Narrator: [00:00:00] Welcome to AI Arthritis Voices 360, the podcast solving today's most pressing issues in the AI arthritis community. We invite you all to the table where together we face the daily challenges of autoimmune and autoinflammatory arthritis. Every Sunday. Join our fellow patient co hosts as they lead discussions in the patient community, as well as consult with stakeholders worldwide to solve the problems that matter most.

Whether you are a loved one, a professional working in the field, or a person diagnosed with an AI arthritis disease, this podcast is for you. So pull up a chair and take a seat at the table.

Tiffany: Well, hello there and welcome to AI Arthritis Voices. 360. This is the official talk show for the international [00:01:00] foundation for autoimmune and autoinflammatory arthritis or AI arthritis for short. Uh, my name is Tiffany and I am the CEO of the organization. Also a person living with a arthritis diseases.

Primary is non radiographic axial spondyloarthritis, but. You know, like most there's others floating around there and I am not alone. I am here with my co host Deb Constine. Hi, Deb. Hey everybody. How are you? 

Deb: I am doing much better. I'm the one that made us late. My, my computer was not cooperating. I apologize.

Well, you know, 

Tiffany: we, we wrote, we were, we were in a role with that. That's, that's. Fine. So Deb, tell everyone a little bit about yourself. Cause you're also a person living with these diseases. 

Deb: Yes, I was diagnosed with RA at the young age of 13 and I have many comorbidities that go along with that. I've had multiple [00:02:00] surgeries.

I'm just finishing recovering from. Reconstructive left foot surgery, which was at the end of November. And, um, yeah, up and moving. And then as soon as I got my freedom back, I got shut back down with COVID. So hunkering down again. 

Tiffany: We, we get, we get that. Well, well, thanks Deb for, um, from co hosting. We, for those new to the show, we have many different co hosts from around the world because we want to make sure we have many experiences and perspectives always at the table and they are.

These episodes are always led by the patient voice and we invite other stakeholders to the table to speak with us as we have today. So I'd also like to welcome Dr. Lisa Zicker. She is from Washington University School of Medicine, a rheumatologist and clinical educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in [00:03:00] training.

Welcome Lisa. 

Lisa: Thanks so much for having me. It's. Really a pleasure to be here today to speak with you guys about one of my favorite topics, actually, telemedicine and e health. So I can't, I can't wait to get going. My engines are revving. Get it. 

Tiffany: Oh, she's on point. Wow. And for those of you, if you're listening, if you're listening and, and you're not seeing this, she, she has come equipped with a little race car.

Lisa: Yeah, I have to show you. Can I, can I brag a little bit? So, you know, with COVID and the mail not working so well, like Amazon Prime is just kind of Amazon. It's not so much prime anymore. Um, I didn't have anything car themed, so I bought a matchbox car and then some hot glue, some pens, and I'll just put that in my pocket.

So now I'm in car. I love it. 

Tiffany: Awesome. She's she's, she's, she's innovative. She's a doctor. She she's beautiful. If you could see her, wow. She's just the [00:04:00] whole package, but hot glue. It holds everything together. That's amazing. That's amazing. So Lisa, why don't you tell us a little bit more about yourself? 

Lisa: Sure. So rheumatologist. I work at Washington university in St. Louis. I treat. patients with all different types of autoimmune diseases, arthritis, lupus, splurter month, the gamut, everybody. And so if you ever come see me in clinic, I do devote half of my time to education. So you'll probably not just see me, you'll see some baby doctors, like the medical students and some residents and some fellows.

I've always got somebody with me. And what is so interesting about today's topic is that I have a little bit of an interest in trying to decipher the key skills involved in effectively Performing or engaging in virtual care and then honing that down into a way that effectively teaches training physicians and already practicing practitioners how to communicate with patients and, you know, I'm really [00:05:00] excited to hear the patient side of things because I only know the story from this side of the screen.

So today is going to be a really educational, I think, and fun conversation. 

Tiffany: Great. Well, you know, that is a great setup for reintroducing to our audience what the show is all about. And it is based on our mission as people living with AI arthritis diseases to help others like ourselves have a voice. as an equal with other stakeholders around the table.

So we like to say these episodes are at the table and, and then we have conversations so that we can hear both sides and then together work on potential solutions that will improve education, advocacy, and research. And in this case, E health. So, um, this is, uh, this is actually a continuation show. So sometimes we do this, we [00:06:00] build, well, not sometimes all the time.

We initially throw a topic, we say on the table as a first show, and then we build on it. So we'll continue to build on this show as well. So we'll, the conversation we have, uh, Learning from the rheumatologist perspective. And then the patient perspective, we'll put the conversation back to the community of all stakeholders to give input, and then we'll continue to develop some solutions.

Now we started with Deb and I, a couple, it seems like forever ago, but it was a couple of days ago. And we talked about the importance of conferences and our attendance in conferences. So you can go back and look at that. that and we introduced e health because we were at ULAR in 2019 and we went to the panel, the session on e health because as an organization, we are international and we know that it is, there are a lot of barriers to participation in having a voice if you live with these diseases.

So we set up our organization to [00:07:00] ensure that as many voices as possible could be heard and we do that a lot through E communications. And, and, and so we wanted to hear how, if we're helping improve patients and get them better access to care, what's happening on the e health side of it from the rheumatology.

So we could translate that and tell patients what's happening. Well, then it's COVID 19 happened. All of a sudden now we all have to use the e health there. There's no choice. And yesterday we had, or Lee. On, and she is a rheumatology researcher from France, and she was on that panel for e health. So we did talk a little bit about the future development of apps and some other e health methodologies.

And then today we get to talk to the rheumatologist and find out what's happening in these offices. So let's start with Deb. Deb, I know you've had some experiences here since COVID 19 happened. And why don't you share some of your, some [00:08:00] of your experiences that you've had? 

Deb: Sure. So I alluded to the surgery that I talked about and I still had follow up appointments to do with my foot surgeon and with COVID and not going into healthcare settings, I've had to kind of put on hold for a while.

Some of my last x-rays for my foot to see if some of the actual joints have actually fused together. And there's one piece that we've been watching and I had, you know, I was scheduled to have the X-ray done and we talked about, you know, I mean we, I, I hadn't. E health appointment with her. So we talked on the phone and she said, you know, I've got standing orders.

