Health Literacy As A Quality Standard

Health literacy is not a soft skill. It's a quality infrastructure issue.

You've invested in an outreach vendor. You've built the workflows. You've rewritten the scripts twice. None of it matters if the member on the other end of the phone doesn't understand what they're being asked to do — or why.

Helen Osborne has spent 30 years asking one question: what can all of us do to help improve health understanding? She's the founder of Health Literacy Consulting, author of Health Literacy from A to Z, and host of the Health Literacy Out Loud podcast. My co-host Jennifer Nguyen and I dig in with her.

We get into why the original definition of health literacy missed the mark, the six factors that affect understanding, where health literacy fits inside CAHPS and Star Ratings strategy, and a story about a Spanish-speaking member who read "once a day" as the number 11 — and ended up in the ER three times before anyone figured it out.

If you lead a quality program, build outreach materials, or own member experience at a Medicare Advantage or Medicaid plan — this one's for you.

Find Helen at healthliteracy.com.

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Beyond Quality is hosted by Rex Wallace of Rex Wallace Consulting. Learn more at https://www.rexwallaceconsulting.com/

Transcript

SPEAKER_00 0:00

Hey guys, it's Rex. I want to quickly remind everyone of an upcoming conference. It's one of my go-to events of the year. Every year. It's also the best named conference in our space. It's Kuala Palooza. It's put on by our friends at Rise who are collaborating with us on season one of Beyond Quality. It's being held June 28th through the 30th at the Omni PGA Frisco Resort and Spa, just outside Dallas, Texas. We'll be discussing and breaking down the most recent regulatory insights on stars, HETIS member experience. And Kuala Palooza doesn't just focus on stars, it brings topics like Medicaid, interoperability, and digital quality into the conversation. In the format, Leans Interactive. Think roundtables, measure level work groups. If you're in the healthcare quality world, I highly encourage being there. If you come, I'll see you there. Thanks. See you, Qualapalooza. Quality improvement in healthcare. It's typically described as a framework for systematically improving care. In reality, it's an endless struggle to align policy, data, and processes with human behavior. Join the RWC team and guests from across the industry as we tackle the toughest challenges facing quality today. From culture to capital, from strategy to technology. Join us as we go beyond quality. Hey everyone, welcome back to Beyond Quality. I'm your host, Rex, and today we're discussing one of the most underestimated lovers in all of healthcare quality, and honestly, one that doesn't get nearly enough airtime in the managed care space, period. We're talking about health literacy. Now imagine your goal is to improve the Medicare star ratings at your or at your health plan. You've invested in an outreach vendor, you've spent weeks building outreach workflows, drafting and revising scripts, coordinating the work with all these cross-functional departments. What happens to all that effort when the person on the other end of the phone doesn't understand what they're being asked to do or why? That's a very basic example of the health literacy gap that we face. And for many different segments of your members, it impedes quality improvement work every single day. So today we're exploring health literacy not as a soft skill or a nice-to-have thing, but as a quality infrastructure issue. Joining me today are two people. First is my co-host and colleague, Jennifer Nguyen. Jennifer's um a consultant with uh RWC, and I'll let her tell a little bit more about herself in a second. Second is the best person on the planet to help us understand health literacy. Helen Osborne is the founder of Health Literacy Consulting, the author of the award-winning book Health Literacy from A to Z, and the host of her own long-running podcast series, Health Literacy Out Loud. Jennifer and Helen, thanks so much for being here. Welcome to the show.

SPEAKER_01 2:45

Thanks so much for having us.

SPEAKER_00 2:47

Yeah. Can each of you give just a little more background on yourself so our listeners know a little more about you? Jennifer, do you want to start?

SPEAKER_01 2:54

Yeah, happy to. So I am a quality improvement consultant with RJBC. I've been here a little bit over a year and a half now before joining. I spent several years on the health plan side as a STARS leader at a local regional plan in the Pacific Northwest where I led the Full Stars program. Before that, I worked across quality, supporting all lines of business. I also had a brief stint in the nonprofit sector side in patient education and advocacy. My background is in public health and health education. And that background really shapes a lot of how I think about quality, approach quality, not just the measures and the ratings, but like a genuine lever of improving health equity and health outcomes. And that background in public health is really why I have such a deep interest and love and passion for health literacy. So I am beyond excited that we have Helen here with us today. So yeah, Helen, please introduce yourself a little bit too.

