When You Are Both the Expert and the Patient: Care, Chronic Illness, and the AI Relationship

This transcript was generated automatically and may contain errors.

Melissa Gilkes-Smith: There are two ways to understand what it feels like to be a patient. You can study it, read the research, analyze the data, build the frameworks, that knowledge is real and it matters. Or you can live it, navigate the calls that don’t get returned, explain your history for the fourth time in a month, and carry the weight of coordinating your own care across systems that were never designed to talk to each other. My guest today has done both for more than 15 years simultaneously. What she’s learned from that and what she has built from it is what this conversation is about. I’m Melissa Jilk Smith. This is Touch Points, Moments That Matter. Let’s get into it. My guest today is Meredith Mengold, a certified patient experience professional who has navigated healthcare from both sides of the system for more than 15 years, as a care-experienced strategist working across hospitals, advocacy, and digital health, and as a patient living with multiple chronic conditions.

Through Empower Health Strategies, she helps innovators and care teams better understand the human, relational, and operational factors shaping a person’s health journey and uses that context to help create care solutions designed around how care actually unfolds for the people receiving and delivering it. She’s also currently fascinated personally and professionally by how AI is impacting patient-provider relationships, communication, and trust. Meredith, welcome to Touch Points.

Meredith Mangold: Hi, Melissa. Thank you so much for having me and that uh beautiful introduction. I could not have said it better myself. Thank you so much.

Melissa Gilkes-Smith: Absolutely. We’ve just kind of been navigating and trying to figure out how to have this conversation for like over a month now, I think.

Meredith Mangold: Yeah. Yeah. Yeah. I’m so excited to finally talk to you. I feel like there’s so much that we think about in a similar way, coming from different perspectives. And the part that I love conveying to healthcare stakeholders I work with is how the lived experience component of healthcare directly impacts the operational side, which you are a whiz at. So I’m really interested to see how our conversation unfolds and what new insights we can uh hopefully create for listeners.

Melissa Gilkes-Smith: I appreciate that. Yeah, I think that if you were to get like a group of patient experienced strategists on a call like this, like we could just like talk for hours. It should be like never ending, right? Yep.

Meredith Mangold: Been there, been there. It happened last week twice. We’re like, okay, we should get to the professional part of this call. Um, but yeah, it’s uh I I love having those conversations because it feels like we kind of know a secret that a lot of the industry doesn’t know, but also there’s the feeling of like why why don’t they know? This seems so obvious, both for like from a human perspective, but also operationally, practically, logistically. So um I look forward to asking you some questions too, to see what your experience has been uh working with clinicians and what they see as important for their practice and their business ROI and and all of that. So I’m really excited to uh get into it.

Melissa Gilkes-Smith: Sounds good. So let’s uh let’s like jump in and just dive into this, the meat of this conversation. So you’re a care experience strategist with experience navigating complex chronic illness. What came first for you? The personal experience or the professional work?

Meredith Mangold: So the personal experience came first, totally out of nowhere. But I do think that the details do really matter in both my personal life and how that’s impacted my professional trajectory. But uh relatively healthy childhood, except I got chronic migraines from my dad, thanks, dad, and uh terrible allergies. I was the nerd kid who stayed inside in the library for recess because my allergies were so bad. But aside from that, no, no real problems. I uh was born at a teaching hospital, actually at um GW, George Washington, here in DC. And since it was a teaching hospital, they ran a whole panel of uh of labs, also because I was two months premature. And so they found out that I had a genetic condition called alpha one antitrypsin deficiency, which at the time was just kind of becoming known.

And that’s something that they follow you for in childhood to see if it impacts your liver and your lungs. And luckily, I was followed by a specialist and I was fine. My liver function levels are always a little high, but thankfully uh that didn’t really, no problems manifested in my childhood, aside from having to be careful about what kind of uh medications I took. So everything was fine up until my sophomore year at Georgetown. I was studying for exams, and then out of nowhere, I started having to run to the bathroom. There was blood in the toilet, and I realized, wow, this is something’s going on. But at the same time, I have exams to study for. Like nobody has time for this. And then it got so bad just over the course of really two, three days, that I said, okay, I need to go to my uh primary care office.

And I went and they said, you need to go to the ER right now. And so I presented at the ED at Suburban Hospital here in DC. And they said, Oh, you need to go to Georgetown Hospital because we did a CT and there is all kinds of inflammation. You are on the verge of sepsis, and they have much better um GI and kind of uh intensive care there. So went to Georgetown in an ambulance, and that’s kind of where the world goes black. But I know that I was in the ICU, and then they found out that I had severe ulcerative colitis through a emergency colonoscopy. That’s an uh immune-mediated disease where my immune system attacked my large intestine. And so the goal was to try and suppress my immune system, get it to stop attacking my large intestine and help and uh preventing me from going septic.

