Healthcare AI and Rare Disease Caregiving: Why Patient Advocates Deserve a Seat at the Table | Amanda Roser

Healthcare AI succeeds or fails at the connective tissue of care — Amanda Roser on AI strategy, rare disease caregiving, and why patient advocates belong at the table.

AI applications in healthcare succeed or fail at the connective tissue of care delivery, the caregivers, patient advocates, and family members who hold fragmented systems together. Amanda Roser, who has spent 5 years navigating her son's rare genetic disorder across endocrinology, genetics, metabolic medicine, and gastroenterology, joins Chris Hutchins to examine what responsible AI in healthcare requires when the actual users are families, not specialists.

What We Cover

• How rare disease caregivers become the de facto data stewards, record keepers, and medical translators the system requires but rarely recognizes
• Why interoperability failures create a "Groundhog Day" problem where patients retell their history at every appointment, and what AI could actually fix
• How Amanda trained an AI tool on her son's daily health patterns and lab history, and the clinical conversation that shifted in real time when she showed it to a physician
• The gap between what caregivers expect from healthcare systems and what systems actually deliver
• Why patient advocacy panels belong at every healthcare innovation conference

Key Takeaways

• AI in healthcare that ignores caregivers is not responsible AI. Every system decision about interoperability, documentation, and coordination lands on the family in the waiting room.
• Caregivers are the operational infrastructure the healthcare system depends on. Any AI strategy that does not account for this inherits the fragility the system already has.
• Rare disease care is the stress test for healthcare innovation. If your AI tool does not work for multi-system patients, it will not work for anyone.

Frameworks & Tools Mentioned

• Care coordination across multi-specialty clinical teams
• Healthcare interoperability standards (and where they fail)
• AI-assisted patient advocacy and symptom tracking
• Rare disease care models (glycogen storage disease type zero)
• Digital health tools for caregiver-physician communication

Timestamps

• 00:00 Amanda's story: an ER dismissal that became a turning point for caregiver advocacy
• 02:12 What caregivers expect vs. what the healthcare system actually delivers
• 05:18 Becoming the coordinator: when parents realize the system depends on them
• 10:12 The invisible operational burden families carry between appointments
• 13:30 Gaps in patient tracking, documentation, and clinical communication
• 16:21 Learning medical terminology as a non-clinical caregiver
• 21:10 Interoperability failures and the "Groundhog Day" problem
• 26:55 The emotional and physical toll of caregiving in a fragmented system
• 30:04 Two real scenarios where care coordination broke down
• 35:22 How Amanda uses AI to translate, analyze labs, and prepare for appointments
• 40:37 What healthcare systems should change first to recognize caregivers
• 43:29 The signal healthcare leaders are missing from patient advocates
• 48:42 Why patient advocacy panels belong at every healthcare conference

About Amanda Roser

Amanda Roser works at the intersection of healthcare innovation, emerging technology, and responsible transformation. Her career spans digital health, artificial intelligence, and strategic innovation, with a focus on helping healthcare leaders navigate practical realities of adopting new technologies while balancing trust, safety, and operational impact. She is the mother of a child with glycogen storage

Humanizing AI for Care.
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Transcript

Amanda Roser: 0:00

The ER dismissed him and said, "Nothing's wrong with him. He's fine. Just give him some Zofran, give him some sugar. He will be fine." And completely dismissed, didn't read the notes from the doctor. It was in that time that I realized I'm not just a mom and a marketing professional. I have a new job title. I'm now also a caretaker, and I am the records keeper. I've been able to utilize AI to help me communicate with them by taking their notes, having AI help me decipher them. I've trained up the AI tool to know what our days are like, what our healthy days are like, and what our unhealthy days are like. When I used this AI tool for those labs for that hospital visit, I plugged it in. The physician came in probably an hour or two later and I showed it to her. It gave her a different way of thinking. It gave her another option of a treatment that we could do.

Christopher Hutchins: 0:51

Today's guest works at the intersection of healthcare innovation, emerging technology, and responsible transformation. Amanda Roser has spent her career helping organizations understand not just what new technologies can do, but how they can be implemented in ways that create real value for patients, clinicians, and health systems. Amanda brings deep experience across digital health, artificial intelligence, and strategic innovation. Her work focuses on helping healthcare leaders navigate the practical realities of adopting new technologies while balancing trust, safety, and operational impact. She's been closely involved in conversations around how organizations evaluate emerging AI capabilities, how they manage risk, and how they translate technological possibility into meaningful improvements in care delivery. What makes Amanda's perspective especially valuable is that she approaches these questions from both a strategic and an operational lens. She understands that healthcare transformation does not happen through technology alone. It happens through governance, thoughtful implementation, and leadership that is willing to ask difficult questions about how innovation should be introduced in complex care environments. In a moment where artificial intelligence is moving faster than many institutions are prepared for, Amanda has been part of the effort to ensure that healthcare does not simply adopt new tools, but adopts them responsibly. Amanda, welcome to The Signal Room.