SPEAKER_02 4:02

Well, thank you for inviting me to be part of this for both of you. My background is I'm an occupational therapist and I worked in psychiatry for quite a while. And I was, I also have a degree in education. So in my hospital and outpatient days as a clinician, I was always at that intersection of health and teaching. And I was working at a small community hospital in Boston in the 1990s. And in 1995, I read an article that's in JAMA, Journal of the American Medical Association, about something called health literacy. Like, huh, I never heard that term before. It was by Mark Williams et al. and it was a research paper. And in the research findings, their conclusion was that half, more than half of the adults in this country struggle to understand written health information. Well, I was overseeing all our patient teaching programs, and I looked at their handouts that looked really good. They looked nice on a piece of paper. We had good information, we used them in our teaching programs. And then I looked more closely at our patients. Our patients were from all languages and lands and levels of educational attainment. And oh, when I saw them, they also had a major mental illness. And it was like the clunk on my head. I got it. Just because I wrote it, just because it had great information, just because it looked good on the piece of paper, did not mean that people could necessarily understand. And that started my journey in health literacy. I soon left my clinical practice to help answer that question. I still have 30 years later almost. What, okay, I get it. What can I do? And I've expanded it to what can we do? And that has led me down all this amazing opportunities I have had trying to answer that question. What can all of us do to help improve health understanding? So I'm delighted to be talking with an audience talking about the quality part of this and how it it really should be part of our everyday infrastructure. So thank you.

SPEAKER_00 6:39

Yeah, it's uh it's such an important one. And yeah, Jennifer, maybe we need to propose it's a SARS measure, right, in the in the in the future, uh specifically around health literacy. Like it feels like it could be, right?

SPEAKER_01 6:52

Yeah, no, absolutely. I don't know what our um health plan um partners will think about us proposing new measures, but I'm all for it. Um yeah, so I mean, I would love to dig into that a little bit more, Helen. You know, you've been in health literacy for so long now, really writing one of the key literature pieces in the field. I'm curious um from your perspective, you know, when when did you actually see the shift of, you know, others in the healthcare field, not the folks in the health literacy community? So like the clinicians, the insurers, the quality quality leaders, when did all of the rest of the healthcare field really get a hold of this health literacy concept like you did? Um, that it wasn't a patient issue, that it's a systems issue, that we need to band together and do something about it. Um what do what do you think? When was that little turning point? Or has it really taken off yet?

SPEAKER_02 7:54

It's growing, it's evolving, it's constantly changing. That paper I told you about with Mark Williams and others, it was about a medical, a clinical encounter between one doctor and one patient. That's where health literacy got started. The term health literacy, and there's also a story about how that term came along, and is it even the right term? But it was about that singular medical encounter. Well, that was 30 years ago. Healthcare encounters have changed so much now. It's not necessarily a doctor, it may be a team, it may be a whole group of providers or communicators, or in the clinical realm and public health, like you're in, or in the community wherever health happens. And we're also not talking to just one person at a time anymore. Lots of people are bringing family members, their caregivers, there's a whole constellation on each side. So I think that's part of the shift that medical care has changed over time. I think also that there's been a gradual adoption now worldwide of what health literacy is and why it matters. Yes, it's as far as I know, it started in the United States, as I said, in that medical encounter, but it has grown and morphed and changed, and groups everywhere have come up with their own definitions because it took a while until we got to an okay place with the definition of health literacy. So it has morphed and changed. I can't pinpoint when that really changed, but we are getting there. An acknowledgement of where we are has to do with the definitions. Do you want me to speak about that a little bit?

SPEAKER_01 9:47

Yeah, yeah, I would love to.

