Listening, Learning, and Inclusion: LGBTQIA+ Experiences in Rheumatology

How can rheumatology be more inclusive for LGBTQIA+ people? And how can we ensure that research truly reflects the diversity of the communities we serve?

In this episode of our Patient Voices series, Dr Chris Wincup is joined by Dr Simone Battista, University of Salford, and international patient expert Grayson Schultz to explore these important questions. Together, they discuss why the language we use matters, how clinicians and patients can work in partnership to create more inclusive care, and what practical steps can help make clinics welcoming environments for everyone. Drawing on personal experiences and professional expertise, they consider how research, clinical practice, and patient engagement can contribute to a more inclusive future for rheumatology.

Useful Resources:

National LGBTQIA+ Health Education Center

LGBTQIA+ Glossary of Terms for Health Care Teams

Guidelines for collecting patient data on sexual orientation and gender identity

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BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

Transcript

Welcome to this Talking Rheumatology podcast. This episode is part of our Patient Voices series, where we'll discuss key topics with experts and patients together. This episode explores how rheumatology services can create a more inclusive environment for LGBTQIA plus patients and staff. From the language we use to the way clinics and research studies are designed through lived experiences and research perspectives. We'll discuss the wider context patients bring into the clinic room and share practical ideas for building healthcare spaces where everyone feels respected, safe and supported. My name is Chris Wincup and I'll be hosting today's conversation. I'm delighted to be joined by Simone and Grayson, who I will introduce themselves shortly. So thank you both very much for taking part in today's important podcast. I'm certainly looking forward to learning lots myself. I'll start with a question to both of you, Grayson. Perhaps if I come to you first, if you wouldn't mind introducing yourself and end. In brief, tell us why the topic of this conversation is important to you.  

Yeah, absolutely. Thank you Chris. My name is Grayson. I live in the United States, and I do a lot of research on LGBTQIA+ communities, as well as chronic pain and rheumatology. In that regard, I am part of groups like Omeract, where I am the co-chair of the equity, diversity and Inclusion Working Group, and there's so many reasons why this topic is important, right? We know that worldwide LGBTQIA+ communities experience worse healthcare outcomes than their peers who aren't part of the community. This includes higher rates of chronic health conditions, including 21% percent higher chances of arthritis, more instances of chronic pain, and more functional limitations due to that pain and higher inflammation markers, specifically CRP and IL6. In the United States, 39% of transgender adults had one or more chronic conditions or disabilities as of the 2015 US Transgender Survey, and we can compare that to 15% of US adults in the US Census Bureau's American Survey American Community Survey from the same year, or CDC estimates from around 2020 that tell us about 25% US adults are living with disabilities, transgender adults with disabilities, and chronic conditions, especially in the United States, delay care about fifteen percent more often than their abled peers. And we know that that stigma of being part of the LGBTQIA+ community and discrimination that we experience are part of that delay, which often means that these patients are showing up with higher disease burden, worsening conditions, flare ups, and preventable complications. I know this firsthand because this is a very personal topic to me. Um, I experienced onset of Still's disease in November of 1993 when I was five years old. My illness has changed my life in a variety of ways. I work in health equity. I'm focused heavily on rheumatology, chronic pain, and the LGBTQIA+ community. In addition to Still's disease, I also have Hypermobility, Ehlers-Danlos syndrome and fibromyalgia, and I'm also both queer and transgender. So I've experienced both firsthand in accessing care and as well as doing research. What happens for folks who aren't able to access care as readily or as easily as other people?  

Thanks very much. That's a wonderful summary, and it's already giving us plenty to think about for today's podcast. And we're also joined by Simone. So if you wouldn't mind introducing yourself and perhaps the same question to you. So why is this topic of conversation important on your side?  