Amanda Roser: 2:12

Thank you so much, Chris. Thank you for welcoming me to the call.

Christopher Hutchins: 2:15

Well, it's my pleasure, and I've been looking forward to our conversation. We've had some really good insights we've been both seeing lately, and a lot of the topics that are being discussed are actually encouraging for a variety of reasons. But one of the reasons that we're talking today is because you've had some experiences that are actually identifying areas where we just need to do much, much better. And in particular, when we're dealing with concepts like informed consent, we kind of think about it in a checkbox kind of way, but we don't necessarily think about all the different perspectives that we have to account for. And this leads us to what your personal experience has been. You have a child who's had some very complicated care due to having some rare conditions. So I want to talk about that. And I'm really excited for the audience to hear this perspective, particularly if you're out there and you're doing development and design. This is a conversation for you. So, Amanda, when your child first entered the healthcare system, what did you expect the experience to look like?

Amanda Roser: 3:21

Yeah. So first off, thank you so much for such a wonderful intro about my background, who I am, and also my experience within the healthcare system that I kind of just got thrown into, because just like anybody with any medical disorder, you're not planning for it. It's not part of your agenda. In my case, being a mom, my original thought was I would be going to the doctors for the colds that hit the household or the tummy bugs that hit. But our world became a little bit different back in 2021 when we experienced healthcare in a way I just never imagined. And so originally, when my son got his diagnosis back in 2021, I had so much trust in the healthcare system. I was naive in that process. I believed systems are in place for the people. But I quickly came to learn that systems are in place to work within silos, and it's not built to work within that complex medical space of a person. And so in my son's case, we have a multitude of physicians that we have seen over the years, and each physician works within their specialty, as they should. That is what they practice, that is what they know through and through. And that's how they truly become that deep expert within that area, whether it's endocrinology, neurology, or gastroenterology. Everybody has a specialty, just like myself. I have a specialty in marketing. I am not a medical professional. And so I put my trust in the healthcare system that they can do this for my son. They can make him healthy, they can balance him. But in actuality, it does take more than just the physicians. It takes the caretaker. And in my case, being the parent, I had to jump in, roll up my sleeves, and help manage where I can to make movement happen.

Christopher Hutchins: 5:18

Well, you've already framed something that I don't think most people think about. It's really the role that you're talking about. I think it's not something that is laid out as a purposeful exercise that you have to deal with in terms of taking ownership, like you just indicated, that the health system is expecting you to do. But I think that we have really done a poor job, honestly, of designing these very systems for workflows that reflect reality for both clinicians but also for patients. And I think both have been sadly not focused enough on when it came to the initial original designs that we're now living with. So at what point did you realize that you were becoming the coordinator of your son's care? Meaning, clearly you just stated that this is something that you've been focused on.

Amanda Roser: So it kind of became clear early on. We discovered something was going on with my son in 2021. It started with an ER visit. Something was off. And so we brought him to the hospital, just like any parent would do when something seems off. And you go through the beginning stages of them trying to understand him as a person. And then they start going through the questions of, "Well, what is going on? We can put the band-aid on and give him the D10 fluids that he needs because his glucose is low, but what's really going on?" Because a band-aid would only last so long. And it's in that time that the tests start to roll. Over time, within 2021, remember that this was back towards the COVID times. Things were running a little bit differently if you weren't in critical emergency needs. Things were a little bit slower, lab tests were slower back then to get results. And so they started to run genetic tests at that time to understand him a little bit more, because they realized this isn't your typical low glucose case. There's something else going on. And they ran genetic panels in that time frame. And months go by, we finally get results back from the endocrinologist who called us at 6: 6:14

45 at night. I will never forget that time frame and never have received a phone call from a doctor at that time, but she took the time because it was real. And she explained to us what the test said. From there, we were connected with the geneticists, and this is all up in Boston. We're connected with a geneticist up there. That was our second doctor. We had an endocrinologist, then a geneticist, and then we were introduced to a nutritionist, and then we were introduced to a metabolic specialist. And so the list began to grow at that point. And in that time, I realized I'm not just a mom and a marketing professional. I have a new job title. I'm now also a caretaker and I am the record keeper. I am the person who is managing. I'm my son's nurse. I am the person who has to provide the symptoms of the day-to-day to a multitude of physicians. And I'm the person that has to keep all of these systems in order and in place to where the physicians can all properly care for my son. And I have to be that person who's pushing to get the physicians to speak to each other. And it was in that time, when I had to start pushing for people to speak to each other, that I realized there's a gap in the system. While these people are incredibly smart, there's a gap within the system of communication.

