[00:00:00] Tiffany: Welcome to AI Arthritis. 360. This is the official talk show for the International Foundation for Autoimmune and Autoinflammatory Arthritis, or AI arthritis for short. My name is Tiffany Westridge Robertson. I am the CEO of the organization and I am also at person living with various AI arthritis diseases.

My primary diagnosis is non-radiographic axial spondylitis. A. I always run out of breath, like when I say all of that, because it's a lot. And I am here today with three fellow patients and amazing advocates and friends and associates here at AI Arthritis through volunteering. So I'm going to, Say hello to Deb to Kerry and to Eileen. Hey everyone. Hi everybody. Hey everyone. Hello. Eileen was waving. Yeah, at first. So I'm gonna have, I'm gonna start off with Deb, have her introduce herself and then she's gonna hand it off and then we'll move on. 

[00:01:58] Deb: Awesome. Hi everybody. I'm Deb Constien. I am in the Madison, Wisconsin area and my primary diagnosis is rheumatoid arthritis.

40 years having this wonderful disease cuz actually. Frankly, I wouldn't have met all of you had I not had it. So it's made me who I am. I'm gonna toss it to Kerry. Kerry, you're up next. 

[00:02:25] Kerry: Okay. Hi everyone. And I will definitely go along with absolutely what Deb said about the one good thing about having all these, these chronic illnesses, these the incredible people that we meet through this.

So I am Kerry Wong. I live in New York and. My primary diagnosis is a rare disease called sarcoidosis, but I also have RA and Sjogren's and a laundry list of other conditions that took many, many, many years, and many, many, many misdiagnoses along the way to get to where I am. You know, there's, there's still always new stuff to learn, and new stuff to diagnose, new stuff to figure out, but I at least am in really good company with really great information and really great resources. And one of those really great people is Eileen. 

[00:03:16] Eileen: Hello. Thank you for such a wonderful intro. My name is Eileen Davidson. I'm from Vancouver, BC. I live with Rheumatoid Arthritis and I'm a regular writer for creaky joints, as well as I have a blog under Chronic Eileen. And research is very important to me as a member of the Arthritis Research Canada Patient Advisory Board.

[00:03:35] Tiffany: All right, and she's just let the cat outta the bag on What topic is today . It's research . So, and not just research, I may add patient leadership. In research. And what exactly does that mean? Well, let me tell you, we were originally going to talk about three very specific topics. Then we realized, well, there's four of us.

We like to talk and we need to keep this within about a 40 minute timeframe. So here's how we're gonna do this. Now, you may or may not know the talk show called AI Arthritis Voices 360. In 2022, we did something we think kind of clever and spinning off of the 360 in the name and what does that mean?

When we start the conversation here and provide you with some great resources and great talking points and things to think about and how to improve rather your healthcare journey, then we don't stop the conversation. Oh no, no, we don't. We keep it going with a 360 it, and what that means is we'll take another chunk of conversation that breaks off of this one and we.

Put it out in any kind of format. So that could be a video, that could be another audio, that could be a social media post. It could be a webinar if it's a form of communication. It can be a 360it. So what we're gonna do today is we are gonna talk about patient leadership in research. We're gonna put that main topic on the table.

We're gonna break out into one of the three segments that we're going to mention, and the other two then will become 360its. So the three topics or the three segments that we will eventually get to when we do all of this together with the main episode plus the 360its will be patient leadership as yourself, being a leader, a participant in research, and how important and valuable that is.

We're also gonna talk about patient participation at conferences and learning so much of what's happening now and how you can contribute to improving your own health journey from that information, and then being an actual patient research partner, that is an equal on the team from start to finish, and it is not necessarily being in the research study itself.

So those are the three leadership pillars that we're gonna talk about eventually throughout the main and the 360it but we're gonna dive right into the main topic of today on this episode, which is being a participant in research. Now I'm gonna mute myself and I'm gonna turn it over to some of my fellow co-hosts here to just talk about what some of these types of research can be.

So the first thing we're going to cover is one of many, so we can do clinical trials, we can do surveys, we can be part of data banks. There's a lot of different ways that we as people living with diseases can be involved. So let's start with clinical trials, and I wanted to just ask who of the three of you.

Have been who have participated in a clinical trial? 

[00:06:46] Deb: I have not participated, but I actually was asked, I was asked to participate in a clinical trial, but I was actually in a really good spot as far as where my disease was. So I said, 

[00:06:58] Tiffany: No . Mm-hmm. , continuity of care. Don't wanna disrupt it. Yep. All right, Eileen.