And ultimately, thankfully, due to out-of-the-box thinking from one of the attendings, they were able to get things under control. And so that began my long hospital, hospitalization at Georgetown Hospital for about two months. And so that was really my kind of full immersion in our healthcare system and seeing how all the different stakeholders interacted and the places where there was a lot of friction between, you know, patients, caregivers, staff, and just all the different people and all the different processes that are involved in patient care, especially in such an acute setting like I was in. So that was when my whole life changed. I think of kind of Meredith 1.0 and Meredith 2.0. Uh becoming Meredith 2.

0 was really hard. I wish I would not wish it on anyone, but it’s brought me to where I am now. And I am just so thankful, grateful in a weird way that I have these experiences to share with fellow patients and also industry people so that they can understand how to do their jobs more effectively and empathetically.

Melissa Gilkes-Smith: Wow. You had a lot going on all at once. I mean, being a college student at Georgetown in the middle of tests, in the middle of exams is a whole lot. But then to, you know, pile all that on top of it. If you were to think of like your experience, not of like the medical side, but your patient experience as we speak of it. Um what kind of stands out during your time at Georgetown, do you think?

Meredith Mangold: Well, that was my first major hospitalization. Then I was in and out of school, in and out of the hospital, several longer hospitalizations. So I have lots of hospitalizations to choose from and hospital hopped. But I would say in that first major hospitalization, so I was 20 years old, but because I had had a PEAS GI following me for the Alpha One, I was lucky enough to be put on the PEADS floor. So there was definitely more support for my parents. Luckily, I was I’m local. I grew up here. So when I was at Georgetown, my parents could be there with me. So I had that support. But so then it was a little complicated with, you know, who is giving consent. And, you know, doctors would come in and talk to my parents and they’d say, hi, I’m actually 20.

I’m the one who needs to sign the consent forms. So I think that the biggest thing that retrospectively I think was really significant is that we did not get the full picture of what was really going on in terms of I was led to believe that this was an acute situation, I would find the right medication, and or I would get the surgeries and I would be totally fine. I could return to my life. And so that kind of expectation setting was really difficult to find out a year and a half, two years later, after I tried all the meds and got the surgeries, that that was not the case. And so I think that I understand that it was an acute situation, and maybe they did not have the realization that was how significant that kind of education was to me.

But also they were just trying to keep me alive. And um we, my my mom was doing all this research while we were there. She is a lawyer, and the way that she can kind of gain some kind of control in her mind is researching. So I think that, you know, they took care of me, the doctors. I’m so thankful they saved my life, but the education piece was not there. And admit that was the first time I realized that patients and caregivers have to take on so much that you don’t realize until you’re until you’re in it.

Melissa Gilkes-Smith: So did you ever have a conversation with your mom about the caregiver experience?

Meredith Mangold: My mom is a very stoic person, and so she really was just in to kind of get things done, get us to the next spot, right? And so I am so thankful that she was there. I think that a lot of when she and my dad were, you know, really concerned or experiencing things that were other than okay, like what’s the plan? Let’s execute the plan was done out in the in the hallway and not in my room. And I I mean, I know for her that uh she she stayed with me the whole time. She stayed in a little cot in the hospital with me for two months and she stopped, she paused working at her law firm, and she’s uh like very much like prof strong professional, worked, takes great pride in in what she does, but I could see that this was she was really worried.

And I think that over the past two months, she was actually diagnosed with breast cancer, and it made me think about wow, this is what she was feeling like, and mom’s always the person who kind of steers the ship. And I thought, okay, I I kind of have to steer the ship now. And so that was kind of a real realization of wow, she kept things going. And that is a source of support that so many other patients don’t have. And so I know it was a lot on her, and I’m I’m just so thankful that I had that support.

Melissa Gilkes-Smith: So now you have something else to add, of course, is your is the caregiver experience. So you have the the patient experience and the patient experience. Right. And the caregiver experience. So going back to the communication part, the expectations part, um, I think you and I had this conversation briefly last week or the week before about how there was some miscommunication missteps during, I believe it was your mother’s journey recently. So looking at back at your experience as a patient and then your mother’s experience as a patient, it’s almost like nothing has changed. If these are two different organizations, but the biggest issue that we’re looking at right now is communication.

Meredith Mangold: I think so. That’s uh communication and uh coordination, which is in large part communication, is one of the most significant uh barriers to a good successful patient experience, but also good clinical outcomes. And I could talk about this forever because I have seen for myself how much that impacts care. And because I have had my own patient experience, I know at the points like where in the care journey it’s where things consistently break down. And so it’s kind of like being in an in an in an escape room, and I’ve already done all of the escape rooms, so I know where like the clue is and how to get out and what you need to do preemptively. But it’s taken me 15 years of just trial and error to learn those things.

