The NDBI Navigator

Episode 29 Caregivers as Change Agents: Data, Innovation, and Expanding Access to NDBI

• Jamie Hughes-Lika, PhD, BCBA-D, LBA, IBA • Episode 29

Share episode

Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.

0:00 | 44:51

In this episode of the NDBI Navigator Narratives Podcast, Dr. Jamie sits down with Dr. Deanna Swain, clinical psychologist and assistant professor in the Department of Pediatrics at the University of Colorado. Dr. Swain shares how her work spans clinical practice, informatics, and research — all with a shared goal of improving access to meaningful, evidence-based support for autistic children and their families.

SPEAKER_00

Hi, everybody. Welcome back to another episode of the NDBI Navigator Narratives, this informational, conversational style podcast that brings in incredible researchers, community providers, and practitioners that have wonderful stories to share with you all about what they've been doing as it relates to NDBI. And I am incredibly excited to have my long-awaited guest, Dr. Deanna Swain, come on today. She is an assistant professor in the School of Medicine and the Department of Pediatrics at the University of Colorado. Deanna, thank you for joining us. Yes, so glad to be here. Through the sickness, tell us all of that. The stars have aligned and we did it. Can you spend some time introducing yourself in more detail about what you've been doing throughout your career, what locations you've been moving around to, and just let us know a little bit more about your practice.

SPEAKER_02

Yeah, absolutely. Um, so as you mentioned, I'm a clinical psychologist and I work at Children's Hospital of Colorado. Um, so I actually wear a lot of different hats right now. Um, I wear a clinical hat, and in that role, I um provide autism diagnostic evaluations um for a specific uh clinic in which we partner with primary care providers that have been trained by our clinicians to learn how to do an autism developmental history. So they do that in their practice and then refer families to our clinic. And then we kind of work together and give feedback of like, hey, yeah, that was a great one, or like, hey, I think you could have really elaborated here, or um, like, hey, we were really off, like let's set a base.

SPEAKER_00

Um innovative. I love it.

SPEAKER_02

Yeah, it's been really cool. Um, so I I see families there. Um, I'm also in a unique clinic called the Turner Syndrome Clinic. Um, so for those that aren't aware, Turner syndrome is a genetic condition, um, primarily affects girls and women. Um, and it's when, you know, most females are born with two X chromosomes. Um, but in Turner syndrome, you either have one or one X and a partial X.

SPEAKER_01

Okay.

SPEAKER_02

Um and so the reason that I am in that clinic is that we see higher rates of developmental and learning differences and actually higher rates of autism and ADHD. So I join our multidisciplinary team and do some brief consults just to check in how things are going. And then if a family is concerned about autism, we do kind of our separate um single discipline evaluation.

SPEAKER_00

And you're a researcher as well, which we're gonna show.

SPEAKER_02

Oh, yes, yes, absolutely.

SPEAKER_00

And so your other hat.

SPEAKER_02

Oh my gosh, yes, and even additionally, I I serve a small little tiny hat called informatics. I learned a lot about how the electronic health record system works. And um, that extra training and a little bit of buyout allows me to kind of build tools in our system that help our department, you know, be more efficient. But also um, one of the projects that I'm working on is teaming up with people across the world to be able to actually log or or get data when we're meeting families face to face in our clinical encounters. Um, most of the time, you know, we just write these really long narrative notes. Um, and it's not helpful in terms of answering important or meaningful questions. So we're really trying to work together to see can we build up a system where we can better answer those questions that families ask us a lot?

SPEAKER_00

Yeah. Cool data source to get from that platform. I'm gonna call it a platform for lack of a better understanding of it, that you can get that not locally, but across different cultures and around the world. And to see, again, thinking about removing and understanding barriers to care, which we'll chat about are innovative ways to help support families. Um, I love that versus it's a report that's filed away as a PDF that it gets all dusty and no one looks at, as opposed to these ongoing medical visits, probably with sleep and digestive and everything else that comes into supporting that um individual that you have as a client. So, what a really cool, like live, real-time way to keep track of that, those dots.

SPEAKER_02

Yeah.

