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Episode #79: FOQUS...On Discourse, Technology and Aphasia Rehabilitation: In Conversation with Brielle Stark

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Kandungan disediakan oleh Aphasia Access. Semua kandungan podcast termasuk episod, grafik dan perihalan podcast dimuat naik dan disediakan terus oleh Aphasia Access atau rakan kongsi platform podcast mereka. Jika anda percaya seseorang menggunakan karya berhak cipta anda tanpa kebenaran anda, anda boleh mengikuti proses yang digariskan di sini https://ms.player.fm/legal.

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Brielle Stark about the Distinguished Aphasia Scholar USA Award from the Tavistock Trust, technology, and aphasia rehabilitation, measuring discourse, and FOQUSAphasia.

In today’s episode you will hear about:

  • Applications of technology to aphasia treatment, including provision of virtual care,
  • Ideas for measuring discourse in a clinical environment, and
  • FOQUSAphasia

Dr. Janet Patterson:

Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Health Care System in Martinez, California. Today I am pleased to be talking with Dr. Brielle Stark, who is an assistant professor in the Department of Speech Language and Hearing Sciences at Indiana University in Bloomington, Indiana. Dr. Stark was a Gates Cambridge Trust scholar during her doctoral work, which focused on the effectiveness and feasibility of iPad-delivered speech-language therapy in adults with post-stroke aphasia. Using MRI, she also evaluated the neural correlates of inner speech in this population. During her postdoctoral fellowship, she researched brain and genetic biomarkers related to acquired language difficulties and language improvements following transcranial direct current stimulation in post-stroke aphasia. Presently, she's interested in modeling and predicting language reorganization recovery in acquired adult language disorders and in older adults, using structural and functional brain markers acquired from MRI. Brie is a co-founder of FOQUSAphasia, which brings together experts to improve the research on spoken discourse, specific to aphasia. Finally, she's interested in the relationship between manual gesture and language and communication and brain injury. In 2021, Brie was named a Distinguished Aphasia Scholar USA by the Tavistock Trust UK. The trust aims to help improve the quality of life for those with aphasia, their families and care partners. Congratulations on this honor Brie, and welcome to Aphasia Access Podcast.

Dr. Brielle Stark: Pleasure to be here and finally to meet you in person. I say that with quotes since we're on a video, but close enough.

Janet: Agreed. I feel the same Brie. You were named to Tavistock Trust Distinguished Scholar in 2021. Congratulations again, as you have joined a talented and dedicated group of individuals. How has the Tavistock Award influenced your work in aphasia, both your clinical and research efforts?

Brie: Yeah, first, I was super humbled to join this group I admire all of the prior and current Tavistock Trust Award winners and also work with quite a few of them. It's a privilege to be a part of this group. But, you know, for me, something I've always thought about is, we can do science for science’s sake, but for me, it's a lot more meaningful when we can make the science create meaningful outcomes for people with aphasia, include people with aphasia in designing the studies, and giving feedback on the studies. That's something I've tried to do throughout my career and hopefully am getting better and better at the more I do it. For me, that's the main point, is that we're doing science that's meaningful. That's our lab motto as well.

Janet: Isn't that so important now, because we read a lot of publications about treatments or ideas or assessments, but then they become very difficult to implement in the clinic. That's the whole world of implementation science, in fact we were talking about that just a little bit earlier, the challenge of implementing a treatment that we read about.

Brie: It's so difficult, and I have so much respect for people who work in the field of implementation science. I've dipped my toes into it and then promptly run away on a few occasions. At some point, I'll be brave enough to go back there. As a researcher without a clinical license, I often rely on clinicians to really feed back to me, is this worthwhile? Can we do this? Is this feasible? That's a really important part of my research and what my lab does, trying to make sure we're doing things that are useful.

Janet: Good for you because that is so very important. One of your research interests is technology, as it can be used with individuals with aphasia. As I mentioned earlier, this encompasses a broad range of topics such as iPads speech-language pathology, transcranial direct current stimulation, virtual treatment, and in particular, I want to highlight mentoring women in technology. Across all of these, is there a theme or an idea, or how do you see technology, such as you're using, influencing our clinical and research work with persons with aphasia?

Brie: Yeah, I love technology. Absolutely. I'm a member of a group here at Indiana University called the Center for Women and Technology. I've learned a lot through that group. For me, technology is a fantastic means of communication. Throughout my years, working with older adults as well as people with aphasia, you know, technology can really overcome a lot of barriers that are there for individuals. My prime example is that kind of feeling of aloneness, when you're recovering from a stroke when you're living with aphasia, and technology has a huge impact and kind of remediating that in many ways. So that's what got me interested in doing the iPad therapy many, many years ago. And it's kind of kept me interested, because I think we're moving toward a world where we want to create as many opportunities to communicate as possible. I think technology is one way to do that -not the only way, but definitely one way to do that.

Janet: You investigated telehealth and delivering therapy through telehealth didn't you, if I recall correctly,

Brie: We did a diagnostic mostly through a virtual platform. But the goal is actually, and we just recently got funding to do more of a telehealth model, we just recently finished a design where we were testing its feasibility. We brought people back for two different time points about a week apart. We wanted to make sure that people were comfortable with the task, we had everything lined up in terms of delivering things well, and also reliably amongst our testers. Now that we have that in place, and we just recently pushed out a paper on our actual methods, we're really excited to use it for an actual telehealth purpose.

Janet: Telehealth is so important, I think, and you know, at the VA, we've done quite a bit of that, in both assessment and treatment. I know that there can be significant challenges if the person doesn't have enough bandwidth, if they can't turn on their computer even. I applaud you for jumping into this arena to try to figure out the reliability and how valuable technology can be.

Brie: It is a tough one, I think our biggest hurdle to overcome has actually been the encryption on some of these HIPAA compliant conferencing apps where you just have to jump through about 12 different hoops to make sure you're logged in, you're not a robot, you're not someone who's going to, as they say, hack the conversation. We've had a few issues with that. But the other issue is obviously technology doesn't overcome all of the issues with reaching certain populations. I live in Indiana, I live in a relatively rural part of Indiana and still high-speed internet is not everywhere around here. We're not reaching everyone, but it's definitely one means of reaching more people.

Janet: I think so too, you know, you hear people saying, well, nobody puts down their phones these days, everybody's nose is buried in technology. I used to think that maybe that was a bad thing, but I'm not so sure now, especially when you mentioned earlier about using technology to address isolation that may occur with people with aphasia.

