Lived Experience in Research and Evaluation

Thank you everybody for joining us today uh for this presentation uh with our wonderful speakers Tessa and Elsa. Uh before we get to the formalities um I'll just start by acknowledging the traditional owners of country throughout Australia and recognize their continuing connection to land waters and communities. and I pay my respects to Aboriginal and toouristr islander cultures and to elders past and present. Uh a quick reminder or quick sort of plug if you're not already part of the Australian Evaluation Society and you would like to join us um uh details there at the link. Um my name is Stephanie Carter. I'm representing the essay committee of the Australian Evaluation Society today and very shortly I will hand you over to Tessa and Elsa who are going to talk to us about the principles for um working with people with lived experience. So Dr. Tessa Ziz Zinsac, hopefully I've said that right, Tessa is a lived experience mental health researcher at LRO Uni and Elsa is a lived experience researcher, author and peer workforce leader and you can read their little bios there on the screen. But that's enough from me. I will hand it over to um to Tessa and to Elsa to take us through today's session. And if you've got any uh questions, do feel free to pop them in the chat as we go and we'll get to those later on as well. Thank you so much, Stephanie. So, um but yeah, that was a great introduction. Nothing to add. Um so, Elsa's going to start first by kind of talking through um why lived experience involvement in research and evaluation is so important. Um Elsa has 25 years of experience and the last four of those have been working with me because I've only been on the scene for the last four years. Um so she's going to take us through that kind of um I guess the kind of principle or the values um for why we do this practice and then I'm going to take over and talk about uh some of the kind of practical considerations and what good practice looks like. Um and then we should have a a decent amount of time at the end for questions because I know that you know when we talk about this topic people come with all different kinds of um assumptions and expectations and needs and I want to make sure that we you know that we're kind of meeting the um meeting the questions that you've come with today. So Elsa I will hand over to you to kick us off. Thanks Dr. Tessa. Thank you Stephanie. Um, I'm coming to you from Gimmo Walabar Digi Jabagai. Um, uh, land, sorry, Yingi land. Um, that's in far north Queensland um in Canes. Uh I'd also like to um acknowledge people with um lived experience and living experience of uh mental health services and the um ongoing platforming that they've given us to be able to do this sort of research. uh some have been um faced some significant barriers and uh we still do but they're not the same as they were when they were building the foundations. Thank you. Um so I'm going to talk about beyond inclusion which is building genuine partnerships with lived experience in research and evaluation. Um many of us wear multiple um identities uh mental health challenges, disability, trauma and marginalization. And we have other roles including as researchers and evaluators. There is a quiet shift happening across the re research and evaluation landscape. One that's gathering momentum. What once felt like the exception is fast becoming the expectation. Lived experience involvement, whether in health, mental health, disability, or social services, or across our communities and our organizations and society in general is no longer seen as an optional add-on, but as a necessary part of ethical, rigorous research and evaluation. Funding bodies like the National Health and Medical Research Council and the Medical Re Medical Research Future Fund have introduced I only I keep getting them mixed up because we all refer to them as the um uh in the letters um what's it called Tessa? when you talk about the letters rather than the full words acronyms. Um acronyms that's it. Yep. So have introduced streams requiring lived experience involvement in grant applications. Some journals now require authors to justify the exclusion of lived experience expertise in study design. And yet, while these shifts reflect progress, the question remains, how do we move beyond tokenism to true meaningful involvement? How do we ensure that this new norm honors the values that we actually claim to hold? So, why lived experience? I want to pause here and reflect on why lived experience involvement is so important. For too long, research and evaluation has been done to people, not with them. Decisions about what questions to ask, what methods to use, and how to interpret findings have often been made without the input of those most affected. This has led to blind spots, harmful assumptions, overlooked insights, and recommendations that failed to land in the real world. In mental health, for example, we've seen decades of research into treatments and systems that still leave many people feeling unheard, unsupported, or even worse, harmed. Lived experience brings knowledge that's grounded in reality. It offers insight into what works, what doesn't, and why. It challenges dominant narratives and opens space for alternative ways of knowing. In short, it makes research better. But even more than that, it's a matter of justice. People have the right to be involved in decisions about their lives, including research and evaluation that shapes policies, services, and funding priorities. Okay. So we're going to talk about moving from involvement to partnerships. Um values at the core. So what does it mean to make this involvement meaningful? At the heart of it are values. When we talk about involving lived experience, we're not just talking about adding a tick box to a project plan. We're talking about redistributing redistributing power, sharing decision making and valuing different forms of knowledge equally. Here are some of the values I believe need to guide this work. Number one, respect. Valuing lived experience expertise as equal to academic or professional expertise. Some of us have degrees as well. This includes respecting