SPEAKER_00

Yeah.

SPEAKER_02

And it's hard, right? Everyone does it differently, everybody's reinventing the wheel. So we really have to come together and say, okay, what can we agree on? And not lose scope of like what's meaningful for families, too. Um, and so I think it's a really cool project that we're so that's underway right now to be published. It's underway. Um, yes, it's not um, it's actually an act of love because it's not funded right now. Um, we do have a small like pilot project that we're doing. Um, so we're partnering with Boston Children's right now, um, just to see, okay, can we implement even a system of of tracking some similar outcome measure in our notes? Um, and so that's allowing us to kind of see, okay, if we do that, what are some questions that we can answer?

SPEAKER_00

Love that.

SPEAKER_02

So we got to start somewhere.

SPEAKER_00

Yeah.

SPEAKER_02

Like, well, what about this? What about this? And they're like, yes, but wait. Um, so we're we're starting small and we're building up. Um so that is underway right now.

SPEAKER_00

Yes, my wheels are just spitting universal access to care, where family moves or provider that is the same, how wonderful would that be? And yeah, all in the system and pull from it. But I really love that you tie it back to the outcome measures, right? I feel like a lot of us that are doing work as a practitioner, we're looking at, especially in the ABA or NDPI field, um, the treatment hours that we're giving, the dosage, are we seeing the outcomes you would hope to see, or barriers we're removing, remediating to care, um, looking at that. And outcomes are such a really big thing. But I also love how you talked about meaningful for families. Are those outcomes, do they matter? Are they meaningful for what we are intending to do as it relates to really supporting the entire family unit? Uh, I know sometimes with our treatment, it's just kind of laser focused on the child and NDBIs, I feel like really bring the caregivers in just a little bit more with their voices, I find that really kind of hones in on that message that you're talking about there. Yeah, absolutely.

SPEAKER_02

Um, and another like exciting research area that I've been interested in. So I've done a lot of work um in the past that I can yeah, definitely get to. Um, but you know, a lot of my work has been focused on kind of parent or caregiver-mediated interventions and you know, why do they work and how do they work and the outcomes? And and over time, I've just also been interested about okay, that's great that they work, but if people can't get them, so what? Um, and so really this like access to care issue has been driving a kind of a shift in my research recently. Um, and I've been really open to exploring innovative creative ways and have stumbled upon um digital mental health solutions. And so I have um partnered with this app. It's free to download, um, but it took the Ruby parent coaching material um and put it in an app so that you know the beauty of that, right, is a family that's facing barriers to care, you can pick it up at any location at any time and access that information. Now, on the downside is when you introduce um something like this, um, often with digital tools in general, we see really low initial and sustained engagement. So that's really driving a new award that I'm I'm submitting, or it's under review, so we'll see what happens. Um, but you know, I really want to think about how do we partner with families and providers to understand and build like an engagement toolkit, um, recognizing that if you partner with the end users, um, you're gonna have a better outcome that's better fit, fitting, and better, you know, useful instead of okay, we know it works, but oh crap, now we got to get you to use it. Um, and so it's it's like I'm trying to get training um in how do you do co-design and then how do you run these trials in real-world settings. Um I actually have been analyzing the data for the digital health tools, and it matters if it's in a research setting versus just you know clinical care as usual. Um, it actually mattered less about whether a family would connect. It was pretty similar rates of I said I'm interested and I'm gonna connect to it. Okay, but it does matter if if they say I'm gonna do research, I they we show they'll they'll log in more, they'll do more of the modules instead of I'm interested clinically, and then I don't agree to do research. So it's it's fascinating.

SPEAKER_00

It's this yes, yeah. Yes, I'm just again, wheels are spinning thinking about. I'm gonna introduce you to my colleagues over at NeuroAI, a company based out of Canada, who built an app and DBI strategies, content videos for parents to use. And the whole driving force behind this is Ali, the um support AI engineered support, coded, all the secure things set up, but it pulls from questionnaires for parents, it picks the pain points and it customizes the the parents. Yeah, but I I believe 100% right time. It's that engagement, getting parents, and there's metrics that they're tracking for that. When what time of day, what content are they logging on to? Is there a style? They like the little video infographics more than the little blog style post. Um, so when we created that, it was very much thinking user interface, yeah, the font, the tech, everything, yeah, yeah, keeping people there. Once they get in there, do they stay there? Because we want them to engage to be able to and change and adjust their support strategies for the kid.

