Intro of topic - The Good, Bad, and Ugly E-Book

[00:00:53] Tiffany: Welcome to AiArthritis Voices 360, this is the official talk show for the International Foundation for Autoimmune and Autoinflammatory Arthritis, or AiArthritis for short. My name is Tiffany Westridge Robertson. I'm the CEO of the organization and also a person living with the diseases myself. So I am here today as one of the co-hosts.

I'm joined by another fellow patient co-host and my rheumatologist. Al Kim. Woohoo. Woohoo. All right. So first and foremost, I'm gonna turn it over to Deb to say hello. 

[00:01:30] Deb: Hi everybody. I'm Deb Constein. I am tuning in from Madison, Wisconsin. I was diagnosed with rheumatoid arthritis at the age of 13, so 40 years of having this lovely disease and lots of lived experiences going with.

[00:01:48] Tiffany: All right, thanks Deb. Deb is one of our recurring co-hosts, so you probably heard her on here several times with me before. And our guest of honor today, Al. Hey, Al . 

[00:02:01] Dr. Al Kim: Hey, Tiff. 

[00:02:03] Deb: I have a hard time like even calling a doctor, well, Al, just, it's chill.

[00:02:09] Tiffany: I know it took me a long time. If you listen to the older shows, like from two years ago I always say Dr. Kim, and then it kind of went to Dr. Al and then he just go. It's just al, just say 

[00:02:22] Dr. Al Kim: Al because I, I behave like someone who deserves to be called Al. So anyway, and it's also the name, my mother gave me when I was born. So anyway, my name's Al Kim and I'm adult rheumatologist at Barnes Jewish Hospital in St. Louis, Missouri, where I'm also on faculty at Washington University School of Medicine. I also founded, and co-direct the Lupus Center here at Wash U and Tiffany is indeed one of my patients. Some interesting things we've had many good discussions though.

[00:02:52] Tiffany: We have. We have during our visits, we have, we have, and, and that teed me right up for the co for the topic.

So this is actually part two, two part series here, a spinoff of our series called Rheumy Rounds. And Rheumy rounds, if you've heard before, is actually co-created in part by Al because I asked him, I could you come and do like a pilot with me? We think it's a really good idea to have some episodes where rheumatologists and patients sort of come to the table as equals, and we talk about some things that might not be so easy to talk about to a doctor. And then together we sort of hash things out and then come up with solutions. And so in this particular episode, it's a part two to one that aired in December of 2022 with Dr. Lisa Zickuhr, and it's called The Good, the bad and the ugly , like saying it like that . So, uh, which is gonna be an ebook that AiArthritis is going to be putting out based on submissions of stories by both patients and rheumatologists about situations in the office setting where communications may have led to some really great outcomes and experiences and maybe not such great outcomes and experiences. I have to say, because I, I mentioned this before we started recording, Lisa was very, very in on the side of the good.

We got a lot of good examples and I said, I bet you I can get a couple from Al that he can share with us that maybe weren't so good. So there's a lot of pressure on you, Al!

[00:04:31] Dr. Al Kim: No, it's not pressure, it's just baseline. Okay. 

[00:04:36] Tiffany: And now I'm kind of setting myself up because I am one of those patients, so I don't know. I know I'm gonna really be listening for that, but I feel like we have a lot of good examples of what happens in, in good experiences. So that's the topic today, and as a result, we are going to be encouraging all of you who are listening, who are people living with a arthritis diseases or rheumatologists, we have a link for you to submit your experiences of what you think constitutes a good experience in the office, a bad, and just a really downright ugly, because we do have examples and it's important to listen to all of them so that we can highlight some great examples of what to do, what not to do for both parties. And then we're going to work patients and rheumatologists together to create some recommendations of best practices based on those submissions.

And see, you can be part of an Ebook. Just for, for submitting your story, you'd be part of the project. So we're gonna kick this right off with Ms. Deb. Alright. I feel like I'm a game game show. Choose. Kinda like I got cards. 