Christopher Hutchins: 9:02

Well, and it's evident from just what you shared in these last few seconds. You had to become a translator. I mean, it's not normal for people to talk about having to have genetic panels, for example. It's a lot of stuff. A lot of what you're talking about is a language that you had to learn in order to be able to take care of your son and advocate for him. That's extraordinary. And I'm really glad that your family has you there. And your son in particular has a mom who's figuring it out, ready to roll up her sleeves and dig in and figure out what she has to. That's remarkable. But at the same time, I hope that we'll really learn from your experience, and this conversation that we're having will be helpful to a lot of people. If you're out there doing design of systems, I hope you really take a good listen to what Amanda's going to talk to us about today. So we'll step over and assume, okay, yes, this is an official thing that you've got to deal with as a caregiver. What does this coordination work actually look like week to week? I don't know that people think about this coordination activity from the perspective of a caregiver.

Amanda Roser: 10:12

Yeah, so there's a lot of behind the scenes that happens, as there's a lot of behind the scenes that happens within all of our physicians' offices and their clinics. I recognize that through and through. But the day-to-day, it's a whole other level, because like I mentioned just a minute ago, we're tracking so much information. One, we're tracking because we need to be able to manage and respond in the moment, in the day-to-day. But two, I need to be thorough, especially in those early days in the discovery stage of what's going on. I need to be very thorough with our tracking to allow for the physicians to have a better understanding of what's going on. That's another area where over time I've been catching lots of gaps within the systems. Being able to provide what's happening day to day, from my son's glucose dropping because, let's say, he was incredibly active on the playground. The physician's not going to see that. Or let's say his ketones are going up because he's got a stomach bug, and what's going on with him with the genetic test that came through of glycogen storage disease, which creates high ketones and low glucose. And so I have to monitor whether it's food that's causing it, is it activity at home, is it a bug that's hit him, does he have a cold or flu. I'm tracking all those details to where over time we can have a full understanding of how his metabolic system works, because every person's metabolic system works differently. I have a twin brother, and just because I have a twin doesn't mean our bodies work the exact same way. And just like my son, he has this genetic disorder, and there's somebody else that has a genetic disorder with that same diagnosis, but their bodies will never work the same. They will act differently in different activities and different scenarios of life. And so I have to be that record keeper of that information and provide that to the physicians. Now, this is where the gap is in that providing of information. Everybody tracks information differently. And that's how data and information can get missed and diagnoses can become slower. Because while I'm tracking what I feel is right and needed to track, I'm tracking it in a spreadsheet. And it's great, that works for me, the doctor's able to get the insights, but it's not going to help the doctor understand through and through because there's not enough specific data in that kind of tracking. So if there is a tracking system for any child or adult that has a genetic disorder or something that has just happened over time, there needs to be a better system in place for me to be able to easily provide that information. Just like doctors order labs, if there's a specific list and way they're getting that insight, there should be something for the patient as well to be able to properly provide the insights beyond your typical temperature and vitals. A more detailed, thorough tracking system. There are so many apps these days that can be implemented. And we use Epic within the children's hospital system, which is a great system, but I feel like it's an underutilized system from a patient's perspective.

Christopher Hutchins: 13:30

This is becoming clearer to me as you're talking. We're talking about a really significant gap. And you're the one that's discovering where these gaps are. This is something that we have to do better. There's no question about it. We just have to do this. Now you've talked about a lot of stuff that goes on outside of the medical record, your own documentation and figuring out what it is that you actually have to track. What are some things that might surprise healthcare leaders about how much operational work families are doing?

Amanda Roser: 14:01

What might surprise them is probably one, the amount of tracking that I just went through with the spreadsheets. But every family is doing something different in order to be able to manage their day-to-day. And that makes sense. I think of my own team within my marketing department. I have some teammates who are going to be using old school notebooks to keep things in order. I have other ones that are using spreadsheets, and then I have other ones that are using project management systems. While I always just really push people to work within a similar system to where information can be easily shared, they're still going to revert to what is natural to them. And so with patients, I think that's what's happening where people are reverting to what is natural to them, whether it's a spreadsheet, a notebook, whether maybe it's an app that's helping them keep up with information. But there are different ways that patients are tracking information. And I don't think physicians realize those different ways. If they did realize, they would be able to help guide to where information can better get to the physician to make better, faster decisions. Not necessarily better decisions because their decisions are great, but faster decisions, because anything with health, time is of the essence. You can't wait weeks and months and years to get answers because I'm tracking differently than you work from a day-to-day to be able to make your discoveries. Creating more efficiencies with processes for patients will help support not just the patient, but the physician as well.