Thank you so much, Chris, and thank you so much also for your introduction. So I'm a research fellow at the fellow at the University of Salford, and I'm a physiotherapist by background. So, my research focus and also clinical experience has always focused on improving the quality of people care and mainly on non-pharmacological interventions like exercise, diet, sleep. As a physio, this was mainly my interest as a clinician and then it becomes my main interest as a researcher. So as far as this question is concerned, so the topic of the conversation for me is very important because it sits as the intersection of both my professional and personal worlds. As a researcher, I have already explained basically why, because we know that quality of care isn't just about the treatments or the outcome. It's also about whether people feel safe, seen, and able to engage in their care. And also, I'm a gay man, so I'm aware of the healthcare environments and that this space isn't always neutral. There can be small signals which we're going to talk during the conversation today. Language, assumption, and even forms that patients need to fill in that can shape whether someone might feel that they belong to that healthcare environment. So this topic matters because inclusion isn’t just an add on, but it's fundamental to delivering effective person centred care. Because if we don't feel safe, we don't fully engage. And if we don't engage, then the care quality suffers.  

Thank you both. That's really, really fascinating. Introduction gives us plenty to get into over the course of the discussion. Grayson, I think I'll come to you first. And what does LGBTQIA+ mean these days? And you mentioned before that there's been this evolution of terms. Could you perhaps just talk us through a little bit about what the definitions here, what these mean? And particularly as clinicians, when we see patients who may identify within that group, what might be we thinking and what are the differences?  

Yeah, absolutely. So LGBTQIA+ can be defined in many different ways, but it's generally individuals who are lesbian, that's what the L stands for and then gay, bisexual, transgender, queer, or questioning. Questioning would just be you're not sure if you're part of the community, or you're not sure what label feels right for you intersex, asexual, and or who identify as sexual, sexually, or gender diverse in a variety of different ways. Again, this this term can be written in a bunch of different ways, so you may see just LGBT, you may see LGBTQ. Plus there's a there's a ton of different ways to write it. Generally speaking, the opposite of the community would be folks who are heterosexual or straight, but there are absolutely folks who are heterosexual who are part of the community. So if they are asexual, don't experience sexual attraction to folks or might be transgender and heterosexual or intersex and heterosexual, there's not a great cutoff for definitions. And, you know, the terminology is always changing. Just to go into to some of those terminologies a little bit different. So queer is generally a label that is used to describe sexual orientations and gender identities that fall within the community. It is formerly a slur that has been reclaimed. There are definitely some people who feel that because of its use towards them in the past, it still is a slur and we would want to respect that. There are also other reclaimed slurs within the community that I won't go into, uh, just for the scope of this conversation. And while queer has generally been used to describe sexual orientation in the past, as I said, it's being used more often for gender identities, gender expression. So how someone might dress or show up in spaces, um, and even like political beliefs, etc.. transgender is just a person whose sex assigned at birth does not match their gender identity. So for me, I was assigned female at birth and in my twenties realized that did not fit me. And so I am a transgender male, which means I was assigned female at birth but now identify as male. Transgender is always an adjective. It is never a noun. So you're referring to a patient as a transgender patient, not a transgender. Um, and the opposite of transgender is just cisgender, which, you know, the prefix cis just means same. So if you were assigned female at birth and you still identify as a woman, you would be a cisgender woman. Non-Binary is an umbrella term that talks about gender identities that don't align exclusively within the categories of man or woman. This can describe someone's gender identity. It's also an umbrella term that includes other gender identities within it, like genderqueer. Non-Binary people may or may not consider themselves to be transgender. That's kind of like a personal feel. So I would always, uh, ask somebody if you're curious what language they would like to have use for them. And that's just always a, a good thing to go with. In any case, within this community and just a couple other things that we may or may not touch on in the conversation here. Intersex. It refers to people who are born with natural variations in sex characteristics that, again, would not fit the typical definitions of male or female characteristics in the intersex world can include chromosomes, hormones, external genitalia, and or internal reproductive anatomy. Not all intersex people feel alignment within the LGBTQIA+ community. And then HRT is hormone replacement therapy. This is something that many people, cisgender and transgender alike, will take. So, for example, a example, a cisgender woman might take oestrogen during menopause or after having a hysterectomy in transgender circles. This may also be referred to as GAHT or gender affirming hormone therapy. I also want to note, as we said at the beginning of this, that language changes in all communities regularly. It can mean something different geographically. It's always best to kind of discuss with your patients or the communities you're working with, the language that they feel best represents them, and to try to keep up to date as much as you can on language within the marginalized communities that you're working within.  