Brie: Yeah, I agree. I think it's a fine line between technology being an opportunity versus the only opportunity. I think we need to just make sure it's available if that is the preferred method. For many, I mean many in our clinic here, it's not the preferred method, so having the opportunity is quite nice. We recently had one of our participants in our aphasia group here move out of state, but wanted to stay in touch with their friends, so they often use technology to make sure that they can keep in touch with the group back here in Indiana. I think that's a great way to show when it is useful, even though that's not maybe their preferred method.

Janet: Well, good, I hope you keep going along this line of clinical research. Let me turn to another topic that's of interest to you - language organization in the brain. You've been looking at both neurotypical individuals and persons with aphasia. What are some of the findings from this area of work? And then, how do you see them as an application in our efforts in aphasia rehabilitation?

Brie: Yeah, that's a great question. I absolutely love neuroscience, it's one of the things I love teaching as well and I have that opportunity here with our masters SLP students, which is my favorite. For me, the first thing I was interested in was just a better understanding of how our brain actually does language. That is such a complicated question. For me, I came into it very much from that theoretical point of view, and a lot of my earlier work still looks at that, and I collaborate with people who are still really looking at that. More recently, I've been focused on to what extent can we learn something about the brain that tells us about some potential for recovery, or in some cases, a potential for decline? It’s so important to try and figure out as much as we can, not necessarily to predict anything, but to improve our ability to tailor our treatments and to have candid discussions with people we're working with. I'm a pretty firm believer that we're never going to predict who's going to recover and who's going to decline because I think there are too many personal factors at play. But I think brain information can give us a lot of really useful things. An example being we've done some work with some collaborators on leukoaraiosis, which is white matter disease, mostly in older adults. it's pretty typical and many older adults, but it seems to be pretty prevalent in people who have had strokes as well. The extent to which there is more leukoaraiosis, in addition to, and even in most cases, is a better predictor than lesion volume itself, in stating whether someone will decline in their language abilities or not. It's this idea that there's something going on at the overall brain health level, that's important to understand. It's not just the stroke that's going to affect how someone is able to recover, for example. I think that's helped us think a little bit more globally about why we care about the brain and how we can use it in helping us understand these patterns.

Janet: Your research is still at the early stages, and not yet with direct application to an individual sitting in front of you, right?

Brie: That's right. That's right. I think we I think we have a long way to go. Honestly, I think it's a design question, as well as a feasibility question. What I mean by that is the variability in people with aphasia is very large, right? We have individuals with different ages, who had strokes at young versus old age, who had different brain health factors. Then also, you have such different presentations of aphasia. It gets difficult, I think, to model brain changes when you have such variability. If you look at all of the work that's out there in neuroscience, it's lots of group studies of typical young adults. There is not very much variability in behavior there compared with what we're working with in terms of people who have language disorders. We have a long way to go, I think in making sure that we're answering the right questions and using the right designs, but I think we're getting closer.

Janet: I agree with that. I'll be looking forward to some of your work. Looking from the behavioral standpoint, as you mentioned, people with aphasia are so variable, not only in their type of aphasia, or their aphasia characteristics, but also in their personal characteristics, their interest in treatment, their ability to get to the clinic, their technology experience. All of these factors, this variability, contributes, I think, to a person's success or lack of success in treatment, and in general, in coping and living with aphasia. Taking all that into consideration when you're looking at brain function and language organization is very important.

Brie: Absolutely. Brain is one piece of the puzzle, right? And it doesn't, it certainly doesn't explain everything. I always chat with my students about the fact that motivation is so hard to quantify, to your point. I don't think that's something we're ever going to figure out as a brain basis, right? Someone's personal motivation to go to therapy, as you stated, or someone's environment, which is something we encounter a lot, like what's their social network like? What's their support system like? We're never going to be able to answer those questions with brain data alone. I think it's important to have that holistic point of view where you do understand the other factors at play. That's also why I like this LPAA model because there's an understanding of all of these factors contributing to the single person. I like that idea of designing studies in that way, as well.

Janet: We've been doing a bit of work investigating motivation, a couple colleagues and myself. We just keep going down this path and finding ourselves almost coming back to where we started, and not so much full circle, but full spiral because we seem to be back at the same point, but we're better, we're a little further advanced in our knowledge, but it's so difficult to understand the concept of motivation. I think that, as you mentioned a few minutes ago, clinicians or anybody really, but when we think about people who are working with people with aphasia, we tend to say, well, that person is motivated, or they're not motivated, but we haven't measured their motivation, we don't know what contributes to it. All of these factors, then are just part of what the brain does is it tries to reorganize itself and think through language and live with aphasia.

Brie: Absolutely, and kudos to you. That sounds like an intimidating research question.

Janet: It is, believe me, it certainly is. Let's turn now to discussing discourse production and analysis and aphasia, which I know has come to the forefront in your work lately. This topic, I think, has a long and storied history, long history. Despite many publications on this topic, clinicians and researchers remain in disagreement, or they lack clarity on the best way forward to use discourse analysis in a meaningful way in aphasia rehabilitation and clinical research. How did you become interested in discourse measurement in aphasia?

Brie: Yeah, that's a great question, and also a great synopsis of the history. I think there is an extremely long history and discourse is so fascinating because it is so interdisciplinary. I mean, discourse is interesting to people in linguistics, psychology, neuroscience, communication sciences and disorders, philosophy, it just goes across a lot of different disciplines. For me, I have always been interested in communication that looks like real life. Even in my Ph.D., I started focusing on it, reading a bit more about it, that continued through my postdoc, when I had an opportunity to do more independent research. Now in my assistant professor position, I decided that even though it scared me a little bit, I was going to tackle this. This scare is still real, but it's definitely fun. The people who are interested in discourse are some of the best people I've ever met. They're up for the challenge. That's why I've continued to really push, what I think is a kind of a difficult ball, up a hill, over these past few years. I'm interested in using discourse as a more natural outcome of therapy, but also a more natural outcome of just how people communicate, how we can actually talk about how people communicate. I'm all for naming outcomes as well, I think there's a place for those, I think there's a place for individual outcomes like that. I think discourse has a long way to go before it can come to the same standard and be used in the same way as a lot of the outcomes we have out there.

Janet: Isn't discourse what we do? When we tell jokes, when we tell stories, when we have conversations, when we connect any kind of speech, when we talk to ourselves. It is what we do. But it's so variable. You're right, there are so many challenges in trying to figure it out. I'm glad you're rolling that ball up the hill, and you have a lot of help to get that ball to the top one of these days.

