[00:00:00] Tiffany: Welcome to AiArthritis, voices, 360, the podcast solving today's most pressing issues in the AiArthritis community. We invite you all to the table where together we face the daily challenges of autoimmune and autoinflammatory arthritis. Join our fellow patient cohosts 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 AiArthritis disease.

This podcast is for you. So pull up a chair and take a seat at the table.

Welcome to AiArthritis voices 360. This is the official talk show for the international foundation for autoimmune and autoinflammatory arthritis or AiArthritis for short. My name is Tiffany Westridge Robertson. I am the CEO of the organization and I am also a person living with AiArthritis diseases.

The primary being non radiographic axial spondyloarthritis and I am very, very happy to have others at the table with me today to talk about a topic that was so big and so important. We had a tough time just deciding what was gonna fit into this one show. So you're gonna hear from us more and more and more on this.

So I am here with Charis and Estela. Hello there, both. 

[00:01:39] Estela: Hello, and I'm excited to be back here with you. So thank you for the invitation and obviously to discuss such an important topic. My name is Estela Mata. I'm one of the co-founders of Looms 4 Lupus, nonprofit organization that works and collaborates with other organizations to bring in valuable information, support, and advocacy efforts to the community.

So I'm excited to be here. 

[00:02:04] Charis: Hi, you too. This is Charis Hill. My pronouns are they, them, theirs and I call myself a proudly disabled autistic trans person living in poverty. I just made that up. I don't, I don't actually know but I'm glad to be here again and to join the two of you to talk about this really important topic.

[00:02:25] Tiffany: And why don't you go ahead and just tell us what that important topic is, Charis. 

Yay. 

[00:02:30] Charis: We're gonna talk about DEIA. Now that is a quiz show topic, it, it stands for da drum roll,, diversity, equity, inclusion, and accessibility. We are going to talk about all these letters during this episode, but we will spend a little bit more time on the, a part, the accessibility part, because it often gets left out of this conversation.

[00:02:59] Tiffany: Absolutely. And you know, we've, I think we've heard a lot about DEI ever since COVID, but this is not a topic that is new by any way, shape or form and it has been really thrust forward into our community, into all the communities into the world. And we are very happy to be able to shed a little light on it from the patient perspective and what it means to us in our community.

So first we just thought we would break out and just define each of these for you. And we thought maybe we'll go around and say what each of these, you know means to us or how we may define them. So the first one, the D being diversity. I always say that it's having a range of different dimensions. I like saying the word dimension, because there's, there's so many facets that go with that in itself.

So that would be racial, ethics, socioeconomic different cultural backgrounds, various lifestyles experiences, all of the things that make us who we are and having that diverse level of participation, involvement, human being a human in itself. So I'll pass it on to care, to add to that or provide your own definition.

[00:04:21] Charis: Thank you. Yeah, I, I was sitting here thinking while you're talking, it's definitely a range and it's I think when I think diversity, I think about identity and culture and environment, you know, where we come from in terms of what has shaped our life, whether that's the community around us or what's going on in our biological bodies to, you know, how society impacts our movement through the world.

And I think about all of those groups together is what diversity is. 

[00:04:56] Estela: And to me, diversity, you know, kind of what you guys were saying, you know, it's about a variety it's dimensions, but it's also just making sure that everyone right is included. So diversity is including every single person from different cultures, different backgrounds, lifestyles that are living in different environments, different places.

So it's a little bit of everything and that's really what diversity is, is bringing a little bit of everything to the table. Kind of like the conversations that we are having here. You know, I love that just in this panel there is diversity and, you know, that's what we want to see. We want to see everyone represented.

[00:05:41] Tiffany: Absolutely. And before we go into the other letters in here, I think that it's in keeping with why we do the show is we want to have all voices at the table, all of those perspectives, all of those opinions. And I started this off by saying, this topic is so big and there's a, there was a fourth cohost shout out to Kerry who said at the last minute, there's so much to say I'm gonna just bow out for now, but that's okay because this show called AiArthritis voices 360 in 2022, we started 360its and what that means is any topic we feel like we need to talk about more.

Any comment made on the show is fair game to spiral out into another conversation in many different mediums that could be videoed, social media, email, text, you name it. Anything goes if it's conversation, because we want all of you to be able to also be included. So just because we're starting the conversation here, that's exactly what we're doing.

We're starting it and we're inviting you all to then continue the conversation as we dive in deeper past the end point of the show today, which will include Kerry. So I just wanted to throw that out there. So let's get back here. So let's go to the E as we go into equity. And did anyone else wanna start on this one?

I started on the last. 

[00:07:14] Estela: I can say I can start. So to me, equity means being able to provide and meet the person where they're at. So this means providing the services or equitable services to the individual, whether it is in healthcare or anywhere. So meeting the person where they're at and assessing their needs first and foremost.

So that's what, how I feel with equity. Some people may need a little more help than others. Some people need more or less assistance. So meeting everyone where they're at, 

[00:07:48] Tiffany: I love that Charis yeah. 