SPEAKER_02 9:49

Okay. In the early days, health literacy was, and I talk about, you know, 30 years ago, we needed some kind of a definition. Um, and when I say we, I'm not the first that came up with it. Obviously, there was that one research paper. There was also a book called Literacy and Health by Doke, Doke, and Root, but that was really about it. I'm certainly an early adopter on this. Um, but back in the early days, uh, some people had to come up with a definition, and the definition they came up with had to do with the other, the patient's ability to read, understand, and act on health information. That never felt right to me, but I guess it was a place to start. Um over the years, with gradual understanding about health communication and abilities to understand and uh speak in a way that people, you know, present information in ways that is understandable, it has changed. And I really like how it is represented the change came up in the public health document, Healthy People 2030. And I hope that your listeners know about that. They now have the definition of health literacy, and it has changed from that original one that kind of missed the mark. I think it was good enough in the beginning, in that they have two definitions and they go in tandem. And people can find this by going to Healthy People 2030, but I'm looking at it right here so I get it right. There's two definitions are personal health literacy and organizational health literacy. Personal health literacy is defined as the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. And that's pretty good. But that's putting the emphasis on the individual. I really think it's changing more to systems too, and this parallel definition in Healthy People 2030 is called organizational health literacy. It's almost the same as the one I just read. I'll read this new one with a little bit of a tweak. Organizational health literacy is the degree to which organizations equitably enable individuals, define, understand, and use information and services to inform health-related decisions and actions for themselves and others. It's setting up this system. And I just want to tell you, I needed a definition of health literacy too, all along. So now I started my own consulting business and did writing and teaching and all this good stuff that I've done along the way. And I also told you my background is in occupational therapy, which is all about function. So I needed a functional definition. And my definition then still I think holds up today. It may not hold up in a research mode, but I still like it. And the definition is that health literacy is a shared responsibility between patients, anyone on the receiving end of health information, and providers, anyone on the communicating end of health communication. We each need to communicate in ways the others can understand. And when I do this in presentations, I often lock my hands like this. We're all intermeshed. We each, it's all about that mutual understanding. So the providers, if a patient says, I have pain, the provider needs to understand what that really means. Where the provider and anyone can conveying health information, the provider might say, you need to take this medicine, you know, once a day. And the patients really need to understand. You know, is that in the morning? Is that before meals, after meals, what if I forget? So there's so much more to the basic, what seems so superficial information. So it's all about that mutual understanding on both ends. But the responsibility truly falls on the providers too. And I would think that that in large part falls on your listening audience, the systems.

SPEAKER_01 14:42

Absolutely. Health literacy is such deep systems work, and I feel like to your point, you know, we've evolved over the past however many decades. And I think there is finally this shift, this aha moment of, you know, it the onus is on the providers and not just healthcare providers, but you know, the also the operational side. Like most of our listeners likely are on the operational side, um, kind of building the infrastructure, building the programs that you know we partner with healthcare providers to deliver. And I love earlier you um you mentioned the connection between health literacy and equity. Um, and you know, that's part of the part of the work. Um, so I would love to kind of um dig into that a little bit more, you know, like how health literacy and equity are so intertwined. Um, you know, where do you think healthcare systems, you know, support bringing that together, closing the gaps? Where do you think healthcare systems are still falling and not, you know, adequately addressing those disparities as they're approaching health literacy, providing, you know, support and care for patients? Um, can you talk a little bit more around that connection between health literacy and equity and where those gaps still are?

SPEAKER_02 16:11

I could go in so many directions. Yes, we want to hear all of them. I want to talk about them. When we talk about people's um ability to understand, um, this is something I feel very passionately about is about the humanity that what we all bring to any encounter. And in my book, in my works, in my podcast that I do want to talk about, and I'm going to make reference to that in a moment. It's really understanding the people part, kind of knowing your audience. And health literacy can affect all of us. I certainly have many occasions and many stories I can tell you when I didn't quite get it. If the information was about me or someone I particularly care about, I might get it after a while. But some people are even more disproportionately affected or have even more trouble. And I tend to focus on six reasons, but there's more than six. No one's as remember, I told you I'm good at like writing things on one piece of paper. No one's as neat as all that. But I'd like to talk about factors of literacy. Yes, that is a factor. If you struggle to read or use the printed word, you almost certainly will have trouble with health understanding because so much of it is in print or on the web. But their other issues have to do with age. Those of us who are older certainly were dealing with more diseases and conditions and medications, and oh, also life happens, and what that adds to a variable. Um, but also the other end of age for a young person who goes from going to the pediatrician with their parents to now being independently responsible for their own care. How do they understand and able to use health information? So literacy, age, language certainly is a factor. And in the United States, it's probably everywhere now. We're becoming a more multiliter uh language society, and for someone to um be able to speak in English, you know, to talk about the weather or the movies or what to eat, they might be able to do that. But in healthcare, for all those hard how and why cause and effect decision-making conversations that are so difficult, it can take a lifetime to be able to talk about that. So language is a factor. Culture, certainly, the context of which we understand information, our values and our traditions and our habits. Another factor that I do not think gets enough attention has to do with the role of disability. And when I talk about if you have diminished or you know, difficulty seeing or hearing or remembering, that's a hard way for information to come in and hard way to get information out. And another factor I always like to talk about, and certainly I have my own experience, has to do with emotion. Um and emotion, the sheer emotion of being scared or sick or cold or in pain, topped off by all the cognitive challenges that you know individuals are facing, and then the emotions and the depression and stress and and all that is happening in there. Those can all affect health understanding. Now we don't always carry all of those all the time, but I do like to say that in ways health literacy is this great equal opportunity employer. At one time or another, we can all struggle to understand health information. So that's one I wanted I really like to be true and acknowledge that we're all people. And it's not just health literacy isn't about them. Why don't they get it? And that was part of the problem with that original definition. I put the burden on the on the receiver of information, but it's not. We can all struggle, it's very human. And for your listeners who might, you know, who chose to do the work that they're doing with health plans and insurance and medicine and all of that, that's great. They chose to do it. But be thinking about the person who had the misfortune to be ill or injured today, didn't ask for it, and didn't go to a school and didn't choose it, all of a sudden they have to deal with critical decisions and a high level of information. It's a very long-winded way of answering part of your question. And we didn't even get to equity. So I'm gonna take a where do you want to go from this? I'm ready to talk about equity, ready to go wherever you want to go.

