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 Valerie Fletcher, who is executive director of the Institute for Human Centered Design, a nonprofit, international educational and design company based in Boston, Massachusetts. Valerie oversees a wide range of projects focused on making the world and the web inclusive and accessible to all.
Valerie started her career as a textile designer creating clothing for women as they age. She now applies these same design principles to physical spaces as well as to communication, information, policies and attitudes. Valerie’s focus is international, serving as an advisor to the Singapore government as well as the United Nations Department of Economic and Social Affairs.
Valerie:Thank you, Helen. I’m delighted to be here.
Helen:You and I have known each other for many years, and we share a commitment to universal design and health communication. In fact, I remember interviewing you for an article I wrote in 2001 about universal design and health communication. I think we’re at the forefront of this.
For our listeners, let’s put all this in context. What do we mean by “universal design?” Then we’ll go on to how does that apply to health communication?
Let’s take it from the top. What do you mean by “universal design?”
Valerie:Thanks for asking, Helen. Part of what I always try to do is make sure people don’t construe universal design as a synonym for accessibility. It really is different. It is not code or law. It is a way of thinking of that design. It’s a framework for the design of places, things, information and communication policy that focuses on the user and the widest range of people operating in the widest range of situations without special or separate design.
Helen:You’re focused on the widest range. Could you make that more human and put it in everyday terms?
Valerie:Part of what we are compelled by is the incredible diversity of human experience in terms of ability, changes and function. There’s the fact that we survive more and live longer. Look how many of us live with being survivors of cancer or very serious accidents that not so long ago would have taken our lives.
Some people refer to themselves as people with disabilities. Many more people with functional limitations of some sort or another simply think of their situation as a health condition. For many of us, it’s just the reality of being human.
We’re looking at a 21stcentury reality of incredible diversity of our abilities. Part of that is related to aging. It’s the human condition of the 21stcentury cause for celebration forcing some of us to pay attention to what we need to make that work better for all of us.
Helen:It really is all of us. I love that word “universal” in there. I’ve always promoted the fact that Health Literacy isn’t just about them and what they can or cannot do. It’s about all of us. I find this a very beautiful way of including all of us in this. Could you give an example of what universal design would look like in health communication?
Valerie:Let me use an example that will likely be familiar to many of your listeners, which is an older person meeting with a clinician. That may well be the staff physician. There’s the fact that the physician is assuming the elder person is able to appreciate everything that is communicated verbally, even just the most simple exchange of information.
The physician would have no idea that the person has a hearing loss that has been unknown for many years. The average person goes about 12 years before they take action to get a hearing aid, for example. They make an assumption that somebody is fully cognizant of what they’re saying when they may be missing a sizeable portion of what they’re saying but be of a generation that would not think to interject, “What was that again?”
It is commonplace. It happens thousands of times every day that someone is living alone or perhaps with a spouse who is of equal age, and they have the same kind of hearing as the patient, and the doctor has no idea.
Helen:I see this in some of the people I hang around with too. I am getting the sense that some of my friends are having hearing loss of some variety, and I don’t think they’ve yet admitted it to themselves. I’ve noticed that my friends now won’t go to a noisy restaurant. They kind of miss what people are saying or say that people mumble all the time. Could it be that very individual doesn’t even know to him or herself that there’s diminished hearing?
Valerie:I think that’s very common. I think the first impulse is to assume the world has just gotten louder, and that’s probably true. It doesn’t take away from the fact that many of us have hearing loss.
One of the really disturbing statistics of the last year or so has been that there are now 10 million baby boomers who are hard of hearing already, outdistancing the 9 million people with hearing loss who are over 65.
Helen:I’ll just put in this plug to the podcast listeners who are using their earphones. Turn down the volume just a little bit so we’re not blaring at you. That adds to hearing loss.
I wear my headset all the time when I’m walking. I listen to podcasts, mine and a lot of other ones too. I have to watch the volume in there. If there’s a lot of traffic, I have to turn it up so it can be louder than the traffic. If not, I don’t want to hurt my hearing. That aside, this is not a public health announcement about watching your hearing. It’s about what we can do as providers.