[00:07:50] Charis: I wanna go

I think, and I think there's no wrong answer, right? When you think about DEIA and you're familiar with, with the acronym and the concept of all these and just building off what Estela said, I think, you know, thinking about equity is, you know, about removing external forces that prevent someone from participating fully barriers is another word for that.

And I, I don't think I can say much more than that other than repeating myself. 

[00:08:25] Tiffany: no, I think, I think those are both very excellent. And I think visually, if you just, we've had different diagrams that maybe you have all seen, we were looking at some before this and just understanding that some people in order to get to the level of care or treatments or whatever that is that we're trying to achieve. Some people are going to need a little bit more help, like as Estela, like Charis were saying in order so that we all are equal so that we all have that equal opportunity or that equal level so it's not a jumbly line of one person's higher than the other.

Some we just need to fill in that gap on the underneath so that we all end up equal at the top. Next inclusion, I think we talk about that a whole lot at AiArthritis and the importance of representation, the importance of people being able to be included their voices to be counted as equals that to me, the equal part is extremely important and that they feel welcome and they feel valued and they feel heard.

So did any Estela, did you wanna add to that? 

[00:09:37] Estela: I think when I think of inclusion, it's not just having the person be there, but also having them feel included, feel heard, and given the opportunity to be present and supported. Great 

Charis? 

[00:09:54] Charis: Yeah. I, I struggle with the difference between equity and inclusion, honestly, and I think there's overlap with all of these, but in my mind, I'm thinking like all the words and terms I'm thinking about relate to equity. like, I'm thinking about the word centering those most impacted and that's, you know, that's equity, but it's also part of inclusion and I think about people participating fully in something as inclusion, as full inclusion. 

[00:10:30] Tiffany: I can see that. And we talked about this as we were planning out the show as well.

And we, we started with an outline and said, this is D and E and E and I, and I, and D and we went back and forth. And so that's one of the reasons I thought it would be fun to try and zero in and what does each individual word, what kind of meeting can that have as well? Yeah, 

[00:10:55] Charis: I wanted to add another thing, you know, we need to remember that we all bring our, our identities with us wherever we go.

And a big part of inclusion is that. People are there with their identities. It's not regardless of how you identify it's, it's almost because of how you identify you are included if that makes sense. 

[00:11:18] Estela: Yes and to me, I think, you know, you also need to feel like you're welcomed and feel that you are valued because you know, to me, I feel that one of the things that we see a lot in, and it's that's with, with equity, you provide the space, but it's not just about providing the space for the person.

It is about making sure that they feel that they are valued and that they're contributing. So I think that's where, you know, there's so much overlap and it could be so confusing, but you know, it's about how the individual to me, how they feel. 

[00:11:53] Tiffany: Absolutely. And that leads us to the final letter or accessibility and I'm going to let Charis lead on this one, 

[00:12:02] Charis: where do I start? ? I mean, as someone who, you know, sees disability as my primary identity, accessibility is a big part of my life in terms of how I'm able to move through the world. And I mean, you know, infrastructure really, I don't even know if that's a word as well as like socially and culturally.

And so I, I see accessibility as a framework. That allows people to have inclusion in equity, and that includes diverse populations. So it's beyond disability as well. So I might have gotten ahead of myself a little there. So I think I'll pass that off to the two of you. 

[00:12:50] Tiffany: Did you wanna go Estela? 

[00:12:51] Estela: Yeah, so, you know, a lot of times to me, when I think of something accessible, it's not just having it presented to the individual, but ensuring that they are actually understanding what is being handed to them and, and what information is being provided.

And, you know, providing like a resource like this, where we're communicating on video and people can hear us. There are people that may not be able to see us that may not be able to hear us so ensuring that the information that is provided and, or resources or anything really care is that it is accessible to everyone despite of who they are or their conditions or their disabilities. 

[00:13:36] Tiffany: Absolutely. And I, I agree with both of you. I had put on myself in this inclusiveness of all people and how they need to process information. That's how I had summarized it myself. So I thought before we branch out and talk a little bit more, we have a lot of topics too.

Oh my goodness. so narrowing it down was hard, but let me say again, trust me, this conversation is not going to end at the end of the show today. So I thought that we would just take a minute just to be human and just talk a little bit about any personal experience with DEIA that we wanted to bring to the forefront today and thinking this, wow, this is really important to discuss, and I'm gonna I'll turn it over to Estela first.

[00:14:28] Estela: Yeah. So I think one of the things that I see the most is healthcare literacy. So even though you may have the access to healthcare, you may speak the same language, you know, perhaps, you know, the provider speaks the same language you do, but understanding and having, you know, that access to the information, understanding and being able to process it, I think is one of the things that I've seen the most and I'll give you an example. My mom actually, you know, has a, you know, a couple of, of conditions, chronic conditions, you know, including some osteo arthritis. And one of the things that we realized is even though some providers do speak Spanish and there is that barrier. There are sometimes where they come in and or they speak a different type of lingo.

I wanna say, because some words, even though they're Spanish, they mean completely something completely different in Mexico versus another country that may speak Spanish as well. So I think for me, that's one of the things that I've seen the most. So interpreter services, one of the things that we need to do is kind of look at, you know, what kind of interpretation and how are we really delivering the message to the individual?

