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
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.
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