed the medical model of epidemiology, talking about the disease process, what happens as far as the body is concerned and so on. Then at the very end, it got to the behavior.

What we stressed in literacy was just the opposite. Start with the behavior. Don’t worry about whether or not they understand the disease process. The thing to worry about is whether they understand what to do when they go home.

Helen: You now have this new awareness. You see that there’s a problem. There’s scant little research out there. What happened next? How did this go from just an occasional person interested in this topic to really becoming a movement and discipline in its own right?

Len: It happened rather gradually and over a period of years, frankly. One of the things we did was test the reading and comprehension skills of 100 patients at a public health service hospital. Then we tested the readability level of the materials these patients were given and told to follow.

We found that there was a big gap. The patients, on average, read at the seventh-grade level. The materials averaged at the twelfth-grade level, a five grade level gap.

Helen: That’s huge!

Len: The study results were published in “Patient Counseling and Health Education,” Vol. 2, No. 3, 1980. That began to catch attention.

Ceci: We did work for the division of hospitals for the Public Health Service. This was back in the days when the Public Health Service still had hospitals. The clinical directors were shocked.

We were invited to present papers at their clinical sessions, not just at their typical educational sessions. It was when we got into the clinical world that things really began to happen.

Helen: You started with some workshops and papers and assessing some materials. Tell us what happened next.

Len: One of the things we did to make it more meaningful for the participants in our workshops was to ask them in advance to send some of the materials in any mode of communication that they were using and found troubling, or that they were developing. We would give them feedback as to the strong points and weak points.

We began to develop a sense of what worked and what didn’t. We tested some materials that were sent in to us and decided that we would like to evaluate those with patients.

We visited a kidney dialysis clinic and arranged their permission to talk with patients about materials. One of the materials we wanted to test was diet. If you’re on dialysis, you have to watch your diet. You should eat red meat, and the instructions said you should avoid shellfish and poultry.

I asked a gentleman, “Fred, would you read this for me?” He read it. I said, “What’s it all about?” He said, “It’s about what you’re supposed to eat.”

Helen: That’s good.

Len: I said, “What do you eat for dinner?” He said, “I sometimes have chops or steak, but fried chicken is what I eat the most of.” I said, “Fred, what about poultry?” He said, “I never eat poultry! We’re not allowed to have that.”

Do you ever see “poultry” listed in the supermarket? No. They don’t sell poultry. They sell chicken or turkey.

Helen: That’s an example of a category word. When we in healthcare are communicating in that way, our messages are just gone. They’re not nearly as effective as we’re pretending they are.

When I first heard about health literacy, my awakening was in 1995. I was working in a community-based hospital in one of the poorest parts of Boston at that point.

I read an article in The Journal of the American Medical Association about health literacy and how many people have trouble understanding. I looked around at my population, clunked myself on the head and said, “Yes, these are the folks I’m working with.”

I didn’t need to replicate the research. I just thought, “There’s a problem. I get it. What can I do about it?” At that point, there was that one article, and I found exactly one book written by Doak, Doak and Root, your book.

I found that for the underpinnings, the bible and the fundamental for all the work that I did for many years thereafter, your book is just a tremendous resource.

Len: Thank you.

Helen: Can you tell us a little bit more about that book?

Len: It started, of course, from the workshops. Many of the people in the workshops asked, “Isn’t there a book where I can read about all this?”

We had people who had just gotten their masters in public health and education who said, “They never even mentioned readability issues to me. I’ve never heard of those things before.” After hearing that a number of times, we decided that we would try to put together, based on our workshops, a book that would be a reasonable, practical resource.

Helen: Your book is just a wealth of how-to strategies. Your book, Teaching Patients with Low Literacy Skills, Second Edition, is available for free online through the Harvard University School of Public Health website. We will have a link to that resource on the Health Literacy Out Loud website, as well as others that you mentioned. Thank you for that.

You have something in there that I often use and refer to as almost the gold standard of materials. That’s your SAM, Suitability of Assessment of Materials. Could you talk about that a little bit, please? Not only do we need to do the right thing, but how do we know we’re doing the right thing?

Len: We always had some kind of strategy, but it wasn’t until we were doing a study for Johns Hopkins University on nutrition materials and their suitability that we created this.