SPEAKER_02

But we also know it's so interesting because you're talking about engagement strategies that come directly from the tool itself, correct? And and we also know that a guided guided support can be really influential. But what is that need? And that's why I love this approach is like it's really taking and identifying those barriers and then mapping it to a strategy because it might just be I need that social accountability, I need another mom to kind of reach out to me, yeah, and be like, hey girl, are you doing this? Okay, oh crap, yeah, you know, I gotta do it because a reminder, yeah, exactly.

SPEAKER_00

Like just keep lifing for everybody and you're busy and you have maybe more than one child, and then maybe you have your own stuff going on with work, or sometimes we're not just parenting, we're also partnering with some neurodivergence, and that is a whole other kind of level of support. So I love that you're trying to be innovative and trying to figure out how best to support families because you can again lead them to the water, but you can't make them drink, but you can arrange the environment and set up some conditions and to support them to drink more and learn and then be the change child, especially if they're in an area where they're long wait lists, no access, hunting, right?

SPEAKER_02

You know, and I think the last piece I'll say on engagement, engagement's so fascinating to me because we often we're like, oh, engagement. Did they come to the session? Did they do the module? And we leave it as that, but it's so multifaceted, multi-layered. And the pieces that you were talking about earlier are very important. Uh, you know, are they learning the materials? Are they gaining that knowledge? And the piece that I found and I struggle with, I'm so intrigued by, is like, okay, the biggest piece of engagement that I think is a challenge for caregiver-mediated interventions and NDBIs is how are you doing the skill you learn in your everyday environment?

SPEAKER_00

Yeah.

SPEAKER_02

And that's the piece of engagement that's hard to track in an app. I mean, it's hard to track in a day-to-day um in-person, you know, intervention. Um, but you would do that more formally, right? How did it go? And so that's the part that I'm I'm also intrigued on on checking in and figuring out ways to measure.

SPEAKER_00

And uh huh. I'm gonna connect you with my team because oh great about the having parents upload videos and the AI. Oh, the time point it's trained to look at that and give the feedback if they hit the criteria that they're doing the strategy, and then extra support going rinse and repeat, keep going on it. So I don't know if that part of the app is developed yet, but that is 100% where they were going is the application of the learning knowledge base, what parents can understand. But then it's the performance-based. How do we, as a small team, access all of these families? We utilize AI and technology, write the code, build it out, families. Upload the system is trained on what we would code them and automatic immediate feedback, real time to take that well in parent user-friendly, right? Kind of feedback tone is what we were working on. So I'm connecting you after this podcast. I'm connecting. Okay, great. I'm a cool research study that you can get and kind of use, and it's all in DBI focused, which is my love. So cool. So yeah. Well, that's exciting. So you have a clinical hat, you have a researcher hat, you're in the Turner Syndrome Clinic doing all of that incredible stuff there, and then the data engagement info, informatics, informatics. Informatics, yes. So yes, you're busy. And before we came on, you had shared that you were uh Cornell, was that right?

SPEAKER_02

Kind of your Yeah, oh yeah. So my kind of background, um, I've been all over. So I did undergrad at Boston College. Um, and then that's actually where I first got into research. So I actually went to undergrad um wanting to major in math. My mom is a psychologist, and I was like, I want nothing to do with that. And I loved math, right? You can you use math, you figure out problems, like there's a solution. Um, and and I eventually got to a spot where I was like, well, I don't really want to teach, I don't want to be an actuary. I don't know. I don't know about this math. And I got into psychology.

SPEAKER_00

Because your mother's so happy.