I 

[00:07:05] Eileen: have, and you know, I didn't even realize at the time I was in a clinical trial because the name kind of threw me off. It's not necessarily always about pharma trials. It could be about self-management or living with a condition. So yeah, I've been involved as a patient in a number of clinical trials.

[00:07:24] Kerry: So I haven't actually been involved in a clinical trial, but I think part of that is that there haven't really, I haven't really seen anything that would really apply to me. Because sarcoidosis is a rare disease, there's, you know, just right off the bat, there's nowhere near enough attention paid to it, knowledge about it, understanding or funding for research.

So there isn't, there aren't that many clinical trials even available to begin with. But then, of those that I have seen because sarcoidosis affects the lungs primarily in 90% of the people who have this disease. Most, pretty much all of the clinical trials related to sarcoidosis I've seen are specifically for pulmonary sarcoidosis, and I do actually have it in my lungs, but that is the most minimal, the, the least

troublesome part of, of how sarcoidosis affects me, and I haven't seen anything that relates to how it affects my joints or my, you know, nerves or, or the other areas. Hmm. But we need more 

[00:08:34] Tiffany: of that. That's a, that's a good point. I, and for those of you who have tuned into the show before, I've already got about half of a page of notes, so I write a lot of notes because I find that the fellow co-host, aka people with lived experience are the experts, and when they talk about these really important points, always listening because

I'm already creating a whole list of barriers and benefits, just listening to what everybody has to say. Part of the point of the show is to help other people living with these conditions as well to think about being part of research, be how that affects you, and weighing the pros and the cons and the barriers and the benefits.

So I have been in a clinical trial. I've been in a couple, but then again, I've also applied for many more than I actually made it into and was not able to make it into the rest of them because of the strict what's called inclusion and exclusion criteria, and we're gonna break off into that conversation here in a minute.

What that means is when you enter a trial or a study, what happens is their testing a therapy, whether that is pharmaceutical or non-pharmaceutical, and there are phases of this trial and it gets a little bit bigger with more people on each phase. They're gonna test things out, but it's typically, Oh, that's an ironic choice of words there,

it's typically the typical, so sort of what Kerry was alluding to is those of us who have anything that doesn't match this sort of general patient tick box criteria that was deemed or thought to be applicable to most, we don't get to be in the trial. So when I was first , well I was in a trial for rheumatoid arthritis.

That tells you something kind of scary right there but as I thought what I have, but when I was in in the trial, it was because I didn't have access to treatment and so that would be a reason why some people might want to be in a trial. I had no other way of obtaining a biologic, and so that was the best option for me to be able to be on a medication.

So access, access to a treatment. And I was so early on that I was qualifying, but then as I got more complex, not so much anymore. So , so that kind of sets the stage here on if you want to be in research, and again, it doesn't have to just be a trial, we're talking about surveys or which are much easier to be a part of or data banks much easier to be a part of.

But why are these important? I'm gonna turn it back over and ask everyone else on this panel here. Why would you say it's important for. Patients to be involved in research. Go ahead Kerry. 

[00:11:32] Kerry: Okay. So I think that, you know, one of the things, especially in the rare disease space, but pretty much in, you know, so many of these autoimmune autoinflammatory conditions, There's so much that we don't know and we don't have really good treatments, or it takes us years to get diagnosed because there is so much we don't know.

And the only way we will ever know is by having these, whether it's surveys or clinical trials or you know, all different ways of researching the people who have the conditions and the things that we do about it, and for it and with it, that's the only way we're ever gonna be able to learn enough to do better, and we all deserve better.

[00:12:21] Tiffany: Eileen. 

[00:12:21] Eileen: I can think of so many reasons why it's important for us to get involved in studies for one, recruitment is difficult for researchers, so the more of us get involved, the stronger their research is and the more findings that they'll find, the more relevant it will be to patients as well and it, you know, it helps advance our care or, and the future of our care for people that are involved.

It, you can learn so many things, participating in research as a participant sometimes, because even if it's not in a, a survey, you could have hands on experiences with some studies and learn so much along with the researchers. 

[00:12:58] Tiffany: Deb, do you have anything to add? 

[00:13:00] Deb: Yeah, you know, as far as this goes, it, it, it just branches off so beautifully as far as that goes.