SPEAKER_00 21:16

You you you paint such a compelling picture, Helen, of of how how how important of an issue this is, right? We we talk a lot about um whether whether we're consulting with health plans or sometimes health systems through through a health plan, but we talk about the um the respect that a patient or a member feels and how that plays such an important role in whether they even listen to the provider in the first place, right? So like the guid the guidance that we the provider gives to a patient um is heavily influenced by how much respect they're giving to that patient. And I think part of it is ensuring that that patient understands what we're talking about. And in the fact that you talk about the the different languages too. I was at a conference last year and I can remember someone at our table talked about I think it was a care manager at their health plan was talking to a patient and he was taking this medication but once per day and and but he was having like he he'd been to the ER like three times and they couldn't figure out why. He was having some kind of massive reaction and they're like like like he's he doesn't appear to have any you know um any um whatever like like uh when when when the plans you know react with each other or when drugs react with each other or act right like they couldn't figure out what the problem was and he was a Spanish speaker as his first language and had knew very little English and they finally figured out that his medication said take once per day and when he saw once you know he read once eleven right so he was taking eleven pills a day um just because he didn't understand the label and and no one had taken the time to really figure that out and he he was okay in the end but he had some you know he was under some pretty massive pain for several days or maybe a couple of weeks until they finally figured it out but but we have clients in Hawaii Puerto Rico Oregon Arkansas New York I'm just picking some pla they all are very different and you talked about the culture aspect I mean not only with countries but with with regions within our own country right like the communication to someone in Hawaii and about the the um and Jennifer used to live there so I know you you know a lot better than me but the nuances of living there and how to communicate something is so different than the culture in Puerto Rico versus Oregon versus New York versus Arkansas. It just makes me think it makes me realize how important this is. If if I'm a vendor I should if I'm a vendor doing outreach to members, I I have a big responsibility to I think understand these nuances and and ensure I'm communicating in ways that mem health plan members and and patients of provider systems need to understand. I just think it's you're you're you're you're painting such a compelling picture.

SPEAKER_02 24:12

I'll pause there if you want to listen to this and I talk about this and I'm glad you find it so compelling um one thing it can do and when I speak in person I I take clips of this I do have this podcast series Health Literacy Out Loud I just today or I'm about to record my 275th episode. I just have to the AI episode that's the latest one that's 270 something but I record ahead of time like you probably record ahead of time too but it's what those are their interviews like you're interviewing me I interview others but I interview others who can be talking about their own experiences. And for each of the factors I'm talking about I have interviewed those I interviewed a doctor who of family medicine or internal medicine he's also a well known in the health literacy field he also himself is profoundly deaf. And he can talk about the experience of you know communicating as the clinician but also someone who's deaf and you can listen to that story and listen to Mike McGee tell that story for himself on there. It's just so moving and for each of these issues I do have people telling their story so none of us are talking about others they're telling their own story. And the one that I think that had the most meaning to me especially in the beginning was um why am I blanking on his name right now? Archie Willard I consider Archie Willard my hero. Archie Willard was one of the very very first people I ever interviewed for my podcast series he's he is now passed on. Archie Willard was and we were I'd see him at conferences and we were on hugging terms and he was amazing. He also was a speaker himself and he also spoke to the American Medical Association. He was on his hospital patient and family education committee he was wonderful he was wonderful and Archie didn't learn to read until he was 54 years old. Wow and that's when his wife read something in the Reader's Digest about then Olympic athlete um Bruce Jenner now going by a different name has had a few life transitions but it was not about the Jenner's um physical abilities you know as an athlete but about his severe dyslexia and she said Archie that sounds like you and Archie was tested and indeed he was severe dyslexic. So in the podcast with Archie he can talk about what healthcare is like from his perspective and I said because I don't know I've always been it's always been easy for me to read and I said Archie you know what's it like in healthcare? What's hard? Is it the handouts is it the instructions is it the checklist? And he goes all of it I think if your pod if your listeners ever listen to my podcast I always recommend that one with Archie Willard to hear what it's like for someone who does struggle to read.