SPEAKER_02

I know she was. Um and I was like, oh, I can use math to try to figure out the answers to these problems. But oh, in psychology, they're really complex and they're really challenging, which is cool. Um, and so I kind of feel like that that melded over time. And I I joined a lab where they were doing theater training um for neurotypical youth, but seeing how that impacted things like empathy, emotion regulation, um, theory of mind, and and actually got this really amazing post back uh research assistantship at uh Vanderbilt University, where I got to help out with theater training for autistic youth. And it was like, whoa, this is so cool. Um, and and I think it was there that I just fell in love with families. Um, I like I loved listening and talking to the parents and just seeing that transformation of like I connect with my child in a different way or like I see them in a different light. And that was powerful to me. Um, as well as talking to them about how that impacted their stress. Um, you know, uh parent stress was huge. Um, and this was something that that made a difference. And I I that really intrigued me and and led me when I went to graduate school at Virginia Tech. Um, I studied a lot of parent stress and and parent-child interactions, and I I that's where I first fell in love with NDVIs. So as a first-year grad student, I I did one semester as a teaching assistant, and I was like, this is all right, but like I love the clinical, like I want to be with the families, and I got to do that my second semester. Um, I got to go to Santa Barbara and do a PRT training and love it. Oh my gosh, can't turn that off once it clicks. Yep. I fell in love with the ABC model, like using child motivation, the naturalistic, you know, environment. Um, and I, as part of my assistantship, was uh was able to like go to families' houses and like train them in PRT, and it was so cool. I just seeing how parents or caregivers changed and and just the bond change was just so cool. Um, and I truly I loved it. And so I tried to kind of like push those two ideas together of like, okay, parent stress and in in caregiver-mediated intervention or or PRT. So my I bit off a way more than I can chew with my dissertation. I love it, I got a grant to do PRT groups with mindfulness or with just psychoeducation.

SPEAKER_01

Okay.

SPEAKER_02

Um, spoiler alert, I unfortunately never got it published, but um all parents, you know, um showed some nice improvements. Um, but we we had some pretty high attrition rates. Um and interestingly, when I was piloting this with another uh training award, I tried to do, okay, let's just do the mindfulness first and then do PRT. And parents were like, stop it. Like, I just want to help my kid. Um, and it was so interesting to me of like, but you're helping by helping yourself.

SPEAKER_00

It's like a back, you're backing into it.

SPEAKER_02

Yeah. Um, and they're like, no, I want to learn strategies now. And so that it really just encapsulated my like drive and interest of like how do caregiver-mediated interventions work and like why. Um, and so I matched on internship at um Children's Hospital, Colorado here, um, and I got to do some training in ESDM. Love that as well. Um, and then I um went to Wild Cornell in New York, um, so the Center for Autism and the Developing Brain. Um, I went for research and clinical work. Um, so in terms of research, um, Dr. Sophie Kim uh had a an R01 where she was actually got researchers um from three different prominent NDBIs. So we had ESDM, we had Jasper, we had ESI, Amy Weatherby's, um, that were all you know high-powered RCTs that had all been published, and they agreed to share videos um with Sophie and the team, and we coded them for child social communication as well as developed and coded parent NDBI strategy use. And so I got to come on at a great time, like right after the Monsi was created, um, and I got to help kind of finish the coding and do you know, meet with the team, do the analyses, and we've published some really cool papers. Um the first was just like uh uh a proof of concept, like, can we do this? Right, these were trials that were all different uh amounts of treatment intervention, all different frequency and length, and you know, everything was different about these, and including the outcome measures that they chose. There were no outcome measures that overlapped in terms of social communication um across these three trials. And in like diving into that, it was wild for me to learn like most there's very few, you know, um studies that use similar overlapping outcome measures. And in fact, a lot of studies use their study specific ones. Um, and so that was just like very eye-opening for me. I'm a very big data, like I want people to share. I hate reinventing the wheel. Yes. Um, and so this was a really cool opportunity for me to learn hey, also we need big data to answer these questions. Um, and so even it's wild, but even in these three big sites, like after we coded the videos and took out the ones, you know, that were uncodable or met certain criteria, I mean, we still had a lot of videos, but it still was not quite the amount that. Even thought we would have in the end. Um, so yeah, so that was our first study. I'll stop talking.