Because again, I've done so many surveys. I've had this disease for over 40 years. You know, the focus groups that, that there are forward Nate data bank, I'm always getting their surveys and usually it's over the phone. That's the way I choose to do it and update all of my information every six months because if they didn't have, like, what I really liked about what you said, Eileen, is it makes if more people participate in these studies, it makes the data that much more robust.

There are so many different things that can kind of play off of that. So I have different experiences than Eileen. I have different experiences than Tiffany. I have different experiences than Kerry, so we're adding more information to that. So it, it just makes the data that much more robust cuz if you only have 20 participants, it, it just shows a small, small, small little dot on a map as far as what that actual research did. If you have 2000 people, that just makes it so much more robust. I could go on and on 

[00:14:20] Tiffany: and that's what the 360its for. So , we can break off to as many conversations and examples and topics as we'd like, but in circling back to a little bit of what almost all of you sort of said here, I wanna take that opportunity to explore that a little further.

So one of the things, and we have outlines that we're looking at, but sometimes something said and it didn't make the outline, and one of the things you just said, Deb, it's relevant, it's gonna tie back to some things that are on this, these bullet points here that we wanted to mention, and that is precision medicine.

And we started by saying clinical trials or these, these research that have the phases and they invite usually that general patient population. And we're again gonna dive in a little bit more to that here and why it's important for as many people to have a voice and be part of research as possible because we don't tip all the boxes.

That is just the fact, and that's why for those of you who use for example, biologics or these, these pharmaceutical drugs, once they get to market, it's typically only about 40% that do well, and the reason why is because the people included in the trials are general patient population, and honestly, most of us are, what we would say is atypical because we have comorbidities, we have complex non tick the box type of presentation.

So when you mention the 20,000 Deb, I think something that's really good to think about too is as the studies move forward and we're in this world where we're getting into precision medicine, which. Studies of your biomarkers, your blood, your tissues, your DNA signatures, and how that is going to tie into matching you not only or not only to help with diagnosis, but matching you with the right treatments at the right time for the right person.

And in that respect, those trials are gonna get smaller. They're gonna need comorbidities and they're gonna need subgroups, and that's why we really also wanna mention this today. If you haven't been able to be in a trial in the past, that does not mean that you won't be able to in the future, because we might be needing to study more groups of 2000 or 1000 or 500 to start to connect the dots of what, why is this group responding to this therapy better than this one?

It might be something to do with our genetics or our biological makeup, so to speak. So let's, let's turn this over. I want, you know, Kerry, you mentioned a few things when we were going over kind of our pre-discussion here on just that there are different types of people, there are different subgroups, there are different types of trials.

So could you just go in a little bit more about sort of the comorbidities and the inclusion and the exclusion? A little bit more about the importance of these subgroups and as you lied to say, autoimmune soup . 

[00:17:26] Kerry: Yes, I, That's Autoimmune soup is like my favorite expression. My favorite description of this, my rheumatologist said that's what she was diagnosing me with and I just absolutely love it.

But I mean, I think this really kind of feeds off of what you were just saying, Tiffany, with us being the atypical presentation and you know, typi, you typically, usually when doing research, conducting a trial, whatever the case may be. They have the certain criteria they want people with this diagnosis and without these problems.

And most of us then can't participate because we have these problems. So if all of us, you know, or most of us have these other comorbidities, you know, like I said, I have sarcoidosis, but I also have RA and I also have Sjogren's syndrome, and I also have fibromyalgia, and I also have chronic migraine, and I also have endometriosis, and I also have Hashimoto's thyroiditis.

And you know, the list, the list can go on. We, you know, we sometimes say, All right, do we want the list alphabetically or head to toe or chronologically, because there are so many. When so many of us are atypical, and not that you can see me, but I'm giving finger quotes, as I say, atypical, if so many of us, if the majority of us have these comorbidities, the atypical really is typical.

And so if we are not participating in this research, we are not the ones being studied. Then who's left? and, and there's nobody left to really participate and there's nobody left to learn from. And on the flip side here, we all are typical in our atypicalness and we are the ones that they really do need to study.

We're the ones that they need to see how does this medication, how does that treatment, how does this procedure affect someone with X diagnosis and Y diagnosis and double Z on the side? That's what we need to learn and that's the big, that's where we're falling through the cracks, and that's where. We need to make the biggest change.