And if the individual is actually understanding what they're being provided. So that's one example of, you know, accessibility. And again, it's a language barrier that we don't really always talk about 

[00:15:57] Tiffany: Charis 

[00:15:57] Charis: yeah. I mean, what example do I pick? It's it's part of, you know, all of us experience discrimination on this call in some way.

Whether it's because of gender or race or poverty, you know, class. So a lot of these, we carry with us. So a lot of the concepts in DEIA, I want to briefly talk about where those, where the identities intersect that we have and so I'm a trans person, I live in poverty and I'm disabled. And I mentioned earlier that we carry all of our identities with us all the time.

And that impacts how we navigate every environment, every interaction. And I think a lot about healthcare, like Estela is talking about where I have to decide with every new doctor appointment, whether or not to say that I use they them pronouns because I, I don't know how they'll react. And I know that that may impact how they approach treating me

and the way that intersects with me living with multiple chronic conditions that can have a huge impact on my life if the doctor decides not to treat me because of that. So, and healthcare is a huge environment where DEIA work is really important. So I'm glad Estela brought that up and reminded me that that is sort of my primary environment, where I experienced these issues.

[00:17:31] Tiffany: So I'll just add to that as one of my identities and roles as leading this international organization as a middle aged white woman. And it has been always our goal as an organization and mine personally, to try to always be considerate of these AC, this acronym, this diversity equity, inclusion, accessibility, always, but Charis knows we've had past episodes on it. I am the first to admit that I fall behind and I feel like sometimes I don't have the best choice of the vocabulary or I don't, maybe I feel like I'm doing what I can do, but I, I feel like I can do more. And the, this has all really put a lot on me as a middle aged white woman to.

not fit into any certain stereotype of what that in itself would mean especially when you're representing and helping others to be represented in a voice. So I find this episode personally, just so rewarding. And so I, I feel honored to be here with both of you. And I know that that will continue as we invite more people to the table.

Almost got a little teary 

[00:18:57] Charis: eye there. , I'm good at making people cry. both 

[00:19:01] Tiffany: that one kind of, kind of coming up a little bit. Yeah. So what we're gonna do is we are gonna dive in here and start talking a little bit about how diversity equity, inclusion, and accessibility tie into our healthcare. And we are gonna start by talking a little bit about the incidence of disease among the different demographics and, you know, Charis you had

started talking in our outline that we do before we do the show here about just underrepresenation and Estela, you started chiming in, I started chiming in. I thought that would be a good place to start. So which one of you would like to lead that one off? Oh 

[00:19:47] Charis: yeah. thank you. And, and I wanna go first because I actually wanna go back to accessibility really quickly if that's okay.

Yeah. I just wanted to mention that a lot of people, when accessibility comes to mind are thinking about like ramps and elevators and like physical access to places. And I like how we dove right into talking about strictly really digital and information accessibility, which often sort of gets forgotten by people who aren't really aware of the full accessibility.

 That we need. And I also just wanted to tie in a previous episode that Tiffany and I did together about ableism and how accessibility is at its core anti ableist. So I just wanted to mention all that before moving into this conversation around diversity and lack of representation among different demographics in disease, community stats is not necessarily lack of people with the disease it's lack of diagnosis or under diagnosis and lack of statistical gathering of information, and also lack of inclusion and research studies.

So specifically I wanted to talk about how in the axial spondyloarthritis community, which we now know under that new terminology, the ratio between men and women is one to one. Whereas, you know, past statistics said men had it more than women. I'm non-binary, I'm not included in those stats. Like I'm not a man or a woman, and there's no way that I could participate in a research study because they don't gather gender stats like that.

It's a strictly binary thing and I , this will blow some people's minds, but biological sex isn't even binary. So we can go into that later. I feel like I'm rambling. 

[00:21:58] Tiffany: no, you're not 

[00:22:00] Estela: thank you. No, this is, this is all great information. A lot of people have not heard of what non-binary means or what binary means.

So it's, it's good to have these types of conversations. 

[00:22:11] Tiffany: Thank you. And I was actually going to ask you Charis to explain to those who don't are not familiar with the terminology with binary and also with ableism. Sure. 

[00:22:25] Charis: Since we are on the topic of non-binary, I'll start with that. So I, I don't align with being a man or a woman to me I'm somewhere in between and outside of that all at once.

And so I use the pronouns for my gender. They, them theirs, Tiffany, on this call uses she, her hers pronouns and for people who don't identify with the sex they were assigned at birth that is considered in its full definition, transgender. So I'm transgender because I don't identify as that sex. I was assigned at birth, but that doesn't mean I'm trying to transition into an opposite gender as it were.

I'm just me. I'm the gender. I am. I'm neither man, nor woman. So that's my definition of my own place in the gender expansive world and going to ableism, Tiffany, as you asked, ableism is basically society sort of seeing non disability. So people who do not have disabilities as the norm and building society around that and.

I will refer to Tola Lewis's definition of ableism, and hopefully people can Google that. And you can link to that in your site, which is loosely that society forms itself around expectations of bodies, certain ideas of bodies, functionings, and production value. So it's loosely based around capitalism's idea that bodies are made to produce profit.

