NHMRC and the Department of Health, Disability and Ageing hosted a webinar on sex, gender, variations of sex characteristics and sexual orientation in health and medical research in November 2025.
The webinar included presentations from a range of speakers on:
- the joint Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research
- how the Statement is being embedded in NHMRC and MRFF application and assessment processes in 2026
- better practice approaches for considering and integrating sex, gender, variations of sex characteristics and sexual orientation in research.
The webinar took place on Friday 21 November 2025 between 11:30 am – 1:00 pm AEDT.
You can watch the full webinar recording and view the transcript below.
- Video transcript
Prue Torrance 0:03
My pronouns are she, her, and it's my pleasure to host today's session.I would like to start with an acknowledgement of the traditional custodians of the country throughout Australia and their continuing connection to land, sea community and sky. I myself am joining you today from the lands of the Ngunnawal and the Ngambri people, and I pay my respects to their elders, both past and present. I would like especially to extend a warm welcome and acknowledgement of respect to any Aboriginal and Torres Strait Islander people joining for this webinar today.
We have a fabulous line up of speakers for you today and we are going to be talking about the Statement and about how to apply it in health and medical research. We are here to talk about the Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research. Some of our speakers will give some opening remarks to set some of the context and tell you why it matters, and then we're going to go into a bit of a deep dive to really look at best practice in research and what we can do. And, of course, there will be a Q&A session at the end and you can access that Q&A function now and see questions that have already been entered and enter your own questions at any time. You can upvote those questions so that we can prioritise them. But I do encourage you to listen to the presentations because some of your questions may be answered through the course of the presentations and then you might have some different questions you want to pose to us towards the end of the presentations. We are also being recorded, and the webinar will be made available on our website after this presentation's concluded and there's an opportunity then if you've found it useful for your own research and communities, please do share it with your colleagues and networks after. I would like to start with inviting some opening remarks from Professor Steve Wesselingh, the CEO of NHMRC, over to you please Steve.
Professor Steve Wesselingh 2:15
Thanks very much, Prue. I hope you can all hear me. And thanks very much for joining us today on this webinar on sex, gender variations of sex characteristics and sexual orientation in health and medical research. Importantly, this work has been undertaken very much as a collaboration between us and the Department, particularly the HMRO who look after the MRFF and it really is a terrific example of the alignment that's been developed now between the MRFF and the NHMRC across the spectrum of health and medical research.I really want to focus on why - why have we developed this Statement and why are we implementing it in our grant application processes, both for NHMRC and MRFF in 2026?
And there are a number of answers to that question, but the most important one, which is really front and centre in our strategy, and the HMRO MRFF strategy, is equity. So you know, equity is such an important issue, it's clearly in our strategy.
It's clearly now in the draft National Health and Medical Research Strategy and really we want to ensure that health and medical research undertaken here in Australia provides an evidence base that can be applied and translated and, most importantly, improve health outcomes for everyone in Australia. While there are shifts in the geopolitical environment and we have geopolitical challenges, sort of a euphemism for what you know I'm talking about and we can already see today some interesting changes in the advice being given out in the United States. We're not moving away from equity being front and centre and so we want equity embedded in all of our research and we want equity embedded in our desire to improve health right across Australia.
And importantly, we want to be showing that we can reduce health inequities and that I think is the most important way of improving health. So often inequities and inequalities drive poor health outcomes, and we want to improve that.
Accounting for Variables in health research in terms of this Statement is not only important for equity, but it's important in producing high quality, transparent and rigorous science. And so if you're not taking into account all of the Variables when you're doing science, you're not doing high quality science. This applies right across the spectrum of science, from discovery all the way out to policy. And you know, there are great examples in basic science, in biomedical discovery science, of where these Variables have been taken into account and new proteins have been discovered, Nature papers have been written and new opportunities for drugs, devices and diagnostics have been developed. So you know, I think it's exciting right across the spectrum and you know it's pretty clear how this works in clinical research.
But it also has to work in public health research and as I mentioned in the development of policy. In regard to that we can see right right across most of the world that this has been recognised by other funders, including Horizon Europe, the Canadian Institutes for Health research, UKRI, the Wellcome Trust, Gates and others. The journals have also recognised this, with several of the really top international journals like Lancet and Cell having guidance on their expectations of authors across this area. If you're interested in learning more about this and also how and when this has been developed internationally and the success of the developments internationally, I recommend you have a look at our November 2024 edition of Speaking of Science with Cara Tannenbaum from the Canada. Who is both a really charismatic speaker but very knowledgeable and it's a great presentation and worth having a look at. So while we're putting out these expectations, we do realise that a lot of researchers, a lot of people watching this webinar, are already doing this and doing it really well. But we also know that other people haven't necessarily started thinking about it.
And so we do want those people who are doing it well to help those people who haven't been thinking about it, but we also want to provide you with as much information as we possibly can, both through this webinar, but also through our grant and peer review guidelines, links to resources on our website.
Because ultimately the success of this is in the hands of you guys. It's in the hands of the researchers and the peer reviewers, and we really need your support to make this a great success. And we also need the support of your institutions to drive change.
And ultimately the outcome will be more equitable science and better health outcomes from that equitable science. So, I'm really excited. I think this development is really important to NHMRC, totally supported by our Council. I'm very interested and excited to see this play out in the implementation phase. As I mentioned, this has been a joint process with the HMRO and the MRFF and I'd like to hand over to Nicole now to make some comments. Thank you.
Nicole Beard 8:23
Thank you, Steve. It's such a pleasure to be with you for today's webinar. I'm here on behalf of the Health and Medical Research Office at the Department of Health, Disability and Ageing, where we're responsible for the medical research future fund or the MRFF. So, as Steve mentioned, we've worked really closely with NHMRC on accounting for the Variables in research, we're so pleased that the Statement’s principles are now being embedded in our granting process and the research that's going to be funded across NHMRC and the MRFF. I want to mention a number of pieces of work that are occurring across the Department, the portfolio and a growing policy environment that's supportive of health equity, which is work that really complements integrating the Variables in research. So, this includes the National Women's Health Strategy, which is supported by the work of the National Women's Health Advisory Council.Many of you will be aware that findings from the end gender bias survey, notably that two and three women actually reported healthcare related bias and discrimination. There's evidence of persistent gender inequity across a range of health issues and settings, and this came out of a literature review, which was used to inform strategies to address sex and gender bias in the health system. This is work that was commissioned by the Council. So some of the findings included a lack of sex and gender awareness in many of Australia's clinical practice guidelines.
Clinical guidelines must ensure to reflect best practice for all and NHMRC and the Department have been taking steps to ensure that clinical guidelines and clinical guidelines that are endorsed and developed consider an account for sex and gender differences throughout the guideline development process. This is important. It's important that research incorporates and reports on sex and gender differences appropriately. Because clinical guideline developers rely on a really robust evidence base that's produced through research to inform the advice that they give in these guidelines. The Department also recently released a National Action Plan for Health and Wellbeing of LGBTIQA+ people, which also focuses on improved research on LGBTIQA+ health that builds the evidence base and addresses knowledge gaps. Back to the Statement, we'd like to thank everyone who's been involved in its development, many of whom I'm sure have dialled in today and are with us.