So if you're in a healthcare setting, have it done, but I don't want you to come in intentionally for that. So I've been actually on hold waiting. So I do have another appointment in June [00:09:00] that hopefully it'll be safe to go out to, you know, have the X ray done, but there is a point. So if. This was my foot.

They took all the joints out of here. They took the heads and the, you know, everything off of this part here and they fixed a bunion and they fused with plates and screws and there was one piece in particular that she said there's a, there's a point that, um, I think that we're gonna win this one, but I need to keep an eye on x rays to see how we're doing is seeing if it's actually fusing because if not, then the, you know, the, the plates and the screws could fail, which means they break and then they'd have to go back in to fix it again.

So I'm really hoping that's not the case. I've been, you know, obviously kind of, I'm, I'm walking, I'm walking with a normal gait as much as I can, but I'm trying to be really careful with it. The other piece with my rheumatologist that I had a follow up appointment [00:10:00] with was, I started Humira prior to the surgery and it was the second time around with Humira.

I had actually good luck with it the first time. So this is my second time on it, but I also had a break with the surgery and then went back on Humira and, you know, flared like crazy because again, I was using a knee scooter and all kinds of stuff with my hands and wrists and, um, Hips and everything was just not happy because of, you know, all the different obstacles I was using, you know, with trying to navigate around the house. So we've been talking about potentially changing therapies, but with the therapy changing, she, I mean, she offers complete shared decision making. She offers different options and she knows that I understand it. And I mean, I've had this disease since I was 13, so 37 years of having it and lots of different medications.

In the meantime, [00:11:00] one thing we talked about was, and it was kind of a perchance that this even came up. I'm not even sure why I talked about it, but past. Medications. One of 'em was Actemra and I was on Actemra for a short amount of time and my lipid skyrocketed and I was already on a statin medication.

So versus messing with the statin medication, I chose. that scared me, you know, and all that other kind o like, I don't want to, yo my lipids. So I went off she said now with learnin typically what she said h

And I don't see you nodding, doctor. Are you looking for some reassurance? Yeah, I was looking for some feedback on that, on that, that comment. But, um, anyways, so she said, okay, so what do you want to do? Do you want to stay on Humira and stay [00:12:00] where you are? We can add sulfosalazine back in, even though it, we know it hasn't done a lot for you in the past, but it might tweak things along a little bit.

or do you want to go and try Actemra? And I said, you know, at this point with not being able to do follow up with, you know, labs right away and get baselines and, you know, follow up with getting back on Actemra, I chose to stay on the Humira, add the sulfosalazine back and, you know, just kind of, you write things out.

But the other thing that's happened in the meantime is that I developed an abscess. So I'm back, I'm off my methotrexate and my Humira right now for the last month. So I'm not doing wonderful, but I'm on double antibiotics trying to still finish treating that. So it's, it's just been interesting how everything has been snowballing during this time.

Again, you know, lack of x rays for the foot and, um, the option [00:13:00] of changing two medications and having the decision to, you know, ride it out. So I, you know, I hear I still sit on Humira, but not on Humira currently because the app says that it showed up in the meantime. So everything just gets a little bit more complicated when You have diseases like ours.

Tiffany: Well, thanks for, thanks for sharing that, Deb. And I'm going to jump right over and get the doctor's opinion here. So it seems that Deb, you have really had challenges with imaging. Yeah. And blood work. And, and that is, that is contributing to a delay in, Altering your treatments. Is that correct? That's what I would say.

Yeah. Okay. So how, how would you, Lisa, how would you say that doctors or rheumatology offices are handling situations like Deb? 

Lisa: Sure. Yeah. So, um, First of all, Deb, I'm so sorry. You've had all [00:14:00] of this happen to you in the last few months. You've been, you've been put through the ringer for sure. But as we transition to telemedicine and we're cognizant of social distancing and patients on immunosuppression, you know, wanting to stay definitely away from all the COVID cooties out in public.

Yes. That definitely does pose some challenges from the medical side and what it means in terms of getting labs and imaging. I would say, so my personal practice is if something is necessary, we do it. Everything is a risk benefit analysis. So if something is definitely necessary, we find a way to make it happen in the safest way possible.

So I personally have been relying a lot on independent diagnostic sites. And laboratories, because unlike the hospital settings, at least where I practice, unlike mine, I can't speak for other, other places, but unlike at least my clinic's practice, we don't, they are offering the ability to make [00:15:00] reservations.

So you can actually schedule an appointment to go in and get your x ray or your labs done. tested. And several of them, if you tell them you're on immunosuppression, they'll actually give you an appointment in the first hour of their office hours of them being open, which is great because they have just like, they've just done the deep cleaning all, all overnight and no one's touched anything.

And so you go in there with your mask and your gloves on, and that is probably the safest place for you to get your blood drawn. The other nice thing that they're offering is if you do call and you make an appointment reservation, you can check in online and then wait in your car and they will text you when it's your turn.

So you don't have to sit in that waiting room with other people sharing recycled air. 

Deb: That's actually, yeah, that's actually really interesting. Um, you know, none of that has been offered here in Wisconsin. I'm in Wisconsin. So the Madison, Wisconsin area, and they're the bigger hospitals that are doing all these different things.

And it's. They aren't [00:16:00] offering the independent laboratories and things like that. And that's actually, you know, really good options for, you know, people that are immunosuppressed. Yeah. 

Lisa: And then the other option I've been using for patients who are very sick and they really, they should definitely not be going out is either home health or a mobile lab.

So there are in, in the St. Louis area, there are a couple of companies that we can contract with if insurance. So if there's a patient's insurance support, someone will go to the patient's house, draw the labs, and then the patient doesn't have to leave their door. 

Deb: Yeah, and I actually have very good insurance through my husband.

And yeah, interesting concepts. Those are really interesting. One question I actually have for you are the type of telehealth appointments you are having. Are they? By phone or are they v like on computer? 

Lisa: So I do a combination of the two. Okay. And most of it is dictated, well, first of all, I, so I go through my schedule a week in [00:17:00] advance and I pin, I pick the patients that I know need to be seen in clinic.