And yeah, I just encourage people to look at Tola Lewis's definition. 

[00:24:19] Tiffany: Yeah. Well, I just wanted to make sure we are gonna tie back to the episode that we did on that for sure Charis, but in the interim, I just wanted to make sure, because as I said before, with myself and my identity and my role for me, there has been a learning curve and I have been

very thankful to have people in my life, like the people in this panel to be able to help me learn and help me evolve and help me grow. And so I just wanna make sure that others who are listening that may be in the same place that I was a few years ago can also benefit from knowing what really those words mean.

And I think when we're talking about diversity, equity, inclusion, and accessibility, understanding that foundation of those definitions and what those mean is really, really important because it all ties in completely. So going back a little bit to what we were talking about with the incidents and, you know, you said care with the, the one to one ratio and me being female in my it, when I was first.

looked at for then ankylosing spondylitis. They said, well, I didn't have the gene, which we know now is not as prevalent in those of us who have the non-radiographic version, but I was also told you aren't male. And so you cannot have ankylosing spondylitis. And this was just in 2009. I mean, it. You know, decades and decades ago, it was roughly 10, 12 years ago.

So we have grown a lot since then, but if you just take that one example and you think about everybody today, patients today with all dip past female, past male, PA just the culture, the ethnicity, all of that tied in and the difficulty it leads and it lends to in diagnosis, I know Estella, you had a few things to add to, to that.

[00:26:28] Estela: Yes. You know, with and I'm glad that you brought up and I can't even pronounce or say the condition that you have I could never say it. And no matter how many times they hear it, but you know, there, there is the type that you have is a non-radiographic that part I can say. And I think, you know, there's.

Again, this preconception of what the norm of people being, how they're being and who, what type of people get what specific illnesses. And I think we need to grab up to the idea that. That may not be the case. There's always an exception to what what's out there. Right. And with lupus specifically, I can tell you that I had no idea.

There was no awareness in our community, in the Hispanic community that I came across and I've been in healthcare for over 30 years. That told me to be aware that the Hispanic, Latino community was impacted or had a high prevalence of lupus in our community. And that it impacts our community, you know, at a high rate.

And that women are more, you know, predisposed to lupus, even though it does affect men and children, you know, you don't know what you don't know. So I think with a lot of the information that we're bringing up and highlighting right now, I think the one thing that we need to keep in mind is we always have to keep that open mind. And even though there are stats, and even though there's that norm of this is who gets affected or impacted by these conditions, we also have to understand that there is that, that area, that gray area, where you don't know where it's gonna fall, but yes, with lupus specifically, it does disproportionately impact racial and ethnic minority populations.

And a lot of people, I mean, just until recently we talk about minority populations, but people didn't know what minority populations were, who was in that group, like who belongs in the, who are the minority groups. And a lot of people also may think that like African American, Hispanic people, Asians, you know, these are the only minority groups and that's not the case.

You know, you have the dis disabled, you have the, you know, the non-binary groups and, and everyone, the disabled groups, like you have a lot of minority groups that are always underrepresented. So I think that's one of the things that, you know, has enlightened me a lot with these conversations that we're having is that we have to go above and beyond and just keep on learning.

But yes, you know, with lupus, it does impact a lot of minority groups and it, it is something that we have to be mindful of and, and, and inclusive and include awareness to everyone. Because you never know if you may have, you know, these 

[00:29:13] Tiffany: conditions. Yes. And one of the things that is in, particularly in addition to delaying and diagnosis, if you don't have access to the right doctors and that all plays into this, I'm going to also mention about the research kind of going back to that again and why that's so vital.

Just think about it what happens is if you are able to have access to treatments and you are given a treatment, then the treatment you are given is often tested in clinical trials that include a certain population. So there's a lot of issues in the design of clinical trials that come to play here. One of them being that there are people of like, for example, lupus, I know that there is a lot of conversation in the lupus community about the fact that the black ethnicity is more affected than the white community.

Yeah. Yet, if you look at the clinical trials, The data is predominantly middle aged white people. And what does that mean? 

[00:30:20] Estela: Yes. And, you know, I think that's one of the, the problems and it was, you know, it was a huge topic that we talk about, but I think that's just across the board with including everyone, you know, it can, it goes back to what we're talking about

the DEIA, we need to include everyone. And in order to know, if the treatments are gonna be working for the specific groups that are target, that are being targeted, right. And the groups that are being targeted are the ones that are more, that have a higher predisposition and the ones that are higher, you know, or affected disproportionately are minority groups black community and the Hispanic community.

We are two to three times more. It's more prevalent. So why not include these communities to see how the treatment is going to impact them? So you bring in the awareness, right? You include everyone and, and you make sure that there's a diversity in these trials. And, you know, I know that there's been so much, you know, historically, so much neglect and so many other things that have happened to different minority groups.

But the one thing that we can do is change. And I think having these conversations about DEIA is important because we also, as individuals need to represent our communities. And that's what we're doing here. Here representing the Latino, Hispanic community and letting people know that look like me, or that may not look like me, that identify as Hispanic or Latino, you know, that there is a place for you to be included in these clinical trials. 