Christopher Hutchins: 15:37

I don't think that we can overstate the significance of what you're talking about here. You've actually done some writing recently, talking about how rare disease caregivers have to learn what is almost like a brand new language in order to advocate effectively. I think there's no doubt. I remember learning very early on in my own career basic medical terminology, but I was working in a health system. As a parent, it's not obvious that you have to go ahead and start learning how to translate the things that you now understand better than most. Talk about what that learning curve looks like. I know it cannot be a comfortable place as you're just starting out. What does that look like?

Amanda Roser: 16:21

Yeah. No, that's a really great question. I feel like it's not a question that is ever really addressed with people that do work in the healthcare system. I recognize the reason for that. I think of myself, I'm in marketing, and I can speak the marketing world language through and through. But if I go talk to a nurse, it's not all going to click. It makes sense of what I'm saying. So I recognize that there is going to be a learning curve. But I think especially at the beginning, in my son's case with the genetic disorder that came in, there wasn't much information on it. There was one clinical publication or clinical journal that was out there. I felt like I was going back to high school biology class and relearning things that were even foreign to me back in high school. There were words and acronyms and diagrams that were just way beyond my knowledge set or my interest at the time, but I couldn't let that be the reason I stopped absorbing the information because this was and is our reality at the end of the day.

Christopher Hutchins: 17:25

And so the learning, it's not just a grade you're going for here. The stakes are much higher.

Amanda Roser: 17:32

Yeah, I'm not trying to impress any teacher here. I am trying to help my son. My ultimate goal in life as his mother is for him to grow and thrive and live a healthy, happy life. So he's six years old now. I want him to be running around with his friends and not have to worry about any major medical things or worry about going to the hospital again. So back then, gosh, five years ago, it's just wild to think it's been that long. It feels like yesterday and it feels like a lifetime ago. But I had to pick up that medical clinical journal and I read it, whether I knew what it said or not. And over time, I did a lot of Googling. What does this word mean? What is this term? Tell me what this acronym means. What does this mean for a two-year-old boy? Lots of Googling. Lots of just trying to find more papers to help me. And the learning curve was real. But to overcome that learning curve, I'm a writer. I've always been. I've been writing since I was a kid. And what I would do is I wrote blogs in the beginning to help me process what I'm reading, to help me decipher. And over time, it evolved from a blog to writing a caretaker guide to being very vocal on LinkedIn and sharing more about our journey. Sharing about our journey on LinkedIn, Instagram, and Facebook has helped me understand the language.

Christopher Hutchins: 18:53

How does this kind of affect people in a situation where maybe a family hasn't figured out the medical terminology or isn't even sure what to do about it? How does that impact the communication, in your experience, between you as a caregiver and the clinicians? I mean, are there moments that communication was problematic? How does it impact it? Do you feel like sometimes there's a miss and what you're saying isn't being heard?

Amanda Roser: 19:19

So I think, again, thinking more in the rare disease space, what we deal with day to day, it's in the rare disease area, glycogen storage disease type zero. And so back then, what would have been very helpful to help with that learning curve for myself or any future patients of a rare disease is for the physicians to encourage the parents to get involved. Jump in, find the Facebook groups out there. And physicians are learning more and more that these Facebook groups are very powerful groups. Especially in the rare disease community, the Facebook groups are pretty small. And so it's easy to make connections and have people that have gone before you, who have been walking this road for five, ten, twenty years, help you understand this world and understand that while in the moment, in the thick of it all, it feels incredibly scary. You feel scared, you feel like you're the only one, you feel like you're the only one that needs to go back to high school biology to help learn these terms. But the reality is you're not the only one. There's so many people out there. Tapping into the Facebook communities, I think, is a valuable tool that can support parents. And then from there, there are organizations out there that I didn't realize existed in the beginning. It took me a few years to find these organizations, but there are organizations out there that are helping patients. So for us, there's the Ketotic Hypoglycemia International group. And that organization has been a wealth of knowledge for me, especially in the early days. They've been able to connect me with the right people to understand what this all means, and then to understand that this isn't as scary. It is scary. I'm not going to diminish that, but it's not as overwhelming as it feels when you're in the thick of it.

Christopher Hutchins: 21:10

This kind of stuff flies under the radar so much when we talk about things like interoperability. I know it's a type of conversation anytime I have a conversation with a physician, but I think we're talking about an aspect of that that's just not accounted for. So one of the challenges I hear, and I think you mentioned this specifically to me, is that there's oftentimes you go into an appointment and it's Groundhog Day. You've got to explain everything from the beginning. What's the whole story? Just start the conversation with a new person that's involved in the care team. Why do you think that happens so frequently?