Deb shares an Ugly story

[00:05:50] Tiffany: Deb - Good, Bad or ugly. Which one would you like to do?

Which would you like to share with us?  

[00:05:57] Deb: So I'm gonna start with my ugly experience that I actually walked out of the appointment with my rheumatologist and he got fired on the spot. It was a follow-up appointment, and he was new to me anyways, but he had asked if I wanted to go on a clinical trial. Mind you, I was actually doing well with where I was at with my medications and things like that, and he asked if I would go on a clinical trial.

So I went home, talked to my husband about it, came to the follow-up and I told him, you know, I don't think I wanna poke the bear. I think I am doing really well. I believe in clinical trials, but I don't think this is the right time for me to go digging around. He looked at me and he told me my husband must not love me enough

to give me that recommendation, . And I'm like, I think we're done . And I literally got up and grabbed my jacket and I walked outta the appointment and I'm like, I, I can't keep going to this practice. I'm gonna have to go to some other rheumatology clinic because I'm not even gonna even venture the thought of meeting this guy in a hallway of another rheumatology.

I was like, yep, I'm done. So that was my ugly. . 

[00:07:20] Dr. Al Kim: Wow. I, I think, I think we're done. , . 

[00:07:25] Tiffany: Mic drop.

[00:07:28] Deb: I know. It was shocking to me. Cause I get, I, I really, we really talked it over and really hashed it out with my husband and he supported everything that I was like go, coming back with and for him to say that. It was something.

[00:07:46] Tiffany: Yeah, it was something. Well, that's, so if we were, if that was an example in the book, let's just, let's just pretend we're reading your story. Yes. In the book and you know, I, I think. What do you, well, before I say anything, what do you think, Al, what is some of your recommendations on what might be better practice or communication?

[00:08:06] Dr. Al Kim: I can't wait to hear this. I mean, simply put, I mean the exact opposite of what happened. I mean, this is the, oh, the old school example of how medicine used to be practiced as paternalistic, uh, kind of point of view, right? That there communication was unit directional and in one direction from the physician to the patient.

Yeah. There's no room for negotiation. There's no, you know, you know, back when all this was happening, I mean, there was, you know, there weren't really many lawsuits, you know, malpractice type lawsuits, which kind of changed the, the, the game quite a bit, actually good and bad. But at the same time, you know, it is how, how do you just discount what you say?

you know, they might as well put a muzzle on you and just mandated a whole bunch of things for you and, and, and insult . Right? . So, um, yeah. That, that pretty much sums up that experience. That's, yeah. I'm, I'm glad that you fired them on the spot. I mean, no, I mean, every, every sane human would've done the same thing.

[00:09:09] Deb: Yeah. I am not that kind of person that ever like just makes a judgment call in the moment. Because typically, I, I mean, I think I would've been more shocked and probably sat there, but I didn't. I'm like, yeah, game over. We're done here.

Tiffany shares a story that is a combination of Good, Bad, and Ugly

[00:09:24] Tiffany: Absolutely. You know, I'll throw, I'll throw one out. That is both.

It started as an ugly, kind of a bad too and ugly, and then it turned out to be good. And so that was when I started in Los Angeles when I was originally diagnosed. Then I moved to Phoenix on my way back to St. Louis, and when I was in Phoenix. While I moved there, I had a ru, my diagnosis with rheumatoid arthritis.

And at the time I was on a medication indicated for rheumatoid arthritis exclusively. And I was really getting bad to the point where I could not get out of bed in the morning. It felt like my spine was glass. If I moved a half an inch, it would shatter. I was having to carry a bar stool around with me everywhere because I couldn't stand longer than a few minutes. I knew this was related somehow to my spine, to my lower spine. And at the time, this was, I'll date this, this was 2013. I had been tested for ankylosing spondylitis and I didn't match the criteria, so didn't know what to do. So I get to this new rheumatologist in Phoenix had visited and they said, let's start over with some blood work and some x-rays and all, you know, the kind of the whole new,

new journey of, of trying to figure out what's going on with you. We're not convinced it's rheumatoid arthritis. And long story short, I go back to get the results and it wasn't the rheumatologist I was meeting with, it was the physician's assistant and she was going over the x-rays and the blood work and said, you know we just don't really see anything that's showing up.