[00:31:59] Tiffany: Charis, did you wanna add to that?

[00:32:00] Charis: I just, we could go down a rabbit hole with all of this I mean, it it's. Yes, we could. It ties into the fact that people who are not white are more likely to have multiple conditions. And, and that is one of the ways that people are excluded from clinical trials. We know that a majority of medical treatment is based on clinical trials on white CIS male bodies.

And it had another really important point, but it might come up later. I do wanna just add to the point that we've been talking about how Latino population, the black population are more impacted by lupus. It's also, I think, across the board for all rheumatologic conditions, I can speak specifically to axial spondyloarthritis disproportionately impacting black women with symptoms.

Not necessarily by statistics. But we barely have researched to prove that. And black women experience huge delays in diagnosis. I know someone who, I think it took 30 years for her to be diagnosed with axial spondyloarthritis. And it was because she was a black woman, even though her dad had it. So that's, I mean, the racism in healthcare is one of the leading causes that we do not have diversity in these clinical trials and research and even in the statistical population.

[00:33:29] Estela: Yeah. I'm glad that you brought up about the exclusion part because a lot of times with these autoimmune conditions, they come in bundles and you know, you may be excluded from a lot of trials because of that. So then again, that's like another issue you have to face. But even though you know about the trial, you are the minority group that's impacted and you, you can't even participate because you have multiple conditions. So that's probably another time for another discussion on the side. 

[00:34:01] Tiffany: Yeah. Calling it now 360 off that we need, need to do, need to do it. We need cuz we need to move on to the other, to the other areas. But I will just kind of button that part up by adding how much of a problem it leads to because when we were talking about access and to these treatments and if you don't necessarily meet that criteria that was in the trial, just because you have rheumatoid arthritis or psoriatic arthritis, there are so many different subgroups,

diversity within the, the diagnosis itself, that it then should default to the ethical onus of your doctor, who knows you best to decide the treatment for you. So now it gets into a whole policy legislative area, and it really all ties together. So I, I just wanted to mention that because we, as patient organizations, as patient advocates, as leaders really are trying to unite to make sure that people are aware of all of these things that could be affecting your life and being able to find ways to communicate these to everyone in ways that make sense to them.

And then also to provide opportunities if you want to try to get more involved and are able to. So let's move on to talk a little bit about equity in regards to physicians. Charis, I'm gonna let you start. 

[00:35:37] Charis: Yeah, I'll start. I don't have too much to say about this and I feel, you know, we can zoom through this section a bit.

Maybe I, I just wanna mention that I have never had a transgender medical provider and that's just one example. I've never had a provider who's identified as disabled. I've had people providers who understand that I'm in poverty, but they don't necessarily live in poverty. So I share those examples to point to the fact that if you do not have physicians who look like the patients they're, they're treating, then the care is going to be different.

So if you have a white male physician treating a white male patient, that care is going to be better in some ways, because there is a, these people share a cultural understanding of their place in the world. They look the same, they may talk the same. And so at the same time, like we're talking about equity and I wanna wrap in the fact that becoming a medical professional, a clinical medical professional is grueling.

It takes years and years. It takes a lot of money. And a lot of marginalized communities are sort of blocked from pursuing medical careers because of those things. And that is, it's not just, we need to convince more people to go to medical school who have intersecting identities it's that we need to break down the barriers.

And that's what we are talking about with equity when we are talking about the definition. 

[00:37:19] Estela: Yes. And I, I like the fact that you mentioned that, that, you know, sometimes we feel that if the individual looks like us or talks like us, then that we're gonna have that, that equitable care and treated, you know, and, and receive the best care ever.

And I think that's not the case always. Right. Because we can look similar, but it doesn't mean that we are, or that we understand our cultures. Right. And a lot of people have this, you know, misconception too, with when they're reading, like the names, you know, because your name sounds a certain way, like, you know, you are Hispanic or whatever.

So I think we have these unin, unintended biased and preconceptions. So it is very important to. Have a physician that treats you individual as of the individual that assesses you as an individual and that you feel that respect and that treatment, that equal treatment that you receive, the equal treatment that everyone else has.

And I think that's, what's important when it comes to getting the physicians to actually understand and deliver the care that you need. And again, you know, it all ties in with a DEIA, you know, is having that access to care is having you be treated the way you deserve to be treated and looked at as an individual, not as a group, because a lot of times, you know, within our groups, we live specific lifestyles that may impact, or our beliefs may impact the way we take care of our bodies or the way we choose our treatments or work with our providers and our care teams.

So it's very, very important to kind of look at it at that angle as well. And there's always these unintended, you know, biases that a lot of providers may not know that they have also. So it's looking at, at the whole thing and having, I think the respect and that conversation, communication, and also the opportunity to speak and to be able to raise your voice with your providers.

I think it's so important. regardless of what they look like. 

[00:39:31] Tiffany: Absolutely. And you, you hit the word that I was thinking in my head with the communication, and I know that there is a lot of work in the physician community, in the rheumatology community to look into these unintentional biases that they may have.