Brie: I thank goodness for the help. Something I've just chosen to tackle is, and I'm really interested in, is how discourse changes according to the scenario that we're in. I really am interested in that. You know, the tasks that we give people to elicit language, how different is a discourse going to be if they're restricted to looking at a picture versus when they have to bring in some autobiographical memory, when they're talking about themselves, when it's emotional. That's something I'm super interested in, and I've done a lot of research on that. I'd like to now include people with aphasia in building those meaningful tasks. What do individuals with aphasia feel like elicits the language that reminds them the most of themselves? Some of the feedback we get is, “you are making me tell Cinderella again?” That type of feedback makes me feel like we're probably not asking the right question to get the best language sample from this person. That's something we're pursuing, my colleague and I, we're going to start really just asking the questions such as, “What do you feel like most resembles how you communicate on a daily basis”

Janet: There are several different kinds of discourse, we all we all know that. I just think about the life of anyone, the life of a person with aphasia, they want to tell a joke, or they want to tell a story, they want to whisper an endearment to a person who is close to them, they want to order coffee at the coffee shop, all those are such different kinds of discourse. Maybe they're not long, just a few words, but they are discourse. They do carry with them different requirements to be able to be successful in that. So good job for you for going in that direction.

Brie: I think it's really interesting. I think the other side of that is what do we extract from the discourse to actually demonstrate what we're looking for, right? I've chosen over the past few years, just because of my personal interest, to look at more linguistic things, an example is mean length of utterance. I work with colleagues, a Tavistock Trust winner, like Dr. Jessica Richardson, who works more on the functional side, you know, how many main concepts is someone producing? I think we're starting to get a better idea of what to actually pull out of the discourse to match what we think we want to measure. I think we're getting better at that, and that's something that I want to keep pushing for.

Janet: Good. I hope you do. I think that you're doing that through FOQUSAphasia. You're a co-founder of FOQUSAphasia. By the way, for our listeners, the link to FOQUSAphasia will appear on the Show Notes that accompany this podcast. It’s FOQUSAphasia.com, right?

Brie: Yep, that's it.

Janet: You can access it that way. Anyway, you are co-founder of FOQUSAphasia, which is a group of researchers and clinicians who value the evidence derived from spoken discourse, and who want to improve the state of research, which will eventually translate into improved evidence-based practice for assessment and treatment of spoken discourse and aphasia. Tell me a bit about FOQUSAphasia, and the work this group is doing to support discourse analysis,

Brie: I would love to, it was co-founded by about four of us, gosh, back in 2019, actually, at a Clinical Aphasiology Conference in beautiful Montana. We decided that we wanted a venue where people could (1) network with others interested in this area, and (2) band together to actually achieve some of the goals that all of us clearly shared. As an example, we have one group that focused on best practices, and right after this meeting, I'm going to submit a paper from this group that's actually looking at standards for reporting on discourse. Similar to the Roma Consensus that Dr. Sarah Wallace worked on and spearheaded, and that you were involved, we went through a similar expert panel. We wanted to figure out how to enhance reproducibility, replicability, and the ability to just make assumptions across papers and discourse, what actually needed to be the bare minimum thing were reporting and had studied. That's what we asked people. We're going to put out a list of what we think is necessary and recommended to help create that foundation for the spoken discourse studies. We actually made it a little bit broader than just post-stroke aphasia, we were thinking more adult language acquired disorders. That's coming soon and it's one example of a band of people working together to try and achieve a goal. Another one has been highlighting early career researchers and clinicians in our lecture series. We've had a lot of people working on their Ph.D.’s, at a postdoc level, or people like me in their early career, come and talk about what they're doing with discourse. That's been really well received, we get lots of people coming to those and they're all archived for free on our YouTube channel as well. That's been great for visibility and getting people connected.

Janet: How can someone join FOQUSAphasia?

Brie: It's totally free. If you go to FOQUSAphasia.com, which is spelled FOQUSAphasia.com - Q stands for Quality - you can join us a member and then that gets you access to our forum, and also our mailing list. We send out upcoming events. and also use the forum to advertise studies to find other collaborators for grants, for projects. It’s very much meant to be a clinician and researcher home for people who are interested in discourse from a variety of backgrounds.

Janet: I've been on the site and I very much like some of the explanations you give about discourse, and how you describe the questions and the concerns that people have as we investigate it. I'm enthusiastic about FOQUSAphasia and hope that some of our listeners will join it and become part of this discussion as we figure out how better to think about discourse measurement. As I mentioned, I think Brie, I believe discourse comprehension and production is important, just in life, but especially it's important as we think about aphasia rehabilitation, because it is the heart of communication and connects us in so many ways. As FOQUSAphasia and other aphasia researchers around the world grapple with this complex topic and think about how best to measure discourse in individuals with aphasia. Are there pearls of wisdom you might offer to our listeners that they can put into practice tomorrow as they assess and treat their clients with aphasia?

Brie: Well, that's a deep question. I think, yes. For me, the biggest thing is to come at it from a point of view of what is my treatment targeting, and what measure would be the most appropriate outcome? All of us have had linguistic training. We've taken psychology classes, we've taken all sorts of classes to let us think about the fact that if we're trying to measure something related to improved grammar, for instance, we should probably be thinking about a discourse that's going to be a little bit more robust in the type of things we're asking an individual to do and the type of grammar they're trying to produce. A good example is that there are a lot of treatments out there that are really focused on, let's say, word finding, semantic feature analysis, for example. If we're thinking of the best way to approximate word finding and discourse, we probably want to give people a sufficiently difficult example to try and make them probe for new words, right? So compared to giving them a picture that they're just looking at and just naming things, maybe we want to increase that difficulty a little bit and have some different prompts that we can ask them and measure. I know that sounds so simple, and so intuitive, but I don't think it happens a lot. I think people rely on using, for example, the picture description from the Western Aphasia Battery (Kertesz, 2006) as outcome, without thinking about if it is actually going to show improvement for the reasons I just stated? I think that's just having that critical thinking of what am I actually expecting, will help us to approach this. There are also some great perceptual tools that are now coming out. There's something called the Core Lexicon Checklist (e.g., Dalton et al, 2020) that's great to use on the ground. When you're looking for lexical access, that's a great one that's just come out. And I think those perceptual tools are going to keep getting better because we know that people who are on the ground in the clinic don't have a whole lot of time to sit there and analyze and transcribe everything. I think there are a lot of us trying to create tools right now that we can actually implement.