And so I you know, felt that I had that skill set to help my my mom and my my dad also, he was recently diagnosed with colon cancer, both of them pretty much at the same time. And so I kind of stayed on top of everything for her because I knew, okay, a discharge. The discharge instructions are gonna be a mess. Or when we go see the specialist who talks about what this long-term process is gonna be like, he’s just gonna mention his involvement and not what she used to do behind the scenes. So and then it the process started with her finding out that she had breast cancer just through her patient portal. She just got the lab results through her portal and no communication with the care team whatsoever.

So, of course, that frustrated me so much. And I was very angry because I see that both personally and professionally all the time. And so it was interesting to see my mom’s perspective and my dad’s percept perspective. My dad was like, well, I would want to know. And I was like, but a cancer diagnosis out of nowhere, like that requires some human delivery. And so I was quite upset for her. And when we went to the first breast surgeon uh appointment, I was definitely um a little frustrated and I made it known a little bit. Um so those, but I know that those things happen all the time.

Melissa Gilkes-Smith: They do. They do. And being in healthcare, you know, like you said, you you’ve already been in the escape room. You know all of these ins and outs. And I have conversations with friends of mine that work in healthcare all the time about how they’re, you know, I have a friend of mine whose daughter is working through um a chronic condition and she had an issue with authorizations. And the only reason why her daughter was able to get the authorization timely was because my friend, her mother stepped in. Right. Right. That’s it. She’s the one who had to call the insurance company because they were having an issue with the doctor’s office just not following through. Um, and then of course the reasoning is, oh, well, it’s somebody else’s fault.

Like I was like, they actually gave you that reason. Like they actually said that. Um, and then, you know, me personally helping my family, my husband, my daughter through, okay, well, okay, let’s do this. You know, okay, okay, this is this is what this means, this is what that means. You know, it’s just, and I get family members who call me all the time. Right. Me too. And they’re like, hey, Melissa, can you so what does this mean? I’m like, okay, so let me just number one, I’m not a doctor. Right. So, you know, well, I have these symptoms. Okay, so again, I’m not a doctor. Right. Um, but I can help you navigate through that that patient journey. So, like if you have other questions. Um, but so before we like dive into specifically that communication piece, because that’s huge, let’s for people who may not know what a care experienced strategist does, what does that mean in practice?

Can I go back and add something to the portal thing?

Meredith Mangold: Sure. So when mom found out about her diagnosis through the portal, I was obviously very frustrated and upset. But I also knew from things that I had heard that the practice had just switched over to Epic, the Epic EHR. And then I found out later that the um breast cancer nurse navigator had been on vacation. And so I know how that those little things can just contribute to things falling through the cracks. So that made me have a little bit more compassion and understanding because I understand how things work operationally behind the scenes. But still, it directly impacts the patient and caregivers. So it’s always a much more nuanced perspective. And I know we might talk about it later, but having my professional understanding does help me see my personal experiences with a little bit more nuance.

But so there’s there’s so much going on behind the scenes for both sides. So it’s it’s just a system, like you said, that’s not not set up to be easy to navigate.

Melissa Gilkes-Smith: But the thing about that then, of course, is whether or not the practice said, oh, we recognized there was a flaw. Right. Let’s make sure that this flaw doesn’t happen again. So if somebody is on vacation, who is the person that is backing them up? Who is the backup to the backup? Who is the backup to the backup to the backup? Like there always has to be somebody there. Because one of the examples that I like to give is if everybody in the office spends money on that one Powerball ticket and you all win, what do we do? Like, who’s the backup? What is the plan? What is the procedure? Like, you know, what is what is the backup?

Meredith Mangold: I agree completely. And that’s what I convey to other patients too is okay, you can do this, but then what’s the next step you can do to make sure that thing you do follows through? Because inevitably, people are people, the system is the system, quote unquote system. And so you gotta have it’s like chess thinking, you know, three steps ahead of, okay, if the pharmacy doesn’t call me about my prescription, then I’m reaching out to them, seeing what’s going on. If they say it’s a prior author authorization, okay, I’ll call my insurance and then talk to my PBM. You know, there are multiple steps that now I know are necessary to take a lot of the time. Um, and that you can’t just kind of stop with the first step.

So yeah, it’s the same thing for like operationally as well.

Melissa Gilkes-Smith: But again, of course, you know this because you work in the field and the number of people who have these issues, you know, calling the, you know, the insurance company about their authorization. Patients don’t know that because they, you know, they’re, oh, well, my authorization, I heard something about an authorization, it’s been submitted. So they’ll just wait. Right. And then get slowly get disgruntled, of course, because they don’t know what’s going on on the other side, or maybe they can contribute because nobody provided them that that guide, how to be a patient and what to do if when something happens or doesn’t happen, right? Yeah. So that’s kind of like the care experience strategist kind of partially what you do.