And a lot of that work has to do with shared decision making. There's a lot of movement towards really listening, active, listening, responding. And we've been sort of thrust into that a, a little bit in a, in a new dynamic way with COVID and with eHealth, which I know that we will break out into a, a bigger discussion about that in itself with accessibility.

And I just wanted to just mention that, that communication in the office, because sometimes. Not there's patients that can't don't know how to speak up for themselves or need more aid or need more assistance. And that might be assistance from fellow patients. It might be that they show up with their families.

That's a whole other dynamic and that has to do with your culture or your background. And so all of those things are elements that we need to consider when we're talking about this conversation. Is there anything else that you all wanted to add in, in regards to this part of the conversation? 

[00:40:51] Charis: I just wanna add that I love that we're having this conversation. I love it more and more as we move along because each of us is bringing up like sort of clarifying points that are, are vital to the conversation. And. What's coming up to me is that we need to continue talking to get further clarity because there are a lot of gray areas and the overlap is just, if you try to do a Venn diagram of all this, it would just be a circle.

I just wanted to say, I express my thanks to Estela for calling out my bias. And 

[00:41:30] Estella: that's what we're here for, right. To support one another. And I think at the end of the day, you know, I think we learn and just like providers and physicians too, you know, they're learning from us, you know, it, it wasn't until recent years that our voice is actually being heard that we are being invited to the table, not just this table where that Tiffany offers, but to the table where we are included when it comes to our own treatments and our medical decisions and feeling included and being heard.

So it's so important to be able to share and support one another. And again, you know, we, we have to learn and uplift each other because at the end of the day, that's what it's about. I mean, that's our basic, I think human right is to respect one another, to support one another and, and uplift each other.

So. I, I also am so excited to be here, you know, and to be able to share our perspectives with everyone 

[00:42:27] Tiffany: else. Absolutely. And that's, that's exactly why we wanna continue the conversation because just like you said cares, it, it, it, we need to continue talking cuz the more we talk, the more we have these aha moments, the more that we have different levels of clarity and that different people will have different levels of clarity.

And we can only do that with continued conversation. So we're really excited to have been able to at least start these, these topics so that we continue and hear more and more what everybody thinks. I think we're gonna just continue to learn and have more eye-opening moments, which I love because it's led by people with the lived experience.

And in saying that I'm gonna transition over here really quick while we're talking about inclusion. And we sort of talked about clinical trials already, but I'm gonna, I'm gonna throw it up there and I'm gonna talk about our seat at the table. So Estella, you said it's important that we have a seat at the table.

There's a lot of places we wanna have a seat at the table and I was gonna turn it over to maybe a little bit of conversation of where we are invited to the table and maybe where we're not invited to the table care. Did you wanna throw out any in particular that come to mind 

[00:43:44] Charis: regarding inclusion?

Yeah. Accessibility I think it's always gonna be accessibility for me. Okay. 

[00:43:54] Tiffany: Well, in particular, I know we were having a pretty robust conversation about participation. And where patient and voices are included and where they're not so included and there needs to be more inclusion. And that does go into accessibility as well.

And we are definitely going to have breakout conversations because there's no way we have enough time to talk about it here, but let's jump in a little bit to the idea of digital access, being able to have access, if you cannot travel in person. Can you tee us off a little bit on that charis? 

[00:44:38] Charis: Yes, I can definitely tee us off.

I can talk all day about this, but I think with some historical information that we're all aware of with COVID suddenly at the beginning of the pandemic online access to conferences became the norm and we're all rheumatic professionals here. I consider myself a rheumatological professional. I've done research, you know, I've I've led panels, et cetera.

I'm not a clinician. And so attending these conferences like the American college of rheumatology annual meeting has been a part of my life for half a decade or longer. And I was so happy in 2020 and 2021 when ACR went completely remote because that access meant that I was able to participate fully.

Like I could attend more sessions because I wasn't rolling my wheelchair all over a, a mile long conference center. I could be more present because my fatigue wasn't as bad. So that's the context we're in now as the world is beginning to push to in person things. So I just wanna highlight the fact that digital accessibility includes

career options and participation, even among the rheumatologic clinician community who are also on immunosuppressants, some of them. So I think that's a good way to start us off. 

[00:46:12] Tiffany: Okay. That is a good way of starting us off. So one of the things that when we're talking about this, these types of conferences in particular, they are research driven.

They are research based. And a lot of us, including the people who are on this panel here have served, have participated as patients, persons, living with various diseases, alongside researchers, as equal parts of the research project, and often called patient research partner. There's other terminology for it.

But what it essentially means is we are not, there is as participants in the research as the, the end person, we are actively participating in various elements of the research. A few years ago, Charis was part of a project that AiArthritis did where we were the folk. We were doing the interviews with. We were the patients interviewing the researchers.

And we were trying in that project to sort of flip the script. And I ended up becoming certified as a focus group moderator. Charis ended up doing focus groups. We had several other patients doing leading these focus groups with researchers as our advisors. And we actually coined that as mentor assisted research, new term.

And so in saying that we know that it's important that we are present at, at these types of conferences because we are included as part of the project and the process, and it has become a little frustrating because we don't always have our seat at the table or our equal piece of that participation.