SPEAKER_00

No, oh my god, keep going. I just want to make sure I'm gonna link the studies to the notes. This is the one, um, is this the 2005 one, the caregiver behavioral changes?

SPEAKER_02

Um, this is the first one. It might have been 2003. It's about Bosc.

SPEAKER_00

Okay. Is it implementing a uniform outcome approach early intervention? I'm gonna link that.

SPEAKER_02

So that was the first one. Um, and then we have two papers out on the Monsi. Um, so the Monsi is the measure of NDBI strategy implementation um and caregiver change. Um, so the Monsi CC. Um, and so I came at a great time because the uh postdoc before me really focused on building that tool. Um, and so she had built and they had published um kind of the study, the validation study on that observation tool before I got there. And then we were finishing the coding. And the 2005 paper that you were talking about was really cool to empirically show that caregivers truly are the active ingredient of change for child outcomes. Um I was like, yes, I believe we know that, right? As an NDBI clinician, you're like, yeah, duh. Um, but it was so cool to like have the data to support that.

SPEAKER_00

Yes. Anything from those studies that came out, or or if can you talk about the Bosque? That's one I don't think a lot of people are going to be familiar with as familiar with as well. And I will put a link for where people can learn that the brief observation of social communication change Bosque.

SPEAKER_02

Yes, yep, absolutely. Um, yes, so I believe that was um started by Kathy Lorde and her team. Um, and and it's really um taking similar codes um that you might see or be familiar with from the ADOS. Um, so you know, I eye contact and um play and engagement and join attention and different things that you'll code, you'll watch um, so it's like about eight to ten minute videos, um, and then you watch the first half and then do your codes, and then you'd watch the second half and do more codes, and then it's the average of those two. Um, and so you're able to, similar to the ADOS, you'd have a social communication score, and then there's a a restricted repetitive behavior score. Those are were a bit more variable, right? And we know that from some research too, of like different contexts might elicit different behaviors, and so um we might see more variability in those scores. Um, and we really focused on the social communication outcomes, as that's a primary target in NDBIs. Um and so one paper you were asking, are there any other papers that kind of came out of this? And one paper um led by uh Dr. Hallie Brown. Um, so she's still at Cornell um or while Cornell, and she did a cluster analysis of uh like right up your alley. I was like, oh, this is really cool. So she took um all of the baseline um caregiver observation codes and kind of said, are there groups of caregivers? Um, and I think what was cool about this, we we ended up on four different groups. Um don't quote me, you know, there were certainly some caregivers, and and we all, you know, you might relate to this of like there are some caregivers clinically that come in and you're like, wow, you know a lot. Um, you know, you read a lot or whatever, you have some great strategies. So there were some caregivers that had just high starting points, and then there were some that were consistently low, and then there was some, you know, the two other groups were like inconsistent or like moderate or something.

unknown

Okay.

SPEAKER_02

And it truly did show, and we try to track, we track their scores over time, and it was truly the the the parents or caregivers that had those lower inconsistent or lower scores that showed the most change over time. Um, which again is you know not mind-blowing, but it's still cool and a good reminder of like we need to meet families where they're at. And NDBIs are so great because you can tailor, you know, the strategies and the outcomes to the family, um, not just the child, um, but the caregiver and the family unit itself.

