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Gavin: Hello, welcome to the Lancet Voice. It's September 2022. I'm Gavin Cleaver, and I'm here with my co host, Jessamy Bagenal, for another dive into some fascinating health discussions from around the world. This time, we're speaking with Dr. Heather Van Epps, Editor in Chief of The Lancet Rheumatology. Recently, Dr.
Van Epps helped organize a summit looking into gender and equity issues in the field, and so we've invited her along to discuss some of the ideas presented at the summit, as well as to talk about The Lancet Rheumatology's fantastic podcast series, Clinical Realities. This series looks at problems facing underserved populations worldwide, And you can find that podcast for future reference at thelancetrematology.
buzzsprout. com. But for now, let's get on with this podcast. Here's Jessamy and I speaking with Heather Van Epps, editor in chief of the Lancet Rheumatology.
Heather Van Epps, editor in chief of the Lancet Rheumatology. Thank you so much for, for joining us on the Lancet Voice. And we wanted to highlight an event that you had been organizing and, and sorting out over the last. Few days. And that's this summit on gender and equity. So tell us a little bit about how that came about.
Heather: Sure. Well, well, thanks for having me. First of all. So sometime early last year, 2021 the parent company of the Lancet group Elsevier decided to run a series of what they called Lancet summit meetings. And they came to the Atlanta editors to pitch ideas. For, for these two day conferences.
So I started to think about the field of rheumatology and, you know, what the important questions and debates that are going on in the field. And I also reached out to our international advisory board. So we have a really engaged board at the Lancet Rheumatology. So I was really keen to hear their suggestions of what they thought should be covered in, in such an event.
And what I wanted to do was to Really have a timely topic, an engaging topic, but also one that wasn't sort of already really well covered in the rheumatology conference circuit. So I got a number of different suggestions from the board, but there was really just 1 that, that really resonated with me from, from the beginning.
So one of our board members, Oliver Distler from Zurich, along with a colleague of his, Anna Maria Huffman Vold, who's in Oslo, suggested that we cover sex and gender in Rheumatology. And, you know, it was just one of those things where I knew immediately that, that this was the topic that we needed to put forward to Elsevier.
You know, there's, of course, an increasing focus on the importance of improving inclusiveness and research. And the topic also aligned really well with some of the efforts that are underway at the Lancet group around promoting inclusive research and improving the way that sex and gender data are reported in the papers that we publish.
But ultimately sort of in my mind, it came down to the question of unmet needs. So this is of course, Something we talk about all the time, right? And in the context of clinical care and the research that we're considering for publication, but we don't talk about it in the same way or as often in the context of research itself, in a sense, you know, it certainly obviously applies to research.
So we know that we need. More research and better data to understand how aspects of sex and gender. I mean, all aspects of diversity really affect clinical care and affect research. You know, the ultimate goal, of course, is to improve care for all patients and to better understand popular populations that have.
been traditionally underserved and underrepresented in research. So really, you know, the, the topic just spoke to me, the timing seemed perfect with regard to other things that are going on at the Lancet group and in publishing in general. And so, yeah, it was just sort of a perfect storm, the perfect topic at the perfect time.
Gavin: And what, what specifically makes gender inequity so important in, in rheumatology? Of course, we've talked in kind of general terms about quite, quite often about how there are these unmet needs, as you said, and how so often in medicine, the kind of, the man is the kind of like standard units of of of clinical care.
So what are the aspects that are so important in, in, in rheumatology where you work?
Heather: Right. Well, I would agree with you and say that the topic is really important across all clinical specialties. But for rheumatology, so A lot of rheumatic diseases show a very strong sex predominance. Gout, for example, is, is mostly seen in men, whereas lupus predominates in women.
Lupus is an autoimmune disease, and of course most autoimmune diseases affect women more than men. So, you know, there's already a lot of of influences of sex and gender in rheumatic diseases themselves in terms of their prevalence. But going beyond that we also know that there's lots of differences between males and females and different genders.
With regard to the manifestations of disease. So the different symptoms that arise predominantly as well as responses to treatment, potential adverse effects of treatment. And then we also see differences in health seeking behavior and clinical care. And that includes diagnosis, prescribing practices.
So there's lots of sort of pieces of information out there for rheumatology, but. But we're really just scratching the surface at this stage really just beginning to understand sort of the various ways that sex and gender influence all of these things. So it's really important, certainly for rheumatology and, and the care that we deliver.