The targeted and public consultation that was held really gave opportunity to hear from a range of researchers, consumers, representatives and those with lived experience who generously shared their expertise and insights. The diverse perspective, experiences and knowledge of women and men, both cisgender and trans, non binary people, people with innate variations of sex characteristics and people with diverse sexual orientation are valued, respected, and contributed to the final Statement, which has been well received by the sector and beyond.
I'm really looking forward to the rest of the webinar, including any opportunity to answer your questions at the end of the session. Now I'd like to hand over to Anushka.
Anushka Patel 11:57
Thanks very much, Nicole. It's also my pleasure to join everyone. Today I'm speaking from the lands of the Gadigal people of Eora nation and really for this important event. So I'd like to start off by just echoing Nicole's comments and Steve's comments about why accounting for these Variables in health and medical research is so important in terms of both scientific quality and generating equitable health outcomes. In both my research and clinical practice as a cardiologist, I've seen the impact of sex and gender differences in health and disease. We know there are sex differences in every tissue, every organ of the human body.In my own field, there are many differences associated with cardiovascular conditions. One of the prime examples that many people have heard of sex and gender differences relates to heart attacks. Many women experience symptoms of heart attacks that differ considerably from those you know still described in many of our textbooks as classic symptoms of a heart attack that are more typically displayed by men. This can lead to, of course, delayed diagnosis, delayed medical intervention and ultimately poorer outcomes for women. And when we have examples like this of conditions that affect people differently based on sex or gender or other characteristics, it's not hard to understand that both the need, but also the opportunity for research that will help us develop more effective approaches to manage and prevent diseases for all people.
So as the Chair of the Research Committee, I've really had the opportunity to see firsthand the very careful work undertaken by both NHMRC and the Department to firstly develop the Statement alongside researchers and members of the community.
And more recently, on its implementation into the NHMR and MRFF grant programs that we're going to hear a lot more about. Research Committee as well as NHMRC Council and the Australian Medical Research Advisory Board have provided advice over the entire course of this project to ensure it reflects better knowledge, better practice and importantly meets the needs of the health and medical research sector. We've carefully considered how the Statement could be best implemented in the grant programs to promote researchers appropriately accounting for the Variables in their proposals and to support the changes that that you'll hear about that will be introduced to the grant programs starting from 2026.
As Steve mentioned, there is guidance available for researchers both as applicants but also as peer reviewers on how to appropriately take into account these Variables for different types of research. I really encourage everyone to familiarise yourself for these really quite remarkable resources, particularly on the website that and to really think about how sex, gender variations of sex characteristics and sexual orientation are relevant to your research. Today's webinar is really just the start of the continuing discussion on how to best incorporate these important Variables into all the types of research that we can we conduct.
So I'm really looking forward to hearing these presentations today and thank you and I'll now hand back over to Prue. Thank you.
Prue Torrance 15:22
Thank you very much Steve, Nicole and Anushka for those introductions and reminding us why it all matters. So now it's up to me to tell you more about the work that NHMRC and the Department have been doing to address sex, gender, variations of sex characteristics and sexual orientation in health and medical research. So what I'm going to do with this presentation is take you on a journey of how we got here to tell you what the problem was we sought out to solve, how we went about developing the Statement and what is in the Statement and then what's going to happen next, which is the real key new information on how the Statement is going to be implemented in NHMRC and MRFF grant programs. So to start with the problem we are looking to solve.
So essentially the problem we're looking to solve is poorer health outcomes. The limited consideration of sex, gender variations of sex characteristics and sexual orientation and health and medical research has been leading to poorer outcomes for particular communities and groups. Some of the issues are that we see generalised findings from one population group to all. So, in other words, what we see is in terms of sex, the majority of studies in preclinical and early clinical studies are done with male subjects and are then extrapolated to the whole population. This means we see women being underrepresented, for example, in health medical research as well as other groups. I'll just use the example of women because one of the things we see in outcomes is a higher rate of adverse reactions to drugs that are out there on the market and used regularly. And some of those adverse reactions are actually that the drugs don't work, so that's some of the indications that there is a problem that we need to solve. In terms of gender, we know that men and women have different experiences of the health system, and we know that those experiences are different again whether you're cisgender or transgender or gender diverse.And yet, these differences aren't always considered when designing health policy and healthcare interventions. And so together these things are causing inappropriate and harmful healthcare practices, and so ultimately the solution that we're looking for is equitable health outcomes.
And so here we come to what are the challenges and barriers to that better practice research. So, when it comes to research design, one of our challenges is actually a good knowledge and understanding of these different Variables and their definitions and what we see in particular is it's very common to conflate the terms sex and gender. This effects, therefore, you know the outcomes that we get, the data that we get and it's reproducibility and applicability across a range of applications. We also see that there is a need for more effective partnerships, engagement with people with lived experience and their involvement in research design. And we also see a reluctance to change existing methods. So these are some of the barriers in research design. In research participation, exclusion criteria leads to discrimination. If you don't have representation in the research, then those outcomes are not going to be relevant to you. We also see barriers to recruitment, which extends from everything to cultural norms to the accessibility, affordability of being involved in research. Importantly, in order to have more inclusive research participation, we need to ensure there is physical, emotional and psychological safeguards for research participants. Unfortunately, there has been a history of harmful and inappropriate research with certain groups, so we need to avoid that into the future and to avoid research into harmful clinical interventions that might target, for example, intersex people or homosexual people. We have seen those examples in the past. Also, we need to ensure we have that effective partnerships, people with lived experience, so we have appropriate research design and then appropriate research participation. When it comes to analysis and outcomes, as well as having the lack of collection of data and the appropriate analysis of data, we then see the lack of expertise and statistical methods to appropriately analyse the data. So, there's some gaps in knowledge and capability that need to be addressed. We also see misconceptions in some of the statistical analysis we can't often hear, but I'd have to double my sample size, might need to have an increase in sample size, but doubling is usually not required. So, that kind of expertise around how to get the perfect sample size and apply the right statistical methods. We also see minority cohorts being excluded because I won't get enough, therefore I won't be able to analyse the data. We would like to see where appropriate to the research design inclusion rather than exclusion wherever possible and data sharing, data integration and meta-analysis. That's how we're going to be able to fill those evidence gaps when you're dealing with smaller cohorts. With all research we see the barriers between knowledge creation and the translation and implementation into practice. That's a very common barrier, of course, but we need to acknowledge that exists in this space as well. And then finally, one of the challenges has been that while we have had some standards and guidance and places, we're not starting from nothing in this area, it hasn't been consistent across all grant programs, for example, and there hasn't been practical guidance provided to really help people with the how, as well as the why and a lack of resources of how to apply things into practice. So, these are the gaps that the two major research funders, NHMRC and MRFF, identified and therefore decided to work together and with other stakeholders and experts to develop a joint statement.
And so now I come to how we developed the Statement. So, it has been a bit of a process. So, for some time, the timeline there shows that we started with a workshop. That workshop was in March 2023, but actually it started earlier than that with engagements with some key stakeholders in the community who said, hey, we think there's a gap here. What do you think we can do about it? And so we decided to embark on this exercise and the workshop in 2023 aimed to bring together diverse perspectives, experiences and knowledge to better understand the issues and the barriers and challenges that we needed to address.