SPEAKER_00

Yes, I love that what you just said. I always talked about the same thing. We've got to meet children where they're at, not where we want them to be. And I love hearing you say that for the families, same thing, the parents and caregivers where they're at. Again, not where we want or expect them to be, but kind of looking at how do they learn best. And in NDBI, you know, ESDM specifically, we do a lot with supporting adult learning and parent-mediated and motivational interviewing and just a very style of coaching and supporting parents. And, you know, I see parent training and I just cringe a little bit. I'm like, parents don't need to be trained on how to be a parent coaching or guidance, right? Yeah. I just love that kind of we take that approach within NDBIs, and I keep going back to this analogy like you have a bottle and there's a marble in it, and that one marble, safe for speech therapy, this is what comes to my mind, represents the 30 minutes of speech that my son gets. Well, if I know what they are doing in speech and that can coach me and teach me how to do this, then my marbles are all the other hours in the day that I'm filling up with. Yes. And I can help maintain and generalize and really ensure that what they're doing is sticking. And I can also do that if someone coaches me and supports me in doing so. So the kind of models where NDPI providers or OT or speech, where they're very much open to supporting and guiding parents, I think is so needed versus go in the room, shut the door, come out. What am I supposed to do with that at home? Right. I might be the most initiative-taking parent ever. But if I don't know what to do, I might feel hesitant that I could do something wrong or do something, make something worse. And then I don't try at all. And so I love this kind of mantra of meet the parents where they are and give them the coaching support so that they can build out those waking hours. Everything is an opportunity for learning when you're targeting social communication in everyday routines, which you know, zero to four, that's where we kind of tend to do it. So I love that um the idea of supporting parents and and meeting parents in that same manner. Yes.

SPEAKER_02

I feel like I'd probably say that to every family I see in a feedback session of like, I want you to get in there. Um, and I want you to ask questions. If you don't feel like you are on a same team with your provider, see how you can partner with them. Because and and and if I start any, you know, Ruby um coaching or you know, when I was doing PRT or ESCM, I really try to emphasize like we're a team, you know, you are the expert on your family. I don't know your family, I don't know, you know, your value. I'm learning. And and I'm an expert on some of these behavioral principles, but we got to work together. Um, and so really trying to empower the family in that way, I feel like can make such a difference and and really you know would make lasting impacts too.

SPEAKER_00

Um and before we started recording, we took a side pivot and we talked about NSAR and understanding barriers to care. And I don't know if you want to talk about that or if this is something that is a potential barrier to care if parents not getting support to actually engage and support their child or not feeling confident or having high levels of stress so that they just can't, they're overwhelmed, they just can't do one more thing in the day because they're already busy. Is that something that came up as a potential barrier to care for some families? Oh, absolutely.

SPEAKER_02

And I think you know, the stress literature is so fascinating, right? Because we need a little bit of stress to to get us out the door, get us out of bed, right? So stress is good, but too much stress is bad, right? It can just be overwhelming. And and and then when we think about the supports for stress, we also think have to think about what the stressor is. Is it something I can change? Um, I love uh acceptance and commitment therapy or ACT has a great metaphor. Like, is the barrier, is the challenge like a picture that's bothering me? Well, I could just take that down versus I don't have a car, I can't get to the appointment. That's not something I can teach you a strategy, right? So I think there's also different levels of barriers that we have to think about how those match to different strategies or outcomes or supports. Um, and that's why I'm really like interested in this method for going about identifying the barriers to engagement, um, because I do hope to kind of parse apart, you know, what are those levels, um, even within an individual? Is it more like cognitive? Is it the thoughts you're having versus like I just don't feel like it? Um, or is it like behavioral of like, oh, I plan to do it, I set a time, I forgot. Um, or you know, like what what piece of it within the person, um, or you know, the social network. Do I just need my friend to be like, hey, we're doing this? And it's like, yeah, okay, we're doing it. Um, or is it more, yeah, more of those environmental factors of I'm working two jobs, I don't have time, or figuring out um and mapping those barriers um using there's this really cool framework called the intervention mapping framework. Okay. Um and it's like a six-step um process um really in-depth, but really cool because step one is a needs assessment, but the result of that makes this really cool product where you are trying to link what are the individual determinants, fancy words, you know, predictors, characteristics, and environmental characteristics, and then how do those map to behaviors that lead to you know health outcomes and then ultimately the impact of quality of life? And so it's like you build this cool model, and then you take all these potential barriers and you say, okay, which are most feasible to address and like could change. And so that's kind of getting back to the point of like there are some things that are hard to change and some things that are easier. So, how can we kind of map those to um a support?

SPEAKER_00

I feel like this is taking us back to your love of math and solution problem solving.

SPEAKER_02

I've never I have a I have an analytic brain, I have learned over time.