Like I can't make decisions without Mm-Hmm. putting my hands and doing tactile physical exam on their joints. So those patients. We apologize. I'm sorry, but you're going to have to come in. Otherwise, we're just going to be delaying care. I don't think I can accomplish what I can through telemedicine. And, you know, now all the clinics, they have been given a list of things that they have to follow by the CDC to really prevent the spread of COVID.

And for those patients, we're doing everything we can to minimize risk. So that's number one. Then for those that remain that I think would be eligible for treatment. Telehealth. I personally prefer the video. I prefer the video, if at all possible, because, you know, you can at least show me your hand. I can see 

Deb: things. Yeah. 

Lisa: Yeah. And I feel also like that visual nonverbal communication. It adds to the experience. I'm going to call it. So I love this term. It's called website manner instead of [00:18:00] bedside man.

Tiffany: Do you, do you do a, like a little comedy act that we don't know about on the side? I do not. 

Lisa: And I didn't pick that up. So I can't, I stole that. 

Deb: Okay. I love it. 

Lisa: But that is perfect. Isn't that cute? But I, I think that the nonverbal communication really adds to the website manner. And I think it makes how we communicate Just more personal and more effective.

So then if a patient just cannot, like if they're just too scared, they're just not technologically savvy enough, then we will do a telephone call, but those are pretty rare. There's a lot of apps now that make it very easy. One in particular, I send a text message, there's a link, the patient clicks on it, and then it uses the camera on their phone and we can actually, they like, don't need to set anything up.

It's great. So there's very few reasons why we can't do a video visit. 

Deb: Yeah, that's [00:19:00] awesome. The appointments I actually had were right after everything kind of shut down. So I think they were just still trying to feel things out. So they were both phone calls, but you know, as Things are moving on. I was telling Tiffany, I think yesterday that even on our my chart, we've got those the platforms that are used.

There are video chats for urgent care that are available now and all kinds of photos that you can send and things like that, that are like popping up week by week. I mean, the platform is changing week by week. So it's interesting how much is actually happening. So, um, I think if my appointments maybe were a little bit later, I'm guessing they probably would have been probably video chats or something like that.

Lisa: And I have to say, you know, I, it's just unfortunate timing in the wave of everything that you were caught up with because I was in the same boat of having to really rely on the telephone, especially mid March, early April. And then as. Technology has [00:20:00] advanced with all of this, you know, as you've just described are becoming available.

And so those patients that, you know, we did telephone visits when all of this started, I see in my own patients what you're experiencing and that there's a little bit of a delay because things were just put on pause. 

Deb: Yeah, I think that's kind of where I fell into that bucket, sadly. And, you know, things have kind of compounded in the meantime.

But, you know, it's fine. You know, I'm doing, I'm, I've got my husband and my 21 year old, my millennial here at home that is, you know, they're the ones running out and doing anything that needs to happen. So. 

Lisa: Good. 

Deb: That's good. That's a good side of that. 

Lisa: I have to say though, that's the classic mark of a rheumatoid arthritis patient.

I am in terrible pain. I can't move any of my joints, but I'm fine. It's okay, . I got it. . 

Deb: We're gonna make it prove, you know, you get used to it. You really do. You know, you get used to a certain level of discomfort. I've been, you know, super fatigued being on double antibiotics because I've had MRSA before.

[00:21:00] So they were trying to cover a huge broad spectrum with the abscess. And these antibiotics are knocking me for a loop. And I've been doing a lot of nothing. My husband's like, you just need to get outside, get some vitamin D. And I'm like, 

Lisa: that's not it. 

Deb: I'm like, uh, yeah. Okay. Okay, honey. Okay. 

Tiffany: You know? Well, I wanted, I wanted to ask, as we're talking about.

These appointments and some patients need to come in. Some patients, you know, we're, we're doing the telehealth. Dr. Zicker, have you seen any kind of decline? Inpatients maybe not keeping their appointments or, or just, is there a difference, I guess, in the clinical care that you're observing based on the new way of having to meet?

Lisa: So at the very beginning, people were canceling because they just didn't want to come in. And so once those appointments were canceled, they rescheduled and things just kind of got delayed. [00:22:00] Now that we have all these options. I might have one no show. Like, I keep calling, and I call, and I call, and I call, and they're just not picking up.

I would say, actually, the biggest challenge is the 8 o'clock and the 8. 20 appointment. They don't answer, and I actually end up calling them and waking them up out of bed. So that's, that's always fun. I'm the wake up call. I'm like the concierge at the hotel, but other than that, other than having to drag people out of bed, I haven't seen a tapering of people and wanting to come if anything, they like it better.

It's so much more convenient, you know, you got your phone or you have your computer and they don't have to leave their house, they don't have to worry about timing and driving and parking and all that other stuff that comes along with an appointment. 

Tiffany: Well, that's really good to hear. And I, it seems like in the patient community at first, when suddenly the telehealth, the e health was thrust upon us with the whole COVID 19.

I, [00:23:00] I think that from what I had observed, there was some difficulty getting those appointments to see, because, and I think that's just true of just. Life, things were very chaotic and, um, and I do think, and Deb, correct me if I'm wrong, I do feel like patients are getting more accustomed to the e 

Deb: health. I definitely agree with that.

Yeah. I think that had I had appointments. That would have been a little bit later, I think they would have been more video type appointments versus the phone because it was just, I think, timing and things hadn't quite snapped that quickly into the video chats and stuff like that. But I agree with that.

But sadly, you know, you still feel like you're like falling into that little realm of. It's like, okay, so do I, do I or don't I in different, um, situations? So you mean mean do I or, or don't I get the go [00:24:00] into the doctor's office? Okay. Or you know, that kind of thing. Or go get those X-rays. And I ended up having two be seen because of the abscess.

'cause I had been doing the photos through the MyCharts and they're like, okay, so now we're at a point where I think you need to be seen because. this is a little bit more serious. We don't, I mean, we don't want to lose track of you being a RA patient and infections and I don't play well together. So, you know, it's just very typical how that goes.

And I, in, I had been trying to avoid that and we were missing, like I was trying to send messages to my doctor with these appointments, with these pictures, and then the nurses would get them and they gave me a cream and the cream, like, Ended up taking off five layers of skin. And I was like, yep, I'm Ross.