And I'll extend it just to patient organizations as well, kind of as this umbrella over that involve patients have also struggled. So there is an identity issue there where we are trying to prove ourselves as groups that lead research is historically in a lot of these conferences what'll happen is we are not able to lead or even submit to have a session.

It has to be submitted by a, a researcher or a doctor. And, and that becomes very frustrating. I can say that patient organization, AiArthritis, we are going to be part of leading a session this year at the ACR, but it's, it's very groundbreaking because we're not a researcher. We're not researchers, we're not doctors.

In funny story. I flipped over the email to everyone this morning because they're having trouble registering me. And as faculty speaker, because I'm not a doctor, , I'm not a researcher. They don't know how to fit me in. So clearly it's, it's a new thing. So I'm gonna turn it back over Estela or Charis. If you wanted to add anything else to that, knowing we're going to 360 off into another conversation on this topic and let other people weigh in as well.

[00:49:16] Estella: Yes. You know, 

[00:49:16] Estela: I think patients are equal stakeholders. So being included from the beginning of, 

[00:49:23] Estella: you know, when, 

[00:49:24] Estela: when something's being thought 

[00:49:26] Estella: of, 

[00:49:26] Estela: of like a clinical trial participation, I think why not include the patient's voice 

[00:49:33] Estella: and, 

[00:49:33] Estela: and our perspectives, our lived experiences as an equal stakeholder.

And I think that's one of the things that. A lot of people may not see us as, because they used to see the patient involved only as a participant. 

[00:49:51] Estella: Right. 

[00:49:52] Estela: And I think that's where the shift needs to start is being looked at as an equal stakeholder and being able to be heard 

[00:50:00] Estella: and, and, and, you know, 

[00:50:02] Estela: and allow the opportunity 

[00:50:03] Estella: to, 

[00:50:04] Estela: to give our provider perspective.

Because at the end of the day, the goal with all of this is to have better healthcare outcomes 

[00:50:11] Estella: right. 

[00:50:12] Estela: For patients. So if we're looking for better patient healthcare outcomes, why not include the patient that can share with us how we can get to our goal. 

[00:50:27] Estella: Right. 

[00:50:27] Estela: So I think that's so important, 

[00:50:29] Estella: you know, 

[00:50:30] Estela: and Not everyone has 

[00:50:32] Estella: these, 

[00:50:32] Estela: these titles and Tiffany, you have been leading the road for a lot of other patients to be able to learn more and to be looked at as, 

[00:50:41] Estella: you know, 

[00:50:42] Estela: equal stakeholders.

And, 

[00:50:44] Estella: you know, 

[00:50:44] Estela: my sister and I were able to actually participate in a program in inaugural program that was just held it's a patients program. And it's also to provide more inclusion and we were able to learn so much about how and provide, learn so much and also provide different perspectives on building that trust with community.

Because at the end of the day, we need all stakeholders to be able to reach our goal. 

[00:51:11] Charis: I fully and wholeheartedly agree with everything you just said. , it's so important to. Elevate ourselves automatically to that position and, and not shy away from it because the more we show that we believe it, you know, the more normal it will become.

I, I also want to mention that in, I guess, justice frameworks, like the central focus is on centering those most impacted, and we are the patients and we are the most impacted by the research, by the, what trickles down from the research and a huge part of what it means to center those most impacted is to let them lead and have them at the table fully as equal stakeholders.

And that's a big part of this in inclusion aspect that we're talking about. It's not about including us and letting us attend it's beyond that. And not even letting us participate in research as leaders, but acknowledging that we already are. I mean, we have a huge portion of the leadership of the room COVID Alliance that started in 2020 is patients.

And they have led research. They are on papers and journal articles. They are a huge bridge between the work that the whole organization is doing, that they are helping to lead and the results because they have access to the patients. They know what the patients need because they experience it themselves.

Just building off what Estella said, we are equal stakeholders already. We just need to be recognized for it. Yes. And I think 

[00:52:58] Estella: that goes kind of hand in hand with a whole equity issue too. Right. So it's not just about being included, but when you're looking at, you know, research it's health equity research that we're looking for, right.

So let's eliminate those inequities and let's start embracing and looking at all stakeholders and empowering them to contribute again, you know, including all populations, diverse populations. In general, 

[00:53:25] Tiffany: we are going to continue that conversation. So do not fear that is going you get us started, Tiffany.

we're go. I know, I know we are, we have a lot to say on many of these topics, but the whole purpose of this show today, and the concept of having the Sunday, the main Sunday show is to put the topics on the table and then expand them out and continue the conversation. And I just can't say it enough, this episode of all of them we've done.

And I think we're on 78 is by far the most robust, as far as the ways that we can take it. So trust me, this conversation will not be. Okay. So before we wrap up this main episode, there was something else I just loved this sentence. We were talking about. Karis mentioned discussing social determinants of health and commercial determinants of health, which they will define here momentarily.

But the sentence that went after it, everything that makes a person, a person impacts their approach to care. I just love that I wanna wear it as a slogan, like on my 

[00:54:33] Charis: shirt. coming soon. AiArthritis. T-shirts 

[00:54:40] Tiffany: so Charis, why don't you tell us a little bit lead us in that conversation? Yeah. 