And then. You know, we also again across specialties, we have very few data on gender diverse populations. And so there's a real unmet unmet need there to improve data collection and reporting for these populations. So that we can get a clear picture of sort of their experiences and their unmet needs when it comes to clinical care.
And that's something that actually came across really clearly during the summit was was the need for more data. For data, disaggregation for analysis by sex and gender and particularly for gender diverse populations. So we don't even really have a clear idea of of the prevalence of rheumatic diseases in these populations, much less, you know.
their experiences in clinical care. A great example is transgender populations who are receiving gender affirming hormone therapy. So it's easy to see how this could, could impact rheumatic diseases and the manifestation of diseases. But at this stage we really don't have much of an idea of how so so for all those reasons, I, you know, I really think this is important in rheumatology and beyond.
Gavin: So it's, it's kind of, it's really early in the conversation. It's not like we're saying we have the data. This is the kind of thing we need to do. It's like we don't actually have any of the data that we need at the moment.
Heather: Absolutely. Absolutely. I think that was, that was really one of the key themes of the conference was the real need for better data and a better understanding of the various ways that sex and gender.
Play, you know, play into disease and clinical care.
Jessamy: I mean, it's, it's new, isn't it? But there is this sort of huge historical backdrop in that, I mean, women with rheumatological problems were always just told to have more babies, right? I mean, there's like this extraordinary kind of medical advice that was given to people as.
You know, well, this is the only thing that might make it better, you know?
Heather: Absolutely, and it's really interesting because although there are some really striking examples of improvement of disease during pregnancy on the flip side, There's also a lot of instances with people with rheumatic diseases where things get much worse during pregnancy.
So yeah, this is, you know, this is a really interesting sort of historical look at, at at this and, and, and the advice, you know, that, that was given to, to men versus women with these diseases. And we still see differences in Diagnosis we see differences in, in what women and men are prescribed predominantly, you know, things that in a sense really surprised me that that those differences are, are still there and, and existing.
So, yeah, so it's, so it's an old question and it's a, it's not a new thing at all. But but yeah, but at the same time, in the end, we really don't have good data yet and we need to have better data. So, yeah. It's, it's really it's, it's really exciting and interesting and I think it's just the beginning.
Gavin: Okay, I'm going to ask a potentially very naive question. What's the interaction between pregnancy and rheumatic diseases?
Heather: Well, I mean, I think, you know, I think the easiest answer is hormones, right? There's all sorts of unbelievable hormonal fluctuations. Again, I think, The depth of our understanding is probably still relatively limited but certainly there's all sorts of changes in the immune system that happen and, and when you think about autoimmune diseases you can easily see, you know, how those fluctuations in different immune populations and, and activity could play in when it comes to the, you know, sort of interface with between the, the mother and the fetus.
Jessamy: And I guess it's also difficult because so many of the sort of rheumatological diseases can present in such a wide variety of ways that diagnosis is often quite difficult. And so again, you have that historical backdrop of women often being, you know, told that they're hysterical or, you know, they're not having enough sex or, you know, way back when or, you know, whatever.
But because it They are sometimes difficult to diagnose because they have such an array of sort of symptoms. There's that whole issue that comes into it, you know, as well, which obviously, as you've said, makes a difference in how people are diagnosed, how quickly they're diagnosed, whether you're a man or a woman.
Heather: Yeah, it's I think that's a great point. And, and, you know, many rheumatic diseases are rare diseases as well. So there's difficulties in diagnosis from that standpoint. But also just the incredible heterogeneity from from patient to patient and and that's something, you know, that's something we considered covering in the context of a Lancet summit more from the angle of precision medicine, but that is something that.
That is a very robust conversation already. And I think there's so many different aspects to heterogeneity and, and the sex and gender aspect of it is really, is really getting a lot more attention now, but, but certainly needs it.
Gavin: You mentioned the summit again, then. And so it's probably a good time to ask you kind of what some of your key takeaways were.
And if you had any particular highlights from the summit as well, and any kind of presentations that really stuck out, that sort of thing.
Heather: Yeah. So, I mean, in terms of. of sort of takeaways in the broad sense. I, I, I'm going to sound like a broken record, but I would say really the most important thing was around, you know, awareness and sort of intent.