We then developed a draft statement and went out for public consultation in late 2023 and received over 100 submissions. Feedback from diverse stakeholders and we considered all of that in detail. We then did undertake some further targeted consultation to help us address some of the feedback and understand it better and make sure we could incorporate it and sought the advice of our expert advisory committees for NHMRC and MRFF before developing and launching the final Statement that is now available. Importantly, the Statement endorses the definitions of the ABS standard and I'll talk a little bit more about definitions in a moment. The ABS standard itself was subject to extensive community consultation, and we recognise that and endorse those definitions. We do still see that some terminology remains disputed and even divisive in the community, and this will be a challenge. We recognise that, but that will be a challenge for people to go forward and implement. The statement strongly encourages researchers to be cognisant of any community sensitivities and to integrate them into their research as appropriate. So it goes again to those effective research partnerships being really important. So specifically like to call out and acknowledge the contributors to the Statement and our supporters, the George Institute, the Association of Australian Medical Research Institutes, LGBTIQ+ Health Australia and the ABS and others in the development of the Statement and here it is. So the Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research was released in July 2024, and it is actually quite momentous because it was the first joint policy statement between NHMRC and MRFF. It's part of a journey that we're on to better align and coordinate between the research funders. So, you can expect to see many more but it was momentous in being the first.
And essentially the Statement is underpinned by a commitment to health equity - that equity in research participation and equity in health outcomes can be delivered by better integration of sex, gender, variations of sex characteristics and sexual orientation at all stages of every research project.
It also, as I mentioned before, endorses the use of consistent definitions and classifications, which will help us with that data integration and meta-analysis across all research.
We move on a little bit more on the objectives of the Statement, so the Statement really seeks to improve health outcomes by improving knowledge of the research gaps and addressing those historical under-representation in sex, gender, variations to sex characteristics and sexual orientation across various research fields and topics. It also aims to improve the collection and use of data throughout the research life cycle, promote increased inclusion in research that's women, men, cisgender and transgender people, non binary people, people within innate variations of sex characteristics, and people with diverse sexual orientations in research. Broad inclusion and, most importantly, promoting effective, sensitive and safe involvement of people with lived experience in all stages of research and encouraging more effective partnerships across the research life cycle.
These practices aim to ensure that health and medical research produces an evidence base that is relevant to all people in Australia. Importantly, the Statement does not intend simply to increase the pool of researchers who focus only on the Variables, but rather we seek to ensure that all researchers appropriately consider the incorporation of these Variables in the design and conduct of their research, including right through to analysis, reporting and the translation of research into practice.
Now, I've mentioned that we've endorsed the ABS standard, so I'll just take a moment to look at the definitions in the ABS standard. So in brief, sex really is based on biological attributes involving characteristics including chromosomes, hormones and reproductive organs, and it is an important definition in medical research, noting that that we know that there are sex differences across most biological systems. The ABS specifically recommends recording sex as sex recorded at birth, and provides some more information about why to do it that way, but the important definitional aspect is around those biological attributes.
Gender, on the other hand, is distinct from sex, and it's really a social and cultural concept. It's based in identity, expression and experience. Hence gender is not applicable to animals. We don't expect those researchers working with mice to suddenly want to talk about gender, but you should be looking at sex of your animal subjects. Being precise when talking about sex and gender is really important for that rigour and reproducibility of research. Variations of sex characteristics, which is also known colloquially as intersex, refers to people with innate genetic, hormonal or physical sex characteristics that do not conform to the medical norms of female or male bodies. There is a spectrum of variations within the variations of sex characteristics, and that's important to be aware. And then sexual orientation is about sexual identity and attraction, and there's a number of ways on which someone might define their sexual identity and attraction to others. Common examples include heterosexual, gay, lesbian, and bisexual. So these different Variables and their different definitions are really important to be clear and to use them consistently.
We do also acknowledge in the Statement, the importance of intersectionality, so that is, you know, acknowledging that that intersection with indigeneity, cultural and linguistic diversity, age, socioeconomic status, abilities and geography all impact health equity and health outcomes and taking into account intersectionality would also improve the quality and relevance of research.
So in addition to endorsing the ABS definitions and guidance on data collection, the Statement is really about providing the better practice examples and contexts and prompts, the things you need to think about at each stage of the research cycle to support better practice.
And they are in this cycle of design, conduct, analysis, reporting, translation and back to your research question and your research hypothesis. And they are designed to guide you right through the research life cycle and what we'll be asking is for all researchers to look at whether or not they need to incorporate any of these Variables through this life cycle at each stage. Due to the extensive diversity of research projects, this guidance doesn't cover every research scenario and not all prompts will be relevant to all research projects. But we're asking that you look at it and consider it. For research involving animals or cells and tissues derived from humans and animals, we would expect that sex be considered. the collection of sex data and analysis of sex differences should be considered a standard practice in those areas and then in clinical research with human participants consider whether all of the Variables need to be included and incorporated.
So since the Statement was released over a year ago, we have been in a period of promoting and allowing for researchers and the community to familiarise themselves with the Statement and the resources. But now we're looking to move forward and progress forward to a greater implementation in the NHMRC and MRFF grant programs. I’m going to tell you a little bit about what that looks like.
So from 1st of January 2026 there will be a new requirement to account for these Variables in grant application and assessment across NHMRC and MRFF grant programs. There will be a couple of exceptions. For example, NHMRC has a program of equipment grants, so it funds equipment that's used across a whole range of research projects. There isn't a research proposal. We won't be incorporating this in the grant application there. But wherever relevant, it will absolutely be included in NHMRC and MRFF grant opportunities. What we will be asking is for applicants to account for the variables in their proposed research, to answer the question is this Variable being considered, and if so, how am I appropriately integrating it into my research? And if it's not being incorporated, what is the scientifically sound and evidence based justification for not needing to include this Variable and this research proposal?
And then assessors and peer reviewers will be asked to consider when scoring against the assessment criteria whether or not this has been done appropriately, the right variables included, and is there justification for why or why not appropriate.
And I've got a little bit more on that. So this is what it will look like. In general, there'll be a new application form question asking are sex, gender, variations of sex characteristics and sexual orientation integrated in the proposed research. Yes or no for each of the Variables. And when there’s any yes, using the free text box to describe, at least at a high level, how the Variables are integrated, noting that we also expect you to be describing the integration throughout the grant proposal. And if you haven't, you're not really integrating it. So really having it in the full grant proposal, but by capturing it upfront as well, it'll give us a chance to kind of have a look and assess how this is going. And of course, if you pick no to one or more of the Variables, provide a justification for why it's not integrated in the proposed research. We've recognised that it isn't always appropriate to include all of the Variables in your research, but you need to actually tell us the reasoning here in the application form.Some more practical guidance on how to incorporate it into your proposal. So when you're looking at which Variable, you'll also then be looking at which participants or subjects are included. So your inclusion and exclusion criteria, how will you target the distribution of participants and subjects to ensure you get that representation, your planed strategies for meeting that target distribution and engagement in relevant partnerships and your plan for collecting, analysing and presenting the data. That information, as I mentioned earlier, needs to be included both in that application form question where you have a bit of a character limit and in your full grant proposal.
And then for the assessors and the peer reviewers, we will be asking them to look at what's been included. But first I should mention that in the actual research proposal itself and the score descriptors, there'll be specific score descriptors referring to the appropriate integration of sex, gender, variations of sex characteristics, and we'll be looking at whether or not their inclusion or exclusion is extremely appropriate and it has extremely strong justification to get that maximum score of seven. That's what we'll be looking at. Where it's incorporated in the assessment criteria does vary by the various grant opportunities. For the MRFF schemes it will be in the project methodology for the NHMRC schemes we don't have the same headings for assessment criteria across all of our schemes. So we'll vary where it's incorporated, but look out for, for example, in knowledge gain in some of our grant schemes. Equal consideration is given to both approach approaches like inclusion or exclusion of the Variables. The important bit is the strength of the justification and rationale for your approach, and whether you're doing it appropriately and well.
