Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.
Today, I’m talking with two guests. Dr. Carolyn Cutilli is past president of the Health Care Education Association, or HCEA, and co-chair of HCEA’s Patient Education Guidelines work group.
She also is a patient education specialist at Penn Medicine and adjunct professor of nursing research and health policy at American International College.
Carolyn writes and speaks about many aspects of health communication, including geriatric health literacy.
Sarah Christensen is director of Patient Education at The University of Texas MD Anderson Cancer Center. With over 20 years of patient education experience, Sarah provides institutional oversight regarding health literacy and educational resources. She co-chairs HCEA’s Patient Education Guidelines committee.
All three of us are active on a health literacy discussion list that’s hosted by IHA, or the Institute for Healthcare Advancement. Carolyn recently posted information on this list about a new resource that she and Sarah co-chaired and helped to create called Patient Education Practice Guidelines for Healthcare Professionals.
I’ve worked in patient education for many years in my clinical career. When I took a look at this—wow, those guidelines were terrific and just what I wished that I had back in my hospital days. I wanted to learn more, thinking that you might want to, too.
Carolyn and Sarah kindly agreed to be guests on Health Literacy Out Loud.
Welcome to you both.
Dr. Carolyn Cutilli: Thanks, Helen. It’s great to be here.
Sarah Christensen: Thank you, Helen. It’s a pleasure.
Helen Osborne: We’ve got three women’s voices here. We’re going to try to mention who’s speaking until we get comfortable knowing who’s sharing this fabulous information. Certainly, Sarah and Carolyn approach this project together.
Let’s take it from the top. Your very first two words in the title are “patient education.” We have listeners from all over the world in all kinds of positions. Can one of you please just put that a little bit in context? What do you mean by that term “patient education” and who does it?
Dr. Carolyn Cutilli: Thanks, Helen. I’d like to answer that question. Patient education, we actually took a quote from Susan Bastable’s 2017 book. It’s a process of assisting consumers of healthcare to learn how to incorporate health-related behaviors, knowledge, skills and attitude into everyday life with the purpose of achieving the goal of optimal health.
We chose that definition because it’s very broad. Patient education can be as simple as how they get to the diagnostic test that they need to take, because if they don’t show up, that will tremendously impact their health.
Who does patient education? As you can tell from what I just said, it’s almost everybody who is working with them to provide the information they need to have optimal health.
Helen Osborne: Thank you for that. It’s not just, “Now we’re going to sit down and we’re going to do patient education.” Patient education can happen in many ways, many times and many combinations of interactions. Thank you for that, Carolyn.
Sarah Christensen: Helen, I would just like to add that as we were drafting the guidelines, we really looked at the scope of what was covered. We found very quickly it was cumbersome to say patient, caregiver, family member, etc.
I’d just like to point out that in the guidelines we refer to patient, but it really includes family, friends, neighbors, guardians, partners, consumers or anyone else looking to address healthcare needs.
Helen Osborne: When you talk about the person doing the education, it’s not just someone in a typically clinical role. You talked about preparing for procedures and things. Many of us working in healthcare, or maybe even public health, might be patient educators at times, right?
Dr. Carolyn Cutilli: Yes. It can be people in a variety of roles.
Helen Osborne: Thanks for clarifying that and broadening it. Listeners, listen up. It’s all of us, because we all care about health communication.
The next part of your title has to do with “practice guidelines.” We’re all doing this that has a very broad definition. How did you come up with this concept that we need some guidelines to be doing what we’re doing?
Dr. Carolyn Cutilli: As an organization, the Healthcare Education Association, we had developed the scope of practice. Really, the guidelines came after that activity.
When we took a look there were very few pieces of information out there for anyone who provides patient education to really guide them that were clear, concise and to the point, which is what in a lot of cases our frontline caregivers really needed.
We took a look at a variety of different products that were available for sale, as well as government products, and very few of them fit that concise definition. That’s how we came up with the idea for Practice Guidelines for Healthcare Professionals.
Helen Osborne: Thanks for that, Carolyn. I think that’s what resonated with me the most when I went to the website. We’ll have a link on your Health Literacy Out Loud web page where people can find this resource you put together. It’s available for free, and it’s fabulous.