So we're gonna go ahead and leave this as rheumatoid arthritis and we're just gonna keep continuing the treatment and see what happens. That's when things got ugly on my part, because I was not happy at all. Um, I was in more pain than I ever had been well even to this day. So up, up until that point, and I just kept saying this is just not acceptable. I need you to listen to me, that something is going on. That is not working with the medication that I'm currently on. So something has to change here. And I ended up just saying kind of, do you know who I am? I know all of these things because I'm friends with the Spondylitis Association of America.

So I started rattling off with they say and diagnostics and things, and and she goes, I'll be right back and she leaves for five minutes. So the doc comes in , so I would just really refuse to leave the office. So I kind of turned that ugly, but I, I just wasn't gonna take that as the answer because I knew better

and, and not everybody can say things like, I'm friends with the Spondylitis Association, you know, but it got her to listen and the doctor came in and he sat down and he listened again. He looked over everything and he said, I just got back from ULAR and heard about a new disease called non-radiographic axial spondyloarthritis, and you tick all the boxes and it turned into a good, a good visit, and he put me on a new biologic that at that time was in clinical trials for that condition, and within weeks, two weeks, three weeks

it started working and I was on that successfully for six years. So good example of, I think a crescendo.

[00:13:02] Deb: I agree with you because again, what jumps out at me is you as a patient, you spoke up for yourself and you just kept, you know, re-acknowledging, okay, well what I'm feeling is not normal and this treatment isn't working. So standing up for yourself and actually having back forward. Yeah. 

[00:13:24] Tiffany: And I should say I fast forwarded it, you know, but that conversation was at least 15 minutes of me. I'm sure it was saying, I'm telling you something's wrong before I went in to I know this is different because this is why, so I just wanna clarify it wasn't like I just jumped to the 'I know people'. I was kind of standing my ground.

Dr. Al Kim on patients voicing opinions/active listening

So let me ask you, Al, hearing that story have, have you, I don't know if you probably have, because you are a very good communicator, but, 

[00:13:56] Dr. Al Kim: um, my English is pretty good. It is just, I mean, put it out there for, for the public to know.

[00:14:03] Tiffany: You listen very well and, uh, you know, I think I'm gonna atest to that because I was very complex when I came to you and said, I still have things that are happening and I don't have any answers and I need help. And you were very quick to say, let's just try something. So what happens when you get patients who come in who are saying, something's not working right here.

This is just, I understand that I'm on something. Everything's going haywire. Tell me what your I, which I'm gonna say is gonna be a good example of communication . Yeah. Because I just know it is because you're a doctor. Yeah. So tell me about how that situation would go. 

[00:14:45] Dr. Al Kim: You know, I think when I, uh, came up in training, we were still seeing a lot of patients that just said, okay, I don't know if I agree.

But, you know, I'm just gonna, let's just roll with it. Certainly probably last 10 years or so, you know, I would say the majority of our patients have really, uh, thrown their opinion into the ring. And I think, uh, this forces the providers to have to really acknowledge that open discussions are going to have to happen. If it's not happening,

then something wrong is going on, then right? Because ultimately, end of the day with you, Tiffany, you, you tried to open a discussion, you know, to the provider, but you know that particular provider wasn't real already had the story and narrative built in her mind that she had to recite in order to

in her mind, you know, treat you right? And I, I think that's kind of the aspect of this, of active listening, right? Not just listening, but listening with the intent that you're gonna come up with an action plan based on, you said, even though it may, may not be fully relevant to the reason why you are there.

Also, uh, I think in rheumatology we see this quite a bit more because there's so many quality of life issues living with chronic diseases, particularly those that are muscle skeletal with pain components that no other physician really wants to handle a priority. And so as a result, many of the stories come to rheumatologists, and I do find it our responsibility to address those issues and also say, I have an avenue forward for you.