SPEAKER_00

A beautiful brain to have. I love it. I'm gonna link something for intervention mapping framework. I think that's fantastic. And I just learned something new. I've not heard of that. So thank you for sharing that with me. And I I go back to the barriers. I love how you can kind of categorize them or the concept of trying to categorize environmental within the person, right? Kind of cognitive. I think that really will help align and kind of is it finances, is it time? Is it funding? Is it uh everyone in my area is clinic based only. I don't have a car, I don't have buses in my rural area. I live in Iowa, buses in my rural area to get there. So I can't do that, I can't take a kid there. But if they would do an in-home visit, I could get support, but that provider doesn't, right? So that is environmental kind of logistical issues, or that parent who has, you know, multiple jobs, feeling overwhelmed, other kiddos who just feels like there's no more time to give in the day to then figure out how to support them without making them feel guilty that they're not doing enough, they're doing more than enough. Um, and kind of work through, like with Act, like you said, working through those cognitive kind of thought processes of you gotta help yourself to help your child, and sometimes it's harder for parents because that's more time they have to take and I know, I know to somewhere. Um, are there any specific categories, or was it kind of like environmental, um person-individual related, logistical?

SPEAKER_02

With anybody that's what I I'm learning right now. We're about to start some of the qualitative interviews in a in a bit. Um, but I it's making me think of another study that we're doing. Um, doing too many studies, but this one is this one's exciting. It's it's with a few different um people across the country, and it's it's taking that that step back. So, you know, recognizing annoyingly the way our system is set up is often you have to do an evaluation and get a diagnosis, and then that qualifies you for in support and intervention, which is so backwards to me um and frustrating. Yes, but it's it's starting with okay, even getting a diagnosis is like can be yep, two years. And so um we tried or we have um started, we've gave surveys to um autism specialists across the country, um PDF PCPs um in our sites. So we have people from Colorado, Utah, New York, and Texas, and then we're about to um send out the caregiver questionnaires um or surveys, um, and we're hoping to kind of triangulate and then map those barriers right across the systems, recognizing this is a process, and there's no one person that is to blame or you know that needs to change, but how do we address it as a system? Um and that is complicated, it's wild.

SPEAKER_00

That's a lot of moving, it's like checkers and chess at the same time.

SPEAKER_02

Uh yeah. And I think going back to my analytic brain, it's so fascinating because we're so grounded in the like, I just want to help. And I know this is a problem, and like, let's do this. And and I know it comes from a place of you know, goodwill and like desire to help. And when we do that, sometimes we're missing the opportunity to truly take a moment to say, do I really have a good grasp on the true challenge or barrier? Do I have the data to support it?

unknown

I know.

SPEAKER_00

Love that.

SPEAKER_02

Um, but then do I have the data to also show or measure over time that what we're doing is making a difference? Um, and so that's the piece that I think circle, like I'm also trying to do in my other roles as a clinician or informaticist or researcher, is like first even thinking about it from like a quality improvement perspective of like, do I have a good grasp on what the problem is? And then have I truly considered all the different options and maybe partnered with some, you know, community providers or parents or children, or you know, really um before I dive into a solution. Sometimes we don't have time for that, and that makes sense too. Um, but I think it can be really helpful in the long term.

SPEAKER_00

Yes, I think it's that, like you said, the big picture. Instead of kind of everything seems so compartmentalized. I gotta go to this provider to get a diagnosis and wait, I gotta go here to get the treatment and wait. If it's not a multidisciplinary clinic, I gotta go over here to get the speech or the OT. And then my PCP or my developmental PED is over here, and no one talks to one another, even though we send the release of information. And so no one talks to one another. And that is again overwhelming for a parent who has a binder of their child's treatment that they with them wherever they need to go, because it's in one place because nothing is stored electronically, right? It's just this universal template platform concept of easing the response effort for a parent to engage. Like it's all very organized, everyone can access it and see it. That's got to be a barrier that could be removed through your incredible work that you're gonna map out this thing for. Um, because that is a big barrier for families. I have to be a very organized parent, very data-driven. I carry that with me. I know a lot of parents don't love data, don't have time.

unknown

Right.

SPEAKER_02

Something I value, or know that they should. How helpful or not should, but like know that that would be helpful until it's you know yeah.