Meredith Mangold: Exactly. So I come in and say that, okay, so prior authorization, for example. In in the beginning, I had no idea what a prior authorization was. I had to figure it out when I needed this medication, and the pharmacist told me, oh, it needs a prior authorization. Like, what does that mean? What do I have to do? And so I could come into a practice and say, okay, do you realize that X percentage of patients, you know, could conceivably disengage and because of something as simple as not being educated about what that process looks like. And, you know, if this happens, you can do this, because there’s only so much that the doctor’s office has, you know, the bandwidth to do, which uh is something that I have had a lot of experience with.

So something as simple as having kind of a uh best practices of being a patient guide to say, okay, I’m gonna prescribe you this prescription. These things may happen. If so, these are the steps you can take. So just something as simple as that to be able to either send that to the patient in their after visit notes or just something that they’re given during onboarding into a practice that can, you know, increase adherence to their medications. A lot of the times, you know, patients are accused of being non-adherent and they just think it’s because, oh, they don’t believe the medication could work, or they weren’t educated enough in terms of why they should take it. But a lot of the times it is largely logistical.

Like right now, I am trying to get a medication that my doctor prescribed three weeks ago again, I think. And then I see her again in two weeks, and I’ll be able to get it by the time I see her if I’m lucky. And so, you know, I can’t the whole point of seeing her every five to six weeks is that I can say, okay, this is how that worked. You know, maybe it worked, maybe it didn’t. Then that informs our next step. So back to what I do as a care experience strategist really is opening clinicians and digital health innovators uh viewpoint to see just these little, just like you were saying, like your tagline, just these little moments that matter, either to educate or to provide more support, can make all the difference in the relationship between a patient and their provider, patient and their care journey.

And it’s it’s those small moments that can make or break that kind of long-term health journey success.

Melissa Gilkes-Smith: And one thing that this just keeps leading back to, of course, is that communication. Right. And through my research of Google Reviews, um one of the things that patients speak to most about is number one, the clinical encounter. But number two, within that clinical encounter, it’s about the communication. It’s about how that provider made them feel. Because again, there are very few individuals that are that who can just walk into the clinical encounter with the doctor and go, yes, you did a very, they did a very good job on that ultrasound. I think that ultrasound is going to come out, you know, with very clear results for you. That was a great x-ray, you know. That was that was the best colonoscopy ever.

I don’t think you could do a better one, right? Um, but it’s that communication piece. It’s, you know, the the doctor listened to me. The doctor explained to me. And because so many times, speaking of prescriptions, many patients will get a prescription, you know, prescribed to them, something prescribed to them, but they don’t know exactly why they’re taking it. Right. And there was actually an example um of a friend of mine who got prescribed a medication. Um, it was a cholesterol, and the doctor said, in the portal, this was the communication, said your your cholesterol dropped this many points, and it looks great. We’re going to increase your dose to this period. And so they’re kind of like, well, I don’t understand.

Right. You said that my cholesterol dropped so many points and it looks great, but now you’re going to increase my dosage. I I don’t understand. That doesn’t make any sense to me. It was just period, instead of because da-da-da-da-da. Right. And it was truly just because of the fact that they just wanted to get it a little bit lower, and by increasing the dosage, we could get there faster. Right. Okay.

Meredith Mangold: Yeah. It’s yeah, that education piece. Because then your friend is also there being like, wait, but I don’t understand why this is happening. And because of that, maybe feels a little bit less trust or connection with that clinician. To be like, well, what like, why is this happening? I want to understand. Otherwise, I just feel like they don’t put in the time or really just realize. And sometimes, you know, you’re in your own, you know, lane, you’re in that space, and you just, you know, give the clinical speak, but you don’t realize that, oh, this person, this patient doesn’t really understand that I want to try and continue to decrease their, you know, cholesterol. Um so it’s there is the main one of the main things that I also focus on as a care experience strategist is that psychosocial um interactional aspect of care and how significant that can impact the clinical outcomes too.

And that is one of the hugest parts of the patient experience. Um, it’s funny that you mentioned uh colonoscopies because as an inflammatory bowel disease patient and colorectal surgery patient, I cannot count the number of colonoscopies I have had. And I actually use that as a kind of case study when I’m teaching uh digital health founders about how to create a truly comprehensive, meaningful, impactful patient experience through whatever innovation they’re creating. And this is very much connected to clinical care as well. Is there is so much more around the experience of a colonoscopy than just going in, getting sedated and getting scoped. And that experience can look so different in terms of the patient needs, depending on who the patient is, what their history is coming into this experience, uh, what the scope is for, what their support system is.

So, for example, if it’s kind of an acute situation and this is something that seems more like, okay, they go and find an ulcer and they can provide medication, and that is resolves things. You in the beginning are probably uncertain, and you’ve heard things about how colonoscopies are not fun. So, one of the most important things is to provide that education in the beginning, set expectations, give uh education about, okay, and these are things I’ve realized as a patient. You have to call to make sure that the anesthesiologist is going to be in network because a lot of times that is not the case. Um and you have to uh kind of understand that maybe depending on the doctor’s schedule, maybe they don’t have time to come and talk to you immediately afterwards to scope.