Because as we said, you know, I think there's a general consensus that sex and gender and, and other aspects of diversity impact disease and health and clinical care in a variety of ways, but there hasn't been. Enough meaningful action in, in that sense. So, you know, whether we're talking about funding bodies and ethics boards and regulators in terms of incorporating sex and gender into the design of research and clinical trials to journals asking authors to be sort of more inclusive and transparent in their reporting, so really, I, I hope that the summit helped sort of raise awareness about the importance of all these things. These things are starting to change. We are seeing more funders insisting that, that sex and gender are considered in research design. We're seeing initiatives from various journals with regard to reporting of these kinds of data.
So I, I really hope that, The summit you know, raised awareness of this and, and really sort of start to, to spread the word that, that we need to do better. We need to do better in terms of the data we collect in terms of the research studies that we do and ultimately, you know, the care of patients.
So, so that's what I hope is, was sort of the, the broad takeaway. You know, there were, there were, I, I'm almost sort of loath to pick out. actual highlights from the, from the talks, but in terms of what we were just talking about in the, in the perception of diseases and, and how sex and gender play into that.
There was a really interesting presentation from Julia Simard from Stanford University in the US and. They did a really interesting sort of simulation study in diagnostics. So they created a hypothetical case of lupus where all of the clinical characteristics that they presented and they did this with rheumatologists who volunteered, volunteered to, to join the study.
So all of the clinical characteristics of this lupus case. Were held constant and the only thing that they varied was whether the patient was black or white, male or female and what this really clearly showed that even today our perceptions of what we think as a classical lupus presentation really impact both the speed of diagnosis and the accuracy of diagnosis.
So rheumatologists, even in, you know, the, the 21st century really. Didn't do as well diagnosing a white man with lupus as they did a black woman with lupus. Of course, we know that lupus predominates in in black women. And this is certainly true in the US, but everywhere. And, and that to me. Was really eye opening and, and interesting.
There were a lot of questions around sort of the, the characteristics of the, of the people answering the question, you know, the rheumatologist themselves, but they weren't, the study wasn't powered to get into all of those nuances, but it was really quite striking. I'll mention one other that that is more sort of from the biological standpoint of things.
And that was a presentation by Owen Woodward, who's also from the U. S. So he does a lot of research on the genetics of gout. So not, not everything that he talked about was new. I mean, this, this is research that goes back some years, but he showed data that showed how absolutely remarkably different.
the gene regulation is between males and females in terms of urate transporter molecules that are expressed in the kidney. And, and actually gene regulation is completely opposite in males and females of these transporter proteins. And for example, they did some experiments where they challenged with a high level of urate.
And it was so black and white, you know, genes that went off in males went on in females. And, you know, some of these, some of these experiments they did with genetic, genetically manipulated mice and others with human cells, but really provided one of the most. and, and satisfying biological basis for, for the differences we see in clinical disease.
And, you know, we don't really publish many or any at this point studies using animal models in the Lancet rheumatology, but it really provided such a nice illustration of the importance of these models. And. in terms of our understanding of the, of the biology of disease, just really remarkable data.
Gavin: That's really interesting. It sounds absolutely like an absolutely fascinating illustration. Was there anything about the summit that kind of really surprised you, like blew you away?
Heather: Say that there were sort of any huge blockbuster findings, you know, we didn't have any presentations showing, for example, that a specific drug worked amazingly well in men, but not in women, or, you know, was overtly harmful in one population versus another.
I think, you know, most of the differences that were presented and things we're starting to see around sex and gender are more subtle than that. But in aggregate, it's really quite remarkable how many differences and how many nuances we see when we start to look at the data. disaggregated, if you will, by, by sex and gender.
Jessamy: That's interesting, isn't it? And I mean, I think it's just such a wonderful example of how, you know, journals and editors can try and lead the way on change because this is how change happens. You know, it doesn't necessarily happen on that big breakthrough of finding a drug doesn't work on this or that, but by kind of, you know, really raising the profile of this and giving people time and space to convene and discuss it.
That's a great achievement. It sounds like it went, went really well.
Heather: Yeah, I was really pleased and, and And I do think that, that there is a role for journals in, in promoting this and, and, and really, you know, raising awareness and, and one thing that also struck me in the context of the summit and also in our October issue of the Lancet Rheumatology, which was dedicated to the same theme of sex and gender and rheumatology.
is really that there's a lot of sort of low hanging fruit. You know, we have a multitude of phase three clinical trial data, most of which has never been looked at and disaggregated by sex and gender. So a couple of the research articles that we published in that issue, which just, just went live last week, we're taking a look at clinical trial data and, and breaking that down you know, in terms of sex and gender.