SPEAKER_01 27:59

So that is that is profound like you know we don't ever I think in the work that we do right like we we don't see all of these different aspects and I love that you're really emphasizing that it's so humanistic and it's so individualistic and I think you know from our perspective we there are certain organizations that you know try to impact health literacy in really advanced ways compared to those early um earlier clients that are still on their way trying to navigate right um but hearing this story it's just we try to approach it some organizations do it well approach it from a systems perspective some do it as a blanket perspective some are doing it a little bit better in terms of maybe carving out you know rural how to address rural folks versus urban folks and different cultural aspects but I don't think we ever think about it from this like everything's got to be so individualistic. You need to really think about all of the various disabilities that you mentioned and like you know it's not just a language competency. It's not just a check the box and you know I want to really bring this around and connect the dots with folks that might be listening to your health literacy podcast, those that are listening to this quality podcast you know I think our quality leaders are some might be familiar with health literacy right but they're approaching it from this perspective of um caps and member experience and member satisfaction. So a lot of the things that they're doing in the quality space are how do we make our materials more patient friendly? How do we make them more you know appealing visually appealing revising language and things like that. But I feel like you know there are some health plans that are still very early and they might just be updating forms so that they can check the box um meet you know the sixth grade reading level and things like that. You know, from your perspective you know I think there's so much that quality leaders can really do to kind of impact this space but you know like what what would you like our quality leaders to take from this podcast?

SPEAKER_02 30:35

Like how should they move their culture in their organization to be more for more forward thinking about health literacy like what what is it that we can do if it's just a you know if we're taking one thing away from this podcast aside from listening to Archie's podcast and the other 275 of them exactly yes but so I think to make health literacy a habit it's it doesn't need to be just one more add-on thing and it's certainly not one more just checkbox does this meet the right reading level and I am happy to opine on why that is not the solution um not as simple as solution but really as I sometimes say to to become allergic to these multi-syllabic mouthfuls that we do all the time and turn that allergy into action and the action is to work toward communicating whether it's in print in person on the web over the phone in all our many interactions to communicate in ways the other person can understand. That's what it's really all about. Plain language you talk about reading levels that is one teensy little tool and that's actually not necessarily the right tool to do it. But certainly your job isn't done by just going to your word processor and spitting out a number that you think check now I can go home for the end of the day my job's done it's not it's really making it inside of you remembering why you do this work. You do this work because you care and how can you communicate whether it's plan information or medical information or public health information or community education you truly want the other person to understand there are a lot of ways to go about doing that.

SPEAKER_00 32:57

When Helen when when um I'm I think of some of the health plans that that I've personally worked with some of the challenges they they had that I would put in this category of health literacy where you know I've seen some make improvements such as rather than sending you know a two page letter with with you know tons of text you know three four hundred words on it they changed it to almost like an infograph with just a few call-out boxes and some text and some visuals. It felt like it was much more engaging for most people. And then I think about plans that have a a portal right an online portal where they're trying to make it more visually appealing and and understandable and engaging. If someone was looking for best practices on kind of how to do those kinds of things are are maybe those in your podcast or and I've not read your book yet it's on my list is are those like where where would you point people to kind of learn learn how to make their materials more engaging?

SPEAKER_02 34:05

Well if you're talking about materials to be more engaging that's different from the encounter that's more engaging. So I I do talk about a variety of different ways to do things but you're talking about your question was about materials so I want to address that. And one way to do that a great tool to do that is plain language. And people may be dismissive of that like isn't that I hate the term dumbing down but my response is no it's smartening up because we want to communicate in ways people truly can understand. And for those of you the people you're working with who are counting things and looking at costs and all that think of how much money it costs if someone doesn't understand the material and then calls or then goes back to the emergency room because they took 11 times the amount of medication because of our choice of word once. So there are a lot of ways to do it but plain language is described one of the definitions from the International Plain Language Federation is a communication is in plain language if its wording structure and design are so clear that the intendant's audience can easily find what they need, understand what they find and then use that information. And there are many components to this and it's you know it just because you you wrote simpler when you were a kid and you write more complicated now that you're being paid to use big fancy words or in graduate school you need big fancy words to say the same thing three different ways. Plain language really again be thinking of the other person. And plain language includes the organization of the information the tone your word choice yes your sentence structure of course the design and the opportunity for interaction and I guess that gets to the gist of one of the reasons I'm not a fan of just thinking your job's done if you know a reading grade level and then you change the word diabetes to sugar because it's got two syllables. Well you miss the mark but you you can pass the test of a readability is that's only looking at one factor. Those reading grade level things are designed by some program or somewhere for how many syllables in a word and how many words in a sentence that that does not cover this whole longer list I gave you of all that's included and how to make information more usable and understandable.