different ways of knowing, including personal, embodied, and cultural knowledge. Two, equity. Ensuring that people with lived experience have the resources, support, and remuneration they need to participate fully. This means not expecting voluntary labor or unpaid contributions in spaces where others are paid. Sometimes people are um on limited incomes and it can be really problematic if they're not paid and it's unfair. What's it? Same work, same pay. Three, transparency. Being clear about roles, decision making processes, and expectations. Too often lived experience partners are invited in without a clear sense of what power they actually hold. Four, flexibility. Recognizing that different people bring different capacities, needs, and ways of working. Capacity is not being the legal term for whether you're um sane or not or able to um be determined sane or not. Capacity as in abilities. This might mean adapting timelines, methods or communication styles to ensure genuine participation. and five, accountability, not just to funders and institutions, but to the communities we work with and serve. So, practically, what does it look like in action? I want to share some of the ways these values are being put into practice in the projects I'm involved in. I work alongside Dr. Tessa Zernzac and Professor Chris Mley collaborating as a lived experience researcher designer and chief investigator across multiple national initiatives. One was the police apprehension project. We were examining the cultural safety and legalities surrounding police responses to mental health crisis, especially the over reliance on police in situations where care, not control, is needed. Lived experience is central here. not only sharing stories but shaping research questions influencing how findings are interpreted, excuse me, and challenging assumptions about safety and risk. I also work with um these brilliant people on the with you training development for legal practitioners. This is a trauma-informed training developed with and for legal practitioners focusing on how to support people with lived experience of mental health challenges and trauma in legal settings. Lift experience isn't just an advisory voice here. It's in the DNA of the training ensuring that justice processes don't retraumatize. Oh, I'm very sorry. But instead create space for healing and fairness. Number three, the Equally Well consumer resource for GPS and consumers. In partnership with Equally Well, we we created a resource co-designed with consumers and GPS to bridge the gaps between physical and mental health care. It's about shared knowledge, making sure GPS hear directly from those of us with lived experience. So, so care is tailored, respectful and holistic and an agreement is formed. Four, designing and proposing research nationally together with university and sector partners. We've been designing and leading research proposals that are being taken up nationally because when lived experiences at the table from the start, projects become not just about people but with people. I've also been a chief investigator just beginning where I'll lead research teams where lived experience expertise is positioned alongside academic and clinical leadership not beneath it. These examples show that lived experience involvement is adaptable. Sometimes it's co-design, sometimes it's leadership, and sometime it's about bridging disciplines. But it always holds to those core values, respect, equity, and transparency. There are some challenges and tensions. So, let's get down to the real talk. Even in these projects, tensions arise. Timelines don't know or soup deep co-design processes. Different knowledge systems, academic, clinical, lived, sometimes clash. In one project, for example, we had to negotiate definitions of evidence. The research team leaned towards statistical models. Lift experience experts lean towards storytelling, nuance, and context. But we held space for these conversations because that's where the real partnership happens. We also face challenges around remuneration models, navigating university systems that aren't built for peer researchers or lived experience consultants. But we kept pushing for fairness. The emerging norm is more than compliance. The NHMRC and MRFF and leading journals aren't just asking for lived experience involvement to tick a box. They're recognizing that research is better when it includes people it impacts. But the risk is that involvement becomes complianced driven rather than values driven. I've seen both, but I've also seen what happens when researchers, evaluators, and lived experience experts come together as equals. It's not always neat or easy, but it's richer, more relevant, and more ethical. Hope for the future, cocreating knowledge. So, what does this emerging norm offer us? For evaluators, the chance to ask different questions, measure what really matters, and create evaluations that actually reflect lived realities. For researchers, there's a much deeper insight, stronger ethics, and better impact for people with lived experience. Not just seat at the table, but real influence shaping research, policy, and practice. The future of research and evaluation isn't about inviting lived experience in as a guest. It's about building the house together. I stand here or well sit actually not just as a researcher but as someone who has lived the consequences of research done to people rather than with them. But I've also experienced the power of being a co-creator of knowledge and I know how transformative that can be. Let's keep moving forward toward a world where lived experience isn't just involved. It's leading, shaping, cocreating, and where research and evaluation becomes tools for justice and collective learning. Thank you. Thank you so much Elsa. Um that was a fantastic kind of yeah overview of the um I guess the some of the principles and and um and values that underpin what I'm going to share which is um in some ways you know touching on many of the themes that has identified but I'm going to kind of come at it from a more of a kind of researcher perspective because I I'm often the person kind of coordinating these groups and working with