It's not gonna be me, but there's a colleague that I think that could help, or to be able to say, I'm not really sure what we can do right now. But the thing is, is that, you know, you know, I keep reminding me of what's going on, you know, and something will click, right? Maybe it's, it's something you picked up at a conference or a discussion with a colleague.

And I think that's something that our generation we're really good at is, you know, almost every one of us texts each other, you know, providers nationally and internationally, and also on Twitter. You know, just, you know, examining cases, just throwing ideas out there. Um, it's much more of a fluid communication stream outside the office, but it does require that active listen.

Right. And I think the other kind of nuance here was that you saw someone else other than the MD initially for that return visit. Yeah. And I think this is where the MD failed to set expectations. All right. Including how office settings will run, because this is very common now in the private practice world where the MDCs, the new patients,

because they've experienced and complexity, but once you cinch down the diagnosis, it's almost always other help, nurse practitioners, physicians', assistants, whatever that end up taking care of the follow-up visits. Alright. Largely if, especially if the patient's stable and I don't think, I don't know. I know there's some practices in St.

Louis area that really do a good job of painting that picture, but I know most of them don't. Right. And that's really strange to, I think a lot of humans, when they hear that, that my 

rheumatologist speaks directly like that. Yeah. And has that open communication and also will say, now that we've gotten you to a stable point, let's have my nurse practitioner start to see you.

And if, if at any time something starts going awry, I'll come back into the picture and I'll still keep following all your blood work and all your other things that are going on. Right. Um, that makes a huge 

difference, right? Uh, it, it does. And so it, it is just a matter of making sure there's an alignment of, of these expectations, and this goes into the much broader topic we can just talk about later about, uh, setting expectations for treatment, right? Yeah. And, and, and your health, which is a much more involved and complicated discussion. But even just the simple things saying that, you know, this is how we run things here, but I'm still involved type of thing.

You know, if you don't establish that confidence in the process, you know you're gonna lose their trust. 

Revisiting Tiffany's story

[00:18:51] Tiffany: Yeah. I just think that. This alone just opened up a nice bullet point to build off of as we develop this book is that you're the different people that you could be coming in contact with in these communications that can derail a little. In this case, it, if I had not been persistent, I could have walked out of there with a diagnosis continued of rheumatoid arthritis on the same treatment and who knows what would've happened. But we have to remember that there are different models of the office and right different people, so, definitely something to think about there.

Okay. Al my question, oh, go ahead. 

[00:19:35] Deb: I've got one question, Tiff did um, for that follow up visit, did you know you were gonna be seeing a pa? No. Okay, so you fully intended to actually walk in and see that is not good. . 

[00:19:48] Dr. Al Kim: Yeah. That's just, it's just, it's bad business. That's really just bad business. Yeah.

There's a huge assumption by that office that you're gonna see us and you're going to enjoy your experience and get treated, but you know, obviously it's ex execution is, is less than 

[00:20:05] Tiffany: optimal. Yeah. Right. Yeah.

Dr. Al Kim shares a Bad story

Okay. So Al, you're up. Roll the dice. Good. 

[00:20:11] Dr. Al Kim: Ah, where do I start? Know, I think, or ugly? I, I think, I don't know.

I, I can't. I can't think of an ugly situation. Okay. I, I'm sure there was

[00:20:20] Tiffany: We covered the all good.

[00:20:22] Dr. Al Kim: We'll do some bads. Some bads, and they can really all go and get lumped into where I wasn't as effective as a listener. I'm not gonna give specific examples.

But there have been multiple times where I either phase out sometimes or I just didn't fully understand the ask and I misinterpreted without clarifying. And this leads to just a, a hell hole of a pit that you have to try to dig out of in order to rebuild that trust and I think, you know, at the end of the, uh, of

clinics where all of a sudden it's like the last two or three patients of a day. This happens. It's part of this is that our energy and our mood really has to match the intensity of the emotion of the ask. Right? Yeah. And this is, uh, a major source of burnout along with, uh, dealing with electronic medical records was a, which was a separate topic.