Great. Thanks. That's a wonderful summary. Certainly learned a lot there and certainly puts into context what we're going to be discussing in terms of the impact on healthcare. The next question is really before someone enters the clinic room, they may already be carrying some experiences from outside of healthcare or from previous adverse events within healthcare settings. So what I'd like to consider is how does these so-called minority stresses or previous negative healthcare experiences affect how patients come into their appointment. Maybe just to see a rheumatologist. So as a rheumatologist, you may be unaware of what your patient has experienced in the past in the lead up to coming into clinic. Can we talk a little bit about how those impacts may play out in the clinic when the patient comes to see you? Simone, do you mind if I come to you first and maybe you can give us your opinion from the clinical side?  

Thank you Chris. So basically, many LGBTQIA+ patients don't walk into a clinic like the rheumatology clinic as a blank state. They might carry like what we call minority stress. And in a very simple way, it's basically the accumulation of past experiences like stigma, discrimination, or even just anticipation of being misunderstood that keeps on accumulating so that people enter already with a state of general anxiety, not because the disease, not because the condition, which can also go on top of this, but just because basically of their experiences in the healthcare system or in other systems. So because before the consultation has even started, patients may already be assessing whether this is a safe place. Deciding what to discuss, disclose or withhold, preparing themselves for potential discomfort. And as you can imagine, that mental load changes how people then show up and also which information they provide us. So actually, our assessment can be very brief because the person doesn't want to talk to us and we think there are no problems so how we can reduce it. So some practical tips is that for instance, let's not assume neutrality. We can have actively signal inclusivity like when we introduce ourselves. Visible signs like a simple rainbow lanyard and inclusive posters. Bearing in mind that this won't be solved. Minority stress, there should be an alignment between all the symbols that we put in our clinics and our behaviours and also, we need to avoid assumptions about identity. For instance, in the forms about the relationship or experiences that a person sometimes it's very easy let's just ask instead of presume ourselves. And also it's very nice to create some moments of safety. And we need to remember that the first impression really matters. So if we don't like give a good impression, the patients might refrain from giving us information that are actually important for our clinics.  

Thank you very much. And I think when we discussed this previously, it's interesting to know that as a as a doctor, you're often setting clinic and a patient comes in and you don't think about the experience in the waiting room, going to the bathroom, providing a urine sample and all of these things that may be stacking up before your patient actually comes into the clinic room. And I think one of the impressions I got from you both was that this can be very anxiety provoking for many people coming into the clinic. So the next question really is, how might this anxiety affect the way that communication with a clinician may occur and what impact that has on consultation when reviewing a patient in clinic? Grayson, I don't know whether you perhaps like to kick us off with this one.  

Yeah, absolutely. As Simone said, right like patients will walk into a space carrying so much information, uh, emotions, past experiences. And we often have to do what is called safety math in our personal interactions, whether it's, you know, me interacting with my neighbours or with the healthcare system, right? So for me I have to drive about an hour and a half to two hours to get to my rheumatologist where I live. There is a bill that says I should not be using the male bathroom when I go into an academic medical space. Um, which means that I have to either know that I'm getting a urinalysis so I can make sure that I show up to that space and can give that sample or I'll stop, you know, at a rest stop or a gas station beforehand to use the bathroom. So I'm not adding to the anxiety of waiting to, to go through the appointment or I'll just use the bathroom. And if somebody's mad, they're mad. Um, which, that, that's a personal decision people may or may not make. They may or may not feel safe making that decision. Um, and then of course, there's, there is the drive home, right? But when I show up in the, in the clinical space, some of the things that I'm thinking about, especially if it's a provider I haven't seen before, how much risk am I putting myself in by disclosing or talking about my identities in this space? Am I going to face discrimination walking into the space? How can I react? Can I get upset if I'm experiencing discrimination, or is that going to reflect poorly on my community? Is that going to reflect poorly on, uh, notes that get put into my clinical record? How likely am I to receive affirming care in that space, which doesn't have doesn't really have anything to do with, you know, anybody affirming my gender or my sexuality, but are we able to have a conversation where I know you're not thinking in the back of my head or in the back of your head, what's in my pants? Or have I had, quote unquote, the surgery or all these other questions that people might be wondering about, right? How badly do I need to seek care right now? How can I keep myself safe? What do I disclose? And do I have the energy to correct the clinician, whether it's face to face or afterwards? If I see something in my clinical notes where pronouns were used incorrectly or something like that, is there a lined up process for me to be able to correct that? Is it me having to interact with the clinician's office to correct that? These are all some of the things that that we would think about, right? And that's just in the clinic space that's not getting to the clinic space. Going home from the clinic space, getting lab work, etc… and so there, there are so many things that go around in our heads as we're thinking about approaching an appointment. And as Simone talked about too, right none of this has anything to do with have we been gaslit about our conditions? You know, like whatever else might be going on, it’s a lot of, for lack of a better word and I don't mean this in a demeaning way, but it's a lot of baggage to enter a space in with and to try to like, communicate around.  