SPEAKER_01 36:58

Yeah I mean I I love that you're connecting all of the dots across all of the topics right health literacy really is the foundation and it should you know be part of the framework for quality not just addressing health equity health equity and disparities but like it's that thread that you know quality leaders are really trying to hedge towards health outcomes right and if we don't see that this is a baseline like you if you don't have it your quality programs are not going to be successful because you're not speaking in a way that is clear that's understandable that you know our patients and members are you know they rely on us for you know the clear communication to help support them like we're in the business of patient outcomes and if we're not you know communicating clearly clearly and we don't understand each other we're not gonna get there like I love you know all of the key things that you've kind of touched on um and how important it is across the continuum of care.

SPEAKER_02 38:08

Yeah yeah ask you a question both of you please yes how do you know if you've met your quality goals and where I'm getting at is that just through a questionnaire or a survey and if it is who is able and willing to complete that in a way that's meaningful for people who are making decisions on the results so I'm turning it back to you to ask about that. Yeah.

SPEAKER_01 38:37

Bex do you want to go or you want me to take it? Go ahead yeah so the short answer is all of the above you know so you know there's health health outcomes that are kind of claims based you know did your patients that are eligible for a cancer screening get their cancer screening that's pretty clear. But you know the way that a quality leader might address that is they might send a reminder to say Jennifer you're due for mammogram but you know if the communication's not clear if the you know if what I need to do to go schedule it is not clear then I might miss that mark. There's also survey questions as well you know a member experience I mentioned caps earlier. It's like a 60 70 question patient experience survey of you know how is your interaction with your provider with your plan yes we all love it how exactly how easy were the forms you know like and for me I may or may not answer that survey it's really long I don't know why I need to do it aside from the you know being on this side of it. You know my my parents would never answer that survey their English is not their first language they won't understand the questions they won't understand why they need it. A quality leader might send them a postcard or give them a call to say hey we really appreciate your feedback will you you know take the survey if you get it you know but how are we how are we in the quality seat really moving the needle on health outcomes getting preventive services member experience answering a survey if we're not bridging that gap with our patients and our members in a way that really resonates that they can really understand. So yeah we you know quality leaders get measured in all kinds of ways but I think it boils down to what you said at the very start you know the work that we do is very humanistic.

SPEAKER_02 40:51

We need to see each individual um everything about them so that we can you know really support them provide them the care that they need um in the way that they need surveys are interactive and they're hard to answer and I sometimes like you I like okay I'll answer it and then I go through it and I just give up sometimes I get to for many reasons I give up and don't complete that. So those it's very hard to write a good questionnaire and a good survey and there have been some papers about that and I've probably done podcasts on that but a long time ago there was a whole initiative like how do you evaluate a usable survey and that's a tool I haven't heard about in years but I think that's key to the kind of work that you're doing. And I'm just gonna make one other point because we are talking about the people side of this I had a doctor um doing something to me it was some surgery I guess his surgery obviously it worked it's that's great but I really did not like someone in his office I felt that I was being dismissed and not spoken to in a respectful or understandable manner. It took me and I'm in this business and I have you know I can I have a lot of skills going into this it took me over a year to have the courage to speak up about why I was trying to avoid this individual wherever I would go and that took a great deal of courage and then I felt as though I got dismissed for that so it takes so I would recommend for your listeners get some training on how to write a good survey there are people out there who are experts at that one.