lived experience experts you know outside of kind of my um my experience or outside of the university to sort of um I guess make sure that they do feel heard and seen in the research. So I'm just I've got some slides so I'm going to share my screen. Um can you see that? Okay, Stephanie. Yeah, thank you very much. Um cool. So um yeah, I guess I'll just jump right in. So I'm on Warry country. Um and all this work was done on Orangey country and I'd like to acknowledge elders past, present and emerging and acknowledge that this land was stolen and never seated. Um so there's been some research into lived experience engagement in mainly in research but also you know in in some evaluation projects as well although the grade literature is a bit more um I guess harder to kind of measure. Um but what we kind of got from looking at the research is the like the main finding is that Australia is actually well behind other countries like um the United States and the UK in terms of engaging lived experience researchers in their work. Um so I led a systematic review. I don't have the citation there but I can definitely provide it if you um if you reach out to me. um it was published last year and we found that there were no studies published in the first half of 2021 in any nursing journal that had lived experience involvement. Um in another systematic review, we found that only 17 studies um published in the first half of 2021, so like of all clinical trials, we found only 17 had evidence of um I've got PPI there. These slides are I sometimes recycle these slides. So that's kind of that's a shorthand for um patient and public involvement. So that's consumer involvement. Um so that was 17 out of 324 in the first half of 2021 that had lived experience involvement which is the equivalent of 1 in 20. But we know that in the British Medical Journal it's slightly more than 1 in 10. So you know we're a little bit behind um in terms of our capacity but you know in terms of our capacity to really kind of do this work. And I think that that's a good opportunity for Australians to really kind of um become leaders I guess in like yeah, become national leaders in this practice. Um so yeah, so that's a little bit of the background. Um but I'm also going to talk a little bit about how how to do it. So um I mean Elsa covered this off really well. Um, I mean, the only thing I'd probably like to add in terms of, you know, what what we're talking about is, um, making sure that, um, I guess that we're recognizing consumers as active stakeholders in the services that they're receiving and stakeholders that have knowledge of that of that service as well. Um and often it can actually really improve research processes and make research processes much more straightforward because you know they'll know how to recruit they'll know what the people in the service do um you know like sorry they'll know what kinds of ways are the best to contact people in that service for example um they you know they might know they might have professional networks that you can rely on um to kind of support in get you know support kind of participant recruitment um they might be able to provide context in in the analysis. Um, so there's a lot of really strong reasons, yeah, I guess to include them. Also has given a really good overview of what it is. If you have any questions about that, you can pop it in the chat because, you know, it's sort of important for the next um the next little bit. So, do let me know if I'm going too fast or anything's not clear, but we will have time for questions shortly. Um but look just in terms of the you know like how how you can engage consumers or lived experience experts. Um there are lots of different ways and what I this slide has a table on it and what I I've done is I've this is a really bastardized version of Indigo day as participation ladder and I've got the reference down there and I can also provide it um as an email um if you my yeah if you contact me um but this is kind of like the main types of lived experience involvement that we see in I don't know I just I know that I mentioned I'm sorry someone has their mind comments Oh, that's be a really good thing to unmuted um for us all to have access to. Sorry. Could everyone just please mute if you're not speaking? [Music] So, sorry. Um, so yeah, so there are all these different kind of levels and indigo um I actually know her quite well, but you know, Indigo Dea who wrote this um there's there's more than this. There's even further up, but the the best that we've kind of seen in research has been co-design at this point. And there's going to be some some reasons for that which I'll go into. Um, but this is just kind of like a really truncated version so that you can kind of see, you know, what's been done and how to do it. So, um, you know, in a very kind of in a very limited way. Um, so, um, yeah, sorry, I was just checking the chat. So when when we're talking about informing people, there's a clear kind of uh difference in how consumers or lived experience experts are seen as compared to the research team and they're quite separate and the research team will make all the decisions about the research and then kind of let consumers know about it and usually that happens right at the end. um consult and and I wouldn't really consider that to be a kind of lived experience involvement but it is you know it is something that you might like consider I mean sometimes member checking can be a bit like this which is when you check with people you know what did you think of these findings from this research that you participated in because you know we think about it that way because that's usually kind of talking to participants not lived experience experts as researchers but um you know I think there is a bit of blurring but what we kind of do see more of is consultation which is when the research team kind of retains power over the research and and decision authority and brings in lift experience people ask their advice. Um it should be done early enough for the influence to be meaningful and really I think that consultation should only be done if there's meaningful scope within the research for that