Janet: I think about some of the tools we have for discourse analysis, and they are very good. But as you mentioned, they take an enormous amount of time. These tools take a lot of time, far more time than a busy clinician has to analyze discourse. So what are we left with if we don't have a tool that we can use quickly and easily, and reliably to show the change in our patients as a result of therapy?

Brie: Yeah, I think what we're left with is unfortunately, an inability to reproduce a lot of these findings that are being published. You read a lot of these very well-done studies that are case studies or use several different people, and you just can't reproduce them, because the measures that they used either weren't reliable, to your point, or they didn't provide enough information about those measures in the paper. That's something I often encounter. For me, it's really thinking more from a research point of view of are we doing something that's useful, that can be implemented. I also want to be a little patient and say I think it's going to take a little bit of time for us at the research level to make the shift and make sure it's implementable. We need to keep moving forward, keep pushing it, but I think we're going to have to really give ourselves a little bit of time. I know that's an annoying answer. But I don't want to rush into it either.

Janet: I don't think it's annoying as much as it is realistic. For so long, people have just, as we talked about earlier, measured discourse in whatever way they wanted to or whatever way seemed appropriate at the moment. But now, if the goal is to try to be focused, reliable, valid, and really make a contribution in a meaningful, clinically meaningful way, it will take time to make sure that there's reliability, and that the advice that comes out of those actions is solid for clinicians?

Brie: Absolutely. I really do think, and I am going to say the ball analogy again, I think the ball is rolling. I think it's rolling quickly, because there are some great people working on these things all across the world at the moment. There are tons of groups that are not only improving outcome measures. I also want to point out, there are some groups that are creating treatments that are specific to discourse. The treatment itself is discourse oriented, and that has not been a focus for many, many years. Discourse has always been the outcome, but not necessarily the thing being treated. There is pretty substantial change, I think, coming and I'm really excited about it.

Janet: You're right, and I'm glad that you mentioned treatments for discourse, because truly discourse has typically been used as pre-post testing, to show that there's been some sort of change, and that's fine. What has to happen and harking back to your interest in the language organization in the brain, what has to happen, so that the discourse itself can improve. Maybe the therapy has to be about the discourse, or some aspect of it, rather than having discourse be the pre-post measurement.

Brie: That's exactly it, and I think you'll find pretty much across the board it is so rare for therapies to, “generalize to discourse”, and I think we're thinking about it wrong. I think we're thinking that because we're training naming, we should see an outcome in word retrieval. But then we're forgetting that we've also chucked in the fact that we're requiring them now to use grammar. We're also requiring them to draw on some memory processes, and maybe some executive function, when we're asking them to do these discourse outcomes. If we train that also during treatment, I think it's going to make a lot more sense that we should be able to measure those things, that outcome

Janet: That’s exactly right. Those are all the things we think about in research design. Not just research design leading to a study, but also clinical research design for what you're going to do with your patient, as you plan their treatment for aphasia.

Brie: Absolutely, and so much credit to clinical decision-making. Again, I have the benefit of a lot of time, and I give a lot of credit to people who make these decisions on very, very little time. I think it's going to be incredible to see how we can finally implement things in the research setting and really making them worthwhile for the clinician as well.

Janet: We just talked about clinical decision-making and for me, I think about mindful clinical decisions. People make clinical decisions all the time. I'd like to see them make those decisions based on evidence, not just the evidence in the literature, but also, thinking back to the evidence-based triangle, the characteristics the patient brings to the table for aphasia? Then adding in what you're learning about discourse, how do we find the best ways to measure the changes, to treat individuals with aphasia, and then measure the changes in discourse in persons with aphasia?

Brie: Yeah, absolutely. I like that. I'm going to use that mindful clinical decision-making now.

Janet: Well, good, go right ahead because that's what it's all about. People make decisions all the time. But if they don't do it mindfully, then you don't know why you've made that decision, or what you might expect. And I think mindful clinical decision-making helps us deliver the most effective and efficient treatment that we possibly can, which, of course is important for all of us and our patients with aphasia and their families.

Brie, your scientific and academic career has provided many interesting experiences and relationships for you, including recognition as a Tavistock Distinguished Scholar in the United States. Many of our listeners are research scientists, and many more are aphasia clinical specialists seeing patients on a daily basis. As we bring this podcast interview to a close, what advice or lessons learned, or interesting observations from your work in discourse measurement, and the use of technology with persons with aphasia, might you share with our listeners?

Brie: My biggest pearl of wisdom, I'm just going to make this very personal, is hearing and listening to the people around you. I really learned so much not only from my peers and the people who are my actual mentors, those that I would consider true mentors in the sense that I've worked for them or they're slightly more advanced than I am. I've learned equally as much from my peers as from my students and from the clinicians that I work with and lastly, from the people with aphasia, who are included in the study. We're just recently running this big study on inner language, how people with aphasia speak to themselves, why they do it, and how it creates a sense of self. I would never have approached this idea without having feedback from one specific person with aphasia that I worked with back in England. He said, “I have the world's richest inner experience, but it just I can't get it out”. That's been a seed in my head for about 10 years. So I just highly recommend just listening and being really open to what people want and what's important to them. I think that's going to be a key thing for driving forward meaningful research.

Janet: We'll keep that in mind. I think that's very important. A couple of studies have come out recently, and you mentioned this earlier as well, about asking people with aphasia and their families, what's important in research, what's important in the way we designed this particular study? Listening to them, and then incorporating those comments into your research design.

Brie: That's right. It's so motivational as well. I come from a very scientific training, I've studies neuroscience, psychology, and all of these things that have taught me how to think about design, but it really doesn't teach me what is meaningful, right? What do people want, what do they need, and so that listening is really important.

Janet: The difference between statistically significant and clinically significant or clinically meaningful, which is not always an easy gap to navigate.

Brie: It's not. That difference is sometimes huge, and sometimes not, but I think it's really valuable to know the difference.

Janet: It's true.

This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest Brie Stark for sharing her knowledge and experience with us as she and her colleagues investigate discourse and virtual assessment and treatment, and the use of technology in aphasia. You can find references, links, and the show notes from today's podcast interview with Brie at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access conversations podcast project. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.