Amanda Roser: 21:47

So, it's funny you say that because I was actually talking to a family member. She has twins that have a rare disorder as well. And we were both venting to each other about having to retell the story. And that's a pretty common, exhausting feeling among many caretakers, retelling the story. Because you have to retell the story from the beginning. We've had physicians who will, my son is six years old, I'll have a physician ask me a question about when he took his first step. When was his first food? It's been six years and I feel like I've lived 60 years with the amount of medical things that we've lived through. And so I have to retell those stories from sometimes those very minute details all the way to the hospital visits or the ER visits. And we've had a multitude of ER visits. I'll get asked about labs that he had done five years ago or four years ago or last year. I have to remember and recall all of this. And from a parent's point of view, from a caretaker of an adult person as well, anybody, it is exhausting. And you're going to miss information. I am not perfect. I am not a robot. I do not have photographic memory. I will miss information. It's the reality of retelling stories over and over. And while it's not intentional that I'm missing a piece to the story, it's another gap within the system of there not being a place to have, let's call it an executive summary of somebody's health. There's no place for an executive summary for you, the new physician, to jump on the portal and just see that synopsis of my son over the last five years. And I'm sure you're the same way, Chris. Executive summaries can be adjusted over time. There should be a place within every portal, especially for somebody of any medical complexity or rare disease. There should be a place where there is that summary. We don't need to necessarily house a 20-page document or a novel of somebody's story. There should be some kind of placement of an executive summary that provides that synopsis of what's been going on over the last five years, to where somebody can quickly click that, read it, get a high-level understanding, and then deep dive with whatever that moment scenario needs.

Christopher Hutchins: 24:20

So what are some of the types of things that get lost in between specialties, even when you're having to see so many clinicians over time? It just seems like there's got to be some things that are lacking in terms of what is captured in those conversations in order for it to be retained. I don't know if it's a structural issue, workflow issue, but what's your sense of what that problem really is? What I'm thinking is that there's clearly something missing because you're having to repeat the same things over and over again. What are some of the things that are coming up where you actually have to go through and rehash it because there's clearly no indication that's been passed from one physician to another, the specifics that you recited the very last time you were there? Is it that they just don't have a place to capture it, or is it simply that there's just so much that you just possibly can't remember everything?

Amanda Roser: 25:21

Yeah. I think it's a bit of both, in all honesty. There is, to my knowledge, I haven't seen anything within a system. And I'm just going to use Epic because everybody knows the Epic system and it's in a lot of hospital systems as well. But there's a lot of areas within that portal, and there's a lot of information that it starts to gather over time. And so I think what's missing is that there needs to be a way for them to easily aggregate some of the information that's being provided to create, I'm going to keep it simple in business terms because I work in B2B all the time, but there needs to be summaries. There needs to be, just like I have to do a one-page summary on any project that I do for a client, there should be something like that for the patients, to where information isn't missed. I think information can be missed from whether it's one physician ordering a lab from Quest Diagnostics and the other physician ordered labs internally within their clinic. And so sometimes information doesn't fully get across because there's other areas that you have to click into, or maybe the physician received it via an email document or a fax, and the information just doesn't get fully into the system. And so I think it's a bit of both. Information is getting missed by handover, by different systems being used, and just everybody documents a little bit differently.

Christopher Hutchins: 26:55

This is, I don't even know how to describe it. I just can't help but feel like this is just an additional strain on a family who's obviously already dealing with some things that are incredibly difficult. I mean, I don't mean to make you think about this stuff any more than necessary, but talk about what the impact is of having to deal with that repetition. I mean, when you're already dealing with things under stress, you're a mom, now you've got to wear this other hat. How does this really impact you as a caregiver?

Amanda Roser: 27:30

Yeah. So there's actually a lot of studies and information that's coming out from a caretaker's point of view. There's an emotional toll that comes into play when you are a caretaker, and then there's that heaviness and that burden where you're having to manage every little entity. And I wouldn't change it for the world because what I'm doing from the day-to-day, I see my son thriving. And that means the absolute world. Before my son got a G-tube gastrobutton, my husband and I were constantly waking up every three to four hours checking his glucose. His Dexcom was going off in the night. Checking, why is that happening? Giving him his nighttime medicine to help with his glucose. So the exhaustion that naturally happens with certain complexities of medicine, it's real. So take that layer right there and then add the layer of the exhaustion of calling the insurance companies to make sure things are being covered and a doctor is in network. To doing the research about a new medicine that the doctor wants to start, or maybe a new test, a fasting study, or new labs that need to be run. Doing the research to understand what the doctor is talking about. The heaviness of being able to juggle all of it. There's a time schedule that my son has to be on. And the exhaustion of keeping up with that, making sure doses aren't missed. It's a lot to juggle from a caretaker point of view. And the heaviness and emotional weight, it can take a toll on a caretaker over time.

