Kate Steinbeck [00:00:06] Good afternoon, everyone! Welcome to the Wellbeing Health and Youth Webinar for the month of March. I'm Kate Steinbeck and I'd like to introduce our series with a few of our regular slides, which is where we acknowledge that we are still funded by the NHMRC and to acknowledge all our university partners.  Same need to acknowledge the traditional owners of countries throughout Australia and recognise their continuing connection to land, waters and culture, and pay our respects to elders, past, present and emerging. And I know that our speakers are coming to us from a number of parts of Australia and we even have somebody from the UK to today. Just remind you, for those who perhaps not been on the webinar before, that your webinar...during the webinar, a microphone is muted and video switched off for all our attendees and you will have an opportunity to ask questions at the end. So if you have a question, we need you to put that in the chat, and we will actually answer those at a later date and you can type your message down at the bottom for the panel is where that question goes. So we look forward to having some excellent discussion at the end. But now it's my pleasure to introduce our first two speakers, because today we are launching a guidebook which will be on our website, the WH&Y website. And this is looking at a very important topic Youth Engagement in Health Research. We know that young people are under-researched, and often researchers tell us it's all too hard, don't  know how to start. Well, this is our solution to it, and we hope that once you've watched it today, you'll understand what a fabulous resource it is. So I'm going to introduce our two speakers, and I need to warn you that our first speaker is Pip Collin, who has led this work from Western Sydney University. She's currently in Durham in the United Kingdom and is having some problems with connections. So we hope that she will come in as soon as she can. Um... and it looks like I might be doing the introduction if Pip can't join us. So Pip and I will... and Pip is, is a professor of social research at the Institute of Culture and Society at Western Sydney. She's led the youth engagement stream now for six years for us, and she has had the privilege of working with young people and researchers to create our WH&Y Commission, and which is and a platform for participation of young people in research. And we've learned a great deal from them. And you will hear from two of our members later on. Pip has 20 years experience in digital, participatory and health and, and design based research with young people. And I'm just slightly distracted because it looks as though she's trying to connect. Our second speaker is Mia Cox, who has been instrumental in bringing this to its current format. She's a community development practitioner and casual research officer of the Young and Resilient Research Centre at Western Sydney University. And Mia has really worked tirelessly behind the scenes to bring this to, to... so we're just getting distracted by other things work to get this to get these resources up to a world class level. She has ten years experience, over ten years in community development and engagement, and she has really specialist skills in youth participation and inclusive community engagement for strategic and social planning. So we are so pleased that we found Mia. It looks to me that we're going to have to change the order of the presentation, and I'm just checking that Pip doesn't seem to be anywhere. So I'm going to ask Mia, first of all, to provide an introduction, a practical introduction to the resources, and if we can't find Pip in Durham, I will just give a little bit of background to how it all happened. 

Mia Cox [00:05:20] Thank you so much, Kate! And yeah, wonderful to be here with you all today to launch these resources. For myself, I would just like to acknowledge the traditional custodians of the lands that I'm calling in from down here in [00:05:34]Bunurong [0.0s] country, now known as South Melbourne. So and again, Pip will hopefully frame up a little bit more about why engaging young people in research matters so much. But what I'm going to do now is actually take a moment to do a little bit of a preview and a run through of the resources which have been developed. And I guess as a starting point as well, the resources which will be previewing for you all today, which are hopefully you can pick up and use. These have been developed in a really collaborative way, there's been so many different people, researchers, young people, people who are youth engagement practitioners, all working together to develop these resources. And these have kind of grown from the experience of the wellbeing, health and youth, uhm, wellbeing, health and youth. And also they work with young people doing that research process collaboratively. So yeah, I think just a huge thanks and acknowledgement to everyone who has been part of this process so far. I guess the starting point, before I dive into the resources, is to really highlight that these resources aim at assisting health researchers to go on that process of moving beyond young people being the subjects of research, to really highlight practical ways where all different stakeholders can bring their unique knowledge to strengthen the research process and outcomes. And I guess we look at this, this little graphic here, which shows the different value, the different knowledge, skills and expertise that different stakeholders can bring to really strengthen and enhance the research process. And for all of us, regardless whether you're like me, an engagement practitioner, you might be a health researcher, maybe you're a young person. It's really important to ask that question who is at the table when it comes to, to this process, when it comes to designing, producing and translating your research. Who is missing? Who is hard to reach? Whose knowledge and experience is overlooked or underestimated, and who has the balance of power in this process. And really importantly, and