Reference

Dalton SGH, Kim H, Richardson JD, Wright HH (2020). A Compendium of Core Lexicon

Checklists. Seminars in Speech and Language, 41(1), 45-60

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Kandungan disediakan oleh Aphasia Access. Semua kandungan podcast termasuk episod, grafik dan perihalan podcast dimuat naik dan disediakan terus oleh Aphasia Access atau rakan kongsi platform podcast mereka. Jika anda percaya seseorang menggunakan karya berhak cipta anda tanpa kebenaran anda, anda boleh mengikuti proses yang digariskan di sini https://ms.player.fm/legal.

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Brielle Stark about the Distinguished Aphasia Scholar USA Award from the Tavistock Trust, technology, and aphasia rehabilitation, measuring discourse, and FOQUSAphasia.

In today’s episode you will hear about:

  • Applications of technology to aphasia treatment, including provision of virtual care,
  • Ideas for measuring discourse in a clinical environment, and
  • FOQUSAphasia

Dr. Janet Patterson:

Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Health Care System in Martinez, California. Today I am pleased to be talking with Dr. Brielle Stark, who is an assistant professor in the Department of Speech Language and Hearing Sciences at Indiana University in Bloomington, Indiana. Dr. Stark was a Gates Cambridge Trust scholar during her doctoral work, which focused on the effectiveness and feasibility of iPad-delivered speech-language therapy in adults with post-stroke aphasia. Using MRI, she also evaluated the neural correlates of inner speech in this population. During her postdoctoral fellowship, she researched brain and genetic biomarkers related to acquired language difficulties and language improvements following transcranial direct current stimulation in post-stroke aphasia. Presently, she's interested in modeling and predicting language reorganization recovery in acquired adult language disorders and in older adults, using structural and functional brain markers acquired from MRI. Brie is a co-founder of FOQUSAphasia, which brings together experts to improve the research on spoken discourse, specific to aphasia. Finally, she's interested in the relationship between manual gesture and language and communication and brain injury. In 2021, Brie was named a Distinguished Aphasia Scholar USA by the Tavistock Trust UK. The trust aims to help improve the quality of life for those with aphasia, their families and care partners. Congratulations on this honor Brie, and welcome to Aphasia Access Podcast.

Dr. Brielle Stark: Pleasure to be here and finally to meet you in person. I say that with quotes since we're on a video, but close enough.

Janet: Agreed. I feel the same Brie. You were named to Tavistock Trust Distinguished Scholar in 2021. Congratulations again, as you have joined a talented and dedicated group of individuals. How has the Tavistock Award influenced your work in aphasia, both your clinical and research efforts?

Brie: Yeah, first, I was super humbled to join this group I admire all of the prior and current Tavistock Trust Award winners and also work with quite a few of them. It's a privilege to be a part of this group. But, you know, for me, something I've always thought about is, we can do science for science’s sake, but for me, it's a lot more meaningful when we can make the science create meaningful outcomes for people with aphasia, include people with aphasia in designing the studies, and giving feedback on the studies. That's something I've tried to do throughout my career and hopefully am getting better and better at the more I do it. For me, that's the main point, is that we're doing science that's meaningful. That's our lab motto as well.

Janet: Isn't that so important now, because we read a lot of publications about treatments or ideas or assessments, but then they become very difficult to implement in the clinic. That's the whole world of implementation science, in fact we were talking about that just a little bit earlier, the challenge of implementing a treatment that we read about.

Brie: It's so difficult, and I have so much respect for people who work in the field of implementation science. I've dipped my toes into it and then promptly run away on a few occasions. At some point, I'll be brave enough to go back there. As a researcher without a clinical license, I often rely on clinicians to really feed back to me, is this worthwhile? Can we do this? Is this feasible? That's a really important part of my research and what my lab does, trying to make sure we're doing things that are useful.

Janet: Good for you because that is so very important. One of your research interests is technology, as it can be used with individuals with aphasia. As I mentioned earlier, this encompasses a broad range of topics such as iPads speech-language pathology, transcranial direct current stimulation, virtual treatment, and in particular, I want to highlight mentoring women in technology. Across all of these, is there a theme or an idea, or how do you see technology, such as you're using, influencing our clinical and research work with persons with aphasia?

Brie: Yeah, I love technology. Absolutely. I'm a member of a group here at Indiana University called the Center for Women and Technology. I've learned a lot through that group. For me, technology is a fantastic means of communication. Throughout my years, working with older adults as well as people with aphasia, you know, technology can really overcome a lot of barriers that are there for individuals. My prime example is that kind of feeling of aloneness, when you're recovering from a stroke when you're living with aphasia, and technology has a huge impact and kind of remediating that in many ways. So that's what got me interested in doing the iPad therapy many, many years ago. And it's kind of kept me interested, because I think we're moving toward a world where we want to create as many opportunities to communicate as possible. I think technology is one way to do that -not the only way, but definitely one way to do that.

Janet: You investigated telehealth and delivering therapy through telehealth didn't you, if I recall correctly,

Brie: We did a diagnostic mostly through a virtual platform. But the goal is actually, and we just recently got funding to do more of a telehealth model, we just recently finished a design where we were testing its feasibility. We brought people back for two different time points about a week apart. We wanted to make sure that people were comfortable with the task, we had everything lined up in terms of delivering things well, and also reliably amongst our testers. Now that we have that in place, and we just recently pushed out a paper on our actual methods, we're really excited to use it for an actual telehealth purpose.

Janet: Telehealth is so important, I think, and you know, at the VA, we've done quite a bit of that, in both assessment and treatment. I know that there can be significant challenges if the person doesn't have enough bandwidth, if they can't turn on their computer even. I applaud you for jumping into this arena to try to figure out the reliability and how valuable technology can be.

Brie: It is a tough one, I think our biggest hurdle to overcome has actually been the encryption on some of these HIPAA compliant conferencing apps where you just have to jump through about 12 different hoops to make sure you're logged in, you're not a robot, you're not someone who's going to, as they say, hack the conversation. We've had a few issues with that. But the other issue is obviously technology doesn't overcome all of the issues with reaching certain populations. I live in Indiana, I live in a relatively rural part of Indiana and still high-speed internet is not everywhere around here. We're not reaching everyone, but it's definitely one means of reaching more people.

Janet: I think so too, you know, you hear people saying, well, nobody puts down their phones these days, everybody's nose is buried in technology. I used to think that maybe that was a bad thing, but I'm not so sure now, especially when you mentioned earlier about using technology to address isolation that may occur with people with aphasia.

