Teenagers across the nation are learning to navigate the often complex health care system thanks to a Nemours Children’s-developed, no-cost, evidence-based health education curriculum called “Navigating the Health Care System.” Today, we are joined by the Nemours associates who created and have made available this curriculum along with teachers from Delaware, Illinois, and Alabama to talk about how they have used or are using it in their classrooms.
Navigating the Health Care System is a four-unit health literacy curriculum designed by Nemours Children’s Health for use with young adults. It is designed to prepare high school and college-age teens to be responsible for managing their own health care as they transition into adulthood. Materials are suitable for in-class, in-home, after-school, and community settings, and can be taught virtually.
Carol Vassar, producer
Kate Blackburn, Director of Practice and Prevention, Nemours Children’s Health
Denise Hughes, Senior Program and Policy Analyst, Nemours Children’s Health
Ayanna Sterling, Program Manager, Health Literacy Program, Southeast Alabama Area Health Education Center
Christine DeGuzman, Health Education teacher, Brookside campus, Waukegan High School, Waukegan, Illinois
Katie Marianello, Teacher and original Curriculum Pilot Researcher, Delaware
[00:00:00] Carol Vassar, podcast host/producer: (MUSIC) Welcome to Well Beyond Medicine, the Nemours Children’s Health Podcast. Each week we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar, and now that you are here, let’s go. (SUNG): Let’s go, oh, oh, well beyond medicine! (MUSIC ENDS).
[00:00:27] I am joined on this episode by a panel of advocates committed to transforming the health of children well beyond medicine through a no-cost, evidence-based health education curriculum entitled “Navigating the Healthcare System.” Developed here at Nemours, it is specifically aimed at teens and young adults, and is already in use nationwide.
[00:00:52] To discuss this important initiative from Nemours are Denise Hughes, Program Manager for School Initiatives and [00:01:00] co-creator of the “Navigating the Healthcare System” curriculum, and Kate Blackburn, a manager with the National Office of Policy and Prevention. We are also getting perspective today from co-creator Kate Marianello, a teacher who piloted the program in Delaware in 2010, Ayanna Sterling, Program Manager for the health literacy program at the Southeast Alabama Area Health Education Center, including Montgomery, Pike, and Elmer Counties in that state, and Christine De Guzman, a health education teacher at the Brookside campus of Waukegan High School in Waukegan, Illinois Waukegan High School in Waukegan, Illinois, just north of Chicago.
[00:01:45] Let’s start by getting a bit of the history of this curriculum from Denise Hughes:
[00:01:51] Denise Hughes, Nemours Children’s Health: So, in 2010, Nemours created an adolescent team. We really wanted to find out where the gaps were. So we [00:02:00] did a photography project with adolescents across the state of Delaware and had them take pictures of things that helped them to be healthy and prevented them from being healthy. And from that, they got to categorize their photos and tell us why. And the reason we used photography was it gave the quiet person a voice. Usually, when you do a focus group, you always have the people who speak out, but we wanted to make sure we could hear from everybody in the room and not just the people who were very outgoing or not shy. And at the end of that, we really found out that people were hearing health messages, but they really didn’t know how to put them into place.
[00:02:34] So a Cup of Noodles to them was healthy because it has peas and carrots in it, and they were eating their vegetables. Forgot all about the sodium and the fat and all of that, but it was a general theme throughout that project. We then took that information and did focus groups, and we separated boys and girls. We did middle school and high school kiddos, separated them, and then we did parents in another room and we asked them who were their trusted resources, where did they get their [00:03:00] information from? The kids were like, we ask each other, we Google it. Parents were like, oh, they’ve come to me. So there was like a huge disconnect there. And, at the end of it, we basically asked everybody, if we created something for them on how to use a healthcare system, would they be interested? And they all said yes. So we went back to the office, and we started doing some research. We saw there was a lot of information out there for children and teens that had healthcare needs, but there was nothing for the general population.
[00:03:30] So we started creating this material and we’re researchers. We sit behind a desk. We do not teach. Insert Katie. Once we got the content to a format that we thought we could take, we went out and presented it in in four high schools. Katie happened to be gracious enough to let us come into our classroom and tell us how awful it was the first time through.