So, are you going to have a follow-up appointment? So essentially, for acute things where you’re a newbie to scopes, that education piece and setting expectations is really important. For veteran GI patients, maybe someone like me who routinely goes in for scopes for inflammatory bowel disease or a colon cancer patient, you already have that history of waking up and being told that you have an autoimmune disease or being told that you have cancer. And so going into that procedure, there can be, there’s so many, there’s such a varied internal psychological, emotional experience going in where they’re thinking, oh gosh, is this going to totally change my life? Is this going to change my family’s life?

What is happening? And so, in my mind and in talking with other patients, I found that for those kinds of patients, it’s really important to be informed as soon as possible afterwards so that they can have that answer one way or another. I remember telling my surgeon because we thought that I’d been misdiagnosed and that I had Crohn’s. I said, please be there to tell me as soon as I open my eyes whether it’s Crohn’s or not, because that would totally change the trajectory of my health journey and my life. And I remember opening my eyes and he was right there and he said, Everything looked great. It’s not Crohn’s. And I’ve heard that from so many other patients too. So, same procedure, but patients coming in with different histories, different needs.

It’s when care teams are aware of all of those other aspects of the patient experience. That is what can make someone say, Oh, that was a great colonoscopy. You know, I was educated about it. I was told what the next steps are. The anesthesiologist, you know, made me feel really relaxed going in. Um, because there have been times where I’ve been at hospitals where I was scared to be sedated because of the pre-op experience. And so something as small as anesthesiologists saying, you know, I got you. This is what we’re doing. I’m going to be here the whole time. No worries. That can just change everything. So you can say that was a great colonoscopy, but it’s for everything except the scope part.

Exactly. That can make all the difference. And that’s why, you know, I stay with my GI at her practice, is because I have had that good experience.

Melissa Gilkes-Smith: And how long did that really take for the anesthesiologist to come up to you and say, hey, this is going to be it, everything’s going to be fine. I got you. I mean, how 30 seconds? If as long as if you didn’t have any questions, right? If that 30 seconds for them to walk over and say, this is all going to be good, I’ll see you when you wake up. Yeah.

Meredith Mangold: Yeah. It’s it’s literally one sentence or two sentences. And one of the kind of simplest things, but most impactful things I’ll tell med students, for example, is, you know, like in the movies, and a lot of the times clinicians will come into the room and say, okay, well, how can I help you today? Or why are we here today? And nowadays we do all this darn paperwork, either, you know, literally on paper or through the portals. And we say, you know, my allergies have been really bad, or I am having increased cramping or whatever. It can take five seconds for them to just look at the notes before they walk in the door to say, okay, so I see your allergies are acting up. And that one sentence can make that patient feel seen, that they care, and that the time that the patient spent to fill out those forms was not for nothing.

And literally just something that small can make all the difference. The holy grail of communication in that space is I looked at your records or I looked at your results. And it’s sad that that is kind of a unicorn type situation, that that immediately, just from that one or two sentence intro, can set you at ease in the appointment and make you feel like, okay, I don’t need to rehash everything. They actually looked at things and they know what’s going on. No, it’s just those simple pieces of communication.

Melissa Gilkes-Smith: So I feel like we’ve covered this, but there may be some a little bit more to unpack there. But what is the most common and most costly gap you see between what a care team intends and what the patient actually experiences?

Meredith Mangold: Again, it all comes down to communication, but I think like it sounds like a broken record. But um, for example, something I was thinking about this earlier, something as simple as, you know, the doctor saying, Okay, come back and see me in three months for X, Y, and Z. And then you go and check out, pay your copay, and you tell, you know, the front desk, okay, he said he wants to see me in three months. And then they say, Well, he’s booking out at least six months. And so you say, Well, okay, like I under I understand that that is a situation, but then then you feel like, well, he told me this, and this is what’s important for me clinically and for my health. But if like operationally, he’s all booked up, like, what do I do?

So I think a lot of times there is a disconnect that between clinicians and knowing what’s actually going on in terms of their schedule and you know the practice operations. And just again, it’s about setting expectations that are like based in reality. And so I think a lot of the times that that is a gap that can create a lot of frustration or feeling of like, why, why doesn’t why don’t they talk to each other? So I think inconsistencies in care, which come down to communication, are a big gap and provide like a uh risk of patient drop-off or just a feeling of like, well, this is the care that I’m supposed to create, but there are all these barriers in terms of scheduling or whatever the case may be.

Um but yeah, boring to say, but it’s it’s communication and coordination because all those things fall fall on the patient, and then they get frustrated and think, well, no one’s doing their job, so you know what’s what’s the point? But for me, I just know they are dealing with so many things on the back end. You know, doctors are trying to treat their patients the best possible, they don’t necessarily see all the things that the you know administrative staff sees. Um and so I think just those the lack of communication both internally in a practice and then between that care team and patients, uh, just provides the opportunity for a kind of distance to form between patients and their care team.