Now we have this situation where we have a patient and maybe the patient’s spouse or family member who may not be able to hear everything that’s being said. We have the practitioner, be it the doctor or somebody else, who’s assuming they can. Using principles of universal design, how can we make that situation better?
Valerie:Thinking from a universal design perspective, all of us would benefit from developing a habit of presuming that people may not have full function and really thinking about, “How do I make sure I’m getting this important information across?”
One of the techniques we recommend is the idea of redundant information or communication or being able to provide important information in a couple of ways. That means you may say that information, but it would be ideal if you could provide that information in a written format or perhaps send an email. It can be expanded in terms of font. It could be shown in your computer with a higher contrast, or your neighbor, son, daughter, or grandchild could read back to you in the quiet of your own home.
Helen:With the email and print ways, I see those as types of reading skills. If the person doesn’t have strong reading skills, doesn’t like to read, or doesn’t have access to a computer, for this principle of redundancy, which is beautiful, what might be other ways to communicate that message?
Valerie:You’ve made an excellent point. The reality is that many people will not stop a clinician and ask for clarification of the meaning of a term that might be completely new or a term they don’t understand. Is it the name of a disease? What is it?
Many people are embarrassed to ask these questions. I think all of us need to be thinking about how to explain things in a really plain way and help someone to understand the physical process you’re talking about rather than using the often convenient shorthand of formal or insider language of expertise.
Helen:Is universal design in many ways akin to plain language? Are we talking about the same thing here?
Valerie:Plain language is an aspect of what we could consider universal design. It’s also called inclusive design or design for all. Plain language becomes even more significant when you recognize that our brain’s ability to take in information can be compromised by so many things.
Anxiety in a healthcare environment for many of us is a likely indicator that we are not going to be at our best or absorb information fully and accurately. Many people are unwell or exhausted. They have any number of things that are a source of distraction when they are trying to get that information.
Plain language is an asset for all of us if we are tired, distracted or anxious. Plain language is critically important to consider. When we think about the diversity of cognitive abilities, either episodic or as a result of a condition such as a learning disability, a brain injury or the beginnings of dementia, plain language is an asset that makes it possible for people to feel more in control of what they need to know.
Helen:Plain language is certainly a strategy those of us working in Health Literacy for many years have long been a proponent of. I know your work, Valerie, goes more than that. It goes into the built environment, policies and attitudes. What can we be doing with universal design beyond plain language?
Valerie:One of the things is a much under-attended to reality. The environments in which people are communicating, particularly the direct communication of speech and the communication of creating environments where people can find their way, are something we give short shrift to.
In many cases in the healthcare environment many people are aware of this. There’s a constant effort in some institutions to always be thinking about making sure that people can find their way. Often medical campuses they have grown like Topsy. The ability to provide good navigation and way-finding or finding your way is a critically important element.
Helen:Can you give an example of that? I’m always fascinated with the issue of signage, which I’m assuming you were talking about. When I think of navigation, I’m thinking of it in two ways. I’m thinking of it in our physical environment. I want to hear from you about that. I also think of navigation on a website and getting from one place to another. Can we look first at the built environment?
Valerie:Signage is only part of it. I think all of us probably have the experience of being overwhelmed by signage. There’s one institution in Boston that has signs as a navigation guide. There are mountains of signs with little clarity of hierarchy and nine color-coded lines on the floor.
Helen:That might have been where I used to work. Then the lines would get you to one department, but actually the department moved, so the color-coded line didn’t even work anyway.
Valerie:I think we default to signage when we should be thinking about intuitive navigation. Can I even find the front door? Is it obvious to me that I can go over to that desk and simply confirm what I think are the directions to where I need to go?
Lighting and acoustics can make an enormous difference in how we navigate intuitively. The acoustics issue is also absolutely central to environments in which clinicians and patients are communicating with each other. For want of a quiet environment in which information can be exchanged comfortably, people miss critical information. An example of that would be the absurdity of a small examining room in which there is an HVAC system.
Helen:Is that the heating/air-conditioning system?