[00:03:51] Kate Marianello, teacher: Now, hang on a second. My kid said it was boring. Not awful, just boring.
[00:03:55] Carol Vassar, podcast host/producer: But that’s outta speed back if you ask me.
[00:03:58] Kate Marianello, teacher: We were very honest. But we [00:04:00] also had other classrooms that were like, this lesson is terrible, I won’t use the real words. You need to take that out. So like we actually went back, took things out, replaced things, and then re-presented it.
[00:04:10] Denise Hughes, Nemours Children’s Health: Katie really helped us shape, create, redevelop, refine, and make it more teachable and kid and student-friendly. So that’s kind of how things developed and how Katie got involved.
[00:04:22] Carol Vassar, podcast host/producer: Katie, how long of a process was it? It sounds like there was a lot of back and forth. Some give and take some. This is boring, to bring it up to a place where it could be less boring or at least interesting.
[00:04:34] Kate Marianello, teacher: Yes. The first time I saw the program, I didn’t actually even teach it. It was Denise, and the researcher Kristen had come in, who also works with Nemours. They actually presented it to my kids, and then it was my turn to do it after I saw them do it. So there were a couple of iterations of me teaching the program as is.
[00:04:56] And every single time, my kids are like, this is super boring. [00:05:00] And I knew it was really important information for them, but when they say, oh, I’m bored, they’re not gonna pay attention. And I’m like, oh, this is so important. Like, you really do need to know how to do this. And so I kept asking Denise, I’m like, can I change it? Can I change it? Can I change it? And she kept saying, no, no, no, because they were doing the pre and post-test, essentially assessing the validity of the program. And so I had to teach it the same way all the other teachers were teaching it in order to keep their research valid.
[00:05:31] With the way that health classes work in Delaware, I actually taught it twice a year to teach separate groups of students, so it was maybe a year or two. They collected all the data, and Denise finally said, Hey, it’s valid. Go ahead and change it up the way that you wanna do it. I said, okay, will do. And I did change it up for them, trying to make it more kid-friendly, more hands-on. I like to get my kids up and moving in my classroom, and as [00:06:00] much as they moan about it, when I tell them, okay, we’re getting up and doing something, they are certainly more engaged, and we were finding that they were not only engaged, but they were getting the information, and they weren’t looking at me and falling asleep in class.
[00:06:16] They were actually participating and paying attention. So I would say it was over a couple of years between me actually changing it in just my room. So then me working specifically with Nemours to change the materials that they had and then expanding it to what it is.
[00:06:33] Carol Vassar, podcast host/producer: So let me ask this. How did you evaluate and research how effective this program is and was? Was it sticking with the kids? Were they actually learning the material?
[00:06:47] Denise Hughes, Nemours Children’s Health: So we did a pre and post-test, so we wanted to see where they were before they were taught anything. And every classroom who participated in our pilot took the pre-test, and we took the post-test, and [00:07:00] what we saw is they all had similar growth. So they all started it around 50, 60% in the beginning, and then towards the end they were between 80 and 90. We also looked at whether it was the first time the teacher was teaching it, the second time, third time, so we would know how many times the teacher taught it, and what we found is it didn’t matter if it was the first or the 50th time a teacher taught it, there was still the same growth, which was really exciting for us.
[00:07:24] The other thing that was interesting is it was taught in health class, but we have career tech ed classes that have a health career pathway. So some of those high school classes picked it up. Those students started about 10% higher than the general population and then finished 10% higher. So they still had the same amount of growth, but they started at a higher baseline and finished higher. But it was still like that 30% knowledge gain that we saw.
[00:07:50] Carol Vassar, podcast host/producer: Which is what a teacher wants to see in their students in growth and knowledge and retention of that knowledge. It sounds like over that two-year period of development, going [00:08:00] back and forth, evaluation, research, you really came up with an exciting program, and now it’s going nationwide. Kate, I wanna ask you what prompted Nemore to take this nationwide?
[00:08:14] Kate Blackburn, Nemours Children’s Health: I would say two things that combined with one another. So Nemours is committed to the health of all children nationally, not just young people. That to our doors. And that commitment to all children across the country, combined with our confidence in the content’s effectiveness through the research and evaluation that Denise described, prompted the leadership to select “Navigating the Healthcare System” for national expansion. And that’s when we got involved since that’s part of the work that we do. So we began national expansion efforts in the spring of 2018, and Denise and I have been working on it since then together.