consultation to influence what's happening. So, um I like I don't think it counts as consultation. If you bring people in, they give you advice, and you decide not to take it. I don't think that that's ethical. And it also can be really damaging for um for ongoing relationships with lived experience experts. So, you know, I think um like I've worked with lift experience experts sort of for my whole career, which hasn't been that long yet um because I only just finished my PhD. Um but you know like so I met Elsa through um an EOI that I put out and I didn't know her when she you know I was looking for lift experience experts to work with and I put out an EOI and Elsa responded and I didn't know her at all and that project wrapped up more than a year ago now but we're still working together and I think that part of that is because I've never asked Elsa for advice on something where I can't take her advice or I've never asked her for something and then not listen to what she's had to say. But as a consumer researcher myself, I have been in positions where people have asked me my opinion and then not listen to what I've had to say, which, you know, there can be reasons for that, but it's very damaging to the relationships. And um and then and I think it needs to be kind of worked through if if you can't, you know, like those relationships need to be worked through if you can't take on if you ask someone a lived experience expert for advice and don't take it. I think there needs to be kind of a a justification for why why you've decided not to take that advice. Um and in the past I've been in positions where I have received advice from lived experience experts and I haven't been able to action it. Um for example with the consumer resource um which was something that Elsa and I worked on together. Um it's like a you can Google equally well consumer resource. It's like a a health resource that Elsa talked about for people to take to their doctor. um people, you know, the lift experience or the co-design group said to me, you know, they wanted it translated into other languages and they wanted it to have graphics and videos and we just didn't have the budget. And so I just kind of took that problem back to them and I was like, look, we just don't have the budget. What do you think? Um, and then where we settled was we wrote um we wrote formal recommendations back to the funer that they should expand it um to to include those things which was really good for me as a researcher because it meant that I was able to kind of preserve the relationship with the group and make sure that they were getting their voice heard but also you know I was being clear and direct about my limitations which meant that the group were able to kind of accept my limitations because I was really clear about what they were. Um so I think you know I think that that's um yeah um so um I can see um and readers popped a question in but I might come to that one at the end reader if that's okay. Um so engagement would be you know having having lived experience experts as stakeholders. Um so the traditional research team still have like stakeholders in the project. Sorry. So the traditional research team would still hold the power, but there might be um you know like like there might be an advisory group that have a little bit more power than just kind of consultation. So they might have more scope in terms of what they're able to recommend. Um they there might be a lift experience representative in the research team which is something that I've done in my role in the past. Um and this this is required for a project to have lived experience engagement experts lived experience experts need to be brought in from the beginning. It could be after funding but from the beginning because it's not really engagement if you just bring them in. we don't really consider it to be engagement if they just kind of come in towards the middle or the end because they haven't had that capacity to influence how the stud is conducted because you know most of the time when we're writing grants or um preparing to do an evaluation of a of a service we we do the methodology that's the first thing we do and then it can be quite hard to shift that methodology once you've decided it. So, it's really important to, you know, if it's going to be meaningful engagement, it's important to have people in the room at the start when there's still scope to influence the overall like the big picture of um of what lift experience involvement is. Um, and then the last one that I'm going to talk about is codeesign. um which is I think code design's really tricky in a research and evaluation environment often because um the kinds of the way that the academic norms can be quite inflexible and I think you know research practices can be quite inflexible and um I have done so I on the consumer resource project we did determine that that was co-designed but that was a decision that was made by that co-design group and not by the research team so the power sat with them for them to tell us what level they thought they were engaged at. Um because you know they're considered partners in the research and so we're not kind of telling them oh you know we involved you in code design because if they don't feel that they've had that decision- making then it's not then it's not code design. Um, it's very hard to do code. I'm going to talk about grants a little bit later, but it can be very tricky to do code design because people really need to be involved at the beginning cuz they need to, you know, have kind of 50% of the power in terms of making decisions about what the research is going to look like. But often you design what the research is going to look like before you have any money to pay anyone. which means that either you can't involve lived experience experts in the in the design phase um which is something that um you know that's something I've seen before where we just haven't had the money and so we've just we just haven't been able to do it because we can't ask people to work for free um and then I've had but then you know with the um with the consumer resource we were able to kind of so the consumer resource kind of