[00:54:45] Charis: So social determinants of health, or it's sort of a similar buzzword, if you were, will buzz topic as the DEIA discussions that are happening, at least in the research community where it's coming to light more and more.

You know, marginalized populations have known about this for a while, but it's coming to light in research communities and being actually talked about that every aspect of what makes a person a person is how they navigate their healthcare. So like a white cis man navigates healthcare, a certain way, and a black trans woman navigates healthcare a different way.

And it's based on the identities they occupy how they move through the world outside of healthcare that impacts both their access to medical care, whether it's because they're more likely to live in poverty or how they communicate with a doctor, how a doctor is able to explain options, whether they're part of a culture that is more submissive when it comes to receiving healthcare or a culture that is more assertive when it comes to asking questions and navigating. So really anything you can think that makes a person, a person is, you know, it impacts how they navigate their healthcare, the choices they make, the medications and how they take their medications, whether they can afford their medications.

So think about language, class, access to internet and transportation, culture, race, gender, and gender identity, sexual identity. All of these things. So that's, that's all of it in a nutshell. 

[00:56:32] Estella: Yeah, no, and I think, you know, I love that sentence, too. Everything that makes a person, a person impacts their approach to care.

I cannot say that enough because yes, we are all individuals, right. We have different lifestyles, we have different barriers. So it's very important to make sure that we understand those barriers and that everyone is treated individually. We are individual people at the end of the day. And that is why, you know, I emphasized earlier about the access to care and the, you know, the buy and, you know, putting everyone in groups or in, you know, just kind of classifying people.

We need to get out of that, even though yes, it's very important to, to classifying groups, but we also, when it comes to delivering care, when it comes to specific treatment options, when it comes to anything regarding the treatment of your care, you are the most important person to be looked at to be heard and to be understood.

And I think that's why it's, I love this because regardless of what group you fall under or what category you are, you, you must be heard. You must be given the opportunity. You must be given the best healthcare that you deserve and that it's being offered to everyone else. 

[00:57:57] Tiffany: Very, very well said. In saying that we are going to wrap up this section of the episode by also adding, in addition to many of these breakout conversations, there's still more things to talk about.

There are still more topics that we had written down that we haven't even begun to delve into. So there are issues with activism with being present. Can you be at a March, so to speak, if you wanted to be, can you travel to these conferences? Say we talked a little bit about that. There are just many, many different elements.

And what do you think of not just what we've decided in our outline. Comes to your mind when you start thinking about D E I a, what are your issues that you wanna put on the table? We're here to listen. We're here to continue the conversation because that's what the show is all about in saying that I really wanna take a very special heartfelt moment to thank Estela and Charis for being on the panel with me on this, because I just couldn't be I'm just so honored, I guess, is the best word to say, to be able to sit here with both of you and put this topic on the table.

[00:59:15] Charis: It's been great so far. 

[00:59:17] Estella: yes. And for sure, a lot of 360 it's from this conversation that we've had and you're right. You know, our outline didn't even we didn't even finish it. We didn't even get started with a couple of items. And I think that's the biggest thing to take away is that we are offering everyone a seat at the table, come in with your perspectives.

We want you to feel heard. We want to invite you and 

[00:59:43] Tiffany: we want to listen. Absolutely. And a Stella, can you tell everyone where they can find you? Yes. 

[00:59:48] Estella: So our social media platforms or, or our handle is @looms4lupus. So at L O O M S. Number four lupus, L U P U S. And we are at that same handle on YouTube, on Twitter Facebook, Instagram, and LinkedIn.

And then you can personally find me because I'm also a healthcare advocate. So not just supporting the lupus community, but overall healthcare, you can find me at Estela 

[01:00:18] Tiffany: Mata wonderful and charis. 

[01:00:21] Charis: Aside from Googling my name because apparently there's a lot about me out there. You can find me personally, the best place is Twitter.

And my Twitter handle is @beingcharisblog. That's B E I N G C H a R I S B L 

[01:00:42] Tiffany: O G. All right. Wonderful. And you can find AiArthritis on social media platforms, Facebook, Twitter, LinkedIn, TikTok, and Instagram, and also at YouTube. So that is I F as in international foundation, AiArthritis one word. I F a I a R T H R I T I S that one's hard. I did it without even looking. Wow. , I'm kind impressed with that. One. Love it. So you can find us there. You could also find us on our website aiarthritis.org, along with this talk show and all of the episodes and stay tuned for the three sixtieths as well, because we have a lot more to say, and only together can we change those stories of tomorrow?

So make sure you tune in for those and last but not least. If you enjoy the show, while you're on the website, please consider a donation. So we can continue to tip the team and make sure that we continue this. These productions for you. So again, thank you so much. We're excited to join this conversation with you again, in the future

AiArthritis voices 360 is produced by the international foundation for autoimmune into autoinflammatory arthritis. Find us on the web@www.AiArthritis. Do also be sure to subscribe to this podcast and stay up to date on all the latest AiArthritis, news, and events.