[00:08:47] Carol Vassar, podcast host/producer: And what do those efforts look like? How do you bring this to the attention of teachers across the nation?
[00:08:54] Kate Blackburn, Nemours Children’s Health: Well, it’s a bit of an organic process, so Denise and I will present when it makes [00:09:00] sense on webinars, you know, conference presentations, our own natural networks or teacher groups, say homeschool teacher outreach, that sort of thing. So the growth has been more word of mouth probably than directly through the efforts of Denise and myself, to be frank about it. That’s probably, I think, where we’re getting more bang for our buck these days. We have about 900 or so contexts in our database that represent the people that signed up and said we’d like to receive your information. Doesn’t necessarily mean that they’re using the curriculum, but they’re tracking what we do, and they’re being responsive to our emails.
[00:09:36] That 900 or so those individuals represent 53 states and territories. So we know we have some presence all throughout the U.S. We also track metrics on the website where the content lives. So we have about 15,000 unique visitors to the program website per year, about a thousand downloads a month. And I think that those are pretty strong metrics. Compared to, [00:10:00] say, Amazon or something, maybe 15,000 unique visitors is not that exciting, but for a curriculum, I think that it is strong because of two reasons. So one, the organic growth that I mentioned for the most part. And secondly, most of the time, teachers and presenters and our teachers and presenters on the line with us today can speak to this, but most of the time, they come to the website, they download the lesson plans once, they don’t necessarily have to come back. So the fact that we’ve had this many people coming for the first time Is exciting to us. And I guess the last thing that I would add in terms of describing our user community is that we do open a user community survey twice a year. So anyone on that mailing list or distribution list, we invite them to participate in a web-based survey, and that’s where we give them the opportunity with closed-end and open-ended questions to just say, How is it going? Where are you using the lessons? With what types of teenagers are you using? High school? College? In class? At a Y? After school? What are the aspects of the content that the students [00:11:00] seem to love? Are there things you’d like us to add? That sort of thing. And that survey process gives us really rich information so we can get to know what the user community wants in terms of additions we might make going forward, and it also gives us an opportunity to connect. So that’s actually how we know Ayanna and Christine is through the survey feedback.
[00:11:21] Carol Vassar, podcast host/producer: And do you make changes based on the survey feedback?
[00:11:24] Kate Blackburn, Nemours Children’s Health: We do. We do. So Denise and I probably once a year we discuss, and then whether we do a full overall or some modifications, we will add content, revised content, that sort of thing.
[00:11:37] One of the big pieces, and Denise could speak to this in more depth, is that we’ve had a request for content for younger students to help them learn about the health system. This set of lesson plans we have now is for maybe like 16ish and over. Then our. Really gonna start picking up the phone and calling a doctor’s office to schedule an appointment and interact and speak for themselves in a visit.
[00:11:59] [00:12:00] Denise is working with others in our system on creating lessons that are for younger students who might not be fully taking on their healthcare yet but need to have those building block skills. Denise, if you wanna add a little bit about that.
[00:12:12] Denise Hughes, Nemours Children’s Health: We started developing elementary school lesson plans. We interviewed teachers across the state to find out where health was taught, and what they identified as the needs of their students. So it ranged anywhere from healthy eating, physical activity, oral hygiene, hygiene in general. What is a doctor? What do they do? Who are my trusted people? So we started taking that content and exploring how to integrate it into kindergarten through fifth-grade classrooms. And we’ve put it in math classes. So like, they’ll take sugar-sweetened beverages and put them in rank order of what has the most to least sugar, but then they also scoop it out so that way they know how many teaspoons of sugar are in it, so they’re doing some math along with it. Or stuff sitting in their English language art classes. So they’ll read, [00:13:00] instead of reading a non-fiction article about something, they’ll read something about health. They’ll do a research project around a health topic and then they get to present it cuz kids like to present. They really enjoy Google Slides these days. Anything on the computer. They all are very technology savvy. So they really enjoy presenting and showing off what they can do with their computers. So we’ve started making things very interactive for the K through five population as well.