[00:19:49] Tiffany: And the whole issue of the majority of people who participate in trials are people of white descent. And we are sitting here a group of four white people, and we wanna make sure also that we talk about the importance of all people. So we've talked about the importance of all subgroups, all subtype.

Because we do have these individuals, but we need to make sure what, what Kerry just said, if, if it's somebody who's like you, those people like you need to be in research so that the research that's coming out and putting to us to be using these therapies, we need to make sure that it is safe and effective in all people

and so it, there are certain medications that are proven to not work so well in the black population or other different subgroups, but we need those people in research. Yeah. 

[00:20:50] Kerry: You know the other thing is because so many of these diagnoses. There's a different incidence in different demographics. They affect different demographics differently.

And I know last month there was a really great episode on diversity, equity, inclusion and accessibility. And, and so there was a really great discussion on that diversity. Go back and listen to that one when you have a chance. But, you know, taking something like sarcoidosis as an example it affects African Americans at a much higher rate than Caucasians and any other race, and it affects African American women even more so.

And yet, like Tiffany said, in so many studies, the people who participate are. White and, you know, it's, that's all fine and that that's all fine and good, but it's not good enough. It's not reaching and and matching the people who have the diseases.

[00:21:51] Tiffany: Eileen, did you wanna add anything else?

[00:21:56] Eileen: Yeah. Unfortunately, a very common theme among a lot of studies, a lot of research. Only tar seems to target white women and fifties to sixties, but that's not necessarily the true representation of any condition. And unfortunately, getting men involved is particularly very difficult. And so that's why I think like the more diverse

patients that get involved it, the research becomes, like Deb said, more robust,  but how do we start?

[00:22:27] Tiffany: Absolutely. So those of you who are listening and we're, as we're talking about this research, so we focused a little bit on trials here and as we're kind of summarizing what we're talking about, there are a lot of opportunities for us, and I think part of the barrier is how do we find those opportunities?

How do we learn about them? We already know, especially when clinical trials, our doctors do not typically mention clinical trials unless they're leading a clinical trial, and definitely not ones in non-pharmaceutical, which I think, Eileen, you brought up a really good point when we started this conversation that I wrote down as a barrier.

I mean, basically you don't know, which don't know. And you didn't even realize in some of the research you were participating in, Wow. This is like, this is a clinical trial in, in a respect, but it cuz it's non-pharma, which could be what was a fatigue or exercise, What was it specifically that you are participating in?

[00:23:29] Eileen: Well, the one study that, or two studies that really kind of stick out in my mind because they extremely benefited my self-management well, living with rheumatoid arthritis and taught me so much about this disease, was participating in studies on exercise. One study the OEM IA study, which involved a Fitbit and an app designed by a physiotherapist, Dr.

Linda Lee called Operas and I was monitoring my physical activity and my symptoms, so that taught me about managing my disease, how my disease affects me during certain times of the month, For example, like how my period wipes me out or causes more pain or makes my sleep worse. How stress affects me or how my infusions were affecting me, or about being able to tell that my infusions were wearing off for me because I could see that my pain and my symptoms were spiking further and further away from my infusion date, which was like a red flag that I was able to bring up to my rheumatologist. So not only did it help me learn more, but helped me communicate with my rheumatologist better, and it was so motivating to get into exercise with RA cuz I kept wondering, am I doing too much, am I not doing enough?

This kind of showed me how, well I don't do it every day now, but it's kind of ingrained those behaviors into me and I can fall back onto it when I'm starting a new treatment or after, you know, the many bumps that come with chronic illness. And then the other study was about how to strength train with rheumatoid arthritis.

And the amazing benefit that I got out of that was the researcher kinesiologist came to my gym with me and showed me how to exercise, and that was so valuable to me because this was somebody who actually understood RA. You can't just go to a personal trainer and say, Hey, show me how to exercise. Nope.

Doesn't work that way. I ended up hurting myself, so it just gave me so much motivation and education and information I needed to get going, but it was so validating to talk to my specific concerns. Two very important topics. Physical activity and I guess strength training's, also physical activity, but just be able to talk to somebody about my specific barriers and to work those out was something so valuable to me.

And I got that participating in clinical trials without even realizing I was in these clinical trials, because they're not always based off of medications. They could be about really important topics to you. They could be about fatigue, brain fog, they could be about working with arthritis. There's so many different types of studies out there and it's so important to find where to get involved in these because you're not only helping the research, but you're helping yourself at the same time.