Brie: Yeah, I agree. I think it's a fine line between technology being an opportunity versus the only opportunity. I think we need to just make sure it's available if that is the preferred method. For many, I mean many in our clinic here, it's not the preferred method, so having the opportunity is quite nice. We recently had one of our participants in our aphasia group here move out of state, but wanted to stay in touch with their friends, so they often use technology to make sure that they can keep in touch with the group back here in Indiana. I think that's a great way to show when it is useful, even though that's not maybe their preferred method.

Janet: Well, good, I hope you keep going along this line of clinical research. Let me turn to another topic that's of interest to you - language organization in the brain. You've been looking at both neurotypical individuals and persons with aphasia. What are some of the findings from this area of work? And then, how do you see them as an application in our efforts in aphasia rehabilitation?

Brie: Yeah, that's a great question. I absolutely love neuroscience, it's one of the things I love teaching as well and I have that opportunity here with our masters SLP students, which is my favorite. For me, the first thing I was interested in was just a better understanding of how our brain actually does language. That is such a complicated question. For me, I came into it very much from that theoretical point of view, and a lot of my earlier work still looks at that, and I collaborate with people who are still really looking at that. More recently, I've been focused on to what extent can we learn something about the brain that tells us about some potential for recovery, or in some cases, a potential for decline? It’s so important to try and figure out as much as we can, not necessarily to predict anything, but to improve our ability to tailor our treatments and to have candid discussions with people we're working with. I'm a pretty firm believer that we're never going to predict who's going to recover and who's going to decline because I think there are too many personal factors at play. But I think brain information can give us a lot of really useful things. An example being we've done some work with some collaborators on leukoaraiosis, which is white matter disease, mostly in older adults. it's pretty typical and many older adults, but it seems to be pretty prevalent in people who have had strokes as well. The extent to which there is more leukoaraiosis, in addition to, and even in most cases, is a better predictor than lesion volume itself, in stating whether someone will decline in their language abilities or not. It's this idea that there's something going on at the overall brain health level, that's important to understand. It's not just the stroke that's going to affect how someone is able to recover, for example. I think that's helped us think a little bit more globally about why we care about the brain and how we can use it in helping us understand these patterns.

Janet: Your research is still at the early stages, and not yet with direct application to an individual sitting in front of you, right?

Brie: That's right. That's right. I think we I think we have a long way to go. Honestly, I think it's a design question, as well as a feasibility question. What I mean by that is the variability in people with aphasia is very large, right? We have individuals with different ages, who had strokes at young versus old age, who had different brain health factors. Then also, you have such different presentations of aphasia. It gets difficult, I think, to model brain changes when you have such variability. If you look at all of the work that's out there in neuroscience, it's lots of group studies of typical young adults. There is not very much variability in behavior there compared with what we're working with in terms of people who have language disorders. We have a long way to go, I think in making sure that we're answering the right questions and using the right designs, but I think we're getting closer.

Janet: I agree with that. I'll be looking forward to some of your work. Looking from the behavioral standpoint, as you mentioned, people with aphasia are so variable, not only in their type of aphasia, or their aphasia characteristics, but also in their personal characteristics, their interest in treatment, their ability to get to the clinic, their technology experience. All of these factors, this variability, contributes, I think, to a person's success or lack of success in treatment, and in general, in coping and living with aphasia. Taking all that into consideration when you're looking at brain function and language organization is very important.

Brie: Absolutely. Brain is one piece of the puzzle, right? And it doesn't, it certainly doesn't explain everything. I always chat with my students about the fact that motivation is so hard to quantify, to your point. I don't think that's something we're ever going to figure out as a brain basis, right? Someone's personal motivation to go to therapy, as you stated, or someone's environment, which is something we encounter a lot, like what's their social network like? What's their support system like? We're never going to be able to answer those questions with brain data alone. I think it's important to have that holistic point of view where you do understand the other factors at play. That's also why I like this LPAA model because there's an understanding of all of these factors contributing to the single person. I like that idea of designing studies in that way, as well.

Janet: We've been doing a bit of work investigating motivation, a couple colleagues and myself. We just keep going down this path and finding ourselves almost coming back to where we started, and not so much full circle, but full spiral because we seem to be back at the same point, but we're better, we're a little further advanced in our knowledge, but it's so difficult to understand the concept of motivation. I think that, as you mentioned a few minutes ago, clinicians or anybody really, but when we think about people who are working with people with aphasia, we tend to say, well, that person is motivated, or they're not motivated, but we haven't measured their motivation, we don't know what contributes to it. All of these factors, then are just part of what the brain does is it tries to reorganize itself and think through language and live with aphasia.

Brie: Absolutely, and kudos to you. That sounds like an intimidating research question.

Janet: It is, believe me, it certainly is. Let's turn now to discussing discourse production and analysis and aphasia, which I know has come to the forefront in your work lately. This topic, I think, has a long and storied history, long history. Despite many publications on this topic, clinicians and researchers remain in disagreement, or they lack clarity on the best way forward to use discourse analysis in a meaningful way in aphasia rehabilitation and clinical research. How did you become interested in discourse measurement in aphasia?

Brie: Yeah, that's a great question, and also a great synopsis of the history. I think there is an extremely long history and discourse is so fascinating because it is so interdisciplinary. I mean, discourse is interesting to people in linguistics, psychology, neuroscience, communication sciences and disorders, philosophy, it just goes across a lot of different disciplines. For me, I have always been interested in communication that looks like real life. Even in my Ph.D., I started focusing on it, reading a bit more about it, that continued through my postdoc, when I had an opportunity to do more independent research. Now in my assistant professor position, I decided that even though it scared me a little bit, I was going to tackle this. This scare is still real, but it's definitely fun. The people who are interested in discourse are some of the best people I've ever met. They're up for the challenge. That's why I've continued to really push, what I think is a kind of a difficult ball, up a hill, over these past few years. I'm interested in using discourse as a more natural outcome of therapy, but also a more natural outcome of just how people communicate, how we can actually talk about how people communicate. I'm all for naming outcomes as well, I think there's a place for those, I think there's a place for individual outcomes like that. I think discourse has a long way to go before it can come to the same standard and be used in the same way as a lot of the outcomes we have out there.

Janet: Isn't discourse what we do? When we tell jokes, when we tell stories, when we have conversations, when we connect any kind of speech, when we talk to ourselves. It is what we do. But it's so variable. You're right, there are so many challenges in trying to figure it out. I'm glad you're rolling that ball up the hill, and you have a lot of help to get that ball to the top one of these days.