Okay. Um, but you know, for me, I, I'm either fortunate or whatever. I only see patients a half day a week because most of my work at Wash U in research, and so as a result I can kind of emotionally just let it all out. Right. But usually the rest of the day I'm a bit of a zombie like I've just, I've, I've, I've given all I can

and so when I think of my colleagues who see patients three, four, even five full days a week, I don't understand how they manage their emotional reserve. 

[00:21:58] Deb: Their brain, their brain just can't handle anymore. . Yeah. Emotionally and what you're investing into each patient. Right? Right. By the end of the day, you're done.

[00:22:07] Dr. Al Kim:  Right. You know, I mean, I think we're not all physicians are empaths, first of all, but of those who are keeping it up at a, you know, a nine or a 10 level out of 10 is, is a lot of work. But I think, you know, I, I look at that. The other way around is that a lot of our patients that are coming in with issues that are 11 or 12 out of a 10 scale.

They're living at 24 7 and I just have to turn it on and off during these visits. Right. So it kind of tells me also that I kind of need to work on, on managing those emotions and those energies to make sure it's consistent and at the intensity that is required to make sure that many of the people that I see are equally

satisfied with the care they're getting and that, and, and confidence with the plan moving forward. I, you know, that's something, again, I, I think, I don't, I never would've thought this would've been an issue during training, but of course during training I was much con more concerned about am I making the right decision?

You know, medically, I always wanna make the right decision medically, but that's usually sometimes not the right decision in the real, right? . And that's where Right. Sense. And that's where the, you know, under, you know, you know that active listening really is so critical that adds more than just subtle nuance and make an add just, you know, a whole new layer of, of, uh, of a difference in how you're going to present options.

Tiffany asks Dr. Kim, "What makes for a good experience in office?"

[00:23:33] Tiffany: No, that's a, that's a great, great point. So, Tell me about what you think Al or some of the best, doesn't have to be specific examples, but what makes a very good experience. What if you were going to create some bulleted recommendations for this ebook? 

[00:23:57] Dr. Al Kim: Good question, you know? 

[00:23:58] Tiffany: Mm-hmm. . I know. And I didn't even prep you for it, so 

[00:24:00] Dr. Al Kim: I'm just going cold.

Yeah and there's just gonna be silence and the rest of this podcast is gonna be super awkward cause of it. Um, I highly doubt that, you know. Um, and again, a lot of this really is dependent on kind the time pressures. of that clinic session. Yeah. But the more organized the patient is, and we've talked about this in prior podcasts

and I've heard you guys talk about this in prior podcasts, you know, telling patients, organize your thoughts, right? And try to bring a list in, or better yet, send a list through the electronic, you know, medical record system. Alright. That can prep the provider with, you know, talking points so that there isn't.

So at least there's, uh, you know, an ability for me to be able to say, you know, I've looked at these and I can lump these into three major things and let's just, I wanna run through 'em and just double check whether or not this is consistent with the way you're thinking. Right out of the list of say, 20 things that are there.

Right? So that saves so much time, but also addresses all 20 of those concern. Right. And so, uh, we don't do a very good job of that in our clinic. We don't prep our patients to think like that, right? and again, there's so many r so much room for like, for improvement in how we, how we care for our patients.

But this would be probably one of the next steps that we would do, at least within our lupus center, is try to come up with these type of forms. I, I know that Lupus Foundation of America has some stuff that Glasgow Smith Klein has some stuff through the programs through, uh, for their belimumab product.

And so there are resources we just need to do a better job of disseminating them instructing our patients on how to best use them and then actually using them. Right. And so that's, that really is probably the thing that I appreciate the most when, when you're busy is that all of a sudden you're like, okay, I have six things I need to discuss three of 'em I have to discuss right now. The other three, maybe we can, you know, punt off to other things if we, you know it, you know, it is usually more complicated than that. But that's tho those, that's kind of like the biggest win for me is like, oh, you have a list, let's look at it. Mm.

