Transcript
Speaker: Welcome back to the Policy Biz Podcast. I'm your host, Jon Schwabisch. It's time for the first real episode of season 13, and I'm joined by maybe my most special guest. Yeah, I'm gonna say my most special guest ever. I'm joined by my wife, Lauren.
Speaker: So this week you get two Schwabishes for the price of one, my friends. um Lauren is a speech language pathologist. She's worked in hospitals for a long time. She now has her own private practice where she works with people who have had stroke or traumatic brain injury or concussion. She helps them learn how to eat again, how to communicate again, how to read again, how to live their lives again. And so what we talk about in this episode, even though that description may sound pretty far afield from data communication is actually very relevant to the work that we do because we talk about her
Speaker: assistance with her patients on how to use different forms of technology. So it's really all about accessibility. We also talk about the brain, our brain, and how it can be rewired to learn different things. And we also talk about a lot of the tools and platforms and also, of course, the challenges that she has working with people who have different forms of impairment. and We spend a bit of time talking about these different forms of impairment because one of the things that I've said for a long time is that the data visualization field I think we're a little overly obsessed with red green color vision deficiency and that's not the only impairment out there, right? People may have low vision or blindness or different types of vision cuts as you're gonna hear we talk about they may have physical impairments and of course not all of these impairments and disabilities are permanent right if I fall down after recording this and break my arm it's gonna be hard for me to use my mouse for the next few weeks or months so that's why I asked Lauren to be on the show and that's the sort of thing that we talk about I think you're gonna find a lot of great material here as you think about making your visual content more accessible to more people. She's also provided a number of different resources for listeners that I think you can use in your work, but also if you have family members or friends or loved ones or elderly parents who are going through stroke recovery or have had a concussion, um these resources might be available or useful to you as well. so It is sort of a different kind of episode this week. We're not talking about how to code in JavaScript or anything like that, but I think it is certainly relevant for those of us who are trying to think hard about making our content accessible for as many people as possible.
Speaker: Okay, that's all for me for this week. Let me get over to my interview with my lovely, lovely wife, Lauren, only this week on the PolicyViz podcast.
Speaker: Well, hello. Hi. Fancy special guest on this one.
Speaker: I think it's the first episode where I've been married to the guest. First and only. First and only. um Okay, this is going to be fun. A little bit different for people, I think, to listen to someone who's not in the tech data field, but who helps people work with...
Speaker: I guess data and we'll certainly work with tech. Yeah, with information, certainly. Yeah. And from an accessibility perspective, which is a big challenge for folks. So let's start with what is a speech language pathologist and what do they, or what do you do?
Speaker: Okay. So a speech language pathologist is a professional who supports individuals with any number of abilities. So we can have speech pathologists who work from cradle to grave, as they say.
Speaker: There are speech pathologists who help babies in the NICU with feeding and swallowing. There are obviously most people associate a speech pathologist as working with children in rehab or habilitation settings. So you could see a speech therapist in a school helping a child with their speech sounds, right? Saying their R's, saying their S's. um But there's a whole host of speech pathologists like me who are more medical speech pathologists who dedicate their careers to supporting adults with
Speaker: speech and language issues, and these are acquired. So this is not something that someone is born with, but typically something that someone may experience as a result of an accident or an injury. So my area of specialty has always been working in hospitals with individuals who have suffered some type of neurological injury. So a stroke,
Speaker: traumatic brain injury, brain tumor, maybe a complicated course after, let's say, a And my specialty is on cognitive communication abilities, but I also help people with speech. And i have a long history of helping people with swallowing as well. So it is something that, again, you could see in all ages. um And it is a profession that has a lot of flexibility. So I started out in hospitals working with, you know, medical professionals, nurses and physicians and other therapists. And now I work in the community as a private practitioner.
Speaker: So worth knowing for people, for for listeners, the person who has a stroke, they go to the ER, they get admitted, they then, in many cases, right, go to a rehab hospital, which is where you worked for many years, and then eventually get discharged, but may need additional therapy, additional care.
Speaker: And depending on their age and their health insurance situation, they either work with the hospital or they work with someone like you. Yeah. Yeah. um Okay, but your work both at the hospital and now for the last several years in your own practice emphasizes person centered therapy um that's built around the person's goals and so um can you talk a little bit about what that means and how you translate like the individuals priorities and maybe that's different from the families priorities but how you translate their personal priorities into a treatment plan. So first, if we look at person-centered care, it it kind of helps to compare it to what is the traditional medical model, where the healthcare care professional is the expert and they perform diagnostic tests and they figure out what's wrong with the person and they recommend a course of action. And this is traditional medical in all aspects, right? So a physician...
Speaker: a you know an oncologist, that expert is the one that's making the decisions, that has all the knowledge, and basically the person, the patient just goes along with it because they have this trust in the medical professional. Person-centered care is different in that it understands really that the client, the person, is their own expert, and they have obviously a lot of interests, and they have priorities that are just as valuable as the clinician's knowledge. So person-centered care is a combination of standardized testing, which is useful, right? Like I have to diagnose the disorder, but I've chosen that really almost in partnership with the person to say, hey, I noticed that, you know, you're having some difficulty finding some words. I have a naming test. Let's see if we can test that out. And people are oftentimes receptive to that when it's explained in that way. But the big piece is about choosing um other measures to understand someone's disorder. So that might look like a patient reported outcome measure, which you and I collaborated on. We could talk about that a little bit. But it's essentially like a questionnaire that says, how is this particular situation affecting you?