[00:13:26] Carol Vassar, podcast host/producer: Before we talk to the teachers, I’m wondering, this did start pre-COVID. Did you make changes as a result of COVID?
[00:13:32] Kate Blackburn, Nemours Children’s Health: We did. The summer after COVID, Denise and I and others on our team went through and made sure that every activity had an option for this is how you can present it live, and here’s how you can present it if you’re in a Zoom classroom or a virtual setting. And I think Christine has some good examples, too, about how she modified it how she uses it in person at virtually.
[00:13:53] So, let me ask the teachers on the line, and I guess I, I will start with Christine. How did you hear about the lesson plans [00:14:00] and why did you decide to use this particular lesson plan?
[00:14:05] Christine De Guzman, teacher, Waukegan, IL: So, as I was saying, the lesson plans were included in our curriculum already when I started teaching here in Waukegan High School. Our curriculum was given the Blue Ribbon Recognition by the Illinois Association for Health, Physical Education, Recreation, and Dance. Now my mentor is Sarah Gershon, who’s also a health education teacher in Deerfield High School. She’s the one who included the “Navigating the Healthcare System” in the health literacy unit.
[00:14:31] Now, I’ve been using this material for four years now in my health education classes. Waukegan High School caters to a culturally diverse population. We have immigrants coming from other countries, especially from Mexico and Central America. And I think learning about the healthcare system here in the U.S. Is very essential for my students and their family members as well. Not only will they have the knowledge, but also they will develop [00:15:00] skills in navigating through it. Then learning all this will help them communicate better on their wants and their needs about their health. And the students will know and understand their rights and responsibilities. Thus, they will be more confident in taking charge of their own health needs.
[00:15:15] Carol Vassar, podcast host/producer: Absolutely. I think Kate referred to the fact that you did incorporate some Zoom lessons and some in-person lessons. What other modifications did Southeast Alabama Area Health Education Center you make to the content to make it work for your kids?
[00:15:33] Christine De Guzman, teacher, Waukegan, IL: Now, since I’m teaching teenagers, I want the lessons to be more interactive. I used Spear deck application in the slides presentation; then, I added some slides where my students can respond to questions relating to the topic. This way, they can feel that they were always part of the discussion and what they had to say was also important. I also added short, relatable videos in between, so it will be more [00:16:00] understandable and interesting. I included some websites that may help them get more information, like the Illinois Department of Healthcare and Family Services, the Illinois Department of Insurance, Medicaid in Illinois, and a lot more. I also created some group collaborative work. I find it really intellectual for the students to learn to decide on where to go in situations where they need medical attention, so I put an emphasis on the where to go activity, giving them a lot of scenarios where they can choose and make their own decisions.
[00:16:36] Carol Vassar, podcast host/producer: Ayanna, I’m going to turn to you. How did you hear about the program? How did you develop it for use for your students, and what kind of changes did you make to content to make it relevant for your folks?
[00:16:47] Ayanna Sterling, teacher, Southeast Alabama Area Health Education Center: So a simple Google search led me to the toolkit. It was interesting. So there was a video on Nationwide Children’s website that I found about health literacy and it kind of [00:17:00] linked me back around to Nemours, and so I ended up integrating it into a presentation for our Discovery Med Camp. So that’s for high school students in grades 10, 11, and 12 who show some interest in perhaps wanting to pursue healthcare professions. So I wanted to kind of integrate the aspects, especially the self-advocacy portion of it for them, into my health literacy presentation. So I incorporated some videos, and, much like Christine, I made it very interactive by including small groups. So we broke off into sessions of small groups. Everybody, you know, got to talk about who are your trusted people and what does self-advocacy look like. I found it to be just really very comprehensive material and very translatable because not only did we use it with our high school students at Discovery Med Camp, but also in our AHEC Scholar’s program with those post-secondary health profession [00:18:00] students, really stressing the importance to them, as emerging healthcare leaders, on making sure, as they’re engaging with the public that they are promoting self-advocacy and guiding people correctly on how to navigate the healthcare continuum.
[00:18:15] Carol Vassar, podcast host/producer: How did the students react, Ayanna, to the program, to the curriculum?