[00:26:11] Deb: Has your patient ever sent something to you through the medical records? Has that ever happened? Because I never would've thought to do that cause I come with my list of things.

[00:26:20] Tiffany: Do you mean the portal?

Deb: Yes, the portal.

[00:26:23] Dr. Al Kim: Yeah, the portals. Yeah, yeah, yeah. Only once, but well, we, we get it every once in a while, but it's usually like a dire situation that's emerging.

Oh, okay. Yeah. Okay, okay. 

[00:26:33] Deb: Right. And so I was just curious cause I, I love that idea because again, you and your brain can sit there and lump it together in Right how you discuss that in the amount of time you still have. Right. Because again, that's limited.

[00:26:47] Dr. Al Kim: You know, when we, like in our research group, you know, we'll use things like Slack.

You know, other things would be like discord, right? Where it's this asynchronous communication, right? That we don't, we kind of do a little bit in medicine, you know, with phone calls in the past and portal messages, you know, now, but I think we don't, obviously we don't use it to prep for a formal visit and trying to extract out as much value within a very limited amount of time.

Right. So, yeah, that I think is a, something we, we just need to do a better job of just executing. Mm-hmm. . 

Tiffany asks Deb, "What do you think makes for a good experience?"

[00:27:25] Tiffany: Deb, what do you think makes for a really good experience? 

[00:27:30] Deb: So I'm gonna give a shout out to my rheumatologist here in Madison. Um, Christie Bartles. I figured you'd know her. Yeah, because again, she's in the research world as well and she's so good.

Yeah. Yeah. So every time I am at ACR I always try to go in, hop in on whatever she is participating in, and she, during appointments, we'll, tell me what she's knee deep in as far as research goes, but she is fabulous because she brings in this document. So as she's asking how things are going, she's filling in everything on this tear off sheet.

So I get a copy and she keeps a copy and um, it reminds her too. And as we're talking about things, she will write down okay, so where I am thinking is these might be the changes we might need to do, and we're gonna do at least one of them, if not two. And then she always wants what my opinion is it's complete, you know, shared decision making.

She takes notes on everything that I'm saying as far as what's better, what's not better, what parts are really inflamed because she still looks at, um, my hands are a mess. So she'll still do all the documentation of everything and I feel like I am really listened to because she's making eye contact when she can, but she's documenting everything and I still go home with that torn off sheet and she'll go into her little spiel about, okay, so this is what we're changing, and in the very bottom of the document, it's got what I need to do.

So I'm walking away with, I know exactly what I am going to be changing and we're still working on the Prednisone taper, so I'm down to four milligrams from seven and I'm still, she's still actively working on getting me off, but again, I'm 40 years into having steroids. So in my head, but I, I have been doing the taper, but once things start, get a little wonky, I kind of stay where I'm at.

And again, I'll go back and I know back in January we'll be talking about it again. as far as, okay, you're at four, let's keep going. And she'll wanna know what my opinion is and if I'm going to do. Because that's one thing I think about from a rheumatologist perspective. You are giving these orders and you're assuming that these patients are

taking their meds as they're supposed to and the non-compliance. So I mean, do they ever, do you ever a, I'm sure it comes out somehow in the discussion of, oh, by the way, I'm not taking my myself assine anymore, or I'm not taking my steroid anymore, or, you know, those type of things. Like, just gotta wonder how that

blows the rheumatologist's mind.

Dr. Al Kim weighs in on some communication barriers

[00:30:36] Dr. Al Kim: That's such a interesting perspective, and I think you're probably right that most rheumatologists will look at the patient and being like, come on. Right. But, so we looked at this specifically in our lupus patients and because in lupus we have a very high non-adherence rate, and it's closer to

60, 70% if you look at hydroxychloroquine, And we asked the question why. Uh, we had a very talented team, uh, led by this guy Jerry Leon Young, who, uh, got his master's in public health. Tiffany, you know him? He's been on the show. Yep. At SLU with, uh, Elizabeth Baker, and now he's getting his PhD in public health down in the Rawlin School of Public Health in Emory with several people, including Sam Lim, who's another major lupus guy, uh, down at Emory

grady. Wow. So Jared helped us look at this qualitatively through interviews, um, then that's kind of the technique he really is, is mastering. And what he found through, uh, these interviews was the main reason for intentional medication, not adherence, was poor communication between the physician and the patient. Right.