Speaker: And then we come together and we say, well, here's all the information we've gathered. what matters most to you what is your top priority and what interventions are available that can help with that.
Speaker: And so it's very much a shared decision-making process. And that's really what person-centered care is about. So it's not necessarily improving someone's accuracy on a test. Like if someone can name, you know, only five out of 10 photos, um The traditional medical model says, well, let's just keep showing them photos of like random objects and see if they can name more of them. Whereas person-centered care says, hey, naming is an issue. What do you need to name in your day-to-day life? What are the people? What are the objects? What are the places that you go? And how can we focus on strategies to make that more successful? And maybe their accuracy improves, but maybe it's their confidence.
Speaker: Or maybe it's their participation. So that's really what person-centered care is about. It's very art and science focused in terms of truly understanding the individual and then bringing your science, the technical knowledge that you have to them in a way that is understandable and approachable.
Speaker: So to that end, on the technical knowledge, on the technical terms, on the jargon of which it's a medical field. So there's a lot. Your website, you talk about neuroplasticity on your site, but they're like, you know, your fields, like everybody's field has their own jargon. How do you talk to patients and their families about what the challenges that they're facing in kind of a plain language, but still not dumbing it down for them. um But like, how do you have those conversations where they understand what you're talking about and then how, especially for the patients? And I guess I keep coming back to the family, Sue. How do they make it motivating to do the rehabilitation, do the therapy rather than being overwhelming and saying, this is just too much. I'm never going to get better.
Speaker: you know, and and sort of veer off into this, into the sort of negative thought space. So one of the things that I always try to say is what do you know about your diagnosis? You always have to meet the person where they are and you have to meet them where they are in terms of their health literacy. And there's a lot of best practices out there in terms of understanding health literacy, just because someone is maybe like well-educated and they have a lot of experience, they may have a very low level health literacy about their particular diagnosis. And especially in my case, if I'm working with people who have had a stroke or a brain injury, when that was first diagnosed at the hospital, they may not have had the skill to be able to understand that.
Speaker: So it doesn't really matter if it's a family member or if it's a client, I always start by saying, tell me what you know, and I'll fill in the missing pieces. And then there's a lot of um visual information, which you'll see as a theme, probably between what you and I do, of being able to show people what has happened. So if I talk about stroke,
Speaker: I oftentimes will show them the brain and we talk about the parts of the brain just to see what they know. Sometimes people will use the terminology like ischemic or hemorrhagic, right? But sometimes people don't know those words. So what I always say is our job is to build your knowledge base and we want to start with what feels comfortable.
Speaker: And I only give small amounts of information at a time and I always follow it with teach back. So, It's not a test. It's not a quiz. It's not like they pass or fail, but my job is to explain it in a way that they understood. So after we follow, we give some information, i might say, okay, just to make sure I did my job, tell me in your own words, what does that mean to you?
Speaker: And then because a lot of my patients also have language or memory issues, we go ahead and we work on developing a place to store that information where they can find it, where they can understand it again, where they can show it to somebody else. So a lot of it is making sure that's part of the therapy itself is making sure we're building systems where they can acquire information and use it again, right? Whether they're showing it to someone or they can reference it or they, you know, store it internally.
Speaker: So it's very customized to the individual, but we always want to ensure that our job is to make it as plain language as possible. And it's incredible to see this because so many patients will discharge from the hospital. And I think doctors are not incentivized to communicate clearly, um or they just don't understand what that experience is like, whereas I spend an hour with each person.
Speaker: patient that I have, each session is an hour. I can really see what goes well and what doesn't go well for them. So I modify my education accordingly. But many people don't do that. And so part of our job is to empower the patients with the terminology that makes sense, but also to advocate that they need to request that transparent communication everywhere they go.
Speaker: So you mentioned a couple of things there that I want to ask you about. You talked about visuals, and then you talked about the tools that patients can use down the road to practice or when you're not there to continue their skills. So i want to talk about both of those. I also wanted to ask about empowering patients. What happens when you have a case where what the patient wants or their goals don't match with the family's or other caregivers' goals or expectations? Like, how do you pull those together?
Speaker: Well, some is some is targeting caregivers, right, specifically. So there's some tools that I mentioned, the patient-reported outcome measures. There's some questionnaires that look at care partner burden that are really useful.
Speaker: And so I need to understand where the partner is coming from. Like, they may be, let's say, in charge of finances. where they were never in charge of finances. Maybe my patient was the one that was solely responsible for that. And so the care partner might say, I need him to pay our bills again, right? I need i don't know where anything is. He has to get better so he can handle that again. and that might be...
Speaker: born out of the fact that this person doesn't have experience or they're very overwhelmed, which is really what this is about. So a survey that allows me to understand the caregiver burden might help us to figure out, you know, do we really need to make sure this patient can pay the bills again? ah That might be his goal. If that's his goal and that's her goal, we can tackle the, you know, the skills related to that. But sometimes it's also about pulling in more caregiver support.