SPEAKER_00

So sometimes somebody open up that binder to show a particular doctor who says, Yeah, and they don't really seem to value it. And then it's like maybe a more understanding doctor, like they don't have the time to listen to your concerns. That might not be the best provider for you, but then we come into no one else has availability. So you just it don't throw a fit, right? It's the whole system, I think, is just so burdened. Um, and I love the thought of making this more cohesive for families to navigate confidently and comfortably because I don't have parents feel that way already, trying to understand what's going on with their kiddo and and feeling the feelings that they have as maybe being a first-time parent, maybe being a parent to multiple children in this one tracking a little bit differently on that trajection and not knowing how to handle that. So I feel like even going to providers for some families culturally and sharing that discomfort or that unsureness is intimidating and hard for them.

SPEAKER_01

Absolutely.

SPEAKER_00

Yeah. And so I love the thought of a system that can bring it all together so a family doesn't have to keep repeating that. I think that's a huge barrier for care for families, speaking for myself, just what I go through. Um, just trying to navigate a system that I happen to know the system from the other side as a provider. Now I'm learning. Um, so being able to do that. But I love the outcome measures that you keep talking about. Like, how do we really have quality improvement, quality assurance factors taking into play? And then I go back to the provider lens. Is the treatment dosage goals, intervention strategies making a meaningful difference? Does that matter for that family, not just the child? Yeah. And then what are the other options? If not, all going back to outcomes. Like we're trying to get that place of help, if you will. Yeah. So many exciting things. I'm gonna link all of these articles um that people can go find them and learn more about and then the bosque. Where would I link the bosque if I just googled it? Is that from I have I have some papers I can send you. Oh, that'd be incredible. That one I know about this much. Um, to look at that. How do you stay up to date with NDBI, Caregiver, all the goodness that you're doing, other than the incredible hats that you wear in the research that you're doing, which probably keeps you up to date?

SPEAKER_02

Yeah. Yeah, I was um, I was reflecting on this. Honestly, the best tool that I have right now, um, aside from you know, conferences and and colleagues and things like that. And I don't know if this has been talked about, but Google Google Scholar Alerts has that been talked about here.

SPEAKER_00

Oh, I will have to I wonder if one of our researchers talked about Google Scholar Alerts. Um, that sounds familiar to me. I don't know.

SPEAKER_02

Okay. Well, that is my primary go-to because I'm like doing so many different things. Like I feel like I I, you know, I don't want my NDBI to slip, um, but there's only so many hours in the day. And so I I do lean on Google Scholar Alerts and I like it because you can um build it for a variety of different ways. So you could say, I really like this one paper. I want it anytime an article cites that paper, send me an alert. Or it can be, I really like this author or this um researcher. Anytime they publish something new, send me an alert. So that's honestly, I've been following, you know, several different NDBI researchers, and I still get their um alerts. And it's like, oh, wow, this is so cool. Or, you know, okay, I don't have time right now, but I'll read it later.

SPEAKER_00

I'm gonna bookmark it. I love that. I didn't know that you could customize that. I do like get research notifications. Oh, yes. Oh, I but I know not everyone has research gate, so I might have to think about the Google Scholar. Um, because sometimes what I will find is I'll find a lot of local stuff, but I'm always looking for ESDM or NDBI International. I'm really looking at the reach of this incredible. Um, so I wonder if there's a way to kind of international, which don't typically come up in some of the journals that I might be looking in, or like you mentioned, conferences. I've really made it a goal. This year to branch out outside of the different types of conferences that are having these really important conversations, like at INSAR. That's one day on my list to get to. Dan, this has been so incredible. I have so many notes here that I got to summarize from so many incredible research studies that you have, from all of the hats that you're wearing. And I hope it was very informational for the listeners to hopefully have got a line of research or some different things with informatics, like just getting their wheels going. And I'm gonna link your website. So if they have information or ideas or grant money to give to you, they can just reach out and help us happen. Sounds wonderful. Oh my gosh, it's been so much fun having you on. Thank you again.

SPEAKER_02

Yes, thank you so much. I really enjoyed it.