Thank you. And Simone, I don't know whether you'd like to perhaps come in and tell us your thoughts there as well? 

I just wanted to add on this that like in my case also as a physio or other healthcare professional, they can have also like extensive appointments with patients. And also a lot of their treatments is about like non-pharmacological intervention, which can be like, in my case, exercise or sometimes even manual therapy. Or we might need to assess the person so I don't know, for example asking them to take off the t shirt or something. And this, this question can be quite distrustful for some people and again, I really like to provide some practical tips, the best thing is having real informed consent also in the communication. So I'm asking this because simply explaining why we are asking, I don't know, take off a t shirt or if you are putting their hands on the patients. Why we are doing that? asking them if they're comfortable and all these kind of things help a lot people. I mean, not only are people in the LGBTQIA+ community, but in general, but above all people from the community.  

Thanks. I think what you're both communicating very clearly here, and I think it's one of the things, as a clinician who's been doing this for a little while, what we often forget, is that the clinical room often becomes very familiar for us looking after patients but we often forget the anxiety that each patient who's coming into clinic in the morning may be bringing with them. So I think you very clearly outlined how we can consider this. And I think that we will go on to talk a little bit about how we can help to make this more of an inclusive environment. But perhaps if we talk more about healthcare experiences and Grayson, I know you said you're happy to discuss this when we met previously, but could you reflect a little bit on how your healthcare experience has differed before and after transition, and what impact that had on you when seeking your rheumatology care or other outpatient care?  

Yeah, absolutely. Um, so I came out initially as non-binary in the fall of 2016. At that time, I didn't come out to any of my clinicians as being part of the community. Um, mostly because I felt concerned about how my clinicians were going to react, which is not a reflection on them. It is a reflection on the anxiety and the minority stress. Right? Um, they were all great clinicians. I, I felt very concerned about at that time, I was moving from using she her pronouns to they, them pronouns, which a lot of people still aren't sure how to use. And so I felt that if I just didn't disclose and I just dealt with the anxiety of reading my clinical notes afterwards or whatever else, you know, it, it made it a better space for me to exist in, especially as I was undergoing pelvic floor therapy at the time, and that was a really weird conversation to try to have with somebody. And I noticed as time went on that I felt more drained after appointments. It felt more anxious, opening up my electronic healthcare record to read the clinical notes, or to revisit an after visit summary, or even calling to make appointments. And, and that was really difficult for me as somebody who, again, also does a lot of research in this space, also does a lot of quality improvement stuff in healthcare. Late 2019, I made the decision to start testosterone and started on that in January of 2020. And of course, with everything being shut down a couple of months later, it was quite a while before I saw my clinicians in person again. And so for the first time, I saw my rheumatologist. After that, I had a little bit of facial hair, my voice was deeper, and we had not had the conversation at all about me either being non-binary or now identifying on the more masculine side of things. And so it was kind of a quick one run through in our appointment after other things got lifted a bit to catch her up to where I had been. I had chosen a new name and I was trying it out with friends later, made that you know my legal name but all of these things complicated healthcare, right? So if I called to make an appointment, people didn't think I sounded manly enough to have a man's name or, you know, they were confused why my insurance was on one name, but I had a preferred name on my electronic health record. Right? And even still, like, my voice is much deeper than it ever has been, which is great, I love it. I don't sound like an eight year old girl anymore. That's fantastic but it's still something where like, I might get misgendered if I call to make an appointment. I've had a situation where here in the US, you know, we're still dealing with commercial insurance, where last year my insurance decided to switch my gender marker back to female with no verification, nothing based on like a misgendered note that they had received from a clinician, which then outed me to other clinicians. If I had not already been out to these clinicians, that could have been a safety issue, because then they were rejecting claims of like, well, we have got a mismatched gender marker, you have to talk to the patient about this and so then that added a whole other level of anxiety of, I don't know what I'm going to walk into when I walk into the clinic to see an osteopath or my rheumatologist or whoever else. So overall, the experience for me has been good of going through transition, but that experience of interacting with the healthcare system at the same time has been one that has brought a lot more anxiety and minority stress into the situation.  