Speaker: So a lot of times my job is to not only work on the individual's goals, but to connect them to other support communities. And so i always am looking for care partners, support groups, client support groups. um There's a diagnosis. I don't know if we've used the word yet, but aphasia, which is an acquired language disorder due to stroke that can affect reading, writing, speaking, listening. That's one of my sort of areas of specialty. And there's a whole community out there online virtually that is there to support the individuals. So usually it's about trying to understand each person's perspective. um
Speaker: I really want people to feel successful. So if there's a real discrepancy in the goals, I might try to find a middle ground where maybe we're talking about um vocabulary related to finances. So we're not doing the cognitive load of having to pay the bills, but more using words related to that. Or maybe we create a visual or we create time and a schedule where people can sit down and look at the information together.
Speaker: But it's really trying to make sure that that care partner and that family's expectations and needs are addressed as well as my client's. Right. Okay. So let's talk about the visuals and then I want to talk about the tools. So um when you're working with someone, let's say someone with aphasia, cause that's, that's where you're focusing most of the time. um What do the visual tools that you use in therapy look like?
Speaker: Where are you getting them from? How are you building them? Like take us through or take people through, Let me pause here. You know, I said this in the intro and just so people are have their head around why i think this this conversation is important for people who are data communicators is everything that you're talking about is thinking about who is in In my jargon, right it would be who is the audience? Who is the person that you're talking to? And it's still person-centered, right? You're not going to give talk on how to code in Python to the CEO of some you know company because they're not coding in Python, right? So when it comes to now we get into the visuals and the tools, when you are working with someone, like where are the visuals that you're getting? like Walk us through what a therapy session will look like
Speaker: when you are presenting someone who is recovering from stroke, who has aphasia, what do those visuals look like? What are the tools that you're using? Got it. So maybe we can start by sort of some good resources to guide this audience into what that looks like. And so we're looking at accessibility. Accessibility, when it comes to aphasia, means modifying the language so that it is simple clear and direct.
Speaker: And one resource that I think is really wonderful, just even if there are folks out here who are trying to create accessible information is just taking a look at a guide that do you have show notes? How do you share information with the people? You'll post have show notes. I have show notes. no it's Okay. It's like, you know, we've been married for like 400 years and you'd like, you've never listened to the show. You've never, and you're a big podcast listener. You've never listened to the show.
Speaker: Never, never not one. This is where this episode starts to go off the rails, where people just listen to us. but People just listen to us fight. And it's just marital strife on iTunes.
Speaker: No. OK. Never not true. OK. So visuals. Yes, I have show notes. I have show notes, and I will i will share up i will share these links. Yes, OK. So one really helpful resource is one put out by Stroke Org UK, which is in England and Wales. And they have a booklet that talks about how to make mostly health education, but really any information accessible for someone with aphasia. So one thing to know is that the length and complexity of written language especially, but also spoken language really needs to be adjusted. So instead of having multiple paragraphs of text, we really want to boil that down to the most essential information.
Speaker: So it might look like for someone who's very impaired, we may be looking at a single word um Or we may be looking at maybe some keywords or a simple sentence.
Speaker: And we think about font, right? We think about font size. um I know you're a huge font fan, right? So we're looking at enlarged font or bolded font. We're taking out the serifs and the flourishes and all the fanciness, right? Mm-hmm.
Speaker: And then we're pairing that information with a non-language based symbol. So that could look like an icon, black and white icon.
Speaker: That could look like a photo. um and of course, in person-centered care, we always want a photo that is recognizable. So a big part of what I do is build person-centered communication tools. Those can be both low tech, like a binder notebook with pages that have a photo of a family member plus their name.
Speaker: That's something that we would, you know, do in PowerPoint. We're using the iPhone. You know, we're we're using tools that are recognized and available. um Or we're using a high tech tool. So in my industry, we have a few different companies that have tablet based or app based, what we call high tech AAC, which is, um augmentative alternative communication. These are essentially iPads, tablets that have pictures that can have a single word, and then we can also layer in a recorded word or recorded sentence. um When I'm pulling together um visuals, I also think about emojis. I think about things that they may have seen conventionally, you know, sort of in their day to day. worked with a gentleman earlier today who has language changes due to dementia, and he worked for a major corporation. And so I'll pull the logo of that corporation onto the page so that he can see not just the word of where he worked, but he can also recognize that logo, which is highly familiar.
Speaker: Similarly, if I'm making a page for someone who wants to talk about going out to eat or where they like to go shopping, I'm going to pull either a photo of the storefront, which is really easy on Google. You just steal the photos, right? Or I go to the places and I snap a photo of the, you don't like it when I steal things. When I take a photo of a place, let's say it's their house or it's their local pharmacy so that there's an instant familiarity with that image or like the icon, right? So it's the Trader Joe's sign or it's the Home Depot sign. And when people see,
Speaker: that visual and they see the language, it's very often easy for them to read it out loud, which means they can incorporate it into their verbal communication. um i love the noun project, which you introduced to me, but that's a really nice way to engage someone in developing a visual tool. So a lot of times if photos might be, if someone's had any type of visual field cut, where maybe half of their visual field in each eye is missing, or they have vision changes as a result of their injury.