I wish I had something like that when I was working in a hospital. It would have saved me so much time and effort to figure out how to do the best job I could as a patient educator. I think that’s why I so genuinely applaud this effort.
Carolyn and Sarah, this resource guide is just amazing. But just tell us a little bit about how this happened, because it sounds like an overwhelmingly large project.
Dr. Carolyn Cutilli: Thanks, Helen. Really, the credit goes to our whole entire work group, which has 25 members and has diligently worked at this process from coming up with the questions for the library to use to search with. Let me tell you that was not easy, going through all the articles initially and looking at the abstracts and titles to decide whether it was pertinent enough, deciding which ones were worth looking at that pertained to our topic, reading all of those, double-checking them and summarizing them.
It has taken a lot of effort. We really appreciate all the volunteers who have stepped forward and helped on this process and worked with HCEA. Kudos to everybody.
Helen Osborne: What else should we know about pulling this all together, or do you want to just start talking about those great guidelines? I bet listeners want to hear those. Tell us how you divided up the information, give us an overview of the resource and then we’ll go into some examples.
Sarah Christensen: Sure. One thing I want to point out is when we did this comprehensive literature search of over 10,000 articles . . .
Helen Osborne: Oh my goodness.
Sarah Christensen: It’s true. We found several overarching concepts that emerged. They impact how patient education is delivered. Keywords like patient-centered, patient engagement, plain language, and looking at behaviors and actions, not just knowledge, came through time and time again.
As we drafted these guidelines, we really looked at the four components of education process: assessment, planning, implementation and evaluation, which is often referred to as APIE.
Helen Osborne: That’s because we really like our acronyms, right?
Sarah Christensen: It’s very true.
Helen Osborne: A-P-I-E. We’ll go through each of those, I hope.
Sarah Christensen: Exactly. We certainly will.
That’s how we chose to break out the guidelines. There are four separate sections each addressing one of those components. They’re all equally important. You can’t just skip over one or do the other. They’re all just essential for effective patient education.
Helen Osborne: Let’s get to it. Let’s start with assessment.
Sarah Christensen: I’ll start with assessment. Just very briefly, each of these sections has a brief introduction, several steps outlining the key concepts and then there’s a table of a little more information, some examples, some scripting and also a link to a reference list where we tagged all the citations that support the work that we found.
With assessment, it’s the foundation of effective patient education. It’s important to have this interactive process where you’re learning about the patient’s background or any barriers that might come into play, and then develop a tailored plan to help meet their needs, abilities and preferences. This really is the essence of providing patient-centered care.
Helen Osborne: Thank you. Would health literacy be a component you might figure out in that first assessment phase?
Sarah Christensen: Absolutely. One of the steps we outline within assessment is looking at their current knowledge, their culture, their values, their social determinants of health, their engagement and their current status of their healthcare. Again, as I said, for each of those components, we give some sample scriptings.
For example, for what is their current health status, we give an example of simple questions to ask, which might just come naturally. But in the moment of education you’ve got this guideline that says, “What are you most concerned about?” or, “Based on our discussion, what are the top three things you’d like to focus on first?” We give examples, which we really hope are useful examples, throughout the document.
Helen Osborne: That really resonated with me, too, when I was reading this. They were just so practical and doable. I know everybody everywhere feels overwhelmed already and doesn’t want to add more work, but you’re putting it into language we can easily put into place, and we might be doing and not even consider it. Thanks.
We have to start with that foundation of that assessment before you get right into the heart of the patient education. What happens next?
Dr. Carolyn Cutilli: I’m going to talk about planning. I want you to know that our group had lengthy discussions about what belonged in the planning section versus the implementation section, because we almost felt like they were interchangeable at times.
The final decision we made is that most of the things you think about with doing patient education really belonged in the planning section.
It’s very important that before a healthcare provider walks in and works with a patient’s family, caregiver or significant other that they have thought about what they’re going to do. They’ve planned it out. They’ve thought about their strategy. That’s why we had decided to put most of the information in the planning section.
Helen Osborne: Can you give us an example or two?