had that problem where we decided what was you know we'd made some key decisions about what was going to happen before we got the funding and then we got the funding and then we engaged the codeesign group and the codeesign group raised that as a problem at the time. But what we're able to do is really give them pretty much all of the decisions to make um in a very supported way where I was, you know, kind of talking about the pros and cons um throughout the rest of the project and then it kind of worked out like 50/50. So by the end they were like, "All right, yeah, this is kind of fair." But it was really, really challenging and it's not easy. Um, I'm happy to answer questions about that later on, but you know, but some of the constraints around it are really kind of structural. And I think it's important when you're working with lived experience expert to be experts to be really clear about what's going to be a structural barrier for you and um so that so that they're aware of that and then negotiate together how you're going to navigate those barriers to make sure that the people are getting what they need out of the research. Um, Uh, cool. All right, I'm going to go to my I'm just going to check the just going to do a quick time check to make sure I've got enough time for questions. Um, but I'm nearly at the end. So, I mean, I think the only thing with this one with this slide that I wanted to talk about, um, because we did talk about planning in the last slide is around pay. Um now I work for LRO University which is a large institution with very cemented policies around how we pay lived exper how we pay anyone really external um and it can be really challenging. We have very strict policies around so in the sorry in the past what we've done is we've offered to on board people as casual staff members. Um, some people don't like that because it messes with their disability support pensions which can have an ongoing impact beyond my engagement with them like you know it can sometimes make it very difficult to get back. Um, so sometimes people have asked to be paid in in gift cards for you know for those kinds of bureaucratic reasons. Um, but then there are you know really kind of stringent limitations around you know what gift cards can be purchased and how they can be used. And I and I think that that's an area where it's just really important to be clear and upfront about what you can actually do, keeping in mind that people should be paid for their work. And there isn't really a circumstance in which it's acceptable to have lived experience experts come in without being paid. Um, and if you know, I've sometimes found myself in that position where I have lived experience experts who want to contribute and I want them to contribute but I can't pay them. And so, you know, I just have to be really direct about, you know, I can't pay them and I therefore don't think that they should do it because, you know, they should have their own kind of like I'm getting paid so it's not fair and and I don't want to kind of contribute to a culture where we diminish the value of lift experience because an individual who wants to work with me says they'll do it for free. I don't think that that's I mean that's an ethical tension that we're still that I think we all need to work through in the space but that's something that I think is really kind of I don't know that's kind of quite front of mind for me and you know I'm not sure if that's something that other people have encountered. Um yeah and I think you know Elsa said about how it's important to make sure that you know you can extend timelines and you can change things based on the advice that you're given. Um, I think that's, you know, I think that's really about respect and, you know, making sure that when you're when you're involving people in research, you're actually listening to what they have to say and responding to it in a in a meaningful way. Um, yeah. So, look, I mean, I think I think I mean, some of the soft skills that I think are important to kind of make this process successful around sort of being flexible and being trusting and just being really really clear about what you can't do. Um, yeah. So, look, but I think I think this is sort of all that I kind of wanted to like that's the main part of the content that I wanted to go through. I mean, I think the main the main takeaway that I wanted for this presentation is that lived experience involvement is really possible and you can kind of do it at any of those levels really except in form. So um you know when I was talking about my table here you know consultation is a perfectly reasonable methodology that's very um very kind of easy to um to to do because you know the the lived experience experts don't necessarily have the power to kind of um you know extend the timeline too much or or whatever. So if you if you don't have a lot of funding or if you're very new in the space, this can be a great place to start. But we need to be seeing more research that's at this kind of co-design level. Um because you know it's happening, it's happening. It's a part of the movement um in evaluation and research and we're not going to be able to get away without doing it for much longer. Um so that's the end of my formal presentation, but Elsa and I wanted to make sure that we had plenty of time for questions. So I know there are a couple in the chat. Um I will um yeah I'm th th th th th th th th th th th th th th th th th th th th throwing Am Reed's question to you. Okay, good. Um so I think there definitely so there can be overlap between the levels of engagement I think. So sorry um and reader's question is can there be overlap between the levels of engagement or have the levels of engagement oh sorry yeah evolved in the life of the project and what could influence this. So I think with the consumer resource you know there were times that where the group were like this isn't co-design and then by the end they decided it was because we were able to give over a lot more decision-m power when they said that they weren't happy. Um, oh, I mean, they didn't really say they weren't happy. They just said it wasn't code design. Um, so that was