[00:26:09] Tiffany: Ooh, I love that. I love. We're gonna have to That's, you're gonna hear that repeated. We're gonna make an audiogram of that. . I like that you walk. I like that. Saw you react. So, and, and I'm laughing too because you said about exercise fatigue, brain fog, et cetera. And I had written down ahead of time, I wanted to ask, so Deb and Kerry would, if you were given the opportunity, you qualified, let's just, let's just for argument's sake saying you, you met the inclusion criteria, would you participate in a study

to help improve fatigue? A hundred percent. Absolutely. Yep. Eileen's shaking her head too. Me too. Four. Outta four. Would you participate in a study that could improve brain fog? A hundred percent, yes. What did you say? Brain fog . 

[00:27:01] Kerry: That was perfect. 

[00:27:01] Tiffany: Well played very. I see what you did there, . Yeah. And see my brain fog made it go right over my head.

Cause we all talked, I I've got some bad today. So, so the point in that little mini breakout poll there is to show there, I think there is interest from. Our community too, cuz I would find complete value even if it didn't work. I feel I would learn something, I would learn what didn't work. , I mark that one off.

[00:27:36] Eileen: Yes. I also wanna bring up that it's not just the researchers or clinicians, whoever's doing the study that you'll learn from, but if they do focus groups over whether person or Zoom you, there's a guarantee that you will also learn from the patients involved 

[00:27:50] Tiffany: well said Kerry. 

[00:27:52] Kerry: Everyone was sort of saying, you know, there's so many different types of studies and you know, I think that's really, really important.

We always think of, you know, something like clinical trials in terms of you go to a place and you take a medication or a placebo, you don't know and you see what happens. And that's kind of, I think, you know, it's what we see in tv, it's what we see in, you know, the media, whatever and that's what we think of but

learning about these conditions and learning about how they affect us. That comes in so many forms and there are, you know, so many places that we can participate in studies from something as simple as a questionnaire, a poll, just like you know, Tiffany asked us to online surveys that ask you about different things that you experience and different

ways that they have affect you and different things that you have tried to, you know, focus groups where a bunch of people get together. And so there are so many different ways to, to participate in research, to get that information into the hands of people who can put it together. Make something out of it that helps, you know, again, as Eileen said, it's, you know, the more it helps them, the more it helps us.

[00:29:12] Tiffany: Absolutely. So let's ask this question. You know when is participating in research and let's use a clinical trial as the default here. When is it right, I mean to participate? How do you know what are, what are some of your input on this? I know Deb, you had mentioned a couple earlier. Go ahead. 

[00:29:36] Deb: So when I was asked, it was my rheumatologist was asking me to become part of a clinical trier on new medication that was coming out, and I

went home and talked to my husband about it and decided, we decided, you know, I'm not gonna poke the bear. I, I'm actually in really decent shape right now with a given medication I'm on right now. I didn't want to, so that was an informed decision that my husband and I talked about and went back and just let the doctor know that no, I don't think this is a good time for me.

Mm-hmm. as far as my walk of life at that point. 

[00:30:15] Tiffany: Yeah, that's definitely one that I think, especially in our diseases, it's gonna be different. Yes. Whatever conditions you have, if the, the reason for participating in a trial will vary, and for us it's probably to achieve continuity of care. So if you already have continuity of care, it's not usually going to be something recommended.

So access to treatment, you've tried everything, or maybe you're in the process of shifting something's not working. That's an also a potentially good time, but it's very, very important to speak with your doctor in a, in a process that we call shared decision making, where you can weigh the pros and the cons for your individual situation.

And see if this is something that might be right for you because there are, somebody mentioned it earlier, what's called a placebo, and that's how they, in the studies that are seeing the efficacy or how well as treatment works, they're, they're testing it against, People who actually aren't on it and they don't know they're not on it, that's what the placebo is.

So you could be in a arm or a section who was just randomly chosen not to actually be on something. Now, I do want to make sure that everyone knows if that does happen, there are safety precautions put into place on these trials where they're not gonna let you flare for the duration you know if it seems that you're going in a wrong direction or you know you're not doing so well, they will remove you.

They will, sometimes there's like a little safety where you could possibly go on the medication, so it just wa that's something you just need to talk to your doctor because they're all designed differently. And then there's some that are comparison from one treatment to another where everybody is, is pretty much on there.

So, just wanna mention that Eileen, you've got your hand up.