Speaker: um We may not want to go with a detailed photograph. We may want to go more basic with a black and white icon. And so what's fun about the Noun Project is I might type in,
Speaker: um let's say, hamburger. And the nature of those icons is that they're you know they vary in how abstract they are. And so I'll have the person tell me which one they want when they can scan and look. And they're they're sort of selecting and choosing the symbol that really represents the idea. Right.
Speaker: You mentioned visual field cut. And can you talk just for a second about the different types of vision impairments that your patients have had? Because I think in the database field, there's a bit of an obsession with color vision deficiency, which is not the only visual impairment out there. So can you describe a little bit more before we get into the tools part? But because you mentioned that that phrase visual field cut, can you talk a little bit about the sorts of visual impairments that people have?
Speaker: Sure, and this is going to be the real 101 version because this this is its own unique specialty. Its thing, and there're right. And there's professionals, neuro-optometrists, neuro-ophthalmologists, occupational therapists who really specialize in vision and vision changes after brain injury. But we should also remember that um sudden change in vision is a sign of stroke.
Speaker: So we always want to educate the people, right? Be fast. We do. right Be fast. Balance eyes. e is for eyes. So a sudden change in vision can look like missing vision in either one eye or part of each eye, depending on what part of the vision system has been injured.
Speaker: um In terms of the accessibility, we're really looking at visual information processing, in addition to acuity. So acuity is like, you know I'm getting older, I have to wear my readers all the time when I'm looking at fine print, right? Vision changes associated with a stroke is almost as if that visual field, what the brain can actually see is missing.
Speaker: So I've had clients that describe it like, I can see, i can't see, I can see, I can't see. So it's kind of like this interrupted visual field where you have to move your head to get your vision in the right place. There's also, when people have a injury specifically on the right side of their brain, there's a spatial inattention or a visual inattention where the eyes are working.
Speaker: and the brain can see information, but the attention system is impaired where they may be hyperattentive to stimuli on one side and their brain does not see. It could be their body that they don't see.
Speaker: It could be the room they don't see. And their brain is able to see it when you direct their attention, but it's really an attention system problem. right Right? um And then you can combine that with any one of existing problems. So if someone has color blindness issue, that's not going away. It's just one facet of vision. So many people who have a brain injury will have to wear prism glasses. That helps the visual field to kind of align again.
Speaker: um but our job in the speech pathology world is to figure out what You know, what is most accessible to you? And then sometimes it's actually bypassing the visual system. so let's say reading.
Speaker: People love to read and when they have a field cut or they have some sort of blurry vision or sometimes fatigue can affect your vision, how well you recruit your vision. Sometimes the best strategy is to use text to speech.
Speaker: where we're having them highlight text through their phone, or we're having a maybe there's a platform that they can upload a document and they can read it by listening, or they can see the word scan and being read out loud while they're also sort of so they're sort of dual tasking it. They're using their visual system, but their auditory system as well.
Speaker: right So we always need to think about the sensory inputs. because that's what feeds the rest of the brain. So what can they see? What can they hear? What are they able to perceive in their environment?
Speaker: Right. Okay. So you just mentioned phones, computers, auditory tools that people can use. So can you talk about how you have helped people phones?
Speaker: those types of tools. i mean, we don't need to get into the guts of the of the iPhone like accessibility menu, but you have you have discovered, i mean, not discovered, but you have found things in the iPhone settings that have helped a lot of people use the phone in a post-stroke or post-concussion TBI world. So can you talk a little bit about the tools and technologies that you've helped your patients use to communicate?
Speaker: Yeah, I think obviously the ubiquity of phones now and and tablets and computers and, you know, technology is is something that when I was first doing this, it was like the younger people would, it would be more intuitive and we were going more low tech with older people. And now everybody um has tools. Sometimes people will have a stroke and then their family members are well-meaning and they're like, oh, i just got dad an Apple watch. So, you know, we know how he's doing and can you teach him how to use the Apple watch? And I'm like, eh.
Speaker: You know, it's it's a new process. It's a new system. It's not that accessible if you've never used it before. But for people who are customary phone users, the best place to situate language and cognitive supports is in the tool that they always know where is. And almost everybody, I mean, if you don't know where your phone is, you've got your own, you know, that's its own strategy. Yeah. Most people have their phone. And so um one of the things I always like to do is look at photos, right? Because that's how we all share information about, you know, what we've done recently.
Speaker: And so a good example of a way that we might strategize around photo storage would be to create albums, right? so that we can find the photos quickly when we want to share information. We can categorize them. This is my family. These are the foods I like. This is vacations that I've taken.
Speaker: And then within those photos, we can use the, I'm just speaking as an iPhone user, because it's the one that I think is the most accessible. We can use the markup feature, which is to add language to a photo. So if I have a photo of someone's face, I can add their name.