Dr. Carolyn Cutilli: One of the things I want to stress with the planning section is that it’s when healthcare professionals and patients partner together to develop an education plan. It really looks at the patient’s unique learning needs.
When you think about patient education, it really should be a conversation. It’s a back-and-forth between the patient and healthcare provider. We want to stress those aspects.
When you think about planning, what would be a good example? It should really be an individualized, tailored education.
For example, you want to learn out about the person’s individual cultural background and find out what education fits into their background. You build on a patient’s current knowledge. You may use the concept of motivational interviewing, such as open-ended questions, affirmations, reflections and summary. Those are some of the strategies that you use and think about as you’re planning.
Helen Osborne: My question might skirt into the implementation part, but do you ever plan pretty well and then you go to do it and say, “Whoops, that didn’t work out the way I hoped”? I don’t know what that transition between planning and implementation is.
Dr. Carolyn Cutilli: Yes, and that’s actually one of the most important parts of implementation. But what helps that, and once again we’re reflecting back to planning, is to keep the message focused. You want to just focus on several key points.
We have a lot of health information, particularly as healthcare professionals, and we’re just dying to share all of it with our patients. However, it can be a disservice when we give too much information. It’s really important to focus on key points and put the most important information first.
Like you had said, you may find that you just haven’t hit the nail on the head as you’re implementing the patient ed. That’s why you think about multi-modal approaches, like doing several different things to help a patient understand. As you said, in the implementation section, you’re constantly adjusting.
The planning section actually just gives you a lot of tips to use that hopefully you’ll have less adjusting to do when you get to the implementation.
One of the other key things that came through in the literature is having repeated contact with the patient, whether that be follow-up phone calls or unlimited access to skilled learning on the web.
There’s also doing education from a problem-centered learning. For example, you’re a diabetic. When your blood sugar goes low, exactly what will you do?
There’s also using personalized action plans. Our guidelines also go over some educational models, so you can always look at those and see if those models would work for you.
Helen Osborne: It sounds vast, and I certainly hope listeners go to it. I know you’re just covering part of it and have so much more to go over.
I just want to speak about my experience with planning, but it’s not about patient education planning. It’s about podcast planning.
The three of us spent some time ahead of time thinking about what we were going to say and how we were going to go at it. To me, that runs almost parallel to what you’re talking about in patient teaching. It’s how to make good use of time very efficiently and get to the objectives you want to reach. Great minds think alike and all of that.
Can we move on to the implementation?
Dr. Carolyn Cutilli: We’ve already talked about part of that, but I would say some of the things that stand out with implementation, I think everybody knows to use plain language, but to use active listening skills, really pay close attention, withhold judgment, reflect, clarify and summarize with the patient. I don’t know if we think about that every time that we educate a patient.
Also, educate in small segments and verify understanding before moving on.
Then if you have a patient who really doesn’t understand information, try different words or different analogies. The example that we give in the guidelines is, “In describing a blockage in the heart’s arteries to a plumber, an analogy would be to compare it to a pipe that’s partially clogged so that the flow of water is prevented.”
Helen Osborne: I like metaphors.
Dr. Carolyn Cutilli: We give a lot of analogies and scripting throughout the guidelines. For example, if a patient is struggling to understand when to call the doctor, that might be the time that the staff sits down and has a one-to-one education with them when they may have been sitting in a healthcare class.
Helen Osborne: It really sounds like those are the active health literacy principles that go in there. We’re talking about the different learning and teaching strategies that happen, but that only happen in context about assessing the situation and the needs of that particular person and situation, and then planning different ways of doing it. Now it’s actually doing it. Again, a wealth of information that’s in there.
How about evaluation? That’s part of your acronym, APIE. What happens in evaluation?
Sarah Christensen: Evaluation is the end of the process. You can evaluate after each concept is taught, or you can wait until the end of the teaching session.
What’s really important about evaluation is that you’re evaluating the degree of learning, not the tool that was used to achieve the learning.
When we were doing the literature search, we found so many articles related to patient education evaluation and the majority of them referred back to a tool, not the concept or process of evaluation.
Helen Osborne: Can you explain to me and all of us the difference?