So I'm stopping that. So I immediately went back to the, my chart and sent them a note and said, I'm not taking the Medicaid cream [00:25:00] anymore because I don't think it's working correctly for me. So I did that first thing in the morning on a Friday, hoping that I could catch somebody or get the doctor to answer me back.

Well, the nurse answered me. At like after five o'clock on Friday and said, we'll send that on to your doctor. And the doctor never got back to me over the weekend. So then by Monday it had already ruptured and it was, it was not in good shape. So I felt like I was like, Oh man, you know, I missed my window if they would have read the note.

But, but then I ended up having to go in on Monday because they're like, yeah, you're not in good shape right now. So it was interesting. 

Lisa: Wow. I'm all I can say is I'm sorry. I mean, 

Deb: no, yeah, I know. And it's just the nature of the beast as far as how that goes. So I wanted to get into a little bit 

Tiffany: from this, the doctor and the patient viewpoint, we talked a little bit about what's working.

Right? And a little bit about what's [00:26:00] not working. We said that some patients it is preferable because we, well, you can stay in bed until the doctor calls you. That's funny. There's a, there's a benefit never thought of before, but not having to travel and there, there are some, and, and as something that Deb and I had learned back in the conference we attended about e health and the benefits is that.

People who have to travel hours to see a rheumatologist and you're able, there's access to those in a rural community. So that's definitely a benefit. Why don't you tell us Dr. Zicker, what are some of the benefits from the rheumatologist perspective? 

Lisa: Well, so selfishly doing video visits also keeps me safe and keeps me out of the line of COVID.

I'm so grateful to all of the emergency room physicians and the intensivists and the hospitalists who are treating patients with COVID or symptoms concerning for it. [00:27:00] But, you know, doctors are, we're, we're human too, and we can get the disease just like our patients can. So from a selfish perspective, this at least keeps me safe and my family safe as well.

So in addition to that, though, I think, so you mentioned improving access to rheumatology services. And in particular, you mentioned improving access for people who live in rural areas. Why would it expand that to. Patients who are underserved in urban settings who take three buses and a train to get to their doctor's office.

And even though geographically they may live you know, shorter distance, they don't have the transportation and are very reliant on public transportation to get to where they need to go. So this improves access in those settings as well. 

Deb: Have you come across any patients that don't have phones or don't have the [00:28:00] technology or are lacking in the way to be able to connect with even a cell phone?

So, um, you know, I think Pretty 

Lisa: much everybody has a smartphone. The issue for underserved patients is whether or not they have the connection and the Wi Fi. So a lot of patients in that scenario, you know, they'll use free Wi Fi at McDonald's. So instead we're, you know, a suggestion might be, well, you know, if you have a car then maybe you can park outside the McDonald's and chat, you know, connect to their free Wi Fi and we can talk that way still in a private setting.

So that's one barrier. I would say the other barrier that I probably encounter um, More so would be the population of patients who didn't grow up with technology and they are just terrified. They are so scared. So I had a patient this week, actually, and it was our first time meeting and she, I sent her the text and I'm waiting like five minutes and nothing's happening.

She's not logging in. So I call her on the phone like, hey, how's it going? She's freaking out. She's like, my [00:29:00] granddaughter's not here. I have no one to help me get on. I'm like, it's okay. I'll walk you through it. So you see the text. Yeah, I see the text. Okay. Can you open the text? Okay, I can open the text.

Do you see the link? Well, what's a link? Okay. Do you see like the letters that don't mean anything with a line on? Yeah, I see that push on that. And I walked her through step by step and she did fine. She did great in the end. She didn't, she just needed a little bit of guidance. And the visit was wonderful because we accomplished everything that we would have been able to, that we needed to, but that first visit, that first time of having to interact with the technology to actually get to the point where you can engage with your physician, I find that that's the biggest hurdle.

And when patients are over that, they're good, but getting to that point needs some hand holding. 

Tiffany: The other thing with that, that I found very interesting is I had just, I've only had a couple doctor's appointments since this is all started, but both of them had different methods of logging in. One doctor, uh, one was.

Essentially like through a zoom, through zoom or something [00:30:00] similar. And then the other one was sending a link to an app on my phone and I had to download the app and then they called me at a certain time and I clicked on a link. But so the point is there's there I've only had two and they were both different.

They were both different methods. And and I, I, I definitely think that if we're thinking of barriers, that's, that's not going to work. Got to be one of the hugest barriers is even if you can overcome it the first time, there's always that chance that the second doctor's appointment will be a different or the third or the fourth or the third, right?

Yeah, because there's, there's certainly no continuity because this is all everybody's kind of scrambling and figuring out the best, the best way to do this. Absolutely. I am curious as far as what's working, you know, what's not working. I think we'll probably keep doing this e health after, after the fact.

I mean, there are, there are some benefits that come to this. Um, Dr. Zicker, what would you [00:31:00] say you would like to see stay, like frequency or, you know, methods? , anything your thoughts? That's a good question. Well, Lisa: I, the, the one, the, the key ingredient I 

think is the ability for me to be able to go through my, my patient list and.

pick who is going to, which patients would actually get benefit from having a telemedicine visit. And I, I need to maintain, I'm going to actually use we, we patients and physicians need to maintain that flexibility. As soon as we lose that, I think that that's when the telemedicine will start to fall apart.

There have been some studies and the opinion of one rheumatologist, I think he's out of Yale. He, he was doing tele rheumatology well before COVID and he described, I'm really sorry, I'm blanking on his name right now. If he's listening, I'm sorry. [00:32:00] But he described this hybrid system of mixing Face to face and virtual visits as the perfect cocktail for health and can, and, you know, maintaining disease activity and being able to do all the things that we need to do.

And I agree with him. I think it's that combination. I cannot, I can't imagine a scenario, especially in rheumatology, which as you girls know, you know, the diseases, they wax and they wait and they flare and they remit, and you never know. It's like riding a roller coaster. You never know what the day is going to bring.

And so I cannot, I, I can't imagine riding that rollercoaster only on zoom. I think, I think that combination of having face to face and virtual visits is the only thing that's going to make the recipe continue to work. 