[00:18:19] Ayanna Starling: They were very receptive. No one said they were bored, so that was good. So the post-secondary health profession students specifically they were wanting more. They wanted more information on what they can do to help health literacy, cuz we serve rural and underserved populations, and so they were just wanting more. It really lent itself to the interprofessional education that we provide them. So the students come together. They’re from various colleges and universities within our 15-county service area, different disciplines. So you may have pharmacy students, nursing students. So it brought together all of these students under the umbrella of, hey, let’s [00:19:00] learn everything that we can collectively to promote health literacy in the state of Alabama. So it was really a great toolkit. And the lessons, like I said, are definitely translatable across age groups because I plan to continue to use the lesson plans for even some trainings and workshops that I’m planning for even older adults. So, thank y’all.
[00:19:23] Carol Vassar, podcast host/producer: Christine, I’m wondering, from your perspective, how did your students embrace it? Did they embrace this curriculum? What were their thoughts? What was their reaction?
[00:19:31] Christine De Guzman, teacher, Waukegan, IL: They really loved the lessons. They started getting interested in finding out about their health insurance if they have one. They’re asking their parents for a copy of their own health insurance card. They’re asking for their doctor’s information and I told them it’s very important they have their doctor’s information saved on their phone. And they’re starting to do that.
[00:19:53] I discovered through the years that a lot of my students, they do not have knowledge of their own family medical [00:20:00] history, and so they find it really interesting to do the family tree. They started interviewing their parents, grandparents about their family health history because we have that worksheet where they will have to do their family health history. They actually became conscious of their own health.
[00:20:18] Carol Vassar, podcast host/producer: Let me ask you this, Christine. Do you have any examples? I mean, you gave me some examples just now that were amazing that kids are asking about their family history and their family health history. Any other examples of how the program has changed the student’s knowledge or skills, or even behavior?
[00:20:37] Christine De Guzman, teacher, Waukegan, IL: Oh, well, during the pandemic, we were doing virtual classes. I was so proud that through these lessons, I was able to help educate a lot of my students and their families about the importance of vaccines. I was able to encourage a part of the community to be protected and get vaccinated. Now, I also learned that they have students along with their family members who have [00:21:00] no health insurance. They didn’t realize the importance of having health insurance in this country. And I was thinking, how on earth can they survive in America without decent health insurance? So I’m so happy that these two were included in the lesson. Now they started exploring websites like Medicaid and how to apply for health insurance. Also, some of the students became curious about STI and HIV testing. They were surprised that they can talk to their doctor in private. So all this they learned in the “Navigating the Healthcare System.”. So overall, I concluded that my student’s knowledge and healthcare improved a lot. And the best part was they were able to use it to their advantage.
[00:21:44] Carol Vassar, podcast host/producer: Ayanna, same question. Any examples of how what was learned in this curriculum actually changed knowledge, skills, or even behavior?
[00:21:55] Ayanna Sterling, teacher, Southeast Alabama Area Health Education Center: Absolutely. So let’s start with the fact I’ve worked in healthcare for over 18 years. [00:22:00] Started out working in an E.R., so the importance of people learning how to navigate what some of us may consider as simple things: knowing to go to the eye doctor when you have issues with your eyes or go to the dentist for your teeth, that utilization piece and understanding who is my primary care provider, and again, echoing what Christine said regarding them having the understanding that they can have conversations in private and what that looks like. All of those things really impacted, I think, both sets of students, both the high school students and the AHEC Scholars, one from a more professional standpoint with the scholars to where they became more aware of the necessity in teaching those things to their patients and actually engaging with patients to let them know, especially those younger patients, once they get out into the workforce, the importance of advocating for themselves and understanding how to navigate healthcare. And then, again, on the side of the younger students, the high school students, [00:23:00] just knowing what their rights are as patients in the United States healthcare system.
[00:23:05] Carol Vassar, podcast host/producer: Absolutely, so knowing that they own their medical records, they are the owners of their medical records, things like that. Let me ask this question of everyone in the room, but I’m gonna start with the teachers. What do you see as the value of the content that has been developed here to the teens, or to you as teachers having this available to you through a simple Google search? What’s the value in that?