Valerie:Yes. This ambient noise creates a blur in the background that can obscure normal human speech. Those are the kinds of things to think about in the built environment that are critical to information and good communication.
Helen: Don’t leave us there, Valerie. What do we do? We’re in an air-conditioned office. It is buzzing in the background. What can we as communicators do to improve?
Valerie:If you are the clinician, that is a corrective action priority. That needs to be changed. One cannot muffle that adequately if you are forced to use a small room in which that is a characteristic. That’s something that really needs to be addressed by the facility staff. Beyond that, if there is the option of going someplace where it is quieter where each of you can feel comfortable, it’s a priority to do so.
Helen:You talked about lighting. What can we do?
Valerie:Lighting is also a very important and often neglected facet of the built environment. For example, many people with hearing loss read lips. Even before they have admitted to everybody that they have hearing loss or have confronted themselves with this likely reality, they are reading lips.
The ability to read lips is contingent on decent lighting so you can actually see someone face to face and have some hope of capturing what they’re saying. That’s an important piece of it.
If you’re sharing literature of any kind, bright light that is directed to the written product that you’re sharing is a valuable asset for anybody with diminished vision. You probably have known many people who continue to read even with vision loss but need a great deal more light. We need twice as much light at 60 as at 40.
Helen: That’s interesting. I was at your facility recently. Thank you for inviting me to speak about plain language. You have a wonderful gift shop. I just love your gift shop. It’s filled with ways to make our whole world more accessible to all.
I found the best reading device for a friend of mine who has macular degeneration. This reading device not only enlarges the size of the font, but it brings in more light. He has told me he has not found anything like that.
Valerie:We choose most of our products because we tried them out on people who need them. That product was actually one that my father with macular degeneration introduced me to. One of my siblings was smart enough to track it down.
It was extraordinarily effective until very recently when his central vision reached a point where it wasn’t usable anymore. It allowed him to indulge his favorite morning pastime, just reading the paper, by moving this globe of glass down the column of the paper. It focuses the light very simply through a prism that allows him to read comfortably.
Helen:It’s a wonderful device. On the Health Literacy Out Loud web page, we will have the link to your organization. Perhaps people can contact you to find out more about that and other options that you have.
Let’s move on. We’re talking about making the physical environment more accessible. We talked about plain language. A lot of people listening are probably doing writing. That was the focus of the article we did together many years ago. How can we make our materials more accessible to all?
Valerie:There are some simple tools to keep in mind to make print language more accessible and usable for all. Among those things is the choice of fonts that are simple. Avoid the use of all capital letters and minimize the use of italics. Avoid the use of something that is popular in some segments and the use of faint or even medium gray as your choice of font color.
Font can make an enormous difference in who can access your print information. We generally recommend for the majority of print materials to presume that a simple 12-point font is an advantage for most people.
The other issue that’s really important is the ability to highlight the important element in written material. The ability to look at material where it is almost impossible to discern, “What do I need to pay attention to?” is unhelpful to all of us who are pressed for time or who have concentration issues, learning disabilities, or simply the distraction of anxiety or exhaustion. We need to be able to fix on what matters in the hierarchy that says, “This is the most important.”
Helen:What would that look like on the printed page?
Valerie:It would certainly have to do with the size and weight of the font. It might require pulling some information into a box.
Helen:Aha. I get this question a lot. I want to hear from you, the expert, on this. Do people take offense when materials are designed this way?
Valerie: It certainly can be overdone. The materials I see that have been designed by people who really saw this in a very extreme interpretation tend toward the homely. What I’m talking about is really trying to do this in a way that looks ordinary and no one looks at it and says, “Oh my god. This must be for someone with extreme needs.” The material should look attractive and within the spectrum of the kind of print materials we see.
Helen:There are ways to be bringing in all these principles in a way that feels respectful and is respectful so everyone can feel included. Talk about the web, please.
Valerie:I’d be delighted to. People may know the issues of web accessibility. For the first decade or so when excellent work was done on this, the focus was really on people who were blind or had low vision. They were people who were using assistive technology like a screen reader that would make content available through spoken interpretation of what was written on the page.