Tiffany: Right. And I always do this. See, I write lots of notes and I have, I actually have a, b, c, I, I I'm a focus group moderator too.

So that, I think that's where this, this, this is coming in. So. You said, [00:33:00] one of the things that you said when you first, when we first did the introductions, is that you're very passionate about improving communication between physicians and, and patients and in particular, also educating the physicians to be and, and how to do, how to do this.

And obviously the new physicians too, this is going to become something that is ingrained and how they practice, right? I mean, it will be a difference between it's happening right when you get out of school versus you all are sort of adjusting. But anytime there's an adjustment period in communication, it's going to take all sides to really understand what works well for one person might not work well for the other.

And we already have the challenges in Face to face communication that, that we're working on with Dr. Kim in a, in a shameless plug called Rudy rounds. Um, no, but, but, um, you know, one of the things you mentioned was just going [00:34:00] through a list and trying to sort of choose, Which patients might be better candidates for e health and I'm just thinking from a patient point of view I would like to be part of that shared decision making because I wouldn't want a doctor to assume On paper, you know, that I might be a better candidate.

It might be something that causes me severe anxiety, severe stress, you know, just because I might have access to internet or a phone. So what are your thoughts? And this was not on our script. This was not on our pre notes. This is just literally how conversations work. Right. And what are your thoughts about how to address that?

And Deb weigh in as well as a patient point of view, as we're starting to create this Who's going to continue with e health, who's not, and maybe we can start with Dr. Zicker. How, how do you feel, uh, what are your thoughts about including the patient in that decision making? 

Lisa: So I'm really grateful that you brought this up.

I hope I wasn't at all coming across [00:35:00] paternalistic and saying like, I decide that's the end. 

Tiffany: Oh, no, no, no, no, not at all. You didn't. No, you didn't. It just spurred. Because we do a lot in shared decision making at our organization, so it's always top of mind. 

Lisa: Perfect. Well, it's a perfect segue to, to raise this issue.

So the ultimate decision always lies with the patient. So, you know, when I go through my schedule, that's my suggestion. My assistant then contacts all the patients, offers, If, if willing the patient and I think that they're a good candidate and if they're the patient is willing, then we transition to a phone call or a video visit, but the ultimate decision always lies with the patient.

And so if the patient really wants to come in, we make that happen. Or if they're really uncomfortable using the video, then we do a telephone call. So, I agree that the patient definitely needs to have a say in that. I'm interested to hear if, on your side, if you would want to be part of that conversation sooner as opposed to just receiving a phone call and asking what your preference is.

Logistically, I'm not [00:36:00] sure how that would necessarily take place, but You know, we can brainstorm things. 

Tiffany: Oh, she's a natural for the show. I tell you right now, cause that's exactly what we, that's the whole purpose of the show and why we don't do interview style because exactly what, and interestingly enough, when I wrote the initial outline for the show.

And I approached Dr. Kim and, and for those of you who've seen the show, Dr. Al Kim has a recurring role on our, our show and, and Dr. Zicker works with Dr. Kim and he introduced us. So, so we got to give a shout out to him for, for connecting us. Yeah. So, so one of the things that I had said was. We're going to have to have an evolution now into incorporating E Health more so than previously COVID, and as we're going through this transition, what we predict will start to happen is, whether it's rheumatology or any other doctor's office, I mean, they have standard operating procedures you need to [00:37:00] come up with, and we sort of think that will probably happen is the processes will involve what the office staff thinks is best, and It'll come after the fact.

That patients might be asked, and I think to answer your question, yes, I would think that patients would really like to be involved in it before because what we've learned and just thinking of patient involvement in research in general is now there's been what since 2010 in the United States, but before that in Europe and Canada.

Um, all the way since the nineties, researchers have recognized the need to have the patient voice early on because they end up backtracking to figure out what the best outcomes would be. So I think we've proven that need and, and then the question is, as you said, how do we do that? How do we get the patient voice?

Deb: One thought I have is when the scheduler calls the patient to schedule their appointment, maybe offering them the choice then is only a [00:38:00] thought that's coming to mind. Because I'm, I'm thinking that if I was offered the choice and if I have all this stuff going on and I feel like felt safe to go into the probably would right now I've got a lot going on.

was given to me down the it might be a quick video phone or whatever. I think that would work just fine for me. 

Tiffany: Or I'm wondering too, if it's something I know, again, I go to Washington University. I, that's what Dr. Kim is my doctor. And one of the things we have a portal and I get notifications all the time by this is new in your portal.

And for those in most places, whether it's a hospital, a clinic, a Urgent care have these portals now set up. So, um, I'm just thinking maybe a thought would be just to have an email or a notification sent out and say, Hey, while we're going to be developing this next phase of [00:39:00] e health, what would your preference be under this situation?

Just like a pre survey, like a survey, I guess. If you would, 

Deb: yeah, because actually I get surveys that come through my portal and I might not get a notification. But when I log in the next time it'll be in my inbox, you know, like different surveys to finish. I know that I, I have different surveys for different things that I do.

And that actually would be a, I mean, might be a good way to actually accomplish that. 

Lisa: I think when one, so timing wise, I think what would work is if. If such a survey were sent maybe a week or so before the appointment, because things change. So exactly. 

Tiffany: I was just thinking that if, 

Lisa: when you're scheduling your appointment for three months, six months from now, like who knows what's going to happen in there.

Tiffany: Yeah. Right. Perfect example. She might say, you know, Four months ago, she would have said, Oh, I'm totally down [00:40:00] with eat, with, with doing a call and then all of this happens. And she's like, get me. Somebody needs to put eyes on me. 

Lisa: So maybe close. So you set your appointment time, whatever it defaults to a face to face and then maybe closer to the time of the appointment, you can be issued a survey and then you can decide, I will say that from the doctor's perspective, it's very difficult to switch between doing face to face and then video, face to face and then video.

Deb: During a day, you're probably saying. 

Lisa: Yes, during a day. So it's easier if things are, if patients are blocked. So like this is my morning, I'm going to see all face to face visit. This is my afternoon. I'm going to see all video visits. So just having some flexibility, if you're going to convert to a video visit in terms of timing.