And of course, we are going to provide a range of resources to support you with this implementation, FAQs and how tos. So the statement is already available, FAQs and online resources are being made available now. Once grant opportunities actually come out, you'll be able to see how it's incorporated in grant opportunity guidelines.
And as I said, it will be incorporated for all grant schemes opening from 1st of January 2026.;
So that is the summary of how we got the Statement and how we're progressing forward in implementation. But I'd now like to hand over to some of our expert speakers to tell you more about what better practice looks like in research, in effective partnerships and in how we kind of communicate the outcomes in a publication sense. So first of all, I would like to introduce Professor Bronwyn Graham, who is the Director of the Centre for Sex and Gender Equity in Health and Medicine at the George Institute for Global Health and a Professor in the School of Psychology at UNSW Sydney. Bronwyn is a behavioural neuroscientist, a clinical psychologist and a globally recognised expert in women's health, and she's going to talk to us about how to appropriately incorporate the Variables throughout the life cycle of preclinical and clinical research projects. Over to you, Bronwyn.Bronwyn Graham 36:24
Many thanks, Prue. OK, so kudos to the NHMRC for implementing the Statement further. It's a really exciting time.Just progressing my slides, here we go. I'd like to start by acknowledging the Canadian Institutes of Health Research and Doctor Cara Tannenbaum in particular, who have been leaders in sex and gender integration in science and who were incredibly helpful in compiling this presentation today.
So moving on to a disclaimer and take home message of sorts. Sex and gender are really complex variables, but I like to think that as researchers we are very capable of managing this complexity, and indeed we are often excited by the prospect of managing complexity. And so I urge everyone to take on this challenge of better integration of sex and gender in their work with that sense of excitement, there are many ways of operationalising sex and gender. There's many ways in which sex and gender can be accounted for in your research.
There are lots of robust discussions within the literature on the best approaches, and so there are no one-size-fits-all instruction manuals for this, and this talk is not intended to be that. But what I do want to encourage people to think about is that as researchers, we have the responsibility, but also the freedom to educate ourselves about the relevance of the Variables to our own fields and then to go forth and do our work, justifying our research decisions with that education in mind.
So Prue spoke at length about the definitions of the variables. I'm focusing on sex and gender in this presentation. I just want to emphasise that all of these are umbrella variables constructs that refer to lots of different elements within each variable. The key things to remember are that sex and gender are not interchangeable. They can absolutely interact, but they are distinct constructs and as Prue mentioned, gender is uniquely relevant to humans. So anyone who is doing non-human animal work will just be talking about sex in their proposals.
So that brings me to where in the funding proposal should sex and gender considerations be incorporated? And the short answer is everywhere, and let me take you through some examples of how this can be done. So, thinking about your background and your literature review a helpful question to ask is does the health condition or the phenomenon that you are investigating present differently, or disproportionately, or even exclusively, in individuals as a function of their sex or gender, and further, do we know why? What do we know about the underlying mechanisms?
Now we are quite lucky that this Statement has come at this time because we now have decades of research that has emerged from funding mandates requiring sex and gender to be integrated internationally, and we know that there is pretty much no health condition that is not impacted by sex or gender.
So I encourage those of you who are new to this area after this seminar to do a quick search in your field, sex or gender differences in A, B and C and start to learn about what new research has come up in the past couple of decades.
So is it ever appropriate to design a single sex study? Yes, it is. Certainly when the disease or the phenomenon only occurs in one sex. But it could also be appropriate when you are examining sex specific mechanisms. For instance, you might be looking at the effects of X inactivation and escape on autoimmune conditions. You might be looking at the impacts of exposures to certain drugs like hormonal contraception. However, keep in mind that when you are designing a single sex study in humans that your sample may include diverse genders, and so you need to think about how you can design your research questions to take gender into account and also to be inclusive in the language that you're using when interacting with your study participants.So what are some unacceptable reasons for single sex studies? This notion that all of the past research has been developed in one sex and so future research will be easier to continue on doing it in that sex is not a great reason to exclude a particular sex. If anything, it provides a good rationale for why you might want to include the other sex in research moving forward. Likewise, we will run initial studies in males and then test the effective drugs or interventions in females or vice versa is not great practice.
Because what can happen is that you end up tailoring those interventions to be suitable for one sex, and they may not actually be suitable for the other sex or vice versa. You may miss out on identifying interventions that could work very well in a particular sex, so it is useful to progress the work in parallel. Likewise, no past research suggests the existence of sex differences in this condition. Well, that might be because it hasn't actually looked for sex differences. This is very different to several research studies now showing no sex differences.
And the one that I really want to hone in on because it does come up a lot is only males will be used to avoid variability caused by and then insert whatever female specific variable you choose here, which is often menstrual cycle or estrous cycle. So not only is variability never a great reason to exclude a sex or gender variability tells us that there's something very interesting going on under the surface that is unexplained and actually requires additional focus.
But also this idea that females are more variable than males, that argument has been well and truly debunked. There are now many meta-analyses that have compared data variability between males and females in mice, in rats, in humans looking at behaviour, looking at brain metrics, looking at mRNA. All of these studies have shown that not only is data from females not more variable than data from males, but actually data from males is slightly but significantly more variable than females. And so when you are assessing proposals and indeed writing your own proposals, if you come across the argument that females will be excluded because of their greater variability, I urge you, it is incumbent upon you, to say that that is not an appropriate excuse, and it is indeed scientifically inaccurate.
Which brings me to a question that often pops up, which is when you are looking at females, do you have to test them at every single stage of their menstrual cycle for humans or estrous cycle for animals? I want to emphasise that that variability data that I showed earlier was actually without controlling for hormonal status of females and indeed we've looked at this question for an outcome variable, which is fear and stress, which we know actually changes across the estrous cycle and the menstrual cycle in females. And we found that even for this when you don't control for the cycle, we still find that females are no more variable than males. So, the answer to this question is if you're controlling for hormonal status just to reduce variability in females, no, you don't need to do that.
Having said that, there are many variables that are impacted by hormonal status in females, and so if it's of relevance to the question and if it's impacting the outcome, measure that you're interested in, then yes, you may wish to think about how that could be incorporated in your report.
But the take home message here is think about it and justify. Remember that males are just as variable as females, so don't apply some double standards to what constitutes acceptable variability versus what doesn't. Females aren't the only sex with fluctuating sex hormones. Males have fluctuating hormones too and there is no narrative that says we must test males at every time of the day that their testosterone levels differ and sex hormones aren't the only biological rhythms in our bodies. We also have circadian rhythms, and again, there is no mandate of testing at every point of the circadian rhythm. My message is treat hormonal status in females the same way you would any other variable. Think about it, account for it when it's relevant to the question and leave it alone when it's not.