Thanks very much. I really appreciate you sharing your personal perspective on that as well, because I think, you know, for anyone listening, it will really give people a much clearer idea of challenges that can be faced. Negotiating the healthcare system, I think, um, one of the areas that's also of interest, uh, is relating to the impact of gender affirming hormone treatment on rheumatic disease. And Grayson, I think you've got a background or an understanding of, of this, so perhaps you could talk to us a little bit more about this. It's certainly something that I was never taught about as an undergraduate medical student. I think it's something that there is growing discussion and research focusing on. But can you perhaps give us an overview of how these therapies impact patients with rheumatic diseases?  

Yeah, absolutely. Um, this is actually a big part of, of my story too, as I kind of discovered my gender feels for, for lack of a better term. I pored through journal articles trying to find data about the intersection or interplay of Still's disease and hormonal treatment and there was nothing, there was no data on puberty or menopause or any other hormonal changes which delayed me starting testosterone because I wasn't sure if I was going to be able to maintain, you know, control over my Still's disease. As I went through hormonal changes, I knew there was a chance testosterone could impact my health in ways that I couldn't predict, including negatively, and I had to take that chance for me. Thankfully, it has been a net positive. It has eased some of the symptoms of my EDS and some of the symptoms for my Still's disease in the last, I don't know, five to eight years, there has been more research on hormone replacement therapy within rheumatology circles, especially, you know, HRT can have effects on a person's disease state. We know that hormones and hormonal changes can affect immunotherapy and cancer progression. For example, we know that testosterone, which is an androgen, can have suppressive effects on the immune system overall, including on macrophages and a variety of interleukins which as someone terrified of macrophage activation syndrome. Love that. Fantastic news, you know but there are the hormone changes that could be negative too. For some folks, for some trans women starting on oestrogen, right? This can also be a switch that leads them to developing something like systemic sclerosis, which is in the literature, I think in 2017 right there have been cases like that. And so there's more research that is sorely needed regarding treatments regarding overall disease progression and the way that hormones play with all of that and it's not just, again, for folks who are trans or folks who might be going, you know, gender related hormone replacement therapy, but for the, the 50 year old woman who's cisgender, who has just had a hysterectomy and wants to start, you know, oestrogen or for the 30 year old man who has low testosterone or even for our teenagers, right, who are going through puberty and them and their care partners need to figure out the best ways to navigate that. From a disease standpoint, we just need better research.  

That's great. Thank you very much for a wonderful summary there. It's given me plenty of points to consider and things to think about. We've been talking so far about the challenges that many people face when they're coming into clinic. So I'd now perhaps like to think about the language that clinicians can use. And so I'll come to you with this one initially, if that's okay. So how does the language that we as clinicians use affect the healthcare experience of patients who identify within this group? What are perhaps some of the examples of small changes that we can make to our language that can promote a more inclusive environment and make it make a difference for that patient when they're coming to see you in hospital.  