Speaker: somewhere in that photo, again, pairing that visual with that language. And that's really wonderful. You can also do that in the caption feature. So that's really nice if you want someone to be able to talk about the photos and they need assistance with word retrieval, you can have them write it in. It's also good writing practice if that's something they're able to do independently.
Speaker: um The iPhone has a cognitive, it's called assistive access feature, where you can actually create a very simplified version of their phone. So this is really for that individual who's not using their phone at all. And maybe they just need to restore like functionality to call someone or to send a text or to see what the weather is. where when you get into assistive access, you can create as few as you know one or two icons that are super big, which really allows someone, again, low vision, but even just cognition or communication. So you can modify the visual field, how much they're looking for.
Speaker: Similarly, i like to go in and just help people delete unnecessary apps, move apps where they need to see them, take away background photos, because that's another layer of visual information they have to search through. So if someone has like a photo of their grandkids and then they can't see the apps that they need, because that's a lot of visual color and text and fonts, what we'll do is we'll create a black or a dark screen and just have no image in the wallpaper so that the icons that are the most significant will be more available. Another thing that I really like to do is switch into like voice assistant. So we may say, this is really helpful for people who have working memory demands.
Speaker: um So, for example, I heard something I think is really important and I want to write it down. And working memory is this temporary holding space, right, where we have an idea or a piece of information just a little bit long enough to do something that's higher level with it. So...
Speaker: people who maybe have an idea or they want to remember something um that's a piece of information, by the time they open up their phone, maybe they saw a text message and now they're suddenly you know responding to that and that original intention is gone.
Speaker: So helping people to be able to use a voice command to say, hey, remind me to pick up milk at 5 p.m. That's a good example of a way to adjust information the usage of something and then getting those visual reminders, right? So a lot of the sort of what was so considered to be more cognitive assessment, ah cognitive tools assistance can be very useful. And then again, the accessibility features. So for information dense, you know, let's say someone wants to read an article in the Washington Post or the New York Times actually has a listen feature.
Speaker: But there's apps like Natural Reader or the the native phone, native accessibility settings where you can highlight text and hear it read out loud, but also watch and see where it's scanning. So it's really trying to figure out, A, what does the person want to do?
Speaker: yeah what is the tool that they've been the most familiar with? C, how can we modify it? And then how can we practice sequences that might be new or might be different so that they can use that in an everyday situation?
Speaker: and And you've got, you work with people who have, i don't know if this is right, but three maybe buckets of impairments. So physical impairments, which I guess I would put put vision in the physical impairments. So that might be in an iPhone world, like maybe they have weakness on one side or they have a field cut or a vision impairment. And then you've got people who have cognitive impairments and then you've got aphasia with the language impairments. And I'm guessing that for each one of those buckets, and I'm sure there's overlap in people who have multiple impairments, I'm guessing you're thinking pretty carefully about which features work with which type of impairment.
Speaker: Sorry. Yes. I mean, if you, if you just open up your phone and you look at the accessibility menu, you'll see there's some provision for touch, et cetera. mean, more sophisticated technology that's dedicated to people with impairments could be, let's say someone with ALS, right? Where we have voice banking and now we have all of this AI voice generation that that can be done. Um, people who lose all motor function might be able to use eye gaze. or pillow switches where maybe the residual movement that they have in their finger in their head, they can access, you know, some type of screen to help come up with a message, speech generating devices. So, yeah, I mean, a thorough assessment by a speech pathologist will figure out what is the, you know, what are their strengths in terms of their communication modalities? So is it reading? Is it writing? Is it vision? What are the other things that they have that are
Speaker: you know, factors to consider. Sometimes someone might have a tremor, right? So a tremor, when you have a small keyboard and you just need that light touch, that's going to be a game changer, right? Where we no longer can have that. So that might be someone where I'm saying, okay, I'd like you to switch over into um speech to text, where maybe your spoken language is audible and clear, and we can have you write something down where, you know, texting is challenging. um or someone who has suddenly only their non-dominant hand is the only side that they can use, right? So we need something that's a little bit more accessible. And then partnering with other healthcare care professionals. So an occupational therapist is really looking at fine motor skill.
Speaker: or an adaptive technology professional. That's someone who's really going to be you know very knowledgeable in the suitable technology, especially for someone who maybe is unable to generate speech or communicate at all. So my clients are probably not as impaired as that, at least when I encounter them. And so we're able to use more conventional everyday technology, especially stuff they've used before.
Speaker: e Okay, so let's turn to my kind of people, the people who are data viz people. So they're building charts, reports, websites, dashboards, whatever they're building. And there is obviously a lot of people thinking about accessibility when it comes to data visualization. I've had a bunch of those people on the show before, but what would you flag as a thing that most ah most maybe designers, creators wouldn't really think of, something that you would see in a website or a data portal, whatever it might be, just a website, I guess, working with a patient that maybe a designer, creator wouldn't think of right away.
Speaker: This is where you and I overlap, right? We have so many shared, like how many lectures have you given where you're talking about the needs of the audience? like I mean, we share a lot except for the you listening to this show. Same thing. Nope. Nope.
Speaker: We'll never. You've like blacklisted it on your phone. It's like allowed. There's so much other stuff to listen to. I know, but yeah. But come on. Yeah. No. I need to get that like 12th listener.