fine. We all put our hands up for um, uh, analysis and, um, uh, domain decisions and, um, doing the back stuff, the data um, stuff. It was um, really good. Some some people had never seen that side of research before. So Tessa um gave us the opportunity to do that in a way that we were um increasing our skills and our abilities um and our confidence in doing those sorts of things. And um that uh stopped the re the um project going off on a tangent from what was necessary or important for the end outcome for us. Sorry, Tessa, I interrupted. Yeah. No, look, no, I think that's I think that's a great point. So, I think um sorry, I'm just kind of I'm just collecting my about the the levels of engagement and you were talking about Yeah. But I think what what influenced that in that example was that you know I called my boss and I was like they're saying they're not co-design and he was like okay well every decision from now on they make um and I think that that was what you know I think what so what the influencing factor was was um that we turned over more power. Yeah. Yeah. Yeah. And your your boss um that you're talking about is Chris M. Yes. And he has been just amazing um training us all um and then hands off which is such a beautiful way of learning and um developing and growing. It's just beautiful. Yeah. So, look, there's a question here, Elsa, or or a comment rather that I think is quite related to what you've said, and I'd actually like to hear your perspective on it. So, um, someone's written in the chat, um, don't underestimate that volunteering to do a meaningful piece of research can be beneficial to someone's recovery as well. Um, and you talked about how, I mean, I know you didn't really talk about recovery, but you did talk about how you got to develop some skills. Yeah. When we've been working together, what did you do you have any further thoughts? Um, would you do the work without being paid? You know, I think that's a pro probably, you know, it's very nice to think that we might recover re have recovery from it, but um uh the actual proof in the pudding is respect and value and um uh uh self-worth. And if your selfworth is only that you find some way forward, that's not very much. [Music] I I don't know if that's helpful, but um I feel pretty strongly about it. Yeah, got a hand up. Oh, yeah. Go ahead, Emita. Sorry. I just thought I'd jump in just because I did put a comment um below that and like I have as I've said I've contributed to research as a volunteer. Usually it's for um um been a participant in honor students research or research where it's like maybe you know not going to take me more than an hour to fill out a survey or do an interview. If it's an ongoing thing though where there is a commitment a time commitment and it and this could be up to three years for some people I don't think that anyone should be asked to do that on a voluntary basis and that goes towards a lot of the points that I also made around you know like you know people are giving up their time what is the value how are we valuing people's time and they are also providing their expertise lived experience and expertise so I just intellect intellectual property is um absolutely you know that's an extractive process if you're not giving people something for their time and knowledge and expertise. Yep. And I don't think anybody would accept that themselves. So yeah, um the it's it's quite offensive at times to be sitting at really highlevel tables with people who are all being paid um an absolute squillion and you're getting $30 or um uh be thankful for the biscuits and coffee. You know, it's it's not okay. It really isn't. And we can contribute and save you money and time and effort and um develop relationships and um become essential parts of your lives. Yeah. Yeah. I mean the other thing that I'm kind of thinking about is um is benefit. So, you know, cuz I kind of have my foot in two camps in that I'm a consumer and a lived experience person, but you know, so recently I was doing I was working on a grant application with Elsa for something else and um and we were talking about pay and you know and how I was going to kind of fund their support on the you know because it's I didn't I didn't have funding and so we were trying to work that out and you know Alice has been really nice to and you know kind of um you know and and so was some of the other lived experience people were all being really nice about it and I was kind of like well if we get this grant it'll be because you helped me and that'll be so good for my career and so it doesn't feel fair then that I would get something that's good for my career through lived experience involvement but people but those who would be involved um might walk walk away with just the experience um but I'm not sure anyway sorry um you've got your hand up. Um, yes, good queen. Yeah. Hi. Hi. My name is Reburn. Um, and I was the one that put the comment in there about the um volunteer um um I come from like I have lived experience um as a I was addicted to gambling um and developed lots of mental health issues. I work for the department of health. I got a PhD in relapse prevention. Um but I I know that um in the cycle of people actually wanting to get involved there is a phase and it's very early and I um I agree with I think Stephanie who said that you know it depends a bit on the time frame but there's a phase where people want to give back so they and this is maybe more prominent in addiction lived experience because they they feel like they want to give something and then expect to get paid. And I think if you talk about core design, um core design is the phase where sometimes things are not set in stone where people want to really just get get it right. Um and I I feel that that's valuable contribution. Um and and if you don't have funding at that stage, I think we should still harvest the knowledge. Um for for you. Sorry, I didn't get your name. What What is your name? My name is Gabby. Like Gabrielle B. Hi, Gabby. Yeah. Um, what that would be okay for you to do that, but it's not okay for somebody else and it's not okay for us us to say that somebody else would appreciate just the function of giving