Christopher Hutchins: 29:07

Yeah, and you know, listening to this, it's clear that families are having to take on a role. It's not necessarily recognized and sanctioned as part of a care team, but it really is. We have to think about it differently for sure. I mean, you're talking about having to keep track of so many things in between appointments. What happens when the coordination breaks down? I mean, that's the reality, even under normal circumstances there are challenges with that, with a care team that's working inside of a health system. But this is a whole different level that you're talking about. What are some of the things that you've seen really kind of go sideways because this is not really a process that's understood or well coordinated from both sides? You shouldn't have to know how to do all of this stuff. And there's so much of it that maybe isn't even understood by the care team.

Amanda Roser: 30:04

Yeah, really great question. So I actually have two great scenarios of instances where I saw a major breakdown where I had to really roll up my sleeves to ensure that my son wasn't affected by that breakdown. So the earlier instance with my son's genetic disorder, it is on the rare side. The way his genetic disorder presents is a little bit complex and different than the average. And so we had a hospital visit, and we were out of town on vacation. We were not near our typical hospital. We brought him to the ER and the ER dismissed him and said, "Nothing's wrong with him. He's fine. Just give him some Zofran, give him some sugar. He will be fine." And completely dismissed. Didn't read the notes from the doctor from our other location, our main hospital system, our main physicians. The doctor did not read that information. He just knows what low glucose means. He treated him for that, he treated him for a stomach bug, and he sent us on our merry way. And what ended up happening is, I think it was later that day, it turned into an even bigger emergency where we couldn't keep my son awake. And so we brought him to a different hospital who took the time to read his chart, who actually reached out to our doctors up in Boston. The doctors and residents, it was a mixture of people, they took the time to read about my child, even though they never had cared for someone like my son. They took the time. And they didn't just go off of typical clinical, in-the-moment ER, let's-put-a-band-aid-on-it care. They took the time to understand what truly is happening. They did not dismiss my son, and he got the proper care he needed to balance him. I think it was three days later, my son was running in the sprinklers with the other kids. He was totally fine. But if it wasn't for that, it could have been a different story. And I think that's one break in the system. It's knowledge and understanding that we need to think one step further than just putting that band-aid on that patient that comes through those ER doors. So that's one scenario for you. The other scenario is more on the administrative side, where there's a breakdown in understanding. I was trying to move my son from one hospital to another hospital. And because we had a few doctors within one hospital system, I was trying to bring everybody together because working with two different systems is exhausting, making sure information's getting across. And so I thought I was doing the right thing, moving them from one hospital to the other hospital for regular clinical physician care. Well, the way I was going about it wasn't the right way. And so it took us three weeks to actually get movement to get my son transferred. Because while I was calling it a transfer of care, they were calling it a second opinion. And when you're looking for a second opinion, it's a different process with different levels of priority for when you get that next appointment. And so because we were speaking two different formats of words to be able to get my son with that clinic, with our endocrinologists, it took a longer amount of time. And it did take me becoming vocal on LinkedIn for people to hear me and see me. And that's a break in the system, because I do marketing every day. I don't know the administrative system. I don't know the processes. And then once we were in, the doctor told me what I should have done to get him moved. I should have just reached out to our endocrinologist, and the endocrinologist at that clinic could have done the move for us versus me doing this other way that seemed like the right way but wasn't. So there's a break in the understanding for the patient to understand processes of administrative systems.

Christopher Hutchins: 34:17

Yes, and clearly there's a gap in our understanding of really how to coordinate things effectively. We think about interoperability a bit like a checkbox, and sadly most clinicians understand that it's really an obstacle. They're very frustrated by it. And at the same time, on the other side of it, you're very frustrated by it. So the clinician and the patient are not being well served by these disparate systems and the fact that we're not doing the integrations to make sure that you have the information that you need when you need it. This is a gap I've not heard explained the way that you're explaining it. I think it needs to be heard. We do have to do better. So I guess it's interesting that one of the ways that you and I connected to begin with was talking about what role AI can play. You've mentioned it's helped you more than you expected. Maybe talk a little bit about how you're actually using tools like that to prepare for your appointments or to communicate with your physicians.

Amanda Roser: 35:22

AI has really, I feel like it's really evolving the way that parents and caretakers are able to communicate with physicians and clinicians, because I'm not an expert. I do not have an MD, and I have no science background. And so speaking their language has been difficult over the years and has been time consuming. There are so many late nights that I spend till 1 a.m. trying to get the right way to speak to the doctor, to have them think a little differently or think outside the box when it comes to care. And so I've been able to utilize AI to help me communicate with them by taking their notes and having AI help me decipher them. Taking labs, having AI help me decipher through that as well. And one of the unique things that I have within my AI tool that I'm using, I also have within there our day-to-day. I have what the symptoms that we see that the doctors don't see. I have information in there about what the day-to-day looks like for my son, what the labs look like from what we just had yesterday, but I also have in there what the labs looked like four years ago. I'm asking it to provide information that helps me understand what the doctors are doing, but I'm also having it help the doctors understand where I'm coming from and how I want to get the right care and movement for my son. To where he's not put into a box like the kid next to him. He's his own box. And we need to open that box to be able to think a little differently for the day-to-day care.