Speaker: thats Maybe I'll draw them in. We're going to develop a whole new Policy Viz podcast fan base. Yeah. Of us just like talking.
Speaker: Yeah. um Yeah. That'd be fun. So this is, but this is truly where we overlap. So I think the idea idea here is what is the priority message that you need to communicate and really thinking about less is more, right? So it's that same concept of like, if I only had so many characters or I only had so much attention, what is the information that is going to be the most accessible to this particular audience? Right.
Speaker: So that has to like, that's why person-centered care is so much of it is about like clinical interview. It's like understanding what people need and then really trying to prioritize the interventions. So what are the key points that you're looking for?
Speaker: how can I eliminate unnecessary information? and it could be in like a slide, right? Or it could be in some sort of data visualization that they're doing. is really trying to take out what does not need to be there.
Speaker: I also like the idea of layering information. So maybe if there does have to be multiple pieces of data, sometimes it helps to present one piece at a time and maybe we have sort of like the background and then we add in a new piece of information and onto that we layer on another piece. but a background that might be ah simpler.
Speaker: Definitely. Right, like not something that comes on top of a complicated, in this case, like a complicated graph with more text on top of it. Right. It's thinking about a very simple foundation. And one of the things you talk about like pre-attemptive attributes, right? So one of my favorite analogies, which is another way to really help people understand these complex concepts. Right. So like I had one already for you today for neuroplasticity. So we're going to have to go into that. But one of my favorite analogies is when talking about cognition is thinking about your cognitive skills, like a tall multi-story building, right? Like a high rise. that has multiple floors sitting on top of each other.
Speaker: And the foundation of that building that is underneath the ground, you cannot see it, but it holds everything up is attention. So we really have to understand people's attention needs. And then we think about maybe the first floor or their sensory processing, right? what What is the sensory processing skill? Do people need to see something? Do they need to hear something? Do they need both? Do they have any limitations on what that sensory processing is?
Speaker: And then we look at memory. So a lot of people, when they think about thinking skills, they go straight for memory because memory is probably the domain that's best understood. But a lot of it is about attention and processing.
Speaker: And then you get up to, you know I mean, there's all sorts of floors on this building, but that the the highest penthouse floors are executive functions, which is regulating your cognition. So we might think of that as the penthouse might think of it like the maintenance staff of the building where they know the ins and outs, they know how everything works. So some people are good at regulating their attention and their focus and some people are not. So really visually what we have to do is we have to guide people to the most salient information. So whether that's removing the wallpaper photo on the phone and enlarging or simplifying the apps or you're building a presentation or some type of data viz, you really want to start with a very solid foundation of attention. What do they need to be looking for
Speaker: and make it as clean and simple as possible. And I do think it would be helpful for this audience, especially if they have zero clinical, you know any family history with aphasia is to take a look at some of these guidelines because aphasia friendly communication is really good for all levels. So if you're someone who's presenting very sophisticated, complex information to an audience that doesn't share that background,
Speaker: Simple is better. And that's really what aphasia friendly communication is. So when you have to think about if I had to get rid of all of this text from my report, or if had to get rid of all of these default settings in my Excel chart, what is left? What do I really want to highlight? And that's where you need to begin.
Speaker: Let me throw one at you because I think one of the challenges people face when they're creating their dashboard website, whatever is they're thinking, okay, there's some percentage of people that have accessibility needs, but I'm guessing this is what some people think.
Speaker: It's a proportion of people, but it's not enough of my audience to warrant going through all the extra steps or I want to have the bells and whistles. And so, yes, some people are going to be left behind.
Speaker: And as you said, i totally agree. Like if we make things accessible, it's accessible for everybody. So but let's place this in a very specific instance or location.
Speaker: So are there. tools, websites, even data in a hospital setting or in a therapy setting that you wish were better or that you wish that your patients could use that would that are more accessible? Like are there, when you're working with a patient and, you know obviously it depends because it's person-centered care, but like you're working with a patient, are there things that you wish were available to them that were more accessible that maybe don't yet exist or not
Speaker: useful for the sorts of people that you work with. Because I can imagine, sort of round this out, I can imagine someone saying, yeah, yeah, yeah, I'll add my alt text, but you know, I'm not going to worry about someone who's had a stroke.
Speaker: But if a hospital came to that person and said, we need you to improve this thing, for our patients. Now you're thinking specifically for that for that population. And so i'm I'm curious if there are things that you've come across that you wish were better or easier or existed that maybe don't exist yet or just you can't use because the accessibility features are just garbage.
Speaker: Yeah, so maybe we can think about it in um one of the tools that you and I were working on together, which is one of those um yeah aphasia impact questionnaires, right? yeah So again, aphasia is this acquired language disorder. And it's important that someone who has aphasia is assessed, right? So we can understand what their communication needs are. And, you know, you had mentioned the buckets in addition to physical and cognitive communication, there's also emotional, right? So obviously when someone loses their language abilities, there's a tremendous emotional component to it, plus fatigue, right? So this tool I love, it's essentially a questionnaire with several scenarios. It uses a Likert scale. which goes confusingly sometimes from four to zero, right? You were like, what is it going on? But it also has illustrations. Right. And it has very simple text. And so I really like this tool. But the problem is, and this actually happens in neuropsychological tests too, where someone's getting tested by a neuropsychologist. It's like a four hour test. There's tons of data that comes out of this, right? And what happens is the patient ends up receiving test.