So language is one of the fastest ways to signal whether our space is safe or not and with language, I mean it in a very broad way, like more like contextual factors around care. So the language we use, the environment, all these factors goes together and can help someone feel safer just by entering like a place and saying like, I don't know, a poster saying you are here in a safe place. This already changed the mindset of someone and make them more open to talk about their problems and small assumptions can also have, on the other hand, like a big impact like for example, asking, I don't know, do you have a wife or a husband? Instead of do you have a partner? Because it seems, it seems something very simple but then the person starts saying, oh, should I correct them or should I not? Should I say that actually, I have a husband, even if I'm a man or the other way around, or even like the pronouns or making general assumption about roles or experiences. All this seems very minor if you take them singularly, but actually they normally accumulate and then they shape trust but on the other hand, if we make small changes, this can have a big impact so we need to see also the positive side of it and I hope that in this conversation, for those of you clinicians, researchers who are interested in having like a more of an open space for people from LGBTQIA+ community, I hope that the message is that you need to do very simple things that then can have like a big impact. So again, use neutral, inclusive language as default, or mirror the patient's language once they share it or if you make a mistake, just correct it correctly, very briefly, move on, don't over apologize and because inclusive language in general isn't about being perfect, but it's about our intention and the person that in front of you can feel that intention. Also, if you make a mistake, you know, we all make mistakes but if it's not put in a bad way or in a mean way, then the person notice they correct you, then you move on and that's it.  

That's really important and I think when we're thinking from the clinician perspective, I think, Grayson, one of the things you already mentioned was kind of the misgendering, the change in the electronic healthcare records to, to switch things back and forth. And I think as a clinician from, from my own experience, sometimes I find that a patient may come into clinic and will immediately divulge their pronouns to me, or they may be with someone who refers to them in the clinic room by their pronouns and I've often found that when I'm writing clinic letters that it's very easy as a clinician to just lapse into he said this, she said this, he has this history, she has this history and it's only when you really put this in the very front of your mind and you think about those pronouns and you try to produce a clinic letter inclusive, you actually do realize that there is an awful lot that you're using gender and pronouns and things in clinic letters and written communications anyway so I wonder, perhaps from your perspective, what can we do to make written communication with our patients more inclusive? Should it be for the doctor to inquire beforehand with the pronouns that the patient would like to use? Are there clues that we can pick up? What would you suggest to the clinicians who are listening when they're thinking about written communication to someone within the community? What kind of signals could we pick up on? What's the best way of addressing that to make sure that that patient feels included with the communications we make relating to their care?  

Yeah, that's a great question and there's so many different ways to go about this too and I think it depends on what works best for your clinic system, what works best for the people that you're seeing. I am usually very blunt, uh, and say that the best thing to do is ask, right? So if your forms are inclusive, if they ask, you know what? What's your marital status? Are you like living with someone? Are you married? And then you can ask that person to share that individual's name, that individual's pronouns. If you ask somebody what pronouns they use, right whether it's on forms or in the exam room as you're speaking with them um, I think that that's a really big thing. I also think that the more we can maybe think about writing our letters or referrals or anything like that, and just generally neutral terms, right, instead of like she said this like patient disclosed X, Y, Z, right? It doesn't have to be that we're only using neutral terms for folks who are, you know, non-binary or transgender. It could be that we try to do that with every patient, which is a probably a big shift for a lot of people to think about and so I'm not suggesting everybody should do that but if somebody feels comfortable, wants to try that out, I think that's a great idea. I also think, you know, one thing we haven't talked about is like letters or referrals that are written to other providers, these can out us in ways that put our safety at risk and so, um, that can happen with lab orders too. For example you know, I asked my rheumatologist to order labs that my primary care provider would want done because on the paperwork that my primary care provider has, she has sex assigned at birth on there and so it says female, she can't remove it from her lab orders. My insurance is already weird about my gender stuff and so my rheumatologist just orders, you know, my labs and all of that and then I share that back with my primary care provider and so it's also talking about and figuring out the ways that you can get the patient, the care that they need and, and make sure that they're taken care of in all aspects and not maybe just what you're 100% percent seeing them for and I think in the end, to me, all of this is about consent and, and a trauma informed mindset, right? So let's say you're talking to a patient, they disclose that they use they, them pronouns and you live in a country where like that's maybe documenting that could put them at risk or there's not a way for you to document that in your health records, whatever, let that patient know, right? let them know, like I'm going to, you know, make myself a personal note that you have these pronouns and I will do my best to use them, where do you want me to use them? Do you want me to put it in the clinic system? because here are the potential risks for that, which also means that clinicians will have to learn more about, from a political standpoint, what's going on in your country for people in this community, right? Or in your area? um but if you're able to disclose to us the safety risks, it allows us to make an informed decision and another example, right? If you're referring us to another provider, do you know how friendly or affirming that provider is? Can you call and have a conversation with their office? If you don't know how friendly or affirming that provider is, can you let us know that you're not sure? And to let you know what our experience is so that later on when you make referrals, right, you've got that information and I think it's all about making sure that it's a shared decision making setup, right? because again, if I know that in the US, right, like documenting pronouns could put somebody at risk and especially in certain states, then my suggestion to those patients would be have a conversation with your provider if you want to, but make sure that like you're aware of, of the potential risks to you as a patient and it would be the same, the same suggestion to clinicians is make sure that you're aware of the potential risks that a patient may be putting themselves at by documenting this information so that they can make the best decision for them.  