Brie: I thank goodness for the help. Something I've just chosen to tackle is, and I'm really interested in, is how discourse changes according to the scenario that we're in. I really am interested in that. You know, the tasks that we give people to elicit language, how different is a discourse going to be if they're restricted to looking at a picture versus when they have to bring in some autobiographical memory, when they're talking about themselves, when it's emotional. That's something I'm super interested in, and I've done a lot of research on that. I'd like to now include people with aphasia in building those meaningful tasks. What do individuals with aphasia feel like elicits the language that reminds them the most of themselves? Some of the feedback we get is, “you are making me tell Cinderella again?” That type of feedback makes me feel like we're probably not asking the right question to get the best language sample from this person. That's something we're pursuing, my colleague and I, we're going to start really just asking the questions such as, “What do you feel like most resembles how you communicate on a daily basis”

Janet: There are several different kinds of discourse, we all we all know that. I just think about the life of anyone, the life of a person with aphasia, they want to tell a joke, or they want to tell a story, they want to whisper an endearment to a person who is close to them, they want to order coffee at the coffee shop, all those are such different kinds of discourse. Maybe they're not long, just a few words, but they are discourse. They do carry with them different requirements to be able to be successful in that. So good job for you for going in that direction.

Brie: I think it's really interesting. I think the other side of that is what do we extract from the discourse to actually demonstrate what we're looking for, right? I've chosen over the past few years, just because of my personal interest, to look at more linguistic things, an example is mean length of utterance. I work with colleagues, a Tavistock Trust winner, like Dr. Jessica Richardson, who works more on the functional side, you know, how many main concepts is someone producing? I think we're starting to get a better idea of what to actually pull out of the discourse to match what we think we want to measure. I think we're getting better at that, and that's something that I want to keep pushing for.

Janet: Good. I hope you do. I think that you're doing that through FOQUSAphasia. You're a co-founder of FOQUSAphasia. By the way, for our listeners, the link to FOQUSAphasia will appear on the Show Notes that accompany this podcast. It’s FOQUSAphasia.com, right?

Brie: Yep, that's it.

Janet: You can access it that way. Anyway, you are co-founder of FOQUSAphasia, which is a group of researchers and clinicians who value the evidence derived from spoken discourse, and who want to improve the state of research, which will eventually translate into improved evidence-based practice for assessment and treatment of spoken discourse and aphasia. Tell me a bit about FOQUSAphasia, and the work this group is doing to support discourse analysis,

Brie: I would love to, it was co-founded by about four of us, gosh, back in 2019, actually, at a Clinical Aphasiology Conference in beautiful Montana. We decided that we wanted a venue where people could (1) network with others interested in this area, and (2) band together to actually achieve some of the goals that all of us clearly shared. As an example, we have one group that focused on best practices, and right after this meeting, I'm going to submit a paper from this group that's actually looking at standards for reporting on discourse. Similar to the Roma Consensus that Dr. Sarah Wallace worked on and spearheaded, and that you were involved, we went through a similar expert panel. We wanted to figure out how to enhance reproducibility, replicability, and the ability to just make assumptions across papers and discourse, what actually needed to be the bare minimum thing were reporting and had studied. That's what we asked people. We're going to put out a list of what we think is necessary and recommended to help create that foundation for the spoken discourse studies. We actually made it a little bit broader than just post-stroke aphasia, we were thinking more adult language acquired disorders. That's coming soon and it's one example of a band of people working together to try and achieve a goal. Another one has been highlighting early career researchers and clinicians in our lecture series. We've had a lot of people working on their Ph.D.’s, at a postdoc level, or people like me in their early career, come and talk about what they're doing with discourse. That's been really well received, we get lots of people coming to those and they're all archived for free on our YouTube channel as well. That's been great for visibility and getting people connected.

Janet: How can someone join FOQUSAphasia?

Brie: It's totally free. If you go to FOQUSAphasia.com, which is spelled FOQUSAphasia.com - Q stands for Quality - you can join us a member and then that gets you access to our forum, and also our mailing list. We send out upcoming events. and also use the forum to advertise studies to find other collaborators for grants, for projects. It’s very much meant to be a clinician and researcher home for people who are interested in discourse from a variety of backgrounds.

Janet: I've been on the site and I very much like some of the explanations you give about discourse, and how you describe the questions and the concerns that people have as we investigate it. I'm enthusiastic about FOQUSAphasia and hope that some of our listeners will join it and become part of this discussion as we figure out how better to think about discourse measurement. As I mentioned, I think Brie, I believe discourse comprehension and production is important, just in life, but especially it's important as we think about aphasia rehabilitation, because it is the heart of communication and connects us in so many ways. As FOQUSAphasia and other aphasia researchers around the world grapple with this complex topic and think about how best to measure discourse in individuals with aphasia. Are there pearls of wisdom you might offer to our listeners that they can put into practice tomorrow as they assess and treat their clients with aphasia?

Brie: Well, that's a deep question. I think, yes. For me, the biggest thing is to come at it from a point of view of what is my treatment targeting, and what measure would be the most appropriate outcome? All of us have had linguistic training. We've taken psychology classes, we've taken all sorts of classes to let us think about the fact that if we're trying to measure something related to improved grammar, for instance, we should probably be thinking about a discourse that's going to be a little bit more robust in the type of things we're asking an individual to do and the type of grammar they're trying to produce. A good example is that there are a lot of treatments out there that are really focused on, let's say, word finding, semantic feature analysis, for example. If we're thinking of the best way to approximate word finding and discourse, we probably want to give people a sufficiently difficult example to try and make them probe for new words, right? So compared to giving them a picture that they're just looking at and just naming things, maybe we want to increase that difficulty a little bit and have some different prompts that we can ask them and measure. I know that sounds so simple, and so intuitive, but I don't think it happens a lot. I think people rely on using, for example, the picture description from the Western Aphasia Battery (Kertesz, 2006) as outcome, without thinking about if it is actually going to show improvement for the reasons I just stated? I think that's just having that critical thinking of what am I actually expecting, will help us to approach this. There are also some great perceptual tools that are now coming out. There's something called the Core Lexicon Checklist (e.g., Dalton et al, 2020) that's great to use on the ground. When you're looking for lexical access, that's a great one that's just come out. And I think those perceptual tools are going to keep getting better because we know that people who are on the ground in the clinic don't have a whole lot of time to sit there and analyze and transcribe everything. I think there are a lot of us trying to create tools right now that we can actually implement.