[00:23:29] Ayanna Sterling, teacher, Southeast Alabama Area Health Education Center: One, health literacy is absolutely important. Low literacy, as we all know, leads to poor health outcomes all throughout the lifespan, right? So the earlier that we can include teaching surrounding health literacy, the better. And one of the benefits that I found just as a professional and also a researcher, I’m a doctoral student, was that all of the information, it really aligned with some of the information that’s already out there by AHRQ (Agency for Healthcare Research and Quality) and some of those [00:24:00] nationally recognized sources. So for me, having an additional credible source of information kind of supports that additional layer of support to existing efforts. Us here in Alabama are very gracious that it became nationally available because otherwise, we wouldn’t have had access to some of the great materials that have been provided through the toolkits.
[00:24:23] Carol Vassar, podcast host/producer: Christine, how about you? What’s been the value for your students and for you as a teacher and an instructor and a person who’s there in a high school doing the good work.
[00:24:34] Christine De Guzman, teacher, Waukegan, IL: As a health education teacher, I think that this is an essential part of the curriculum. It helps in laying the teen’s foundation of good health. It should be one of the basic knowledge that teenagers learn from their health education classes. Now, five years ago, I was an immigrant, too. The healthcare system here in America is far different from the Philippines, and so personally, I learned a lot from the lesson plans. I gained [00:25:00] more confidence in dealing with and managing my own health needs. That is very helpful information, not only for myself but also for my children who migrated here with me.
[00:25:10] Carol Vassar, podcast host/producer: Kate and Denise, real quick. How does it feel when you hear these teachers just with these glowing reviews of the curriculum. And also, where do you want this curriculum to be in a year, three years, five years?
[00:25:26] Denise Hughes, Nemours Children’s Health: Look, to me, it’s amazing. Something that we just shot in the dark, created with input from students across Delaware. One, that was amazing that the students were willing to take that leap of faith in us. To let us incubate this in their classrooms and be very honest and real with us and be like, no, we don’t like that, or, yeah, maybe you should add this. Like they had so much input into the content that was created. Who knew insurance was gonna be the most exciting part of this curriculum? They want more information on insurance. We were like, this is the most [00:26:00] boring,dry, how do you make insurance fun piece of it? But that’s the piece they all seem to latch onto, like, feedback sheet after feedback sheet. That’s what we got is they want it more on insurance. And we were like, oh my God, we gotta give them more on health insurance. Adults don’t understand health insurance. So it speaks a lot to the complexity of the healthcare system.
[00:26:21] Kate Blackburn, Nemours Children’s Health: So, prior to coming to Nemours, my career was an adolescent health promotion, so anything with teenagers that I can get my hands on always sparks a little kind of joy in my day and my life. I was always really, really excited to work on this project and to partner with Denise.
[00:26:38] In terms of where we wanna go next, I mean, I think there’s a million different things that we could do in terms of expansion across the country: different groups, more focus on hope schools, all kinds of different things that we could do that way. But what’s been really interesting in the past couple of weeks, and I haven’t even mentioned it to Denise yet, is that we’re getting increased requests [00:27:00] internally from our adolescent medicine doctors and other patient folks that are saying, can we convert these so that they feel less like classroom content, that we can use ’em in waiting room settings and brief interactions with the patients. So that might be our next frontier of work to kind of reform it so we can get it not only within our health system but allow other health systems to utilize that as well.
[00:27:26] Carol Vassar, podcast host/producer: Thanks for listening to “Empowering Teens and Young Adults to Navigate the Healthcare System” with me, Carol Vassar, and our guests, Kate Blackburn, Denise Hughes, Ayanna Sterling, Kate Marianello, and Christine De Guzman.
[00:27:41] Do you know of a school system that could employ this free curriculum with its students? How critical is health literacy to you, your family, and your colleagues? What’s working in your community? Visit nemourswellbeyond.org to submit a comment or leave us a [00:28:00] voicemail. While you’re there, check out our other episodes and subscribe to the podcast.
[00:28:06] Join us next week as we come to you from the Pediatric Academic Societies meeting – PAS – in Washington, DC, with an announcement about the podcast. We’ll explain the changes you’ve been hearing and where we’re headed next. Don’t miss it until then. Remember, together, we can change children’s health for good, well beyond medicine,
[00:28:28] MUSIC: Let’s go, oh, oh…well beyond medicine!