Melissa Gilkes-Smith: And when you look at that communication, I mean most patients have very similar have the same questions. I mean, that’s why they come up with the frequently asked questions, right? Right. And so if providers, if practices would just provide their patients with preemptively provide those patients with here are the frequently asked questions about colonoscopies, about anesthesia, about this, about that, whatever it is. Now, if the patient has a question outside of that list, then we can address that. But I know that I’ve heard from clinicians that they don’t communicate during certain times because there’s going to be too many questions. Yep. And I’m kind of like, okay, well, but they’re your patient.

Right. You’re about to perform a procedure and they have questions about what you’re going to do to them and what’s going to happen to them. So it’s justifiable that they have these questions. However, if we would have provided these answers ahead of time, they would they might be like, oh, okay, it takes about X amount of time. Right. Oh, okay, this is what happens during anesthesia. You know, oh, okay, this is what the prep is going to feel like, which of course, you know, let’s that that could be that’s a wild card right there anyway. So um, but yeah, all back to uh that patient communication, right, and caregiver too.

Meredith Mangold: It was, I was just uh chuckling in a frustrated way to myself as you were saying that, because for my mom’s surgery, the uh breast surgeon who has been doing this for, I don’t know, 50 years, she it was known, the nurse navigator said, just let you know, surgeon so and so does not come out and talk to the family after the surgery because she believes there’s nothing left to say. And my dad and I, well, first of all, I as a you know patient experiencing all this, and as a professional, I was like, what? This is unacceptable. And then the I I think maybe we made a little bit of noise or something. And the doctor did come out after mom surgery. Dad asked her like one question about okay, did you uh how many like lymph nodes did you uh harvest to do the testing?

And she was like, Well, this is why I don’t come out and ask, answer questions because I have nothing left to say. I don’t know. And of course, I had questions that I wanted to ask, but I was like, wow, better not piss her off. Like, I want I want her to be able to, you know, continue to treat mom in the way she deserves. But it was so frustrating. And we didn’t find out until actually the plastic surgeon came out first. We got more information from him. And he said, Yeah. So she’s gonna be in post op for probably about six hours. And my dad was like, Why didn’t no one tell us this? I can’t believe this. I was like, Dad, this is normal. Like, they don’t, you usually don’t find out about that.

You have to ask. And so it was funny seeing it from their perspective of, oh my gosh, I can’t believe they didn’t tell us this. And I was like, I I expected this. This is what happens. But yeah, if it’s just like I I also have come up with some of the like most frequently asked questions patients have for practices. And just imagine the number of phone calls that would not have to happen between patients and say, like, the administrative staff, if they were if patients were armed with that information ahead of time. So operationally, there is huge benefit to equipping, equipping patients with that kind of information. But yeah, I was like, this is how it goes, dad.

Melissa Gilkes-Smith: Now, I think this is a good lead-in to AI, because when I work with practices and we talk about their frequently asked questions, they have you know call centers. I, for those frequently asked questions, I like to connect an AI agent because these are transactional um conversations that can happen between a patient and AI agent, you know, the basic questions, right? Yeah. Questions that require more emotion and more relationship um conversation, you know, that’s we we’ll definitely transfer to an agent. But a lot of these FAQs can just be, you know, answered simply by an AI agent. And a lot, and with all of the technology now, you can not always tell when you’re speaking with an AI agent or not.

So I’ve I’ve heard a lot of good uh call center agents. Um, but what does AI do well for patients managing complex chronic conditions across multiple systems? And where do you think we need to be especially careful about its role in the patient provider relationship?

Meredith Mangold: This is a big topic now in the patient experience and advocacy and engagement space. And it’s really hard because we’re kind of in the wild west now. Um there are not the kinds of guardrails and safety measures quite yet that should be there. Um, but in terms of chronic complex patients, I one of the terms that is used is that they have like calibrated trust in AI. And I think what you were just saying is a great example. Like if it’s an administrative thing or logistical thing, they like accept AI helping to expedite those processes. You know, it’s easier to engage with a chatbot or something like that versus waiting on hold for 10 minutes for you know an admin staff person to get back to you.

And so I think that is, you know, accepted as kind of normal now. And another, I think the one of the most meaningful um uses of AI in that population is helping to identify themes in medical records or being able to do research and kind of translate uh medical ease into kind of a layperson’s perspective. And I’ve helped some innovators create um platforms like that. And so that’s incredibly um helpful. However, every single chronic care person that I’ve talked to understands that they cannot trust anything about making treatment decisions and that they have that calibrated trust of, okay, I can uh believe you saying that X, you know, lab indicates this, but I’m not going to trust you saying the AI saying, you know, I don’t give clinical advice.