this is kind of where this guidebook comes in, is that's the guidebook and resources we have developed really aim to cultivate an enabling environment to support all these different stakeholders to bring their best knowledge, skills, network and expertise in a way that really enriches the research process and outcomes. And within the resources that we've developed, which we'll be taking you through today, we have really focussed on what enablers need to be in place, particularly to support young people, to participate in the field of health research. And what are some of those things that perhaps if you're a researcher yourself, what can you think about, what are some of those practical steps you can take to help create that enabling environment where, again, everyone can come together to collaborate, to deliver the best outcomes possible. I'll just jump to the next slide here. So again, across the resources, which we'll take you through in a moment, we have what we're calling an implementation model for engaging young people. So this is a three step implementation model which looks at these three different phases which apply, I guess, across whatever stage you're in in the research process. So it could be maybe you're thinking about your whole research project. Maybe you're just thinking about a particular phase of your research, or maybe it's even distant activity within a bigger research project. But whatever level you're looking at, there's three steps to consider which are prepare, connect and reflect. And across the resources, this sort of three step implementation model helps to guide and frame different considerations you need to take along the way. So in terms of preparing, we sort of look at what do you need to consider before you interact with young people to ensure that meaningful and fit for purpose engagements. Connecting, what do you need to consider when you're engaging with young people to make sure that you're engaging in a way which is accessible and safe for all people, including particularly young people, and delivering positive outcomes to both the health research process projects and to young people themselves. And then finally, in terms of reflection, considering, what do you, what do you need to consider and reflect on in the engagement process. And I guess our recommendation is that these three steps are really important, regardless of where you're starting on your engagement journey. You know, sometimes in an ideal world, it would be great if you could implement this right from the start, from the inception of your research project. But maybe that's not possible, maybe you're already on the path, already on the journey, but you're trying to think about how can we meaningfully engage young people where we're at currently. And so the way that we've designed this guidebook means that whatever phase of the research cycle you're starting at in terms of that process of engaging with young people, you can use this model to navigate through implementing your own unique engagement process. So what I'm going to do now is just to give you a very quick preview of what is in the resource kits. And we have a whole range of things that are included for you to pick up and look at, adapt, run with whatever is going to work for you. This is a bit of a summary at a high level, but I'll take us through each section. So we've got, I guess, this overall guide book which looks at 10...10 important things to think about in that engagement process, and then that's accompanied by some respectful practice cards, which I'll explain later, at the cards case studies, and then a whole suite of checklists, tools, tips, templates and mini guides. So these resources really cascade in and out, and you can pick up and use whatever you feel is going to be most relevant to the particular phase and, and, yep, part of your research that you're working on. In terms of the guide book, I guess this is kind of like the master document and ...and everything else cascades out of here. We have an introduction to Youth Engagement in Health Research, which we really recommend you take a look at before you go on to explore all the other resources. We have look at getting the right team, unpacking some of those mechanisms for Youth Engagement in Health Research, considering things like safeguarding and Duty of Care. Looking at how do you recruit young people to partner in that research process. We look at capacity building, what are some of those skills that the research team or the team working with young people might need, what are some of those skills and knowledge that young people might need to fully participate. We look at implementing and sustaining youth engagement, so if you're doing it over a longer period of time, what are some of those regular things that you need to do to maintain that engagement with young people. We also look at reporting back and reporting on so that,  you know, after you've involved young people, how do you feedback to them the outcomes of their participation and their engagement, and that they know that what they've contributed hasn't just gone into a black hole. We also look at a package of thanks value and remuneration, which is about how do you recognise the contributions of young people in a really holistic way that values again what they've contributed to that process. And then finally, we look at monitoring and evaluating engagement. And so that question about, what does success look like and how do you know what those outcomes around engagement have been along the way. So these ten sections of the guidebook are ones that you can have a look at, and then when you have a look at these, actually you'll find, oh, sorry, this is a quick preview of what that looks like. You can see in the guidebook again, we've got that's a bit of an overview in each section and then we look at that prepare, connect, reflect - a three step implementation model. And at the end there's a whole series of questions which you might want to ask yourself. Also in each section of the guidebook, they cascade out to link