During the day is, is helpful from, to at least keep us on schedule and if we're on schedule, you're on schedule. 

Tiffany: That's a, that's a really good point. And it was one of the other questions that I was just curious about in regards [00:41:00] to the scheduling. Are you still seeing on average, the same amount of patients a day or is it, it's just, it's just scheduled in blocks as if it were to be.

Yeah. In an office. Okay. I was, I was curious about that 

Deb: same question. It was going through my mind and I was going to ask, I was going to say, do you see more through telehealth than you do with face to face? Cause I would think face to face. there's so many more moving parts that are happening. 

Lisa: So I see about the same.

I'm very fortunate where I work in that. I have a great support staff. And so when pre COVID, when I was in the clinic, I had an assistant with me. I always had like, you know, a trainee. And so when we ran behind, I had somebody to pick up some of the administrative slack that doesn't exist in telehealth.

So that's true and that administrative burden then falls only to me. So that slows me down and that is probably what limits being able to see even more patients in a [00:42:00] virtual setting than in a face to face. We'll see. Maybe it will change with time. I don't know. 

Deb: That's true. We have one doctor in Milwaukee that we've been associated with, and he has been doing telehealth for probably four or five years.

And he believes that no patient should have to wait more than, you know, you know, three weeks to see a doctor. So he will schedule on to tack on to the end of his day, um, many more telehealth people that are looking to get first encounters. And he's been doing that for, he said it was actually really easy for him to transition to seeing most of his patients through telehealth.

Do you have a preference, what you prefer? Obviously you're probably like, you like to put hands on. people. And, you know, maybe that's an easier, what is, what are your thoughts on that? I think part of the problem in 

Lisa: answering this question is that telehealth and telemedicine and its subspecialty tele [00:43:00] rheumatology was in its infancy before we were catapulted into it.

And as a result We were able to study from an academic point of view, some basic outcomes, but we never really got into the nitty gritty of how perform telehealth and that piece is missing. And so we're all me and I put myself in this category we are all making it up on the fly. And probably some things that we are doing are right and some things that we're doing are wrong and we have no idea because we don't know which end is up right now.

So this physician that you're mentioning, he had the practical experience to prepare him, whereas the rest of us were, we're making it up as we go along. And I personally, for me, I will always feel uncomfortable until I know what I'm doing is evidence based. We all try, we practice evidence based medicine and medicine.

So why would we not be practicing evidence based telemedicine as well? Absolutely. [00:44:00] And so until we can get to that point, I will always default to what I know. Is solid and that foundation will be face to face. However, yeah, having said that, you know, We've talked for about an hour on, on how telehealth and telemedicine can be effective.

And I still believe that, but I, I do think that we have a long way to go. 

Tiffany: Absolutely. One of, one of the things I was curious about as well is new patients, you know, hopefully, and again, where we have to say, this is, this is happening, this conversation in May of 2020. So depending on when you're listening to it, this, We may have figured all of this out, who knows?

Um, but, you know, I would imagine that the new patient, unless it's some kind of just meet and see how your symptoms are, what would that look like if you had to meet somebody for the first time via telehealth or online? 

Lisa: It's harder. It's so much harder. You know, you don't have an established relationship with the [00:45:00] patient.

So, you know, coming up with ways, there's, there's, I definitely engage in some idle chitchat just to kind of build some relationship before you start diving in, because there's no preamble on a, on a video visit. There's no desk to check into, the person to check your vitals, the form to fill out, you know, all this like preamble before the doctor actually walks into the office.

So, I think it's harder to build a relationship from that perspective, but not necessarily harder. You just have to be more cognizant and more focused in doing so. And then the other aspect is, and this has actually been studied and not just in rheumatology, but in other specialties, uh, general medicine, urgent care, et cetera, is that for brand new patients, The time to deciding on a diagnosis is actually longer than if those patients are seen face to face at the get go.

Deb: Okay, 

Lisa: interesting. Yeah, so, and that, there's a lot, there's some controversy there, some studies disagree, but some studies, it seems like that might be a trend. Especially in rheumatology, because, Tiffany, as you, when you introduced yourself, you're like, [00:46:00] you know, I have arthritis, In my spine, but there's some other things there too.

Oh yeah. 

Tiffany: Yeah. Um, yeah. Dr. Kim was like, wow, you were a pleasure to have come across my desk. I mean, he just, cause I mean, I had gone from rheumatoid arthritis and that, well, first undifferentiated disease, then rheumatoid arthritis, then maybe lupus, then maybe Sjogren's is there then now I've got also.

Bichette's is, is on my chart. So, I mean, it's just. 

Lisa: You went to the buffet and you took one of every single offering. Um, but can, but can you imagine trying to weed through that through a video? Like it's just going to, it's difficult face to face, but it takes even longer to do that when you, 

Deb: it just, it takes longer.

Tiffany: Yeah. 

Deb: I, I totally could see that for sure. I mean, that is hard. Cause I know I've had the rapport with my rheumatologist for years and, you know, just bringing up a medication that I only was on for a [00:47:00] short amount of time. I did well with it though during that time. I think that was what I triggered me to even mention it when we were talking.

And um, she's like, well, we've actually learned a lot about that medication in the meantime. And I'm like, okay, had I known that maybe I would have hung in there a little bit longer. Yeah, 

Tiffany: absolutely. I do want to just, as we're rounding out the conversation, I want to Just talk about some ways, we've talked about a few, but ways that we can improve communication using e health, especially when we have these added barriers to engagement.

And I know before we, we got on online here, Dr. Zicker, you had some thoughts on that. I thought maybe you would want to share. 

Lisa: I don't remember what I said. 

Tiffany: Oh, well, I gave you a little bullet. You said be prepared and understanding. 

Lisa: Yeah. So 

Tiffany: that work. Okay. I 

Lisa: am blonde.[00:48:00] 

so I think what is. A couple of things. The first is if this is your first time using whatever technology you're going to have to use to do your virtual visit, give it a trial run, if possible, make sure you know how to connect, make sure you know how to position the camera. I can't, I did a, I did a photo, I did a video visit on Monday.