And again, you know, the differences aren't. incredibly stark, but there was one study, for example, looking at a clinical, a large phase three clinical trial of patients with systemic sclerosis related interstitial lung disease treating, treated with Nintendinib and showing that the adverse events really look a bit different between men and women.
And you can see how that could really enter into the discussion between clinicians and patients in terms of what to expect. So again, you know, sort of differences that you, you might consider sort of subtle or nuanced, but, but really important for patients.
Jessamy: Yeah. Crucial for patients when they're dealing with such difficult diseases in the first place to then, you know, not really have any idea kind of gendered aspects of how treatment is going to affect them.
These types of things make people's lives, you know, either drastically more difficult or easier, you know, even just being able to have those conversations. So that all seems like. extremely beneficial. When you think about sort of rheumatology as a specialty more broadly, where do you see it? Where do you see it heading?
Where, you know, you sort of said there are these areas of low, low hanging fruit for this particular sort of aspect, but do you see this as something that rheumatology as a specialty might really pick up and take forward now? And be able to, you know, almost lead the way in or?
Heather: I hope so. I would like to see that.
I think, I think there's certainly the opportunity there. And I think it also provides a nice example, for example, of rare diseases, you know, and in terms of reporting and the aspect from the journal aspect of, of disaggregating data, the real importance of having those data published so that People can come back later and do meta analyses, for example, on a, on a large group and have those data available desegregated by sex and gender that, that could really give insights into rare diseases where, as we know, Recruiting large patient populations into studies and clinical trials is really challenging.
So I do, I do think there's an opportunity within rheumatology from that standpoint, and it's difficult to say. I don't know if we're, if Rheumatology is sort of ahead of the game or, or, you know, kind of on par with other specialties, but I do think there's a lot of engagement and appetite that I see in the rheumatology community.
So in that sense, you know, I do think there's, there's a lot of opportunity to lead the way in that.
Jessamy: Interesting. And I mean, it's also a thing that as a journal, you know, you're running this podcast series on underserved populations, which. you know, which again, I mean, it's different, but there are similarities there about, about vulnerabilities and about people being left out of rheumatology care.
How has that kind of conversation gone? And, and, and what do you think it means?
Heather: Yeah, well, the podcast project is, is one that's been really close to my heart. And there were a couple of reasons that, that we decided to do it. And one was, as you say, a desire to. Really tackle and have a look at real world sort of rheumatology issues and, and capture voices and stories that, that we don't, you know, normally hear both, both patient and rheumatologist stories.
You know, we talk a lot in rheumatology about, as we've said, disease, heterogeneity and precision medicine and the, the real value of biomarkers and, and, and trying to figure out, you know, we have all of these biologics. They typically work in, you know, maybe 30 or 40 percent of patients, but really not well in many patients and, and the importance of, of dissecting this heterogeneity and figuring out, you know, which drugs are going to work, work the best in which patients, but that's a conversation that.
Really doesn't pertain to a lot of parts of the world where, you know, biologics aren't even available. And so it's, you know, a lot of the things that we get excited about in rheumatology and other fields are quite, in a sense, quite academic to, to much of the world. And so to, to really. Take a look at reality, you know, what does reality look like for rheumatology and in places that we don't think about as often or populations that we don't think about as often.
So the first episode, you know, tackled care, rheumatology care in for undocumented immigrants in the U. S. You know, these are. This is a hugely challenging setting, it goes without saying, but, you know, people with very serious chronic diseases that have, have progressed really far, they have a huge level of pain and disability, and, and oftentimes are living without any clinical care at all or relying on, on free services.
And really the, the, you know, generosity of, of the rheumatologists who engage with those free services and, and it's really quite heartbreaking, but, you know, important to, to take a serious look at, at the people who are being sort of left behind in health care. You know, the podcast also covered rheumatology care for Aboriginal populations.
We talked in one episode about the challenges of setting up a completely new rheumatology service in remote Africa. Really a huge variety. And, and again, just, Really the importance of, of capturing those voices in the pages of the journal and, and, you know, the, the various offerings of the journal, I, I think is really important.
Jessamy: I think you're, you're so right. And it's so, it's such a great way to look at things also, because we see it in many specialties, particularly where you've got, you know, huge investment from private pharma, biomedical, because there have been these breakthroughs. However, you know, effective, they might actually be in the real world in terms of the percentage of people that they're really making a difference for.