Because Interesting. Right. And, and I think this works at several different levels. Uh, first of all, . If we think back of when we were in school, the thought of taking a test right after a lecture is given is ludicrous, right? You'd be like, I'm not, I'm only gonna get like 10% of these questions, right? But this is what we expect out of our patients in our clinic visits, right?

We basically, I never would've thought of that, right? We basically tell you once, and maybe we'll give you some, um, some notes, all right. Uh, about a medication, but we really don't provide additional mechanisms for you to be able to understand it, internalize it, process it. Right, and this is what we do with studying, right?

Then you're ready to be able to address the, the question at hand, do I take this medication or not? We have no infrastructure for that. All right? We tried to achieve this in the 20 minute visit at the very end, where the first 15 minutes was data gathering, synthesis, clarification and then the decision is made to give two options.

One option is decided on. I mean, it's kind of, it's, it's insane, right? The way we do these, these visits. So I, I can share a link to, uh, this paper in the, in the notes, but this is something that we. It's kind of embarrassing because these are my patients that he's largely interviewing, right. So I'm guilty of this.

And actually it's interesting, a lot of our lupus data, most of it's from our patients, and we're asking some very tough questions and I bet it's, it's made me reexamine like, what the hell am I doing here? Like, why, why, how, how did I get so blinded to the fact that I'm, I'm not doing things the right way. So this was one of those things that we need to do a better job of building communication of methods and, and we're talking plural, like it can't be just verbal right in the office, it's gotta be other mechanisms. And so, we've been working with, Beth Baker at St. Louis University on trying to figure out how do we can, can we make a digital resource that can not only query and identify unmet needs in terms of say social support, but then how do you fill that back in? 

Including informational support from the provider's team. All right. So again, we wanna, yeah, we wanna make it more of a, of a conversation. A huge issue here is going to be a burden to the healthcare provider's team, right? And how, how do we manage that load? I think there's a lot of questions, uh, about that, and I think a lot of physicians, if they're going to

hear this, they're like, you know, I, I need a break, right? Everyone needs a break. No doubt. It's just, okay, there's a, there, there's gotta be a way where we can make this, uh, not so burdensome because this will make the visits less problematic, right. If you wanna use that word. 

[00:34:33] Tiffany: Yeah. So, right. Well, you went ahead and answered the last question, or partially, so I'll answer it.

You can add to it, but you delved into, I was gonna say, some of the barriers, the biggest barriers to communication and different components. So you, I mean, you started touching on, is there anything else that you would add as far as, yeah, this is really a barrier. Yeah, 

[00:34:57] Dr. Al Kim: I, I think, um, I can't remember who mentioned like, simple things like eye contact.

Oh, it was you Deb, right? Yeah. You know, it, it is just, you know me, Tiffany, like, you know, our visits, what I'm trying to achieve is can we have a similar conversation if we were strangers at a bar? right? , yeah. Wait, well, what did I say? Yeah, right. But that, that's kind of the intent. It's kind of like it's gonna be free flowing.

It may be directionless for a bit of time, but at the same time, you're trying to get to just, you know, uh, a very comfortable stage where information is being transmitted back and forth, right? We're trying to remove barriers. That's ultimately at the end of the day, the big biggest thing, because I am new to you as a patient, right?

And yet at the same time, I need to earn your trust almost immediately in order for you to give me, uh, the depth of information and the quality of information, including things that are gonna be personal in order to be able to get to the next step. And so, like for me, I'm going to exercise my privilege as a man because I think for women this is much more difficult because the status and respect issues, um, you know, and our part of the country is a problem for many of our female physicians.