Thanks so much. There's some really, really important, impactful recommendations there that I'm sure our listeners will find incredibly helpful in practice. I think if we now move perhaps to think about your role both clinically and with research, um, what design elements help make your clinics feel more inclusive for patients who are attending? And perhaps you can tell us a bit about your, your clinical work and from a research perspective, how you bring this into the care you deliver.  

So I guess from a clinical perspective, we have touched upon some of them. And mainly inclusion can be built through signals that can be visible and structural because as I said, patients tend to scan the environment all the time. Is it space? Is this space safe for me or not? And this can go through intake forms that go beyond the binary gender options, inclusive imagery or visible signals like poster badge, lanyard, and so on and as I said, this needs to match the staff behaviours because you can have all the lanyards you want but then if the person keeps on like misgendering you, even if you correct them, then they want to make that work and also, this was mentioned by Grayson, a system that allows names and pronouns to be recorded and used correctly. We know that sometimes our systems are a bit old, for lack of a better word, but let's try to maybe improve and update them so that they can also become more inclusive and again, it's a cumulation of these small, consistent signals that helps. So try to audit your clinical environment from a patient's perspective and if you can have one of the patient's audit in your place even better, if you can update forms and digital system and try to inclusivity that is consistent and perhaps if we now think more from the research perspective on your side, um, what would you say are the common mistakes that researchers will, will make? In particular, when you're thinking about designing studies that may be involving patients from, from the community? What are your recommendations and what have you seen done well? And what have you seen done perhaps less well? And how can we learn from it? So in terms of well, it's difficult to say because basically there is no research on the topic in rheumatology so I guess that this is the first pitfalls and I guess that one, the big one is treating the, the whole LGBTQIA+ population as an afterthought and how this shows up not collecting relevant identity data using binary or outdated categories for gender designing studies that unintentionally exclude people. This is another big problem, and probably some of you might know, the NIHR has recently published its Sex and Gender research policy, which now applies to all funding opportunities from November last year. Alongside this, researchers are encouraged to follow the guidelines and these are international recommendations that aim to improve scientific quality by ensuring that sex and gender are properly considered and reported in research and at the core. I guess that this is about being more precise in how we collect demographic data so distinguish clearly between sex assigned at birth, gender identity, and where relevant sexual orientation or others that apply but it's also important to say that we shouldn't just collect everything by default. These, of course, are sensitive information and sometimes intimate questions and patients might say, why are you asking me those questions for, I don't know a study on exercise treatments, so what we collect should always be driven by our research question like in the case of exercise, maybe if you are doing like an exercise treatment in gym, maybe it's important to ask because we know that there is harassment in locker rooms. So in those cases can be good but if it's like in our university, it's an inclusive, uh, system and we know that everything is fine maybe we don't need to ask like sexual orientation when it comes to exercise, for instance and just to give you like a concrete example, we have recently completed a scoping review as part of a grant, which was led by Doctor Benedetto from Italy, which is looking at sexuality in rheumatic and musculoskeletal research so a topic where sexual orientation can be quite important and out of, we are including 290 studies, it's quite a big scoping review and only 7 of them explored the sexual orientation and more broadly, very few studies distinguished properly between sex and gender, most just reported a single variable labelled sex, so there is a clear gap not just in inclusion, but in how we conceptualize and measure these aspects in research and as researchers, as quantitative researchers, we like to generalise our data when applicable but to do so, we need a sample that actually reflects the broader population, otherwise, we are just generalizing our data to a specific subset of the population and also another issue is assuming that these groups are small, actually, statistics says that people from the LGBTQIA+ community are between 8 to 10% of the population and these statistics is probably even lower because people might not disclose it or they might not be sure and this exclusion that leads to gaps in evidence and ultimately for our car, so in terms of tips for researchers, build inclusivity from the very beginning, from the design stage, not after, try to use inclusive, up to date demographic questions and try to think of which question you want to ask based on your research question, try to engage. And above all, here in the UK we are, thank God, doing more and more PPE activities, so try to have people from the community when you design the studies and try to report data transparently, even if the sample sizes are small because if we don't measure inclusion, we can't in the end improve it.  