That has actually evolved so that people are now much more sophisticated. The experts in this area are much more sophisticated about the importance of thinking more broadly about the rising phenomenon of learning disabilities.
We read in different ways and take in different information in different ways because our brains work differently. We also are looking at growing expertise and how to design the web for people who would never self-identify as having a disability but who are using the web all the time in increasing numbers. That would be older people who are very unlikely to say, “I have a special need so I can figure out where to go for the accessible web.”
Thinking about that audience is thinking about everybody, including people who have those needs. It means being a champion of plain language. Keep it straightforward and clear, and organize the content on the page in a way that is comprehensible to someone who may not be a constant reader of digital information.
Our favorite resource, to our great pride and advantage here in Massachusetts, is the MIT-based World Wide Web Consortium and the Web Accessibility Initiative.
Helen:Do you know the URL?
Valerie:I’ll pull that up for you. They have done the research. They have kept a global conversation going through rigorous attention to testing, retesting and trying out new things. They are absolutely beyond the gate. They are the ultimate research in a place that you can really learn how to do this. The URL is www.W3.org.
Helen:Thank you. We will have that on this Health Literacy Out Loud web page. Valerie, you’ve given us so many strategies we can be using in person, in print and on the web.
The overriding message and the thought I’m having as you’re talking is that it’s no longer that some people are disabled and some people are not. I’m hearing from you this great continuum of abilities may change over a lifetime because of an illness or injury. It’s not static that you are or are not this or that. This can fluctuate all the time. It sounds like it’s just the great human experience you are talking about. Is that correct?
Valerie:It is absolutely correct. I’m happy to say that the World Health Organization has endorsed that after 10 years of work. In 2001, they released their policy on disabilities, which for the first time was crystal clear.
Functional limitation is a universal fact of being human. Disability is a condition that can be created at the intersection of the person in the environment. That includes not just the physical environment but the information and communication environments.
If we are attentive to these things and attentive to anticipating the reality of difference in function, we have minimized the experience of disability. We have opened the door for an equitable playing field for everyone.
Really, the power is in our hands. That’s really the message from the World Health Organization that all of us need to take to heart. This is something we have the opportunity to change.
Helen: That puts it together so well. I also love your message of making it a habit. Make all these strategies a habit. Do you have resources for people to learn more? We will put some of those on the website. Are there some you would want to share right now, including your own organization?
Valerie:We’re delighted that you’re going to share our URL for the Institute for Human Centered Design. I will also make available to you a selected bibliography on universal design, not just print materials but also a wealth of websites so you can share those with your audience.
Helen:Thank you for that. Valerie, you’ve gone from designing clothes as women age to looking at all the environment in a much more inclusive way. What was your biggest aha moment?
Valerie:I have always felt that design is powerful. My appetite for design and my delight in design as the thing that makes my blood run faster was difficult to live with because my sense of a meaningful life was not being met by this personal experience of design. Designing for people who were aging was one little inkling that there was an opportunity to think differently about the power of design to shape our lives.
I think the marriage of this sense of design, its importance in our lives, and its potential to minimize our limitations and maximize our strengths is really the thing that allowed me to marry my passion for design and my interest in a meaningful life. That was my aha moment.
Helen:Thank you. That passion comes through. I hope all our listeners will make it a habit to consider universal design in all they do. I know I work hard to make it a habit in my life too. It’s ongoing, and we’re evolving together. Thank you so much for sharing all this wonderful information with the listeners of Health Literacy Out Loud.
Valerie:It’s always a pleasure to talk to you, Helen. I look forward always to our next conversation.
Helen: We’ll keep having them.
I learned so much from this conversation with Valerie Fletcher, and I hope you did too. Health literacy really isn’t always easy. For help communicating your health message clearly and simply, feel free to visit my Health Literacy Consulting 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 podcasts come out every few weeks. You can subscribe for free for these to hear them all. You can find us on iTunes as well as the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.
Did you like this podcast? Did you learn something new? I sure hope so. I know that 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.