SPEAKER_00 43:00

And then remember the people side and if you can't remember the people side in healthcare think about what it's like if you complain about your computer or your car or something that you may not know so much about what kind of courage does it take to speak up about that and get your needs met and even courage to so I I have family members who who don't have good experiences with one of their doctors but they but the process of finding a new doctor so we we're well I think when we think of health literacy we talk we think a lot about the actual like in the moment of receiving care the communication with the provider but even finding care, navigating the provider finder online and understanding you know sometimes it doesn't know who w which plan you have and you have to type in your plan and it's very confusing. And then do you have to pick a specialist that's attached to your PCP or not and Yada yada yada. It's very complicated. And not not to mention the data's usually not even accurate, but I just I know I know many people who won't find another doctor because of the pain involved in trying to find a new doctor. So instead they just put up with a doctor that they can't communicate very well with, right? So it's sort of a one health literacy problem leads to another health literacy problem. I kind of see those both as health literacy problems, but but um yeah, there are so many opportunities, I think, specific to what we're talking about today in the whole care journey.

SPEAKER_02 44:34

When do the two of you use the term continuum of care? That is a topic that I talk about a fair amount, and I talk about how health literacy is a part of it, and maybe your listeners can find themselves in there. I talk about four components again. I neatly put them in a little neat little package, but it's not necessarily that way. When I talk about the continuum, I talk about wellness, access, illness, and self-care. And maybe your listeners can find themselves somewhere in that. For wellness, I think of issues like disease prevention and health promotion and making your lifestyle choices. Um for access, that seems key to what your listeners are doing about the health plans and all that, about choosing plans, about paying for care, and also the access of just how do you even navigate our system metaphorically, and how do you navigate the system physically? Like, do you go in the ambulatory entrance of a building or is that for ambulances? Hard to know sometimes. Um, illness, that's where health literacy got started. That's where the stories I told you in the beginning were about, and that's really about understanding your diagnosis and your prognosis and making shared decisions and understanding your, you know, your immediate treatment you need to do, but also self-care. And there's so little, such a small fraction of time is spent in that actual medical encounter, and all the rest of our lives are spent in taking care of ourselves or our loved ones. That's where most health happens. And think of all the health literacy skills that are needed to be able to do that, to know when something is an emergency, and if it's an emergency, where do you go? Which of your many options? How do you handle transitions from one provider to another? Um, what do you do in the middle of the night or on a weekend? You know, what what if you forgot your medication? Do you take two now instead of one? All these issues. So wellness, access, illness, self-care, health literacy happens in all those ways.

SPEAKER_00 46:49

Yeah, I've actually had some of the some of those questions, you know, and and didn't know the definite answer myself. So yeah, I can I can relate.

SPEAKER_01 46:56

Yeah, I love how you've packaged it up neatly for us there. I mean, honestly, like what really resonates in all of this conversation is that health literacy isn't just something that sits on the side of the health literacy field, right? It's intertwined, it's ingrained, it should be ingrained in every aspect of care, in care delivery, in receiving it. It's foundational for everyone that is listening to this podcast. And if it's not part of their organization now, hopefully they can listen to this and walk away and listen to your 270 uh other episodes, Helen. But, you know, really um it's systems work. And, you know, like this field has been around for several decades, and we need to really make sure it's ingrained in everything we're doing today. It's not a future initiative, right? Um, we're continuously um trying to expand on it and making sure that we're meeting patients where they're at, um, making sure that it's an actual capability that organizations have. And if they don't, they need to build it now if they want to deliver safe, equitable, high-quality care for all of their patients.

SPEAKER_02 48:18

I'm glad you and team are all doing this work. Keep going. Yes, we're yeah.

SPEAKER_00 48:25

I think I think I think with our listeners, yeah, I I see this work, you know, um being being embedded in so many different areas, but you know, whether it's operations or marketing or especially like customer experience, member experience, m member experience, there are several member experience measures in in the quality programs that we advise on that our health plan customers are scored on. And this I I I I just I think this fits right in there. And this, you know, uh I imagine the improvements you could make to your members' experience if you really adopted this stuff aggressively, right? And and had a more uh robust focus on kind of all all things all things literacy. Because Helen, I think, I think if nothing else, I think I think at the bare minimum, I think you have expanded so many people's definitions of literacy by not just thinking it's like you said, um uh like uh grade school language or whatever, right? But it's uh culture and geography and age and disability and and all of these different things that that affect virtually every member in some capacity, right? And and and should make us think about this when we're communicating with those people.

SPEAKER_01 49:40

You missed the shared responsibility, Rex, where it's not on the patient, it's on us. Yeah. Right? It is. Yeah, yeah. Yeah.

SPEAKER_02 49:50

It's on a lot of us.

SPEAKER_00 49:52

And Helen, I know um you have a book that we referenced, health literacy A to Z. I'm I'm curious if you have another book that you would um not necessarily one that you wrote, but we'll we'll say everyone should read health literacy A to Z. Is there another book that you think everyone should read?