Speaker: 15 page report of jargon information and numbers, and they don't understand what it means. Same thing with the aphasia impact questionnaire. It might be really good in engaging the information from the client, but then the output is this, it's like, you know, just a single sheet report. And so you and I thought, well, why don't we make this more accessible? What would that look like? Right? So then we're bringing in some type of face sheet that takes all of those responses and creates very clear, simple explanations of trends, maybe priorities.
Speaker: that someone has had. i have a friend who's a psychologist and I sort of was like imploring her to be able to create a similar thing. What is the visual that's going to tell the story of what lies within this report?
Speaker: So I think that test results are a great example. There's, um I don't remember the name of it, but there's a radiology website that I think a healthcare organization, right and it just interprets test results in plain language. yeah yeah yeah That's a great example of accessibility, right? Because a medical report, first of all, it gets into the portal very quickly. So people, as long as they can access their portals, they might be able to see information that could be very important. It could have bad news or good news, and they see it before their healthcare care provider has a chance
Speaker: to explain it to them. So some of it is, let's make sure that there's maybe accessibility features like this website, we should find it because it was pretty good. That would explain what this test was and what it found, but also are there videos embedded or is there illustration that's embedded so that I think health information is ah the great equalizer here, which is to say it's tremendously complex. It's pretty emotionally laden, right? It can mean big things for people. it comes at a literally a financial cost, right? Because of benefits and things like that. So there's a lot tied up in that information. And I facilitate a group of parents with aphasia. These are people who are younger stroke survivors. They've had a stroke
Speaker: sometimes in their thirty s or their 40s, they're raising children. and when we ask them, what would make things simpler or what is more challenging? It's portals related to healthcare, care to their kids' pediatrician. It's portals related to schools and educational information. and these are typically accessed through technology and they're difficult for people who have communication impairments. So i hope this is answering your question. I mean, I think what I'd really like to see is some sort of accessibility features that, again, are not just alt text because alt text is ultimately a reading activity. Right. me
Speaker: So that assumes that people can just handle more written information in already an overwhelming information environment. So sometimes if we can make it accessible by removing information,
Speaker: And I understand someone who might you say, well, i'm not going to make my economic data available to the stroke survivor, right? Unless that's relevant. That's not what we're asking here. What we're asking is offering some flexibility and some choice.
Speaker: And maybe there's a simple version, like one of the resources I want to put into the show notes. In the show notes, which exist. BYU has a really wonderful resource of research articles about people with aphasia that is aphasia friendly. And if you click on these icons, you see the research sort of abstract, you see the findings and you have photos. And for that stakeholder community, it is essential. Like this is research for this individual. It should be accessible. But if you can look at some of these resources and say, how could I have like,
Speaker: you know one One of my favorite strategies for folks more with concussion versus stroke, but folks who struggle with variable levels of cognitive energy, we call it the low, medium, high.
Speaker: so Depending on your energy level, you may want to have a very simple version, a medium version, and a high version. Right? Which is to say what's the entry point for me to do this meaningful activity? So if you have a someone who's a data designer, you might say, first of all, who is your audience? Does your audience have a mix of level of experience or knowledge about this topic? Can you create...
Speaker: a low, a medium, and a high version. Something for each user where the message is the same. And of course, if someone needs more information, they could just skip over to the next level. yeah how can really you know And and you know if someone is, let's say, has a high level of knowledge, but they don't have a lot of time, right? Or they don't have maybe um the bandwidth and they need to kind of go back and and and look at the low. you know The low version allows you to transfer that information very quickly, very clearly. And then they can maybe go to the higher version when they're available. But attention is at a premium. So the simple version might be the one that people can grab onto.
Speaker: And then they can adjust and dig deeper as necessary. But I think it's that flexibility. And I think thinking about different modalities. So what can they hear? What can they see? What can they listen to? What they what can they experience?
Speaker: It's probably a what I would love to see in the world. I guess I would just add what you already mentioned. It's not only just about the patients, but also about the the caregivers, the medical team, the family. I mean, the AIQC project that we've been working on is the questionnaire. We've built like an Excel version and an HTML version, but that's not just for the patient. It's also for the therapist to be able to like record the data more easily and share it with like, you could work on it with your patient, but also share it to the patient's neurologist more easily and more quickly so
Speaker: Again, the doctor or the whoever the healthcare professionals or even the insurance company, right, who needs to be able to see and, you know, maybe look for a justification as to why services should still be covered, that needs to be friendly to the lay audience, right? Because they might be the key decider as to whether this person continues to can get, you know, compensated or reimbursed for therapy. And the way that we do that is not to hit them with everything we know. have to hit them with what is the most salient information in a way they can understand.
Speaker: Love it. um Okay. On that note, where can people find you if they, maybe they want to join the parents with aphasia group. I think it's on Wednesday nights.