But, you know, huge investments, so many different trials and this marginal new gain over this marginal new gain. And then, you know, then you have this whole other sort of much larger. problem where you could make significant gains to a much broader population, which is more about public health, which is more about, you know, access and equity and, and those types of issues where, you know, there's sort of health systems and health services.
This isn't a new thing. We're like, these are, these 20 years, but we still feel that there's a tension between the two, the two parts of care and that there isn't really A good way to sort of bring them together, either from a research agenda point of view or from just a sort of practical care point of view.
Heather: Yeah, and I think, I think that's, you know, it's a, it's a problem we need to get a better handle on, I think, and, and, and figure out a way to increase the appetite for, for doing those kinds of studies that are really so incredibly important for, for so many patients in the world. You know, some of them, some of the more exciting papers that, that we've published are things that I've been really excited about, you know, we had a trial looking at a combination of synthetic disease modifying agents in, in rheumatology, two very cheap, very accessible agents and testing the combination.
And I think, you know, there's probably not enough studies. Looking at how best to use really widely available and cheap drugs that we already have you know, it's much more exciting and sexy to think about a new cytokine target and a brand new biologic, a new mechanism of action. But again, you know, those are things that, that, you know, inevitably leave entire regions, you know, out of the, out of the conversation.
So I do think we, we. Need to do a lot better. And it, and it's a complicated issue. And, and you know, we also, I think in terms of the whole concept of, of more inclusivity and research and, and clinical work, I think also important to engage the pharmaceutical industry more in those conversations. You know, it's, there's no getting around the fact that, you know, large pharma trials really are critical in, in, in bringing new, new.
treatments and new regimens to clinical care. So I think there's a lot of challenges, but there's a lot of opportunity as well.
Gavin: And of course, this is where I should point out as the producer of the Lancet Rheumatology series, that if anyone wants to listen to the Lancet Rheumatology
Heather: field,
Gavin: they can go to thelancetrheumatology.
buzzsprout. com. And now they'll find links to subscribe to it on on Apple, on Spotify, on Google, any platform that you like, really. And of course, Heather, we should mention as well, thanks to your three fantastic guest hosts that you've had since we started the podcast.
Heather: They've been amazing. So we've worked with, as you say, Gavin, three guest hosts.
So David Liu from Australia. Pooja Mehta from the UK and Lola Falasinu from the US. And what we wanted to do there was to really engage sort of earlier career rheumatologists with the journal. And one way we thought to do that was by opening up a call for guest editors for this podcast series. And And these were the three that, that we took on and, and they've just been so energetic and engaged and really brought energy and fabulous ideas.
And you know, I think are, are lucky for us individuals that will continue to contribute to the journal going forward. And I think what happens sometimes when you have a good idea, it sort of begets other good ideas. So in the end, I was so pleased we had so much interest in this guest podcast host.
Spots that you know, we had all of these really interesting candidates. We decided to run a year long series of profiles of early career rheumatologists and researchers. So, again, if people want to read those, I really hope that that people will go and look at those. Some really fantastic stories.
And I think, you know, from the editorial perspective, thinking about the success and the longevity of a journal, you know, it's key to reach out to those sort of up and coming rheumatologists, clinicians and researchers. So it's, it's really been a fantastically enjoyable and interesting project. So yeah, I hope, I hope people will listen if they haven't already.
Gavin: Yeah, again, that's the lancet rheumatology. buzzsprout. com, you know, I'm just getting these getting these plugs in here. But it's also been fantastically enjoyable to speak to you, Heather, about these topics as well. And The summit sounds, sounds so fantastic. And of course those podcasts, I highly recommend people go and listen to them.
There's some really, like you said, kind of energetic, fascinating conversations with some people who are really engaged on these, on these super important topics. So highly recommend it. But yeah, Heather, thanks so much for, for chatting with us.
Heather: Thanks so much for having me.
Gavin: That's it for this episode of the Lancer Voice. If you want to carry on the conversation, you can find Jessamy and I on Twitter on our handles at Gavin Cleaver and at Jessamy Bagonal. You can subscribe to the Lancer Voice if you're not already. Wherever you usually get your podcasts. And if you're a specialist in a particular field, why not check out our In Conversation With series of podcasts, tied to each of the Lancet specialty journals, where we look in depth at one new article per month.
Thanks so much for listening and we'll see you again next time.