SPEAKER_02 50:07

Yes. And I heard about this book when I used to go to health literacy back before COVID, used to like go to conferences and you know, someone say, read this book, and it was like, oh, okay, I will. And then I'd hear about it again, like, okay, I will at some point. And at some point it was like, oh, I've heard about this so much. I am going to read the book, and it came out a while ago. Um, it's called The Spirit Catches You and You Fall Down. The subtitle is Among Child, Her American Doctors, and the Collision of Two Cultures by Anne Bataman.

SPEAKER_00 50:51

Wow, okay.

SPEAKER_02 50:53

It really is a must read. And I was flying from one coast to the other. I had a long flight, like I bought the damn book, and I read it, and I couldn't stop. I couldn't, I just kept going until I read the whole book. And it's probably one of the very few books I have two copies of that I have, and I've probably given away even more than that. And I even heard the author speak about it. It was brilliant. It takes place in Merced, California. It's about a Hmong family that goes there, H-M-O-N-G, they came from Vietnam. Um, and I think they were from the hills of Vietnam. And when they get to California, their precious, I mean, they're all the story of how they got there, and their precious, precious little daughter, Leah, has severe epilepsy that the family refers to as the spirit catches you and you fall down.

SPEAKER_03 51:56

Oh wow.

SPEAKER_02 51:57

And then this book is written in alternating chapters. One chapter from the family's perspective, one chapter from the medical record, and it goes from their understanding of illness, you know, the medical team understand it a certain way about epilepsy and all of that. The family understands it that maybe someone sl uh slammed a door too loud. What do you do for little Leah? And the interventions there, how do you diagnose this? How do you treat this? Uh it's so powerful. Um, and that is that is the clash of the two cultures. In fact, I once had um the opportunity to interview the author. I was moderating a listserv discussion about that and about that. I just felt so honored to be able to do that. And interestingly, it's this book, when little Leah died, she wasn't little anymore. She grew up, I don't know, maybe in her 20s or 30s. I don't remember exactly why. Her death was on the front page of the New York Times.

SPEAKER_03 53:12

Oh wow.

SPEAKER_02 53:14

It is definitely, I can see the look on your face. It looks like neither of you have read this book.

SPEAKER_00 53:19

No, I've never heard of it. And I read a lot, but I I will ask you to.

SPEAKER_02 53:22

And this book, it didn't just come out, it's about 30 years old.

SPEAKER_00 53:24

Yeah.

SPEAKER_02 53:25

Uh I really recommend it to you and all your listeners. To me, that just stuck with me. That I don't know who's right.

SPEAKER_03 53:33

Right.

SPEAKER_02 53:34

You know, I I my work is in the medical field, and that's one way about it. And I appreciate the role of different culture. I'm not Hmong, but I understand, you know, I fascinated learning about it. And I think it was so powerful that if I had to recommend one book, this would be one. And if they want to read health literacy from A to Z, go for it. Um, that book's been around. I have many editions of it now, the latest one. It includes a lot of stories from my podcast as well. And that's highly used in health training programs. And students tell me they really value that first-person account. It's not only what to do and why to do it, but a story or a vignette like I shared with you a little bit. I those seem to really resonate with some people about why it really matters, not just academically or research policy-wise, but on the people side.

SPEAKER_00 54:30

For sure. Um, last question. Where can people find you if they want to follow you or learn more about you?

SPEAKER_02 54:39

Well, one sign that I've been doing this a while is my domain is healthliteracy.com.

SPEAKER_00 54:49

Yeah, you have to pay some money for that right now if you try to find that.

SPEAKER_02 54:53

I get little notices about, you know, you want to sell it? You want to sell it? When I got it, it was $35 because nobody was buying domains and I didn't even know why I needed one. And some someone in my family said it's $35. Just get it. So healthliteracy.com, Helen at Healthliteracy.com, and my podcast is healthliteracyoutloud.com. And both sides kind of interchange, and you can click from one to the other. So um, so anyway, I and then if they ask you, if they go back to you, I hope that you will give them my contact information.

SPEAKER_00 55:33

We will, yeah, we will share these um these snippets of this episode on LinkedIn. We will tag you, we will put your contact information there. Um, it'll also be on YouTube, but we'll share all that um definitely with our listeners for sure. Good. Yeah, thank you so much, Helen. Thanks, Jennifer. Um great conversation, very important conversation. Look forward to getting this out there. And uh thanks so much, listeners. We'll talk next time.

SPEAKER_01 55:57

Thanks so much, Helen.