Janet: I think about some of the tools we have for discourse analysis, and they are very good. But as you mentioned, they take an enormous amount of time. These tools take a lot of time, far more time than a busy clinician has to analyze discourse. So what are we left with if we don't have a tool that we can use quickly and easily, and reliably to show the change in our patients as a result of therapy?

Brie: Yeah, I think what we're left with is unfortunately, an inability to reproduce a lot of these findings that are being published. You read a lot of these very well-done studies that are case studies or use several different people, and you just can't reproduce them, because the measures that they used either weren't reliable, to your point, or they didn't provide enough information about those measures in the paper. That's something I often encounter. For me, it's really thinking more from a research point of view of are we doing something that's useful, that can be implemented. I also want to be a little patient and say I think it's going to take a little bit of time for us at the research level to make the shift and make sure it's implementable. We need to keep moving forward, keep pushing it, but I think we're going to have to really give ourselves a little bit of time. I know that's an annoying answer. But I don't want to rush into it either.

Janet: I don't think it's annoying as much as it is realistic. For so long, people have just, as we talked about earlier, measured discourse in whatever way they wanted to or whatever way seemed appropriate at the moment. But now, if the goal is to try to be focused, reliable, valid, and really make a contribution in a meaningful, clinically meaningful way, it will take time to make sure that there's reliability, and that the advice that comes out of those actions is solid for clinicians?

Brie: Absolutely. I really do think, and I am going to say the ball analogy again, I think the ball is rolling. I think it's rolling quickly, because there are some great people working on these things all across the world at the moment. There are tons of groups that are not only improving outcome measures. I also want to point out, there are some groups that are creating treatments that are specific to discourse. The treatment itself is discourse oriented, and that has not been a focus for many, many years. Discourse has always been the outcome, but not necessarily the thing being treated. There is pretty substantial change, I think, coming and I'm really excited about it.

Janet: You're right, and I'm glad that you mentioned treatments for discourse, because truly discourse has typically been used as pre-post testing, to show that there's been some sort of change, and that's fine. What has to happen and harking back to your interest in the language organization in the brain, what has to happen, so that the discourse itself can improve. Maybe the therapy has to be about the discourse, or some aspect of it, rather than having discourse be the pre-post measurement.

Brie: That's exactly it, and I think you'll find pretty much across the board it is so rare for therapies to, “generalize to discourse”, and I think we're thinking about it wrong. I think we're thinking that because we're training naming, we should see an outcome in word retrieval. But then we're forgetting that we've also chucked in the fact that we're requiring them now to use grammar. We're also requiring them to draw on some memory processes, and maybe some executive function, when we're asking them to do these discourse outcomes. If we train that also during treatment, I think it's going to make a lot more sense that we should be able to measure those things, that outcome

Janet: That’s exactly right. Those are all the things we think about in research design. Not just research design leading to a study, but also clinical research design for what you're going to do with your patient, as you plan their treatment for aphasia.

Brie: Absolutely, and so much credit to clinical decision-making. Again, I have the benefit of a lot of time, and I give a lot of credit to people who make these decisions on very, very little time. I think it's going to be incredible to see how we can finally implement things in the research setting and really making them worthwhile for the clinician as well.

Janet: We just talked about clinical decision-making and for me, I think about mindful clinical decisions. People make clinical decisions all the time. I'd like to see them make those decisions based on evidence, not just the evidence in the literature, but also, thinking back to the evidence-based triangle, the characteristics the patient brings to the table for aphasia? Then adding in what you're learning about discourse, how do we find the best ways to measure the changes, to treat individuals with aphasia, and then measure the changes in discourse in persons with aphasia?

Brie: Yeah, absolutely. I like that. I'm going to use that mindful clinical decision-making now.

Janet: Well, good, go right ahead because that's what it's all about. People make decisions all the time. But if they don't do it mindfully, then you don't know why you've made that decision, or what you might expect. And I think mindful clinical decision-making helps us deliver the most effective and efficient treatment that we possibly can, which, of course is important for all of us and our patients with aphasia and their families.

Brie, your scientific and academic career has provided many interesting experiences and relationships for you, including recognition as a Tavistock Distinguished Scholar in the United States. Many of our listeners are research scientists, and many more are aphasia clinical specialists seeing patients on a daily basis. As we bring this podcast interview to a close, what advice or lessons learned, or interesting observations from your work in discourse measurement, and the use of technology with persons with aphasia, might you share with our listeners?

Brie: My biggest pearl of wisdom, I'm just going to make this very personal, is hearing and listening to the people around you. I really learned so much not only from my peers and the people who are my actual mentors, those that I would consider true mentors in the sense that I've worked for them or they're slightly more advanced than I am. I've learned equally as much from my peers as from my students and from the clinicians that I work with and lastly, from the people with aphasia, who are included in the study. We're just recently running this big study on inner language, how people with aphasia speak to themselves, why they do it, and how it creates a sense of self. I would never have approached this idea without having feedback from one specific person with aphasia that I worked with back in England. He said, “I have the world's richest inner experience, but it just I can't get it out”. That's been a seed in my head for about 10 years. So I just highly recommend just listening and being really open to what people want and what's important to them. I think that's going to be a key thing for driving forward meaningful research.

Janet: We'll keep that in mind. I think that's very important. A couple of studies have come out recently, and you mentioned this earlier as well, about asking people with aphasia and their families, what's important in research, what's important in the way we designed this particular study? Listening to them, and then incorporating those comments into your research design.

Brie: That's right. It's so motivational as well. I come from a very scientific training, I've studies neuroscience, psychology, and all of these things that have taught me how to think about design, but it really doesn't teach me what is meaningful, right? What do people want, what do they need, and so that listening is really important.

Janet: The difference between statistically significant and clinically significant or clinically meaningful, which is not always an easy gap to navigate.

Brie: It's not. That difference is sometimes huge, and sometimes not, but I think it's really valuable to know the difference.

Janet: It's true.

This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest Brie Stark for sharing her knowledge and experience with us as she and her colleagues investigate discourse and virtual assessment and treatment, and the use of technology in aphasia. You can find references, links, and the show notes from today's podcast interview with Brie at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access conversations podcast project. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.

Reference

Dalton SGH, Kim H, Richardson JD, Wright HH (2020). A Compendium of Core Lexicon

Checklists. Seminars in Speech and Language, 41(1), 45-60

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