They had a selection of 75 materials, and they wanted to know which ones were really suitable for patients across the board, including patients with limited literacy skills. We re-looked at our research and the practice and came up with a set of criteria that you could measure numerically for each piece of material.

Ceci: The women-infant-children program had a very good checklist for the materials they were using, but it was limited mostly to the reading level.

At that time, visuals were very seldom considered material for examining or analyzing for low literacy. Yet visuals are the first thing that people with low literacy skills look at.

We decided to benefit from the checklists that were already available, but expand them to include the points that we felt for low literacy were critically important. That included culture.

Len: That was one of the first comprehensive, quantitative measures of suitability of materials. Today, it is being used routinely at many medical centers throughout the United States.

Helen: I’m hearing lots of strategies from you about concepts, categories, contexts and value judgments and paying attention to those. What would you see in a perfect world? If this were a health literacy perfect world, what would we all be doing?

Len: One would be for health literacy to be integrated and made a part of the education of doctors, nurses and other healthcare professionals. It would be an ongoing thing, and you wouldn’t have to episodically do training and workshops.

Ceci: In the health literacy field, we need rewards. Institutions need rewards. Healthcare professionals need rewards that their work is producing something.

A number of the big medical care institutions like Kaiser Permanente have included literacy in their criteria for accreditation. I think that is also an important step so people in the institutional field know that by trying to meet literacy standards, they are also helping their own institution achieve accreditation standards.

Helen: I’m hearing from both of you that in this perfect health literacy world it takes the efforts of many. It takes the day-to-day professionals to do what they need to do, using the pictures and simple words and putting information into context in a person’s life, but it also takes the accreditation agencies and literacy specialists we can learn from.

As you two did in your life, it takes a marriage of all of us to make healthcare more understandable.

Len: That’s very well stated.

Helen: Thank you so much for sharing your historic perspective, views and visions. You’re terrific.

Len: Thank you. So are you, Helen.

Ceci: You’re the new pathfinder.

Helen: I’m inspired by the Doaks and hope you are, too, but health literacy isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website, www.HealthLiteracy.com. While you’re there, feel free to sign up for the free What’s New in Health Literacy Consulting enewsletter.

I’m excited about these podcasts as tools for learning and teaching. New episodes come out about every two weeks. You can find more information as well as important links and the references we were talking about today on the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

If you’ve like what you’ve heard on these podcasts, tell your colleagues and friends about Health Literacy Out Loud. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.

In this podcast, he talks with Helen Osborne about communication strategies for talking health to men. Topics include:

• Gender as it relates to cultural competence and health disparities
• How and why men receive health messages differently than women
• Strategies providers can use to teach men about illness and well-being

More ways to learn:

• Men’s Health Network, PO Box 770   Washington, D.C. 20044. http://www.menshealthnetwork.org. This is the lobbying organization for men’s health in the U.S. which also promotes National Men’s Health Week.
• Osborne, H. “In Other Words… What’s the Difference? . . . Does Gender Matter When Communicating About Health?” On Call magazine, December 2004. Available at http://www.healthliteracy.com/article.asp?PageID=3787
• Senay, E & Waters, R. (2004). From Boys to Men: A Women’s Guide to the Health of Husbands, Partners, Sons, Fathers, and Brothers. Scribner: NY
• Zaman, F. and Underwood, C. (March 2003). The Gender Guide for Health Communication Programs. Center Publication No. 102. Baltimore: Johns Hopkins Bloomberg School of Public Health / Center for Communication Programs. Available at http://www.jhuccp.org/pubs/cp/102/102.pdf
• Zoske, J. Men’s Health & Wellness: 50 Health Promotion Ideas for Educators, Planners, and Practitioners. 1998. Contact Zoske directly at: Siena College, Social Work House, 515 Loudon Rd, Loudonville NY 12211.