Christopher Hutchins: 37:05

It just seems like there's layer after layer of additional things that are just being put on your shoulders as a caregiver. This is mind-blowing to me. Are there things that you're using the capabilities for that you think would be surprising to clinicians at this point?

Amanda Roser: 37:25

So my son was actually in the hospital back in August. It was about a five-day hospital stay. And the doctors were really trying to figure out what was going on because it was different from the typical reason we were there. And so what I ended up doing was, it was taking forever to see a physician because they were packed that day. I think there was some kind of cold or bug that was hitting the hospital pretty hard. And I was getting the labs. The labs were coming to me through the portal. So I saw everything that was coming through. And what I was doing was I was taking those labs, I was putting them into the AI that I've already trained up over the last couple of years. I've trained up the AI tool to know what our days are like, what our healthy days are like, and what our unhealthy days are like. And so I was able to take those labs and plug them into my AI tool to have it help me, one, understand what's going on. Two, I would ask it, "Think outside of the box on other things that could be going on." I would ask it for things like, "What are some Western medicine approaches to helping? What are some holistic ways of approaching it?" I truly take it to go incredibly beyond the box, because we can sit here and think like we do for every other person, but everybody is different. I can't stress that enough. Every human is different. And I'm so grateful for one of our physicians who thinks just like we do. He's actually our endocrinologist, Dr. Paul Thornton. He has been a gift to us when it comes to day-to-day care, and he thinks outside of the box with us. And so when I used this AI tool for those labs for that hospital visit, I plugged it in. The physician came in probably an hour or two later and I showed it to her. Well, I first heard what her thoughts were. After that, I said, "Can you take a look at what this AI just told me?" She read through the entire thing. She was impressed. She was incredibly impressed. Now, a lot of what it was saying was very similar to her diagnosis as well. But there were some other additional supports that it suggested to think about and to try, because AI always says, "I'm not a healthcare professional. I'm not a doctor. I can't tell you to do this." So I respect that and appreciate that little note is there. But it gave her a different way of thinking. It gave her another option of a treatment that we could do. And I think her surprise really opened my personal eyes to the realization that I don't think physicians know that patients are using it in this way. And I think the physicians that recognize that patients are using it in this way and don't dismiss it, and use it as a supportive tool in their diagnosis, gosh, we can move mountains in time. We can cut time in half and move mountains for people's health by utilizing a tool that can move at lightning speed to support the doctors who have been studying and practicing medicine for years.

Christopher Hutchins: 40:37

Right. Yeah. I remember seeing different scenarios years ago when I was actually working inside of a hospital. And people at that point in time frequently looked like they were carrying the weight of the world on their shoulders. And they didn't have any of the things that you've been talking about. But now, even with all of this, there's just an additional level of weight that you have to carry because of these things that you have to be aware of. And I'm glad the technology is catching up. But at the same time, I don't want us to be continuing business as usual and leaning on this stuff as a crutch. I think there are some things that need to be changed in terms of how we think about this. So talk about kind of how things really ought to be designed around the realities. If healthcare systems truly recognize caregivers as part of a care team, which you've talked a little bit about, what would you change first?

Amanda Roser: 41:36

That's a really great question and a really great point as well, because while in the earlier days, I did not feel like I was the right supportive team member for that position. In the early days, I was naive about healthcare in general. And over time, especially being a mom to a child with a genetic disorder who has some complex needs, I've become an expert in my child. I joke sometimes that I have a medical degree. My medical degree is in my son. I have a mom medical degree. And while I can't talk to you about heart disease, I can't talk to you about broken bones or neurological problems, I can talk to you through and through about one very specific thing, and that is my son's health. I can talk through and through about ketotic hypoglycemia and how his liver works. And so over time, I have become an expert. And I think one of my messages to clinicians and healthcare professionals is that parents, as well as caretakers, they have that operational side because we see the day-to-day. We go beyond the clinical moment. We see the day-to-day of what's going on with that patient. And so our seat at the table should be seen and valued just as much as the physician who has years of practice in healthcare. While I am never going to say my knowledge is more than a physician, because goodness gracious, their knowledge set in medicine, in Latin even, to understand all of these very complex medical terms, they are the true experts. But experts can only go so far if they don't have a sidekick. And parents and patient advocates can be that sidekick in that specific patient's medical journey.