[00:32:13] Eileen: Yeah, I think there's a couple reasons why somebody should and shouldn't get involved in a study. I know. I think there's one that you should ask yourself. Am I gonna be overwhelmed by this? Do I have too much going on in my life? Is my mental health not doing too good? Is my physical health not doing too good? Can I take this on? Because some studies do have, you know, a lot of involvement or could just be too overwhelming for somebody. I also think, like, do they offer an incentive? That is something that makes me want to participate in a study and shows that it does get more participation.

I want, you know, I want to feel valued as a participant or, you know, so not all studies do, of course, like some of the surveys don't. But depending on, you know, how much time, how much value, how much expertise I've had to give in, am I gonna be compensated for that or my time, like travel costs and do I have a passion for the topic that they're talking about?

If it's going to be something that bores me to death, am I going to want to be participating in this, or is it something that I'm really passionate about, I want answers to, or I want to teach you know, future healthcare workers about, those are things that I always think of, and I always think that one of the best times to get involved in research is when you're newly diagnosed because it can explain so many answers and guide you into ways finding, you know, proper research, proper information about these conditions, rather than a lot of the contradictory and misinformation you can find on the internet.

[00:33:49] Tiffany: Absolutely. Anyone else want to add to that recommendations? Why or why not or, Go ahead, Deb. 

[00:33:57] Deb: I do have one more. Point I've been hemming and hawing thinking about sharing this. So the other thing, the other reason that was going through the dialogue between my husband and I was with a clinical trial, I was, I was thinking to myself, Okay, so if I was put on this medication and it did work, what happens after the study's over and the medication isn't, isn't available to me through my insurance company?

I, That is another reason that kind of made us kind of steer away, because what, what if I couldn't get that?

[00:34:37] Tiffany: So I, I can tell you that in most clinical trials that the patient will be offered a duration of time to continue on. Now of course that's gonna change. I'm trying to remember, My gosh, it was so long ago when I was in there. I wanna say it was a good six months to a year. Okay. Uh, That I was offered to stay on it. But of course that, you know, can't take that as the standard cuz every trial is different. Right. That's just what mine was at the time. But that's a good point. And I think that that's something that at our organization we should actually look into a little bit.

[00:35:16] Deb: Cause that was something that definitely did affect me. Cause I'm like, well, what if it does work and then I can't get it ? It it, that was like a bit of an apprehension of, again, I, I value research and every p part of this and clinical trials are so important. So I don't wanna diminish anybody's thoughts on thinking about it.

It was just one other segment that kind of went through my point of going through with my husband, we, we just kind of talked through, cause I mean, again, we had a very long conversation about it, pros, cons, we kind of listed 'em up next to each other, all of those things. 

[00:35:52] Tiffany: Okay. Kerry, you had something to add?

[00:35:55] Kerry: Yeah, Eileen mentioned, you know, some things to think about and I think those were things that we wouldn't necessarily. Think that we need to think about, you know, that like, would this be overwhelming for me? And, and you know, there are sometimes just logistical reasons why we might not be able to or might not choose to participate in a trial.

 You know, if it's conducted in an area that's too far away, if it's practical details and, you know, so one of the things that I've been learning about a little more recently is that there is a move to address this kind of thing in something called decentralized trials. So what those are is basically it's trying to remove those barriers to access to clinical trials, and whether that means it's done virtually rather than you having to travel somewhere

or, you know, different things of, of how you participate, where you participate, how often you participate, what you actually do, all of those things and all the reasons why we might want to, but not be able to, there is this big movement to try and address that. And of course, you know, there's, there's a long way to go,

there always is. But the only way we can get there is by continuing to do this, to learn about these trials, participating in sharing the information, letting anyone, everyone know, Hey, this is really, really important. 

[00:37:28] Tiffany: And I'll add as we do 360its on this topic of patient leadership and research, one of the, the ways that that is being addressed is by having patient advisory panels.

I know because I have been on them personally, where they're asking patients how can we improve clinical trials? So that is something that if you're interested in getting involved in research in that capacity, make sure you tune into our 360its because we will talk a little bit about that. But before we start to wrap up, Eileen, you've got your hand up.

So what else would you like to add? 

[00:38:02] Eileen: Yeah, I just wanna add in that the advancing the ability for other people to involve themselves in research is so important because so many rural areas have no care or they don't have the proper care. So it's opening up a whole demographic of people who are often not involved in studies because they are, you know, living in a place where it's in particular in Canada.