In the podcast, she talks with Helen Osborne about intergenerational health communication. Topics include:

• How college students and older adults are often more alike than different
• Ways different generations can learn from, and teach, one another
• Why service learning matters and ways you can get involved

More ways to learn about intergenerational teaching and learning:

• Agricultural & Extension Education: Intergenerational Programs and Aging, http://agexted.cas.psu.edu/FCS/mk/Program.html
• Boston University: The Intergenerational Literacy Project, http://www.bu.edu/ilp/staff/
• Hamel P, “Interdisciplinary Perspectives, Service Learning, and Advocacy,” Topics in Geriatric Rehabilitation, 2001: 17 (1) 53-70.
• Neighbors Growing Together: Virginia Tech Intergenerational Programs, http://www.intergenerational.clahs.vt.edu/neighbors/index.html
• National Institute of Health, NIH Senior Health:  http://nihseniorhealth.gov/
• National Service-Learning Clearinghouse, http://www.servicelearning.org
• National Youth Leadership Council, http://www.nylc.org
• Sequor Foundation: Intergenerational Programming, http://www.serviceleader.org/new/managers/2003/04/000080.php

In this podcast, she talks with Helen Osborne about an online health literacy community. Topics include:

• What the “Health & Literacy Discussion List” is and ways to participate
• How this List creates a sense of community and collaboration
• Examples of projects, actions, and advocacy that arose from this List

More ways to learn:

• Health & Literacy Discussion List. To join, read recent posts, search archives, and view upcoming events go to www.nifl.gov/mailman/listinfo/healthliteracy
• Health & Literacy Special Collection at http://healthliteracy.worlded.org
• McKinney J, Kurtz-Rossi S. Culture, Health, and Literacy: A Guide to Health Education Materials for Adults with Limited English Literacy Skills. World Education, 2000. Available at http://healthliteracy.worlded.org/docs/culture
• McKinney J, Kurtz-Rossi S. Family Health and Literacy:A Guide to Easy-to-Read Health Education Materials and Web Sites for Families. World Education, 2006. Available at http://healthliteracy.worlded.org/docs/family/fhl.pdf
• Osborne H. “In Other Words…Communicating Health Information Through Community Coalitions,” On Call Magazine, June 5, 2008. Available at http://www.healthliteracy.com/article.asp?PageID=7585
• Taylor, J. “Tapping Online Professional Development Through Communities of Practice: Examples from the NIFL Discussion Lists.” Adult Education and Literacy Journal, Vol. 2, No. 3, Fall 2008. Available at,
  http://www.nifl.gov/nifl/publications/pdf/ABELJournal08PD.pdf
• Wenger, E. “Communities of Practice” available at http:///www.ewenger.com/theory/index.htm

In this Health Literacy Out Loud podcast, he talks with Helen Osborne about visual literacy. Topics include:

• What visual literacy is and how it relates to health literacy
• Ways visual literacy helps readers interact with information
• How to adapt visuals to meet the needs of specific audiences

More ways to learn:

• International Visual Literacy Association, http://www.ivla.org
• Visual Learning, http://en.wikipedia.org/wiki/Visual_learning
• Visual Literacy, http://en.wikipedia.org/wiki/Visual_learning
• Information Design, http://en.wikipedia.org/wiki/Information_design
• Target ClearRX (click” Meet the Inspiration” to read more about the pill bottle), http://sites.target.com/site/en/health/page.jsp?contentId=PRD03-003977
• Edward Tufte – Presenting Data and Information Books and Workshop, http://www.edwardtufte.com/tufte/index

Books & articles:

• Burmark, L. (2002) Visual Literacy: Learn to See, See to Learn.
• Clark, R.C. & Lyons, C. (2004). Graphics for Learning.
• Doak, C.C., Doak, L.G., Root, J.H., 1996. Teaching Patients with Low Literacy Skills (2nd ed.). (Chapter 7: Visuals and How to Use Them). http://www.hsph.harvard.edu/healthliteracy/doak.html
• Gangwer, Timothy Patrick (2nd Edition out Feb. 15, 2009) Visual Impact, Visual Teaching: Using Images to Strengthen Learning
• Hodgdon, L. A. (1995). Visual Strategies For Improving Communications: Practical Support for Home and School.
• Lambert, David and Browning Wroe, Jo (2008) Visual Literacy (Bk. 1) Lipton, R. (2002). Designing Across Cultures: How to Create Effective Graphics for Diverse Ethnic Groups.
• Lohr, Linda L. (2007) Creating Graphics for Learning and Performance: Lessons in Visual Literacy (2nd Edition)
• “Thoughts on Visual Literacy,” http://www.hsph.harvard.edu/healthliteracy/doak.html
• “Visual Literacy in Higher Education,” http://net.educause.edu/ir/library/pdf/ELI4001.pdf
• “Information Design: It is all in the process,” http://net.educause.edu/ir/library/pdf/ELI4001.pdf