Speaker: If they have a loved one who may need care or therapy in the DMV area, if they want to talk to you more, if they want to learn more about aphasia or stroke or speech therapy, where should folks find you?
Speaker: People can um engage with me in several different channels. um they you're such ah You're such a social media butterfly. You know what? You got you gotta rock it if you have it. So I am um on Instagram, primarily social media channel. that's That's my choice. I do a lot of health education. i do a lot of sharing of clinical success cases. I do a lot of teaching and reaching out to audiences. And so at NeuroSpeechServices on Instagram is a great place to see kind of what's going on. You can go to my website, NeuroSpeechServices.com.
Speaker: I have done other podcast interviews with other people besides my husband. So... ah Podcasts that maybe you listen to. I don't know. Wherever you get your podcasts and you just look up Lauren Schwabish, some different things will come up. um I, yeah, so the National Aphasia Association, if people are interested in just learning more about aphasia, that is a wonderful nonprofit organization. Their whole focus is on improving awareness and advocacy and research for people with aphasia. So National Aphasia Association, definitely check them out.
Speaker: Aphasia Access is another great space where they're really trying to coordinate um Aphasia Friendly Research, so that is another nonprofit i am proud to be a member of. They are very interested in stakeholder inclusion.
Speaker: So they have a conference that meets every other year and people with aphasia are invited. And that is the community that is really looking at creating accessible research for people with aphasia. So that's aphasia access is another great space to be.
Speaker: Um, yeah. Or they could just, you know, email you and they know they could do that, but then I would just forward it. Okay. So lots of places that I will include in the show notes because those exist on the show.
Speaker: Lauren Schwabish, thank you so much for coming on the show. You are so welcome. We did not talk about the neuroplasticity analogy. Do we think we need to? I feel like we mentioned it. We mentioned it. Do you want to talk about it before we sign off?
Speaker: I think people are like, people are listening to this and like, is this how they talk to each other? And yes, this is how this is how we talk to each other. This is it. End of conversation, but never end it. I hate to mention something to tease something and not follow through. But another way that we really work on health education and interesting information is through analogies. And there's a good body of research that talks about meaningful analogies to transfer health information. So I have to share one last analogy, which is to explain neuroplasticity that people are actually, if they're listening to this podcast for data viz, Now they're going to walk away with neuroplasticity. This is like case in point, why neuroplasticity works. So neuroplasticity is your brain's ability to rewire itself based on your experience. It's the whole principle of rehabilitation.
Speaker: And it's a big, long word, and people don't always understand it. So we usually like to think about it as superhighway, right, where your brain is sending signals, right? Like the beltway with no traffic, the beltway on a holiday, right? It is just zoom and zoom and zoom. And the cars are signals, and they're going really smoothly and quickly. And then a stroke or a brain injury is like, pshh.
Speaker: we're going down to one lane or the exit is, you know, we're we're completely blocked. And so the brain has to come up with a detour. And so it's going on the side roads and the speed of the signal slows down. And sometimes the efficiency, like maybe those signals don't get sent, which is why someone has difficulty with functionality, talking, walking,
Speaker: eating, dressing, anything like that. Once someone has personally meaningful repetition experiences that are salient to their day to day where they can understand why they're doing what they're doing, it's moderately challenging. There's several different principles of neuroplasticity that detour gets faster. So the signals can get to where they need to get to. And the brain is literally creating ah route around the area of damage.
Speaker: And again, when I communicate that to people, what am I using? I'm using an illustration. I'm using something that's personally meaningful. I'm bringing it into an experience that is understood by many, especially in the Washington, D.C. area, to explain what is a really tremendously complex concept. So hopefully everyone's neuroplasticity is up, up, up during this podcast.
Speaker: Love it. Love the addendum at the end of the podcast. You got to give the people what they came for. Yeah. Well, yeah. Okay. Yeah. I mean, I generally don't know how to do that, but yeah.
Speaker: Okay. Thank you, honey. Thank you, honey. Love you. Love you. Bye. Bye.
Speaker: Thanks for tuning in everybody. i hope you will check out those links in the show notes. Yes, I do put show notes on the show so you should check those out. Lots of good resources there. I'd be remiss if I didn't ask you to rate or review the show. Just click on, if you're on iTunes, just click the five stars. You don't really need to do much. Spotify, wherever you get your podcasts, I'd really appreciate that extra star. And let me tell you why it matters because when I reach out to guests and say, hey, would you be a guest on my podcast? And they go look at the podcast on iTunes and they see...
Speaker: 50 reviews or 100 reviews or 200 reviews that matters and certainly someone who's been in this podcast space for a while now 13 seasons I won't hammer on that too much but 13 seasons It does matter when you're looking at podcasts to see how those stars or those reviews or those ratings actually correlate to the popularity of a show So please do that if you can spare just a couple of minutes. I personally would really appreciate it So that's all I've got. I've got a lot more great episodes coming your way. And don't forget about my new series on my favorite graphs I'm doing every other week in between these interview shows. And I hope you will enjoy those as well. So, okay. Until next time, this has been the Policy Biz Podcast.
Speaker: Thanks so much for listening.