So in terms of study design and data collection in humans, again Prue referred to the ABS standard, which has all of the questions that are recommended to ask for the four different Variables. And I would emphasise that these are separate questions, not to be mixed together. Now these questions will give you categorical data, so male versus female, different genders, born with variations of sex characteristics versus not. And there is absolutely a place for categorical data in this kind of research, and indeed it's often essential when you're analysing secondary data sets, where you're limited by what data was collected. But I would also encourage people to move towards thinking mechanistically, so sex and gender themselves are not mechanisms. Remember, these are umbrella terms, but the individual elements that make up sex and gender are. Rhere are now really great models that can help us look at the different elements of sex and gender which allow us to get a mechanistic understanding of how they impact different health conditions. So the four core genotype model allows you to separate genes from hormones. And gender itself, we often talk about just gender identity, but that's only one element of gender. There's relations, there's roles, there's institutionalised gender, and so there are some great composite scores of gender that allow you to start to tease that apart.
Your job is to articulate the element of sex or gender that is relevant to your study and how you will operationalise it. And just to flesh this out with an example from asthma, there are sex differences in the prevalence of asthma, where early in life it's more prevalent in males than females, and that's due to sex differences in lung development, but post puberty, the prevalence switches and asthma is more prevalent in females. Now this is in part driven by sex specific factors like the impact of estradiol, which impacts inflammation and immune response. But it also is due to gendered impacts where women are more likely to go into occupations like cleaning and hair salons and nail salons where they are exposed to environmental hazards. So, keep in mind that the different elements of sex and gender can interact to influence outcomes in complex ways.
Sometimes what may appear to be a sex difference is actually a gender difference, and no single study is ever going to capture every relevant element by the variable. Science is incremental. We breakdown complex constructs. We focus on specific elements, and we build a picture. Your job again, just justify your selected focus, recognising that there will always be additional complexity to unpick.
That brings me to analysis and I would like to start with how not to account for sex and gender. So, the keywords that you should be looking out for, controlling for adjusting for, including sex, gender as a covariant, this erases sex and gender. It doesn't account for sex and gender. Pooling data across sex and gender can obscure effects, and the absence of sex difference is that one level of analysis like behaviour doesn't imply that there will also be no sex differences at another level of analysis, like the biological mechanism that underpins that behaviour. So don't pull future data based on the lack of sex differences in past data.
Just to show you how there can be problems with controlling the sex or collapsing data. Stem cell research was producing very unreliable results until it was discovered that the cells from female animals have a greater regenerative potential than the cells from male animals, irrespective of the sex into which they were implanted. So obviously here if you're just collapsing the cells, not taking account for what sex they are that's going to produce unreliable results. Likewise in the area of pain where we see big sex differences in pain sensitivity and analgesic sensitivity, if you look at the preclinical work looking at manipulations to reduce pain, we see that 3/4 of those manipulations work only in males. 1/4 work only in females. So, if you're collapsing those across then you'll find either null results or you will be misled into thinking that a manipulation is effective for everyone when it actually may only be effective for one portion of the population. And then that brings me to the question of sample size and statistical power. So ideally you know, if theoretically justified, then you should be adequately powering the sample size to allow for sex or gender subgroup analysis and build this into your budget requests and scope as you would for any other power justification. Pragmatically, depending on whether the study is meant to be exploratory or confirmatory, you have a few different options. When you have higher statistical power, then you may be able to test for effect modification or interactions by sex. With less statistical power, you may still have the power to detect main effects within the different sex strata, and when you have lower statistical power, you can still disaggregate the data by sex or gender and report it, and then that data can also be used for future confirmatory studies or meta-analyses. But of course, you do need to be cautious about how you're interpreting that data, whether it's significant or not.
And then I want to just mention how to take account of small subgroups. So, this might be for sex skewed conditions like there's a real under representation of males with breast cancer or trans and gender diverse people. This also applies to people born with innate variations of sex characteristics.
If possible, you can oversample the underrepresented subgroup, and particularly when this is relevant to your research question, so that you do actually have that statistical power, but if not, again, the best approach is to always include rather than exclude, to disaggregate the raw data and to present that so that it can be used for future meta-analyses. But here a word of caution, you need to be really careful that that is not going to contravene any privacy standards or accidentally reveal the identity of anybody in those smaller groups.
So finally I would just like to say at the Centre for Sex and Gender Equity in Health and Medicine we have a lot of resources on how to incorporate sex and gender in your work. Please have a look at our website where we have all of those resources. There's also additional resources through Canadian Institutes of Health, Intersex Human Rights Australia, Trans Health Research Australia. Many others as well. And finally, if you are seeking additional inspiration, Nature ran a wonderful special series on this topic and they had an accompanying podcast which is particularly interesting to listen to, so I encourage everyone to go in and check that out.
Thank you very much and I will pass back over.
Prue Torrance 53:22
Thank you very much Bronwyn. And remember if you've got any questions for Bronwyn, you can be adding them to the Q&A now. We do have some more presentations and you might find again those questions answered later. And do remember you can if you see a question already posed by someone else that you'd like the answer to or is what you were going to ask then do up voted.Thank you for joining on Screen, Nicky. It is my pleasure now to introduce our next speaker, Nicky Bath, who is the CEO of LGBTIQ+ Health Australia, which is the national peak body for organisations and individuals that provide health related programs, services and research focused on lesbian, gay, bisexual, trans, transgender, intersex, queer and other sexuality, gender and bodily diverse people. And Nicky is going to talk to us today about better practice in terms of inclusive research that safely and sensitively involves people with lived experience and builds effective partnerships between consumers and researchers. So over to you, Nicky.
You haven't hit the unmute yet.
Nicky Bath 54:34
There has to be one person, and that's me, so that's good. I get this done out of the way and hopefully that's all working now. Right, thank you. So thanks very much for having me here today. Hopefully you are getting on to my second slide. I'd like to acknowledge that I'm joining from the traditional country of the Kaurna people of the Adelaide Plains and pay respect to elders past and present and of course to any Aboriginal and Torres Strait Islander people here today.
The enormity of what we're gathered here today to discuss is, well, just enormous. And I'm so incredibly grateful to everyone that has made this possible at the NHMRC and MRFF. Remember some time back meeting with Prue Torrance and her colleagues with Morgan Carpenter, the CEO of Interaction for Health and Human Rights, who I know is online today, the leading national body by and for people with innate variations of sex characteristics where we broach the subject of research needing to capture the ABS 2020 standard. And then we welcomed with open arms the NHMRC and MRFF Statement in 2024.And to be here now with the announcement yesterday, which was a hair on the arm raising, tears in my eyes moment. Well, it's history in the making and that the NHMRC and MRFF grant opportunities opening from January 2026 will include a new requirement to account for sex, gender, variations of sex characteristics and sexual orientation as part of application and assessment processes will save lives and provide a more equitable playing field. And I'm delighted to be here today and it's an honour and I hope that exploring the aims that I have there on the slide will be helpful.
The enormity and LGBT community communities have historically faced significant health disparities, social stigma and under-representation in research, and these challenges contribute to poorer health outcomes and limited access to services tailored to our needs.
Inclusive research practices then are essential to address these disparities and ensure that the voices and experiences of LGBTIQ+ people are accurately reflected in data and policy by engaging with LGBTIQ+ communities respectfully and ethically. Researchers can improve the quality and relevance of your findings. Moreover, inclusive research supports the development of policies and services that are equitable and responsive to the needs of diverse populations and ethical research practices demand that we do no harm, build trust, and ensure safety for all participants and particularly those from marginalised groups.