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In this podcast, Helen Osborne talks with several CPAC conference participants about their tips for good health communication:

• Sharon Dwyer talks about the power of stories. She highlights how stories can help remove fear, motivate people, and provide support and human connection.
• Susan Seidler speaks about reaching out to seniors in the community. She also highlights ways to improve communication with seniors, in person and in print.
• Michael Pyles, PhD highlights the value of community partnerships, cultural diversity, and how listening is key to action.
• Melanie Dempsey BS, RT(R)(T), CMD discusses the importance of teamwork and how each professional helps with education. She also talks about how stress affects patients’ understanding
• Laura Humbertson MS discusses how information and resources help empower patients.
• Donna Moore RN speaks about her work as a Nurse Navigator. This includes listening to patient’s fears, finding and knocking down barriers, and giving patients hope.

More ways to learn:

• Virginia’s Cancer Planning Action Coalition, http://www.virginiacpac.org/pages/about.html
• Osborne, H. “In Other Words…When Providers Are Patients,” On Call magazine, July 24, 2007. Available at http://www.healthliteracy.com/article.asp?PageID=6340
• Osborne, H. “In Other Words… Communicating When Naked: My Perspective as a Patient,” On Call magazine, May/June 2006. Available at http://www.healthliteracy.com/article.asp?PageID=4221

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In this podcast, he talks with Helen Osborne about health literacy and management of chronic disease. Topics include:

• What disease management programs are and why health literacy matters
• Ways to communicate with patients including by telephone, mail, and the Web
• How helping patients understand their conditions can improve health outcomes

More ways to learn:

• Osborne, H. “In Other Words…Confirming Understanding With the Teach-Back Technique,” On Call magazine, November 20, 2007. Available at http://www.healthliteracy.com/article.asp?PageID=6714
• Osborne H, 2004. Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. Sudbury, MA: Jones & Bartlett. To order, go to most online bookstores or the publisher’s website at http://www.jbpub.com/catalog/0763745502/

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In this podcast, he talks with Helen Osborne about generating hospital-wide interest and activity about health literacy. Topics include:

• Why health literacy is important to address hospital-wide
• Health literacy strategies, initiatives, and lessons learned
• Wishes and vision for the future in terms of health literacy

More ways to learn:

• Lee Joesten. You can reach him by email at Lee.Joesten@advocatehealth.com
• Advocate Lutheran General Hospital, http://www.advocatehealth.com
• American Medical Association Foundation’s Health Literacy Kit, http://www.ama-assn.org/ama/pub/category/9913.html
• Ask Me 3 (initiative to help patients ask questions), http://www.npsf.org/askme3/

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In this Health Literacy Out Loud podcast, she talks with Helen Osborne about using humor and graphics to convey health information. Topics include:

• How bulletin boards help draw attention to important health information
• Ways to use color, humor, and graphics to engage and empower patients
• Tips to create your own bulletin boards or build on what others have done

More ways to learn:

• CDC Public Health Image Library: http://phil.cdc.gov/phil/home.asp
• Georgia Hospital Association’s (GHA) Partnership for Health and Accountability: www.gha.org/pha
• GHA Bulletin Board index: http://www.gha.org/pha/resources/bulletinboards/index.asp
• GHA Tobacco-Free Campus Toolkit: http://www.gha.org/pha/Community/TobaccoFree/Toolkit/index.asp
• Library of Congress, Prints and Photographs Online catalogue: http://www.loc.gov/rr/print/catalog.html
• Osborne, H. “In Other Words…Using Humor and Graphics to Convey Healthcare Essentials.” On Call Magazine, October 2007. http://www.healthliteracy.com/article.asp?PageID=6628

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In this Health Literacy Out Loud Podcast, she talks with Helen Osborne about using patient-centered communication to reach communities. Topics include:

• Baby Basics: Why this easy-to-read pregnancy guide was created and ways to use it in practice.
• How lessons learned from Baby Basics apply to many health situations including teaching about diabetes, smoking cessation and hypertension.
• Ways to evaluate and use simply-written materials in context of a person’s life and community.