There's people in the Yukon have to travel 14 hours to even see a rheumatologist or get in their office. So it involves a demographic of people that are, i, I hate to say it, kind of forgotten about. And then also I love seeing how that they're advancing more research studies to be involved in capture people who do not speak English as a first language, because it's not just us whites that matter too.

[00:38:49] Tiffany: Right. No, absolutely. So as we start to wrap up this initial segment here of the patient leadership in research, and we will spin off into, again talking about different ways, so that could also be being on the flip side, being part of the research team, being part of an advisory team. There's a lot of different ways that you can get involved in research.

And then we're also going to spin off and talk about how important it is to be involved in conferences or these learning event. And we'll teach you how you actually can be involved in our, Go with us to conferences program hosted by a arthritis. It's an amazing program. And then we also have people like Eileen or Chronic Eileen, who as she's known in the community, who has many different ways of bringing back and reporting information as well.

Eileen, you have your hand up.

[00:39:47] Eileen: Yeah. I just wanna say for people that like Kerry who are not finding studies based off of their rare disease, look for studies based off of chronic illness or disability or chronic pain that don't have specifically adjusted disease aspect. If you wanna get involved, that's another great way to participate.

[00:40:03] Tiffany: Absolutely. And, and that tied us right into how do you get more involved? So, In addition to that, you can also go on aiarthritis.org/clinicaltrials. Now on that, we have some advice on how to talk to your doctor, and we have developed patient led patients developed a shared decision making tool that is designed for our patients by patients so that you can start thinking about clinical trials and what makes it unique,

like most of what we put out there is people with lived diseases is we know that often our doctors will not bring up the option of a clinical trial if we are interested. So we also are there as mentors and people who can answer your questions and help you develop and craft questions and approach your doctor with the tool so you can use it before you go into the office.

You can use it while you're in the office. You can use it after talking to your doctor. So we are also there to help you peer led advice and you bounce off how you can approach your doctor to talk about these more. There is also clinicaltrials.gov, which is somewhere that people might be very familiar with.

There is a link to that on our clinical trial page as well. And you can also sign up for our AiArthritis Voices program, and you can find that on our website. It's a free service. where You will actually meet Leila. So shut out to Leila, who is our health education and engagement person here at AiArthritis,

also a person living with lupus nephritis. So we do keep it in the patient family. So you'll be talking to a real person with live disease who will, who will customize the program to things that are interest of you, and that can include research. So before we wrap this up, I just wanna say thank you to everyone.

Kerry, where can people find you? Because I know you've got some awesome patient advocacy stuff going on. 

[00:42:11] Kerry: Thank you. Yes. So I am FLoatlikeaButtahfly. Pretty much everything that I have is FloatlikeaButtahfly. But one thing to note, as I said earlier, I am from New York and I spell it the way we say it.

So it is B U T T A h fly. And so you can find me at my column at sarcoidosis News is float like a buffahfly. My website is float like a buttahfly, and you can find me on, on Facebook is float like a buttahfly and everywhere else it's just @buttahflyk and you will find me everywhere and you can float along

[00:42:46] Tiffany: Okay, that was a weird laugh that just came out of my face, . And then Eileen, where could everybody find you?

[00:42:55] Eileen:  I've made it very easy. Everywhere on every social media channel. I'm just chronic Eileen, c h r o n i c eileen, E I L E E N, and that's also my blog, a chroniceileen.com. You can also find my words on creaky joints and various other health websites.

[00:43:16] Tiffany: Google me, you'll find me. All right. Perfect. You can find Deb and myself @IFAiArthritis and we are on all social media as IF, which stands for the International Foundation IFAiArthritis, so that would be Facebook, Twitter, YouTube, tikTok Instagram and LinkedIn. I don't think I forgot any of them, but you could also make sure that you check us out at all of the work we do at AiArthritis.org and while they're, please consider a donation because.

We run this show a lot on the generosity from people who tune in. So we appreciate all of you who have lended your support, but most importantly, make sure that you pull up a seat at the table, share our resources, learn from our resources, get involved as much as you can to improve your own healthcare journey, because only together can we change the stories of tomorrow.

Thank you all and make sure you tune into the 360. It says We continue this conversation.

AI Arthritis Voices 360 is produced by the International Foundation. For autoimmune and autoinflammatory arthritis, find us on the web@www.ai arthritis.org. Also, be sure to subscribe to this podcast and stay up to date on all the latest AI arthritis news and events.