All I saw was this patient from her eyes and her forehead. And I saw all the, all the, all the imperfections in her ceiling. I mean, I got a tour of like the ceiling of her house. But she just did not know how to hold that camera and there was nothing I could do to coach her out of that. And so practicing before you actually engage with your doctor is really important.

Make sure you can be able to get a clear image of a rash or of a joint or whatever. The second is, just like with a face to face appointment, come with your list of questions. Be prepared for your appointment. As doctors, we prepare too for your appointment. And so it [00:49:00] just, it makes things more efficient and run smoothly.

If everybody's on the same page and has a list of. has an agenda to accomplish and make the most out of your time. And then, you know, if you are, if you're not technologically savvy, or you know that there's going to be a difficult part to examine, you may want to think about having a family member or a close friend with you because they can often help get the best camera angle and they're an extra set of hands.

So I kid you not, I did. I saw a brand new patient on telemedicine and thankfully her partner was there. When she was having hand pain. And yeah, I could look, I could see if she had swelling in her hands, but there's nothing like doing the physical exam to really tell if there's. inflammation in the hand joints.

And so I coached her partner through it. I taught her how to do it and she did it for me. She was my hands during that appointment. And I, 

Deb: yeah, so many times. That's actually really, really cool. And I mean, for you to even think to do that. is amazing. That's really cool. 

Lisa: Thanks. Well, [00:50:00] so we're all just being creative through all of this, trying to come up with creative ways to accomplish what needs doing.

But I can't tell you how many times since then that the family member has been the clutch one. They've been the MVP of the visit because they can, they can do something that I or the patient cannot. So those are some, some suggestions. 

Deb: I like that because sometimes If you have somebody else there, like the patient won't necessarily always give you the right on answer to what you're asking, but then whoever's with you will be like, come on, you haven't been able to do that for six months.

Oh my gosh. My 

Tiffany: dad's head is exploding right now.

As he and my mom are watching this together. He's probably like, I know. Yes. I'm telling you he is. He probably said it right before I said it. He went, Jan, that's exactly what you do. . . 

Lisa: That's funny. Yep. [00:51:00] I see that in, in life. It's, I, I personally enjoy it when it, when it's a husband and a wife, and. One is ratting out the other and the other one kind of gives them the side eye.

That's always fun. Yeah, 

Tiffany: that's my mom giving them the side eye. And your dad just letting it all fly. Pretty much. Deb, I was gonna ask you if you had any recommendations for our patient community on things that that you wanted to add to that as a patient perspective. 

Deb: I definitely agree with actually, if you go, I mean, whether you're in an e health or even in a, in like you go to a doctor appointment, I recommend sometimes what you're hearing, um, you've got two sets of ears there and you're listening together, capturing the information because sometimes the doctor will say something and in your own mind, you'll get stuck.

And that's all you'll be playing in your head, and you won't be hearing anything else that's actually been said in the meantime. So [00:52:00] having other ears that are listening as well to help you capture what the doctor is reporting back to you. That's one thing in particular that I. often think of, because if my husband can go with me, especially to some important ones right after surgeries and things like that, I'm like, Hey, you don't have to sit there and watch them taking the pins out and doing all that kind of stuff.

But actually I really appreciate you being there just to listen. Cause you know, that kind of thing, you know, I think that's, that's one of the main, main things that jumps to my mind right now. 

Tiffany: And I think I'll add to that in kind of a build on conversation that we've had before. is I think now more than ever, it's really important for patients to chart their disease in real time.

So taking photos, taking notes, journaling so that you do have the information prepared in case you will need to submit it online. And and I just think that I just want to express that a little bit more. We've [00:53:00] talked about it before, and I know what our organization we have been Speaking more about how we as people living with the diseases can help facilitate some recommendations for patients on tracking their care and Well, I just don't want people to forget that it might even be more important 

Deb: now to tell your story than ever.

Yeah, I definitely agree with that because if questions are coming up with you, because I mean, I know the week before I'm actually going in for an appointment, Questions are popping into my head that I have to have a pad of paper with me that I am jotting those down because I sometimes in the middle of the night, I'll be spinning on all that kind of stuff.

And unless I've captured it on paper, I can't stop spinning. So if I've captured it on paper, I night and I usually can go to sleep and, you know, get on with the next day. But getting those questions down on paper, writing it down, because there's a reason why it's popping into your head. 

Tiffany: Mm hmm. [00:54:00] So I wanted to ask you, Dr. Zicker, is there, while you have Deb and I on here, is people living with the diseases, is there anything else that you wanted to ask of us? And our thoughts is, I know you're, you're teaching all the. Up and coming doctors or, or things that maybe we can think about improving or working on in the future. So  Lisa: my question to you is from your experiences with telemedicine, either video or on the phone.

I get what worked for you and what didn't at least. receiving or from your side of the screen 

Deb: for both doctors that I had, it was my foot surgeon and my rheumatologist with both of them. I have a rapport with both of them. So we did do the idle chit chat at the beginning for like a couple of minutes just to kind of catch up on how things are going.

And it was seriously right after everything happened that they're like, how are you doing? And, um, just catching up that way, as far as, What is this new norm like for you? Are you handling [00:55:00] it okay? Receiving the information worked out fine. My rheumatologist is very into the shared decision making. She knows that I, I'm a dietician by trade and bio.

I double majored with dietetics and biology, so research is my passion and. I mean, we, we were in, we've gone to these, these, um, conferences and my rheumatologist has actually been in the room with us and I've, I'll like, go sit right behind her and I'm like, Hey, and she's like, you know, so, you know, we've got a great rapport, I think developing that rapport is definitely important and actually checking in to see if they're understanding.

I, you know, I think there's a way of. Especially with video chat, you could tell if someone's faking it, you know, if they're like just nodding and saying, okay, okay. And they're like glazed overlook 

Tiffany: watching, reading their email on the other screen. Or 

Deb: it's like, oh yeah, a Deb, how are you doing today?[00:56:00] 

I'm, I'm making light of it, but no, I think just checking in and you know, the mental health part is a big part with being home. Um, luckily I. Just came off and I'm doing actually remarkably well considering I've actually been in the same place. But again, I'm not by myself. I have my husband and I have my 21 year old here.