So safe and inclusive research with LGBTIQ+ communities is grounded in several key principles. Cultural safety involves recognising and respecting the diversity of LGBTIQ+ people histories and experiences of participants.
Informed consent ensures that individuals understand the purpose, risk and benefits of the research and can make voluntary decisions about participation. Confidentiality is critical, especially in small sample sizes where individuals are more easy to identify and trauma-informed approaches acknowledge the potential for retraumatisation and strive to create environments that are supportive and non-triggering. These principles help build trust and encourage meaningful engagement, leading to richer data and more impactful outcomes.
And we recognise that researchers must be trained in these principles and apply them consistently throughout the research process.
Engaging with LGBTIQ+ people and communities through partnerships with us is a cornerstone of inclusive research. Co-designing studies with community members ensures that research questions, methods and interpretations are relevant and respectful.
Advisory groups and peer researchers bring valuable insights and help bridge gaps between researchers and participants. For example, the private life study successfully incorporated community led design resulted in high quality data and increased trust among participants, noting though for people with innate variations of sex characteristics in those studies, those numbers are still low. These partnerships not only enhance the validity of research but also empower communities by recognising their expertise and contributions, and inclusive research is not just about collecting data, it's about collaboration, respect and shared ownership of the research process. And we want more than to be on advisory committees. We want to work with you on all elements of the research, from initial thinking through to co-authoring papers with you, from the data that we have been involved in analysing.
Effective research practices include the use of inclusive language, the 2020 standard questions that allow for self-selection, and clear explanations of why what is seen today as sensitive questions are asked.
Studies endorsed by LGBTIQ+ organisations often demonstrate high levels of trust and participation. Conversely, poorer practices include tokenistic inclusion, asking sensitive questions without context or support, and using binary-only gender questions that exclude non binary and gender diverse people or that catch-all are you LGBTIQ+, which tells us little to nothing. These steps can lead to mistrust, low response rates and inaccurate data. And while specific studies are not named, it's evidence that inclusive design and respectable engagement are critical to successful research. Researchers must balance the need for data. I'm sorry, I just lost my place there. Give me a moment. Well, all of this then limits the effectiveness of research and policy development, and addressing these challenges require comprehensive training, clear communication with participants and thoughtful survey design. Researchers must balance that need for data with ethical considerations and strive to create safe environments for disclosure.
So in time we will look back and ponder on my questions were ever considered controversial and all of us here, we will be asked on census night in 2026 to tell the government our gender and sexual orientation as well others over the age of 16.
Of course, we know that the question on innate variations of sex characteristics was unsuccessful getting into the 2026 census, we hope very much that that's not the case in 2031 or 2030.The inclusion of the 2020 standard questions in national studies has significantly improved the visibility of LGBTIQ+ populations in data, and these questions enable researchers and policymakers to identify disparities, allocate resources effectively, and design targeted interventions.
For instance, again, studies like private lives and writing themselves in have provided critical insights into the health, housing, and safety needs of LGBTQ+ people. National data collection efforts that incorporate these questions support evidence based policy and contribute to social equity.
The impact of these questions extend beyond data. They can affirm LGBTIQ+ research participants and signal commitment to inclusion and respect. Continued use and refinement of these questions is, of course, essential for advancing our health and well-being, and there's an increasing number of national studies using the 2020 standard. For example, the national study for mental health and well-being through the ABS, which uses all four variables (sex, gender, sexual orientation and variations of sex characteristics) and that study then revealed the two to four times higher rates of mental ill health amongst LGBTQ+ people. There are limitations within that study with small sample sizes for people with innate variations of sex characteristics and gender diverse populations. And rose the National Community Attitudes towards Violence against Women Survey. They included the standard, and this was a great partnership as we were able to work with them on a number of elements, including coding the array of terms used to describe sexual orientation and gender. And these examples show a growing commitment to inclusive data collection and national research and have a flow on effect with the ABS last year releasing a paper on estimates and characteristics of LGBTI+ populations in Australia using four national household surveys. They're currently using the 2020 standard.
To ensure inclusive research practices, several recommendations could be considered. Researchers using those demographic questions and the standard that allow for self-selection and multiple options, training in cultural safety and inclusive practice is essential for all research team members. Partnerships with LGBTQ+ community-controlled organisations initiated from the design phase through to dissemination is essential and they need to be funded to participate. Questions are optional and their purpose clearly explained to participants, and these steps help build trust, improve data quality and ensure that research is respectful and ethical. Inclusive research is not a one-time effort. It requires ongoing commitment, reflection and adaptation to meet the evolving needs of LGBTIQ+ communities. And I'll also just add there how important it is to recognise that as you as researchers are going through a process of change as are LGBTIQ+ people in that sense of being asked questions which many people find particularly older people find quite conflicted by being asked those questions and answering them. And we've got an education piece to do that too.
So in wrapping up, inclusive research is more than methodological choice. It's a moral and ethical imperative, and the phrase nothing about us without us, while very old and in many ways overused, it really does encapsulate the need for meaningful engagement.
With LGBTIQ+ communities in all aspects of research, by prioritising safety, respect and collaboration, researchers can produce data that truly reflects the experiences and needs of diverse populations.
This approach not only enhances the validity of research and contributes to social justice and equity, the policy change represents a pivotal moment. It will improve lives and generate insights we've never had before and set a new standard for progress.We will be able to measure the impact of the 10-year National Action Plan for the Health and Well-being of LGBTIQA+ people with greater rigour, and I'm really looking forward to seeing the data this policy shift will generate and all that we will learn from it. The outcomes from translating this research into practice will be absolutely transformative. And together we really can improve the lives of LGBTIQ+ people. Thank you very much indeed for listening.
Prue Torrance 1:06:42
Fantastic. Thank you so much, Nicky. I won't do the reminder about the Q&A again because I've told you enough, we're going to get straight onto our next speaker and I would like to welcome Professor Ginny Barbour, the editor in Chief of the Medical Journal of Australia and an adjunct professor at Queensland University of Technology.And Ginny is going to talk to us today about the importance of transparently reporting on the Variables in research papers and the guidelines for authors that have been adopted by several academic publishers. And I can see you're ready to go, so over to you Ginny.
Virginia Barbour 1:07:20
Right. There we go. Thank you. Thank you so much, Prue. Thank you for the introduction. It's great to be here. So I'm Ginny Barbour. I'm talking to you today from Meanjin Brisbane on the lands of the Turrbal and the Jagera people. And I, too, would also like to pay my respects to elders, past and present and to any Aboriginal or Torres Strait Islander people here today.I too also want to add my congratulations to the NHMRC and MRFF for these guidelines. I think they are transformative and just hearing the presentations from Bronwyn and Nicky, I think really reinforce that for us. So, I'm going to talk to you from the from the perspective of a journal. I'll just kind of centre where we are. So we're Australia's leading general medical journal, we have a priority of papers in these four areas. But I would say just particularly for the purposes of this talk today, we see very much that we have a priority and we have a responsibility for leadership in publishing nationally.
And I think that these guidelines and their emergence will be an area that we are very keen to show leadership in. So I'm going to talk to you a little bit about what's happening in the past in of medical journals. So this has the topic of sex and gender reporting has been on the on the horizon for journals for quite some time. The SAGER guidelines, which were published in 2016, those are at the top. They're an international set of guidelines to encourage a more systematic approach to the reporting of sex and gender in research across disciplines. As they noted, sex and gender differences often looked overlooked in research design, in study implementation, scientific reporting, as well as in general science communication. As was noted, that oversight limits the general generalisability of research findings and their applicability to clinical practice, in particular for women at that time, but also for men and I think that reinforces what we've heard already.