Great. We have covered a lot in the time that we've been discussing here. It's gone very, very quickly. And I think we've talked about various challenges. Uh, it's been very powerful to hear the impact that this has on patients coming to clinic but I would perhaps like us to finish on a positive note. So with you both here, I'll put the same question to you both. I would say, what gives you hope about the future of inclusive healthcare? Uh, Grayson, perhaps if I come to you first. I appreciate this is a big question, but it would be very keen for your thoughts.  

Yeah. I think the thing that that gives me the most hope is that overall, I think people are refusing to accept healthcare systems as the flawed systems that they've been right for a long time. LGBTQIA+ people, especially those of us with chronic conditions, have had to navigate systems that were not designed for us. They weren't designed necessarily to intentionally exclude us, but they weren't designed to include us. Right? And what's changing is that we're not just naming those gaps and saying, hey, there's a problem here, we're organising around them, we're building data, we're doing research, pushing for even better research and demanding to be included earlier in in these processes. And I'm seeing a shift to, like Simone mentioned, where lived experience is really starting to be treated as real expertise and it's not everywhere and it's not consistently, and we can all do better at that but I think it's enough to show that it's possible and that change, positive change is possible regardless of what else is going on in the socio political systems we're operating within. So I think my, my biggest hope is it's not that all of these efforts will magically fix the system, it's that us coming together to work on it will help us to develop better systems that that serve the people that are most impacted and allow us to increasingly shape what comes next. And I think that's where real change tends to come, regardless of what systems we're working on. So yeah, I guess the, the short version, right, would be that, that we're doing better at inclusion and at least talking about how do we get to a more inclusive space. 

Great. And I will put the same question to you. Simone, I'd be very keen for your thoughts. 

In general as a person, I tend to be quite positive, thank God and in general, I'm noticing that there are few changes, maybe small ones, not everywhere, unfortunately. Sometimes I also talk from a perspective that is quite lucky, now, living in the UK is quite advanced compared to other countries, but in general we are noticing that there is a bit of a shift both in research and in clinical practice. I guess there are also this podcast is a very nice sign itself and also the series because now we are talking about the LGBTQIA+ people, but there are also people who are neurodiverse and the fact that there is this interest is already for me is already a positive sign and I was very happy when I was invited to be part of it and I guess that one of the things people need to realize that inclusive teams can happen by accident so they want like one day they want knock to your doors and say, oh, finally we have like an inclusive team, but it needs to be designed to support and sustain in time because above all, I was saying, in this political situation, we have rights that can be taken in a second so we never need to take these things for granted.  

Thank you both very much. So with that, we will draw today's podcast to a close. I know that I am certainly leaving now, what, 35, 45 minutes later, much better educated with much more thoughts about how we can care for patients better. So, Grayson & Simone thank you very much for your candor, your openness, your expertise and sharing your thoughts with me today. So I will conclude today's Talking Rheumatology podcast, remember, this is part of the Patient Voices series, there are many more of these podcasts available online, so please do check them out and I'm sure you'll join me in extending my thanks to our two wonderful guests today Thanks very much.