I’m not a doctor, but you know, X, Y, and Z could be options for your treatment or something like that. Once it is involved in making meaningful decisions with your care, then that’s a place that most patients don’t want to, like, don’t have trust. Um, and it’s interesting because some of my friends and colleagues who are like professional patients, like they just have all of the conditions, all of the problems. They use AI all the time, but with that calibrated trust of it can help me, you know, administratively, logistically, and give me some insight into research. But there are things that AI cannot know, and that only my doctor, who I’ve established a relationship with, can know. What I’ve tried in the past, what they know to be a factor in my care.

You know, I’m not driving now, so I rely on my mother-in-law to take me to all of my appointments. And so that’s like a factor in my care that AI can’t know. And the fact that my pain management history has been incredibly traumatic. And my doctor knows that, but that’s not something that AI can know and that informs care. Essentially, humans are see the full picture. And unless you give AI that information, it can’t know it, but obviously it can never know it and understand what it means for that patient. And that is a huge part of care. And I see that in my own care now, that all of my doctors who I have now, after 15 years of trying to gather the right care team, the things they know and act on are all those contextual parts of my history.

Um and so it’s just a really complicated topic. And there is no uh, there’s no set answer. All of like the statistics are all over the place in terms of what patients um feel about AI. Like, you know, I think it’s about 50% of people said AI made them trust healthcare less, but more than 80% said that clear accountability measures in terms of, okay, is there a doctor looking at this uh response from AI would increase their trust in it? So it’s very nuanced, still kind of being figured out. I think one of the most significant use cases now is ambient scribes. And what that means, there’s a lot of hesitation to like fully disclose in appointments. And I think it’s really important that there are some clinicians out there being very open about how they are seeing ambient scribes from both the clinician perspective and patient perspective.

Um, but yeah, there’s in some so much to consider, so many perspectives. But I think the biggest one now that is still inconsistent is about what true disclosure and consent looks like. Um, because there’s there’s no set uh kind of practice there. And I’ve heard stories before of patients who say, you know what, I’m actually not comfortable using this, you’re using this scribe. And the private provider says, Okay, then I can’t see you. I can’t treat you because this is how we do things here. I’m like, well, you should be in a different profession.

Melissa Gilkes-Smith: Yeah, we’ve got to meet patients where they are at that moment, and AI is just so new. Um, and there’s just so much to talk about, and we can go on it for hours now. AI alone. Oh my gosh. Yeah. Um, one of the things I want to touch on is the other side of that. So you’ve got the clinicians who use AI, but then you have the patients who use AI. And so they get the diagnosis or they are experiencing the symptoms. Um, and before they even go see a provider, after they see a provider at whatever moment, but they are confirming with AI, was this doctor correct? And if they get that conflicting information, you know, it’s kind of like then they go back to their doctor and they’re they’re questioning.

Yeah. So this is, you know, back many moons ago, it seems, at this point, we had WebMD. Right. And you had all of the WebMD doctors, right? You know, I looked it up on WebMD. I’m like, I’m I’m dying, you know? So right. No, Melissa, you have a cold. Right. Um, but you know, what are your what are your thoughts about the patient coming in who’s, and maybe it’s not just AI, it’s they’re coming in a little bit more educated because of all the access to information that we have out there. You know, your dad, for example, asking the surgeon, so how many lymph nodes did you remove? You know, that’s that’s him being educated about his wife’s condition and asking the right question. Of course, having you as a daughter that, you know, adds to that.

But, you know, what are your thoughts on that?

Meredith Mangold: Yeah. And that’s only because, yeah, I put like a whole dossier together for both my parents of these are the questions that you should ask because so many patients don’t know, like, first of all, that they can self-advocate, and then how they can. And I know the questions to ask because I know the information that is normally not volunteered. Um, so what do I think about that? Um I think it depends on the way it is communicated, because some doctors are all for, you know, there’s a concept of participatory medicine of patients being um, you know, equal and active partners and decision makers in their care. And so I think that kind of education is what and the pay and the doctor’s like respect for a patient’s knowledge about their own body and their own experience.

So knowledge can be helpful in that way. But I think that coming as a patient, coming in to talk to a clinician saying, you know what, I was doing this research, found out this, you can present it in a way of like, so I understand that you have said this. Can you explain to me a little bit more about how this treatment works? Because I was reading something and it said this. So I just want to better understand, you know, why we are making this decision. So you can say it in a way that is more um, you know, help me understand this rather than I saw this thing. And so I don’t trust you in saying this thing. Um, it’s all about communication. And I think that definitely one of the scariest things is being told um like um contradictory, contradicting information.

And that’s happened to me before in really significant spaces. Like I was about to get surgery the next day, and then a surgeon came in and said, You’re not getting surgery anymore. And this was a life-saving surgery that I needed to get. And so I called my GI and said, like, why wasn’t this communicated to me? And so opportunity situations like that can really make or break trust in a relationship. And so from the patient side too, you need to try and do what you can do to maintain that understanding and that relationship and not coming in as kind of uh uh argumentative because doctors have a lot more nuance most of the time if they understand you in your history. But also sometimes they could be overlooking something.