I know that people that do have our diseases and live by themselves, that whole mental health challenge has got to be a whole nother level, which I don't experience myself, which I'm blessed for that. But the mental health part, I think is actually really a big part to keep Tabs on as well. 

Tiffany: So my, my experience was, like I said, I've only had a couple.

I have to say, which I'm going to, I'm going to, uh, mimic what was said earlier. It was really the technology was the number one issue. And it was just the differences in the methods that I had to get onto. [00:57:00] There was on one of them, the situation. And again, it wasn't my internet because I was right by the router, but there was, there was just some, some issues on their end where just, again, it was technology.

And when there's glitches, it just, I think it just causes natural anxiety for you. Right. And so I felt myself getting frustrated. And I wouldn't have normally felt that way in an actual, well, I mean, maybe I would have, but I don't, or not for me for other reasons. Um, but that was really for me. Now, I didn't, these were not, this was not Dr. Kim, this was not my rheumatologist and it was not based on any type of thing that they visually had to see. It was really based on conversation. But I did have a situation where I considered scheduling an e health appointment with Dr. Kim because I had some, some lymph nodes in my back, in my spine that were so swollen.

I mean, you could see them. [00:58:00] They were so swollen in my neck, all the way down my spine. And I, well, I thought they were lymph nodes. I don't know. And that was what I wanted to ask him. Are they lymph nodes? Is it my spine? Because I have spondylitis. What is this? Because I was, my husband had to literally carry me out of bed.

I couldn't get out of bed. And so I thought, how am I going to show him my back?

I mean, you might get something different than the back. I mean, I, I don't know. And, and so, so that I thought about that and, and, but I think that that could be solved as something that, that you had said earlier, Dr. Zicker about. Practicing, making sure that, that you have, because that would have been, that would have been awkward, but that was my concern was how do you show, plus you got to think of lighting and I mean, is it going to even show through if your husband wasn't 

Deb: home to even, yeah, that's what I'm assuming because, um, otherwise if somebody else is there, they could have helped you [00:59:00] through that, right?

So I think for 

Tiffany: me. Those were the biggest challenges. What were, how do you, how do you really fully show your disease? If you have to show it, you know, you might not have the best connection or the lighting or whatever, whatever it might be. But other than that, I felt like the conversation was just as if we were face to face.

So none of that was an issue. And it certainly helped not to have to drive or something. sit in the waiting room. I do sort of want to schedule for eight in the morning though. It's just like a wake up call. Hello. But, but no, so I think that that was the biggest issues as far, as far as it goes. And, and I think that moving forward, some of the things that we have discussed, really looking forward to thinking about how to better implement the e health in, especially in communications.

And very interested in learning to what the newer doctors think that are coming on, [01:00:00] you know, because this is, it's like another layer of communication that they're going to have to learn, because I'm guessing that they're learning all of their joint counts and everything, you know, and in person. And now here, you're saying, Kidding.

Nope. Nope. It's going to be done over the phone or video. Right. So I think all of that is just something we definitely don't have the answers for today, but we do need to consider and think about moving forward. So, well, I think I, do you have any other questions for us, Dr. Zicker or no dab or no. Okay, so I don't think so.

I only have one other, one other important question that I wanted to ask you, Dr. Zucker. So do you have sweatpants and house slippers on in the second ? I got, she looks like she's in her office though. I 

Lisa: got dressed for you today, the first all day, all week. I, I have a real shirt on . Okay. Okay. I 

Tiffany: love it. . So, okay.

That wasn't so serious, but air for you guys. But, um. [01:01:00] So, yeah, I, you know, I work from home often and, and, uh, I will some, I admit sometimes, you know, I'll be all dressed up and then I do have like pajama bottoms or sweatpants or something on. Cause I mean, Hey, if you're only from Europe, then that's all you're going to see.

Lisa: I have, I have one patient who always has fabulous shoes. And we're always, and I love shoes, so we're always comparing shoes. And so we had a visit on Monday and I asked her, what shoes are you wearing? She's like, oh, I just have my tennis shoes on. And she asked me, what shoes are you wearing? I was like, none right now.

I took my off . 

Tiffany: See, that's what, that's where I was going with that. That's my stuff. But no, I Seriously though, I thank you so much. Well, thank you Deb, for, for co-hosting with me and thank you, Dr. Zucker for, for coming on and we'd love to be able to continue this conversation about eHealth and as we start to.

It starts to evolve and we need to develop communications, especially being a teaching, a teaching university. And boy, I mean, Hey, we're right here, right here, headquartered in St. Louis. So [01:02:00] great connection to call from Milwaukee. There you go. Exactly. So, but, but, and, and for everyone who, who is listening or tuning in after the fact on this AI arthritis voices, three 60 talk show, which is our official talk show for our organization.

And we just want to thank you also for tuning in and as always, now it's time to put the conversation back on the table for all of you to pull up a seat and join the conversation. And that's how we roll here at our organization. It's all about having. the voices and and the different 

Deb: stakeholders. Yeah, we can actually have anybody who's had these type of conversations to weigh in good, bad, you know.

the, you know, the positives. And again, not having to be into the healthcare situations right now and going in is a benefit for folks like us with being immune compromised. But if you have to, like you gave some suggestions earlier on about options of getting your blood work done and. First appointment [01:03:00] of the day.

Why not? 

Tiffany: Right. I love it. I love it. Right. So if you have questions or comments and by all means, if it's on the stream that we have on Facebook, you can, you can publicize your comment. If you're not comfortable doing that, you can always message us on any of our social media platforms at I F AI arthritis, or you can just send us a message.

You can email us, uh, go on our website at AI arthritis. org and you can contact us that way as well. Other than that, I just wanna thank you all for joining again, and thank everybody for pulling up a seat because only together can we change the stories of tomorrow. Thank you all, and signing off till next time from Arthritis Voice is 360.

Thank you. Thank you.

Narrator: Hey, AI Arthritis Voices 360 is produced by the International Foundation. For autoimmune and autoinflammatory arthritis, find us on the [01:04:00] web@www.ai arthritis.org. Join us again on Wednesday for our special breakout episode where we bring your comments, questions, and ideas to the table. Also, be sure to subscribe to this podcast and stay up to date on all the latest AI arthritis news and events.