More ways to learn:

• What to Expect Foundation website includes information about the book Baby Basics. Available at http://www.whattoexpect.org. You can reach Lisa Bernstein by email at lisab@whattoexpect.org
• Health Literacy Out Loud (audio CD). Helen Osborne talks with Lisa Bernstein about Creating and Using Excellent Written Materials. Available at http://www.healthliteracy.com/buy.asp?PageID=3672
• Osborne, H. “In Other Words… Helping Patients Ask Questions.” On Call Magazine, November/December 2006. This article includes quotes from Lisa Bernstein. Available at http://www.healthliteracy.com/article.asp?PageID=5179
• Osborne H, 2004. Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. Sudbury, MA: Jones & Bartlett. To order, go to most online bookstores or the publisher’s website at http://www.jbpub.com/catalog/0763745502/
• Zarcadoolas C, Pleasant AF, Greer DS, 2006. Advancing Health Literacy: A Framework for Understanding and Action. San Francisco, CA: Jossey-Bass.

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In this Health Literacy Out Loud Podcast, Archie Willard talks with Helen Osborne about what it is like to be a struggling reader in healthcare settings. Topics include:

• Growing up as a non-reader
• Learning to read as an adult
• How reading problems affect health understanding
• Ways we all can help

More ways to learn:

• Archie Willard. You can reach him by email at millard@goldfieldaccess.net
• Ask Me 3 (initiative to help patients ask questions), available at http://www.npsf.org/askme3
• American Medical Association Foundation’s “Health Literacy Kit” available at http://www.ama-assn.org/ama/pub/category/9913.html
• Osborne, H. “In Other Words… Healthcare Communication From an Adult Learner’s Perspective.” On Call Magazine, April, 2004. Available at http://www.healthliteracy.com/article.asp?PageID=3749
• Osborne, H. “Health and Literacy Working Together: A Health Literacy Conference for New Readers & Health Professionals.” This report highlights a very important meeting of adult learners and health professionals in 2004. Available at http://www.healthliteracy.com/article.asp?PageID=7493

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Mache Seibel, MD educates people about health and wellness. Some days his tools are a stethoscope and prescription pad. Other days, they include a microphone and guitar. Dr. Seibel is a practicing physician and professor of obstetrics and gynecology at the University of Massachusetts Medical School in Worcester, MA. He also is known as “Doc Rock,” a composer and performer who records music with health messages as part of his business, HealthRock.

In this Health Literacy Out Loud podcast, Dr. Seibel talks with Helen Osborne about using music and song as a tool of health communication. Topics include:

• How music and song stimulates the brain
• Ways clinicians (even non-musical ones) can use music
• Songs with health messages for all people of all ages
• Music as entertainment, education, and call to action

Mache Seibel sings most of the songs on this Health Literacy Out Loud podcast. His daughter, Sherry Seibel, sings “Mirror Set Me Free.” To hear more or order the full versions, please go to the HealthRock website at http://www.healthrock.com

More ways to learn:

• Huron, D. “Science & Music: Lost in music.” Nature 453; 22 May 2008.
• Osborne, H. “In Other Words…Using Music and Song as Tools of Health Communication.” On Call Magazine, March 24, 2008. Available at http://www.boston.com/jobs/healthcare/oncall/ and http://www.healthliteracy.com/article.asp?PageID=719
• Peterson DA, Thaut MH. “Music increases frontal EEG coherence during verbal learning.” 2006; 412(3):217-221. Neuroscience Letters
• Seibel MM. “Health through music and song” Sexuality Reproduction & Menopause. 2006; 4(2):46-47.

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Adam Weiss is a successful educational podcaster and podcast consultant. An expert interviewer and communicator, he aims to show that podcasting is more about story, presentation, and technique than fancy gear and tech toys.

He was the creator and of the popular Current Science & Technology Podcast for the Museum of Science in Boston, which he hosted for more than two years. He has also created the critically acclaimed Boston Behind the Scenes Podcast as well as the newly-launched Puzzle Podcast.

In this Health Literacy Out Loud podcast, Adam Weiss talks with Helen Osborne about:

• What podcasts are
• How people can access and download podcasts
• Why podcasts are an emerging and important tool of communication

More ways to learn:

• Boston Behind the Scenes, http://www.bostonbehindthescenes.com
• PodCamp Boston, http://www.podcampboston.org
• iTunes store, http://www.apple.com/itunes/overview/

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