back because we all give back. um through using personal stories and harm and um experiences that are um associated with a lack of power and that's a very extractive process. Yeah. So I I I hear what you're saying and I'm I'm not trying to correct you, but I am trying to say that it's not up to me to say that somebody else should um not receive because they get a benefit and that benefit is to give back because we give back at all stages. Well, I I agree and and and I I'm not saying that you're wrong and I'm right. All I'm saying is I observed in 20 years of working in recovery with people that um they want to connect with others if you provide them with an opportunity to do that and yes at that particular time you don't have the money I think it shouldn't be you know some of your research wouldn't have gone ahead if if you would have you didn't have the funding at the time so I think sometimes you No, but I think nowadays it's an expectation. I could just jump in. Um Gabby, I think, you know, I think what you've said is really thoughtful and and maybe I should have been more thoughtful in um in what I said in my presentation. So, you know, thank you so much for for raising this. Um, I mean, the only the thing that I think is playing out here is that we're trying to identify as consumers what the right thing for us to do is in this kind of difficult situation where there isn't funding for things that there really should be funding for. And I think that that's where, you know, it's so difficult because I don't have any solutions to that. But I think that what we're talking about is a structural problem where there's still this kind of undervaluing and this reliance on researchers to advocate for the people that they want to engage. Um and and so you know I don't really think that there is I don't you know I don't think there's a right or a wrong but I I I just think that we need to think about you know why is this problem happening and it's happening because there's not sufficient funding and I can't fix that and I don't have any advice on that but it's you know it's something that I think is coming up. Um, so look, if it's okay, we've got a couple more questions in the chat and I noticed that Megan's just popped her hand up. Um, can I just say something, Tess, just quick? Yeah, go ahead. Yeah. Um, we talk about um, Aboriginal people saying that they are the most researched people in the world and the parts of them were taken overseas and they're only just now being brought up back. We haven't done that with people with mental health diagnosis, lived experience people. So, well, there's certainly been researched over and over. So, um yeah, I I think if we keep it in mind that um it would be insulting to um Aboriginal and um First Nations people. So yeah, let's let's try and do what is best practice. Yeah. Um so I might go um sorry um I might answer this question from Morgan that's been in the chat and then um Megan will go to you next. So the question from Morgan is um I know you've said that codeesign means 50/50 shared decision-m but in my engagement table I said that codeesign so me um that is at the beginning of the project um and Morgan's just trying to clarify um that I think I think what Morgan's saying is that they want to clarify that tension where I was like code design should be from the start but here's this example where we didn't do it from the start um and so I think that's an excellent question um and so I think I want to have a go at that one first and then ask her if you have anything to add. Um, but I think so I don't think that what we did was best practice. I think we were really lucky that the group decided it was co-design at the end and we had to make a lot of concessions for that. But I think what is best practice is engaging people from the very beginning. And what I think I was trying to do was offer this, you know, example of like here's a solution for if that's not possible for you or you know here's a way you can kind of turn it around. Um, is that I can see you nodding Morgan. Is that what you were getting at? Yeah. No, I was also just asking um in terms of so co-design from the beginning but not just at the beginning. So I guess my question was more around the level of engagement throughout the life of the project as well in order for it to be meaningful. So not just involving at the beginning but does that mean ongoing involvement throughout the duration of the project or is it sort of sufficient to have you know that engagement at the beginning and then like multiple contact points say to you know valid validate or talk through findings and and see how that kind of um resonates with the lived experience um experts. Yeah. Uh so I mean with the consumer resource project we met monthly and we had people doing work the whole way through like like Elsa said you know they were doing analysis they were doing in the literature review they did screening um but all of that stuff was kind of optional. I think that that really helped people to feel involved but I also think that what we're really kind of talking about is having people at that at those decision making levels. Um, and I think that, you know, there are more decisions at the start, but you need to keep people engaged in all the decisions the whole way through because, you know, like the, you know, I remember we were doing the analysis and um, and I was talking about side effects coming up and um, I hope it's okay to share this, but Assa pulled me up and was like, "People aren't talking about side effects. This is what the medication is supposed to be doing." Um and so because she was there at that point which was quite you know right in the the end of the analysis because she was there I was like oh this is actually like I have misunderstood what is happening here. Um yeah did you want to add anything to that Elsa? just just the the feedback loops are the the best thing to um to actually have things rounded off and understand what differences have happened as a result of you being involved as a lived experience person. Um it just um means that you feel like you've done something worthwhile and the relationship is um rounded off too. Yeah, I think