But like, I never wear my white coat. I don't even know where it is. I know I don't wear ties, right? I'll even wear things like this to the clinic. You know, I have kind of this pullover, right? And largely it's because I, I'm, I'm not at all interested in playing the game where I am the doctor and you are the patient.

No, this is a conversation between two people. Right? With two different skill sets and two different knowledge bases. I have a specific knowledge base that's much more generic and broad. Right. For the many thousands of people with disease X, you have a knowledge base for your experience.

Right. And somehow we have to bring everything together. And so it's a lot harder for the patient to be able to relay that experience, I think, than is for us to be able to relay information, right. Of what we are thinking. Right? So that's, to me, the most important personal goal with each new patient is to make sure that there's going to be no barriers.

Right? I'm not going to judge you because I frankly look at myself and think, my God, I got a lot of problems. Right? So, right. But that's kinda how I view it, right? Is that, you know, it's just this is the way for us to just have that conversation at the bar. That's essentially it. 

[00:37:30] Tiffany: And, and disclaimer, at no time were there ever alcoholic beverages served in this doctor office bar.

[00:37:37] Dr. Al Kim: Right, right, right. But But it's been discussed analogy only. Yes. It's been discussed. Discussed. 

[00:37:45] Tiffany: That's true. That's true. Yeah.

How can you get involved by submitting YOUR Good, Bad, and Ugly in office visit stories to AiArthritis

Going to wrap this conversation up because we want to encourage it to be continued by everyone who is listening. We put a lot of different. Subtopics of communication and how it works in a doctor's office

on the table here. We talked about adherence. We talked about diagnosis, we talked about therapy. We talked about not being heard. We talked about barriers. There's so many different components to this, and we all have varied, varied stories and varied ex. Experiences and we really do believe if we collect enough of these stories along the spectrum of what is good, what is bad, what is just not okay, then we can like circling back to Deb's clinical trial story and her poor husband Tim, not loving her, he got thrown under the bus, he got thrown under the bus and never knew it!

But I think now we will be able to work together to come up with some great examples and things that we can build on. So it is a joint effort, that did not even plan that pun, but it worked. So it's a joint effort between the rheumatologists and the patients that we would love for everybody listening to be part of it. Very simple to submit your story. We'll share the link with you also in the text portions of this, but it is at aiarthritis.org/gbu. Good, bad, ugly. So it's very simple to find more information on this and a link to submit your story. You can submit as many as you'd like, and we are just looking forward to seeing where we could go with this

to improve communication in the doctor's office.

Where to find todays hosts and guest

 So I wanna thank, uh, my co-host, Deb, thank you so much for being here. And also Al, I appreciate you taking the time out pleasures. So Al, tell everyone where they could find you or follow you if you want. I know you do. Great posts that I follow on Twitter.

Yeah. What's your handle?

[00:39:56] Dr. Al Kim:  It's much more non not safe for work on Twitter, but my handle is @AlHKim, a l h k i m. If you follow me and a lot of the threads that are on, I'm on, you'll also get hooked up with many of the rheumatologists who are really engaged in social media and you'll be able to kind of see some of the debates and the issues that we're having internally if you wanted to, are in the, uh, St. Louis region. You can simply, uh, Google my name, Alfred Kim and Washington University and my faculty page will pop up and there'll be contact information there if you wanted to. Awesome. Be seen, especially if you ha if you have or suspect to have Lupus.

[00:40:38] Tiffany: All right, so there you go. And then you can find us at AiArthritis on all of the social media.

That's Twitter, Facebook, TikTok, Instagram, I can't even remember them all because I am not the hugest of social media at our organization, but it is at @IFAiArthritis, and all of those handles. And you could also find all of the episodes for this at ai arthritis.org/talk show. And while there, if you wanna hit the big red button that says donate, we certainly would appreciate it because it helps with us in production of the show. So that is it. Everyone please pull up a seat at the table, submit your stories, and together we can change the stories of tomorrow. Thank you all for joining in. Until next time...