Sarah Christensen: Sure. Evaluation demonstrates the degree to which learning is achieved. That can be shown through using concepts like teach-back or return demonstration, or you could actively measure a patient’s outcome if they’ve completed, say, a questionnaire or survey prior.
What we found in the literature is so many people published about their questionnaire, survey or validated tool, which are great resources, but it didn’t get to the key concept of verifying that learning was achieved.
That was shown through interactions with patients who are able to, in their own words through teach-back, explain their current situation or medication, or perform the skill, like taking care of your central line, etc.
Helen Osborne: That really gets to heart of being patient-centric, too, as opposed to just doing research on a tool.
Sarah Christensen: Absolutely. What’s also important about evaluation is that sometimes you’re going to find that learning was not achieved and you need to reteach.
That’s when it’s important to go back to either the planning or implementation section and modify the teaching plan and try a different approach, as Carolyn mentioned. Maybe there’s a different strategy or different way to work with the patient as an active partner to achieve learning.
Helen Osborne: Thank you both. My goodness, what a huge, vast body of work.
Can you share the URL right now, or at least the title of it again? Again, we will have that on the website. Then I’ve got a couple of questions I just want to follow up on, too.
Dr. Carolyn Cutilli: You can actually go to our website. It’s on our front page, because this is brand new coming out. It’s www.HCEA-Info.org. The name of the guidelines is the Patient Education Practice Guidelines for Healthcare Professionals.
Helen Osborne: Thank you. That is no charge?
Dr. Carolyn Cutilli: Yes. That was our idea behind this. We knew that there were products out there that you could purchase, but we really wanted something that everybody would have access to.
Actually, as part of our process, we received a Health Literacy Grant from the Middle Atlantic region of the NNLM, the Network of the National Library of Medicine. That grant did fund the searching of literature for this. The rest of the work was done voluntarily by our organization.
Helen Osborne: I applaud that even more. I’m such a fan of open access. We have listeners from all over the world who, I think, could make great use of this.
Your goal when you started talking about this was you wanted to create information that was clear, concise and to the point. I think you’ve done an amazing job in creating the guidelines.
From each of you, I’d just be interested in your vision of how you see this would be used if it was planned or implemented. What would be your vision of what would happen?
Sarah Christensen: I think this is such a comprehensive document. We tried to make it as concise as possible. Each of the four sections of the APIE is just a few pages. But really, if it feels daunting, I would encourage people to go to the PDF and go to the guidelines’ quick link. There you can see in just two pages a very high-level overview of each of the four steps.
Once you get comfortable with, “There are four different ways. I move from assessment into planning,” etc., then go to each section and dig a little deeper and look at some of the concepts that are there.
You asked how it could be implemented. I would love to see the guidelines’ quick guide laminated front and back and in every clinical exam room.
Helen Osborne: And public health setting, teaching facility and library.
Sarah Christensen: Everywhere.
Helen Osborne: Everywhere.
Sarah Christensen: Absolutely.
Helen Osborne: Carolyn, what about you? What is your vision for the best use of this?
Dr. Carolyn Cutilli: On my wish list would be that clinicians know that they can come to this guideline and always be able to use it, whether they’re looking for something very specific or whether they’re looking for something more broad. And that they really think about the patient education process as incorporating the four APIE steps and how critical that is as you make it patient-centered.
Helen Osborne: You did it. Congratulations to you both and all the many people who I assume worked with you to make this happen. As I said, I wish this was a tool that I had.
I’m delighted that you came on Health Literacy Out Loud to share this information with everybody. I’m your great fan and cheering you on. Thank you for being guests on Health Literacy Out Loud.
Dr. Carolyn Cutilli: Thank you, Helen.
Sarah Christensen: Thank you so much, Helen. It was a pleasure.
Helen Osborne: As we just heard from Carolyn Cutilli and Sarah Christensen, it is so important to consider the many steps and ways of educating patients. But doing so isn’t always so easy.
For help clearly communicating your health message, take a look at my book, Health Literacy from A to Z. You might be especially interested in Chapter 32 called “Teaching and Learning.”
New Health Literacy Out Loud interviews come out every few weeks. Get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.
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Until next time, I’m Helen Osborne.