that was a big part that I was able to come back to you guys and be like this is what I did that was based on your advice and then and then I promoted it everywhere. Yeah. Um Megan, did you want to answer? Sorry, did you want to ask your question? Thanks for your patience. Uh yes, thank you. Firstly, I just wanted to say that there's no shame if it's not code design community involvement. you know, it's never too late and I think researchers get a bit tied up in the word co-design. Um, but better to involve community at some point than no point. But, but my big bug bear at the minute is don't call it co-design if it's not co-design. Um, but I was just going to say based on something you on the funding discussion that you were talking about is that um, I think there's a big and I've written it in the thing, but I think there's a big lobbying piece to be done. The NHMRC and the MRFF are expecting community and consumer engagement now, but they're not allowing suitable time, suitable funds. Um, and there's no pre there's no prefunding to allow you to have community and consumer involvement. And I think we need all of us who believe in this space to be advocating to the funding bodies um that if they expect this then they need to make it possible doable. Yeah. No, I think you're absolutely right. Points Megan. Yeah. Um Felicity, did you have a question? Yeah. Hi. Um, so I was just thinking about um, I guess work that I've done previously that's involved community or code design. Um, and I was wondering if anyone has any handy kind of guides or resources for doing it. Um, making sure that everything's like appropriately traumainformed. Um, I was lucky enough to have a social worker and a counselor present in that work. But I think that um you know doing it on my own despite what you put in your ethics applications can sometimes seem a little bit daunting just because um you know people's experiences obviously come up um when you're interacting with them and sometimes um that can obviously trigger trigger things and so yeah any if anyone's got any guidance or or if you could even talk through to that. Do you want to start off? No no you go ahead. Um so the trauma informed um uh uh training package for the um uh with you project for the legal people has some tips in there. Um also if you look online there is um ways to support people, grounding techniques etc. Um uh when you do a safety um uh sheet which lists organizations and counseling services to send people to. Please don't forget that people have family and friends and supports. Put that first before you put lifeline or whatever. um because that's that's where most people get their um supports. And we're often not more fragile. We're actually stronger than most um because the sorts of harms we've experienced in um sometimes treatment itself um means that uh we uh have strategies and ways around um becoming wobbly as a result and um I guess uh the responsibility for our well-being can be solely ours. As a researcher, you can write that into your um consent forms. You you don't actually um obviously your ethics is not going to let you get through with um something deliberately harming somebody like deacons torture experiments that they did years ago. But um yeah uh I think um keeping in mind that there's a way to go about it that it it becomes a shared responsibility and a shared knowledge and a shared humanity rather than us and them and they're the ones that are more likely to go off. you know, we're we're actually one in um two of us is going to have a mental health condition in their lifetime. So, if it's not you, it's the person sitting next to you. night. Sorry. I guess yeah, I guess it's just um around I guess because obviously when um you know you're doing well strictly data collection, you'll have your distress pro protocol and everything like that. But um yeah, making sure that all the way throughout the process you're sort of adhering to that as well is kind of where where I was. But yeah, that's that's really helpful. Thank you. Um, and I see some great people have put some things in the chat as well. So, thank you so much for that everyone. Yeah, I I was going to say as well, um, France Brightite has put in some excellent resources from Joe Farmer who was here earlier. Um, so I would really recommend I mean, yeah, this problem, it's something I've thought about. Um, it's it's also something I've been working through at the moment. um we're I'm running a mentoring program to increase people's lived experience um capacity for working with lived experience experts and um you know everything kind of was fine and then we had someone um who works with domestic violence survivors say that you know they had real concerns because because of some of the specific challenges that that group have that other groups might not have and you know I mean it was in that instance I met with the person and we amended the program but um yeah I mean I think I'm not an expert on that I'm still learning myself. Um but Elsa, yeah, Elsa, I think what you said about in the mental health context was really appropriate. Yeah, I'm I'm I'm reading the um um chat and is that Tanya Park that commented there? If it is, I'm um have associated with you a few times. Um but uh yeah the um I think the idea of the difference between AODD and mental health is is kind of interesting too. Um uh I would like to think that um the idea of abstinence or harm minimization is transferable. harm minimization doesn't necessarily um apply to mental health. Um we actually talk abolition and um uh adherence I think. Yeah. Also I think do we want to finish there because I'm just conscious that it's just gone time. I think we've answered everyone's questions but if we haven't I'll pop my email in the chat again. You can reach out to me. Is that okay, Steph? Sorry. Yeah. Yeah, I was just about Yeah, it's 5 o'clock. No, it's 5:00 essay time anyway. Yeah. No, thank you um Elsa and Tessa, both of you for your presentation today and um answering everybody's questions greatly um appreciated. And yes, if um Tessa has put her contact details in the chat, so she's happy to answer any questions. In that case, I'll leave it there. [Music]