In the middle, the International Committee for Medical Journal editors. So, this is an international group that many organisations follow the guidelines of updated their guidelines in 2023 and they encouraged authors to refer to the SAGER guidelines.
They gave some specific guidance, including to ensure the correct use of the term, sex and gender. We've heard repeatedly about how that is has a challenge right now and including to justify if studies were done on exclusive populations, why that was done.
They also asked for authors to discuss the influence or the association of variables such as sex and gender, and to include limitations of that data. Before I go to talking about what the MJ does, I will note that these guidelines have indeed been adopted across a number of international journals, and I've just put at the bottom the guidelines from the Lancet journals, which notes, in short, that investigators should integrate sex and gender based analysis into their research design. And I think what you can see in relationship with that is that for quite some time journals have been thinking about not just the reporting of sex and gender and other variables, but also to ensure that it is included in the design of the studies themselves.
So why do we care about this at the MJA, I think that one thing that has this come out is, of course, that sex and gender are important determinants of health, and when they're not appropriately included in design and appropriately reported, that has detrimental effects directly on health outcomes.
And then I'm just, I would say, you know, we absolutely understand that supporting better analysis and reporting are aligned with improving equity in health and medicine. And that is a core priority for us at the journal and that very much aligns with what we've heard already today.
And finally, I'll just note that obviously that we are in agreement with the vision in the NHMRC and MRFF Statement, which says that improved health outcomes for all people in Australia will only be done by ensuring the evidence base that informs our healthcare system considers sex, gender, variations of sex characteristics and sexual orientation. So I think that we are very much aligned with what is happening at the national stage. So how do we practically do this at the MJA? So in 2023, we updated our guidelines for authors. We know that not everybody reads them, but we did update them and we asked authors to specifically consider both the ICMJ recommendations and also reference the SAGER guidelines. So that is in the in our text that's available to all authors when papers go through peer review and we ask authors for revision, we have specific text in our revision e-mail that we send out and we ask authors to respond to that. And those responses are then checked by the editors. So we have built this into our processes at the journal.
There's some specific guidelines and I'll just outline them here. The first one is that we ask authors to explicitly state what definition of sex and gender they're using. And again, as we've heard, that is often a term of confusion.
And secondly, we make it clear that the relevant authors should include a sex and gender perspective into the design, conduct and reporting of their research. And again, we highlight the SAGER checklist. So we are trying to reinforce international standards in this space as much as we can.
So what's been our experience of implementing these guidelines? I would say there are a diversity of approaches from authors and the top there are three that we see very commonly. The first is that authors commonly do not define the sex and gender related terms at submission and they don't explain how sex and gender were measured, or how the data were collected. Many papers absolutely conflate sex and gender elated terms and use them interchangeably. That is an incredibly common issue. And the third one is that often articles assume sex and gender binary.
And they specifically don't discuss how gender information was collected for trans and non-binary participants. And I would say again, this is a particular issue that we see at the Journal. We understand this is a new area for many authors and although we do our best to ask authors to comply with these guidelines, we often find that they don't fully request with changes requests for changes at revision. Just to note that in our processes that currently we don't systematically ask our peer reviewers to assess against these criteria and we don't currently call out guideline adherence to, say, get in the papers themself, unlike in other reporting guidelines for particular study designs. We are considering whether we should also highlight this in in the papers. So I will note that on occasion authors will call them out themselves, but that's relatively rare in my experience.So I just want to spend a few minutes reflecting ways that journal can support the better understanding of these issues, and I'm going to do that by calling out some recent papers that we've published in the MJ. And just to note that I think that we are very interested in papers in this area and we're keen to see more research here.
So the first, the way that we support it is through publishing papers that support better understanding in this area. So, we're acutely aware there's a lack of evidence base and that extends not just to academic papers themselves, but also to clinical guidelines. So, I've highlighted 2 recent papers that looked at this in some detail.
On the left is one looking at sex and gender health and medical research in Australia and what was found was that most health medical research organisations have policies regarding sex and gender. They're often not organisation specific and they may refer simply to overseas policies.
And on the right, we have a paper that looked at consideration of sex and gender in Australian clinical guidelines and what these authors found was quite a substantial difference across the guidelines and, for example, only four out of the 80 actually defined sex and gender.
We also see a role at the Journal for specifically publishing papers that demonstrate sex and clinical and policy implications of analysis by sex and gender. So on the left is a narrative review by Bronwyn, which is on sex and gender responsive management for anxiety disorders. And as she notes, that although anxiety disorders are experienced by people of all sexes and genders, they are not sex and gender-neutral conditions. The 2nd paper on the right looks at sex-based differences in cardiovascular diseases and Anushka alluded to this as a particular issue which has important implications for campaigns to improve outcomes. Finally we can signal our interests is by curating a set of papers in this area. We've heard about some of the international journals who do this. This is from a recent journal issue focused on gender and health and the editors choice, which was written by Elizabeth Sackler who's our senior deputy medical editor, provided that the goal here was to provide a platform for meaningful, equitable research and analysis on what gender means for healthcare in Australia. So, there is global momentum in this area. I mentioned the same lines a few times.This complements very much the work that we've heard about today that's being the continued through something called GENDRO, which is gender advancing sex and gender equity and research is led by Shirin Heidari, who led the SAGER guidelines and it aims to identify and address sex and gender gaps in research and policy at a global level.
So I just want to finish with some final thoughts about what's next. There are some things that I would like us to be considering at the MJ and some of these points have wider relevance. The first one is how to better support intersectional approaches. I think that is an area of relative weakness at this time.
The second one is to move from encouraging research that does more to explain the underlying causes of gender inequalities, rather than just describing them. And third, it's really clear to me that there's a need to increase understanding and recognition of better analysis and reporting in this area and we will be looking to do what we can to expand the knowledge across the groups that we interact with. And then the final thing for us is to is to reflect more for ourselves that we need to a better job of monitoring and reporting about gender balance in our Journal, of our reviewers and authors. Thank you. And I'm very keen to hear further views.