Um, and a lot of times I learn the most from my fellow chronic friends. And so I can say, you know, I understand we’re trying this, but my friend is, you know, taking chromalin this many times a day. Can you help me understand like the difference and why she’s doing that and I’m doing that? Um and most of the doctors, or really all the doctors I have now, have been very receptive to that kind of communication.

Melissa Gilkes-Smith: So whether you’re a clinician, healthcare leader, or innovator, what do most what do you want people to understand about designing care that actually works for patients?

Meredith Mangold: Is understanding more than what’s happening on the surface. I’ve come up with these five dimensions of care that I use to kind of more uh systematically um distill important parts of the patient experience that are not seen, you know, how it’s impacting them at home, um, emotionally. And I I kind of think of it as you can create a really sturdy next gen bike. Like it has all the bells and whistles, and you know, in theory, it’s going to be able to take the bicyclist from point A to point B and it’s gonna work great. But if you know, okay, the cyclist is going to be wearing this like 20-pound backpack and they sprained their wrist last week, and the course ahead is going to go from silty ground to rocky to grass, and then there is a dead end and you know, X, Y, and Z ahead of you, then you can create the bike to unlike to be able to work in all those circumstances.

And that’s exactly like how I the perspective I bring is there’s no I there’s no perfect world, perfect execution of medical care. And so you have to plan for how the patient is what the patient is going to be carrying, i.e., that fear of going into colonoscopy and what’s gonna happen. Or, you know, the fear of, well, my mother had breast cancer. What is this mammogram gonna show me? So what are they navigating like emotionally? Um, and then what’s what is the situation ahead? So it’s that same thing of, okay, I’m gonna prescribe, I’m going to get a prescription, but then things are going to get derailed. I need to know how to move forward. So I try and help educate care experience creators that you have to create a solution or a care experience that is designed for those kind of situations and gaps and friction points to occur because they are going to occur.

And um I the most important thing that I try and convey is the care experience needs to make sense for the care continuum and the care journey, but also for the individual patient’s experience. So kind of that micro-macro approach of operationally, this is what really happens in this part of the care experience. And then, you know, individually in a lived experience way, this is what the patient is going through. Because otherwise, that you know, that bike is not going to serve that cyclist well, um, or at least the best that it could, if you are not planning for those set of circumstances.

Melissa Gilkes-Smith: You need an interactive choose your own adventure, patient journey map guide. That is literally what I have created before.

Meredith Mangold: And um yeah, it’s and so that’s why working with people with lived experience, but also that strategic operational insight is so important because they see things and know things that most industry people do do not. And that can make all the difference in the success of that care experience, which impacts patients’ well-being and then the outcomes from the clinician perspective as well. So there’s a lot that professionals with lived experience can can show you, tell you, help you understand. And I’ve had that affirmed by clinicians and innovators telling me, oh my God, I had no idea. Like that is, I wish I had talked to you three years ago. And so I hope that that’s something that people listening can can take away.

Melissa Gilkes-Smith: We could talk all day. I know. And I feel like we we just opened up a lot of opportunities for future episodes as well. Um, but what you’ve given us today is something that most patient experience education cannot provide, the view from the inside, the operational burden that never shows up in a dashboard, the invisible cost of re-establishing your history for the fourth time, the specific feeling of being heard but not being listened to, and what it actually means for a patient to feel seen, supported, and empowered versus what most organizations call those things. Here is what I want every person listening to carry away. The patient is not a passive recipient of care. They are an active participant in a system that was rarely designed for what their participation actually costs.

Until we design that for reality, every other investment in patient experience is incomplete. Your challenge this week, think of the most complex patient in your organization that you serve. Map everything they navigate in a single month. Not just the clinical appointments, but the coordination calls, the prior auth requests, the portal messages, the prescription renewals, the referrals. That map is your patient experience reality. Is it designed for them? Meredith, thank you for your expertise, your honesty, and for making the invisible visible. It’s one of the most important things anyone can do in this field.

Meredith Mangold: Thank you so much, Melissa. I knew that having this conversation with you was going to be soul uh affirming. And I just appreciate you uh using your platform to be able to spread this good news of what the patient experience really looks like. So thank you so much for having me. Thank you.

Melissa Gilkes-Smith: I’m looking forward to future episodes.

Meredith Mangold: Me too. I want to ask you questions.

Melissa Gilkes-Smith: Narratives, information, and empower health strategies are now in the show notes. Every interaction is a moment that matters. I’m Melissa Julk Smith, and this is Touch Points. If this conversation moved you, subscribe wherever you listen and connect with me on LinkedIn. See you at the next Touch Point.