Christopher Hutchins: 43:29

Yeah, I think this is an important thing for us to really be focused on and make sure our healthcare system leaders and physicians are really hearing this perspective. You've been inside the healthcare system and navigating it in a way most people only see from the outside. If leaders who are really responsible for designing healthcare, particularly during this transformational period that we're in, if they truly listen to caregivers, what signal would they hear that today is really missing in the system?

Amanda Roser: 44:01

Families, patients, we're living in a system. But we're not just living in a system, we're operating within it every day. And that really needs to be recognized, because when you let the operator provide you with insights and guidance on what's going on, actual change can happen. We're able to see where the gaps are because we're not in the day-to-day of your business. We're in the day-to-day of where the end user is. We are your end user. And so being open and receptive to getting guidance and insights from a different point of view, it can make change within your system. And it can help the next patient that comes in who has no clue about the healthcare system or has no clue about a genetic disorder.

Christopher Hutchins: 45:10

Amazing. This conversation for me has been very eye-opening, and I know it maybe seems like I'm a little bit not feeling great about the situation because of the way it's impacted your family. And I'm sure it impacts other caregivers. At the same time, I'm encouraged in what I'm hearing from you. And I think it's a very important thing that you're getting out there and talking about this. It's so important that people hear from you and what your experience is. This advocacy that you're talking about, every patient deserves to have that. And we are really good at building technologies, but there are a lot of things that we forget about. And what it really comes down to is we're talking about human beings at the end of the day. All of this stuff is about the relationships between people. Whether it's a family member or it's you and your clinician, or however you want to think about it, everything that we're doing needs to be wrapping around everything to do with care. And we've got to do a much better job. And I am excited about what can be done and where we can go from here. And I sincerely appreciate you reaching out to me. We've had some really good conversations, and I'm hoping we can have some more. I'll be looking for some opportunities where maybe we can create a vehicle that allows you to really talk to some people who are in the throes of designing and planning, because this really needs to be something we think about. The care team does include family members and includes the caregivers, especially in scenarios where people are not in a position to be able to handle everything all by themselves. I was talking to a clinician earlier, and just the whole idea of informed consent when you're talking about technologies. What about in emergency services, when a patient's not able to give consent? That's a gap we have to think about, which is not top of mind in every specialty, but it is in an emergency situation. The activities that have to be coordinated between a caregiver, a mom like yourself, and the clinicians who are taking care of your son, these are things that we just need to make sure that we're thinking about as we design. We're not going to get it right if we wait to think about it after the fact. We have a probably very narrow window to get some things right when it comes to how we're implementing these AI capabilities from a foundational level. But we've been going at a very, very rapid pace. And I know people have been worried about it. There have been some voices that said we should slow down. Unfortunately, I don't know that that's going to be the case, which just means that people like you and I, we've got to tag team and really try to push these conversations forward to make sure that the patient and the providers are not the last ones we think about when it comes to what we're designing for. They've got to be first. And again, amazing. And I respect so much what you've done thus far. And I think you can count on me to continue to be supportive in any way I possibly can. And I can't thank you enough for taking the time to spend with me today and for this conversation. And I certainly look forward to more conversations in the future, and not just the talking but the actual delivery of some results. I think we can have an influence, but we've got to tag team and make sure that people are listening.

Amanda Roser: 48:42

Well, I appreciate so much of your time and inviting me to your podcast. I think there's so much opportunity for patient advocates to have a seat at the table. Patient advocates are very much an underutilized tool within the healthcare system. And I'm starting to see a lot more movement. I saw a conference that incorporated a patient advocacy panel, which I thought was such a unique thing because physicians got to hear from a different point of view, a different perspective. And so I truly believe the more we open up the doors to that group, change can move, because the patients are the end user of the healthcare system. And we want to make sure that the healthcare system is built for the end user.

Christopher Hutchins: 49:28

Absolutely. That's the whole point. Amanda, thank you so much. It's been awesome to have you on the show, and I can't wait to have you back because I'm pretty sure there's going to be advancements going on. I'll be looking forward to hearing updates on how your son is doing as well. He's fortunate to have a great mom and a great family around him. We'll pray for his continued recovery and really look forward to hearing the good things as the days progress.

Amanda Roser: 49:59

Thank you so much. Appreciate that, and I look forward to future conversations as well. I think we have a lot more to talk about. Thank you so much.

Christopher Hutchins: 50:06

That's it for this episode of The Signal Room. If today's conversation sparks something in you, an idea, a challenge, or a perspective worth amplifying, I'd love to hear from you. Message me on LinkedIn or visit SignalRoomPodcast.com to explore being a guest on an upcoming episode. Until next time, stay tuned, stay curious, and stay human.