Prue Torrance 1:17:45
Thank you so much, Ginny, and thank you to all the speakers. I do invite all the speakers to now put their cameras back on, ready to take questions. And I remind you again that not only can you put your questions in the Q&A, but you can upvote so that we focus on the questions of most interest to the audience, we are hoping to get through as many as possible. Great. We have everyone back on and I'm actually going to hand over to Nicole to facilitate the Q&A. Thank you, Nicole.Nicole Beard 1:18:15
Thanks Bronwyn. Thanks. Sorry. Thanks, Prue. And thanks to all who are going to be popping in the questions and voting. I will say upfront, I don't think we're going to get to all of the questions to answer all of them today. But what we will do is we will add a selection of answers to some of these questions when we can to our frequently asked questions. So there's a question that I'll hand to you, Bronwyn, and then perhaps Steve might have a comment on it. I'll read it out for you. Those of us who use routinely collected administrative data for research are dependent on the way data on sex and gender are collected and recorded in, say, hospitals as part of routine business. Is there a strategy or a way for improving questioning and data collection in non-research settings from which administrative data are drawn?Bronwyn Graham 1:19:06
Yes. So, you're going to be limited with secondary data analysis by what data is available. And so that's, you know perfectly reasonable explanation to put in your funding proposals as to how you have handled whatever sex and gender data is available. But I think that what that question highlights is that better integration of sex and gender in science, I think it starts here with what we do in our funding proposals, but then it also requires broader engagement across the sector so that the data that we are using starts to improve in terms of how sex and gender are being integrated. So, for those of you who are collaborating within those systems, start to talk to people about what are the questionnaires that are being routinely administered, can we get them in alignment with the expectations for the data collection as indicated by the Statement.Nicole Beard 1:20:10
Thanks Bronwyn. Steve, I'm happy for you to come back to this at a later stage if you like.Steve Wesselingh 1:20:18
Yeah, I guess my only comment would be you know the ABS is a leader in this area and I think they have actually been relatively good in coming along this path. But there is more work to do and you know our discussions with the ABS indicate that that you know they're keen to listen and understand and see what they can do, but obviously. Change is difficult when you're looking at such large population analysis.Nicole Beard 1:20:46
Thanks Steve. Thanks Bronwyn. Just had a question come in on the back of your presentation Ginny, I'm looking for some recommendations and what you would recommend reviewers of manuscripts look for in terms of integration of sex and gender.Virginia Barbour 1:21:03
Yeah. So, I'm a massive fan of checklists, so that's why the why the SAGER guidelines, which have a really good checklist associated with them, ones that we would recommend. We don't routinely do it now we do it for other guidelines. So it's something we'll be looking at doing. We're in the process of revising our guidelines and I think in the same way they're useful for authors, they can be very useful for reviewers as well.Nicole Beard 1:21:28
Thanks so much, Ginny. I'm going to probably ask Nicky. And then perhaps Prue might have some on this next question. It's a long one. So Nicky hope you'll be able to see where I'm looking for some input from you. In our field work qualitative research we need to consider the generational changes for gender and sexually diverse residents of aged care homes, as well as the socio political and cultural challenges for staff regarding coming out, even confidentially. Discrimination and stigmatisation, abuse and neglect, are really real. There are obvious limitations to not asking the questions at all, so any thoughts on how researchers might consider the challenge and yet still ask the question of sex, gender and variations of sex characteristics and sexual orientation. That was a long one, but Nicky maybe start with you.Nicky Bath 1:22:26
Thank you. Look, it's a question that comes up a lot and particularly in regards to aged care actually. And I think as I sort of quickly said in my presentation, where we're sitting at the moment is in at a junction of where we're talking about things in a different way in society. So, whereas before I'd be kind of very, I don't know how I would have felt when I was younger actually being asked if I was a lesbian for example, I probably would have been very grateful actually. And given that I walked around with T-shirts with it on. But I think the issue here is that we're needing to, as I say, sort of educate our communities, particularly older people, as to why asking these questions is so important so that we can do it in a safe way. And it's really important to make sure that prefer not to answer is there because we need to know, we need to know. And in the agend care settings, for example, there's a lot of work that we need to do around making aged care safer and improve the standard of care, and we really need the data. And so I think there's ways that we can use examples too of where questions in the past people thought, oh, this is way too personal.I know that I think one of the questions, particularly when people were starting to be asked around how much they earn, for example, in the census, people were very uncomfortable with that. It'll change over time. And so when we look back in 10 years time, for example, the asking those questions will just be like, you know, asking somebody their name. So, it's a process of change that we're all needing to go through. And I think the more that we can talk about why and why it's important and demonstrate where it has been, those questions have been asked. The information that we have been able to gain from those questions being asked and what has occurred as a result will help people to understand. Generationally it will get easier over time. I hope that answers a little bit of the question.
Nicole Beard 1:24:32
Nicky, thanks so much for that. And I think I'm coming back to sort not a dissimilar point, but something that comes back to one of Prue's comments. And I think perhaps both Prue I'll hand to you for this one.
So I'll read it out. Prue has raised an important point about research, recruitment and respect for research participants. There is a challenge to this in the Statement as there is not recognition that the Variables of gender identity is not relevant to everyone. The ABS standard doesn't include an option for individuals to indicate they do not have a gender identity. This is an issue that research participants are raising with research and ethics committee, any points on how this this could be addressed or things we could think of in this space?Prue Torrance 1:25:20
So I'm happy to start on that one. I did have a look at that question. So, it's important I think that both the options of sex and gender are presented in these sorts of examples of both the questions are presented. It goes back to that issue I raised that there's also still some disagreement and divisiveness around terminology in the community and some people are more willing to identify their sex than they are their gender. So having both is a good idea, and it also allows you to do other analyses. The prefer not to say option in gender is very important again, and I would have expected that would have been where people who didn't want to have a gender identity would use, but I understand this question is also getting to is that respectful enough if you don't have an option to actually say I have no gender identity. We endorse, encourage people to use the ABS standard as it is and as it is presented when you do research involving human participants. I might just take the opportunity to answer another question. I did emphasise in my presentation around biological characteristics and key to the definition of sex. That is also because not all research involves human participants. So, when you've got human participants the ABS standard and that definition of sex recorded at birth is really important, but if you're dealing with human samples, cell lines, et cetera or animal research, you'll be just looking at the biological characteristics to make that distinction. So, I'll just mention that as well. But we're getting back to those human participants and gender identity, I think it is important to have the two questions to give those people who only want to recognise one or the other. Have prefer not to say if the question is mandatory, consider making the question optional for people to skip over it. If you have concerns about your particular cohort that you're going out to having resistance to that terminology, but consider the implications that may have then for your data and the gaps in your data because you'll then have null responses as well to deal with, but that is definitely an option that can be considered.Nicole Beard 1:27:31
Thanks Nicky and anyone else could step in after this because this is going to have to be our last question given the time.Nicky Bath 1:27:37
The only comment I would make here is that I think the issue here is the term identity and I think it's being used in as it's such a weapon these days. At LHA I'm trying to eradicate the term identity in some ways because in fact it's who we are. And so if somebody who's assigned female at birth and their gender aligns with the sex that they were assumed at birth or cisgender person, then that is what it is. And people will be able to answer those questions in that way. The issue here is where we're able to pick up where people's gender is different to sex assumed at birth, and that's the that's the whole point of those of those questions. And so it's that notion though of identity, it's like well, I'm choosing to identify versus this is who I am. And that's what we're capturing here is who people are because that has great implication on people's health and well-being and a whole range of other things.Nicole Beard 1:28:44
Thanks so much and thanks for the really deep and detailed answers and of course for the questions that that came in, Prue I'm handing back to you now.Prue Torrance 1:28:54
Great. Thank you. And as Nicole mentioned, we will try and incorporate answers to these questions in our FAQ because it's good to understand what sort of questions arise in considering these issues.But yes, this does bring us to the end of the webinar today. Thank you for your attendance and thank you to all the speakers for sharing your time and expertise with us today. We really hope you found this session useful and you've taken away something that you consider in your own research practice or community engagement. We feel that we're really at an important moment right now in time for ensuring medical research really benefits everyone in society, but that really relies on your commitment and enthusiasm to spread this message and to apply it through better practice and being exemplars of better practice. The recording of today's webinar will be made available on our website and you can revisit today's presentations. And as I said at the outset please encourage any of your colleagues who couldn't be here today to check it out. Check out the webinar when it's available and to check out our resources. So thank you again everyone. I call the webinar to a close. Thank you.
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