to different accompanying resources. So if you're looking, for example, at that section around capacity building, within that section, you can click through to a whole range of different tools, templates and further guides to help you with that particular aspect of the engagement process. We also have three fantastic respectful practice and care resources, which really look at what are some of those important considerations when working with... you need to keep in mind when working with particular cohorts of young people. And really excitingly, actually these have really, these have been developed and led by young people who've been involved with the WH&Y Commission. And so a lot of this is based on their lived experience, and as well as their experience of participating in that research process. So these are really helpful tools to help you, yeah, think about how, what, what key reflections you need to consider as a researcher as you go through this process. We've also got some method cards, future scenarios and a research carousel which unpack different research methods, which really help to facilitate that collaboration between young people and researchers along the journey. We have also some case studies and I guess, you know, perhaps you take the time to have a look through the guidebook and the different resources. But then you may wonder, what does that actually look like in practice, and we have three great case studies which look at different types of research projects, and where there's been different levels of involvement between young people and also researchers, and that's... that collaboration. And these case studies just unpack those different steps in the research process, and can help to sort of bring that engagement process alive a little more for you if you're trying to understand how that...how that works in practice. We've also got a whole suite of different checklists, which once we do some of those really practical things, when you're getting down to the nitty gritty, like, okay, what's it, you know, how to develop a recruitment strategy to involve young people in your research or how to run a project meeting with young people, how to do an induction for young people with when they're starting that process of being involved in the research journey. So we've got these really practical checklists to help you run through, yeah, those different aspects. And we also have some mini guides. We have one which looks at youth advisory groups, and that's, if that's a method that you...sorry, that's a model that you choose to go down the path of involving young people. And we also have two guides which are actually still in development, which we will upload onto the website once they are ready, which looks at research, practice partnerships and also more detailed picture scenarios method guide, if you actually want to use that methods as you collaborate with young people in research. We've got a whole range of different templates and again, these are things which you can pick up and use or adapt for your particular setting, looking at things like role descriptions for young people or an induction presentation, maybe a feedback form or letter of thanks and impacts for young people after they've been involved. And we also have some tips which come again from that experience at the WH&Y Commission of  working with young people, what things are really important to do...to make sure that involvement of young people is meaningful and safe. Oh, sorry. There's a lot of... there's a lot of resources here. So we also have, again, some tools which you can use and adapt to your particular situation, for example, applying duty of care to key research activitie,  and what are some of those things that you need to consider depending on the type of activity that you're doing that ensure the safety and wellbeing of young people. So...sorry, that's been like a really quick run through. All of these resources and they're live on our websites, and, yeah, I'll put the link to this in the chat in a moment and you can jump on and explore yourself. Yeah, these, these resources I guess, are a snapshot in time as well, and we certainly encourage you to consider how you may want to adopt these or, you know, make them relevant to your particular context. I might just hand back to Kate, for a moment. How are we going? 

Kate Steinbeck [00:18:53] Thank you. Thank you, Mia, for, for that fantastic overview. And I'm sure you'll agree with me, and we've got nearly 100 people online at the moment, so encourage your friends to come so we can hit the 100 mark. It's, uhm, I think they're just wonderful, I've really been involved in it over most of the development, but I think the product is more amazing than even, you know, I thought it would be. I have bad news in that we have not been able to get in...get Pip online. It is the tyranny of distance, sometimes the Internet just doesn't do it. And I think and Pip's asked me to just go through some of the background because this look, this represents years of work, so much time and consultation, and I think it's gold in terms of researchers, because I find that so often... I often get asked to review grants and grants that involve young people, and it is amazing how nothing has been thought through, and it's just ...just so one size fits all. This is how you recruit parents for your child research. This is how you recruit adults for their own participation. And there's just so much to learn about researching with young people, but the value is enormous. And I guess I've just looking at these notes now, so it will be a bit off the cuff. But I think Pip has some really tremendous points to make. And first of all, there's a lot of rhetoric about youth participation, we hear it all the time. So it's something that, that lead research leaders or health leaders know they should be doing, but and we know that young people should be involved in so much the part of research, the framing, that is what question we're going to ask, how we deliver the research and most importantly, how we translate it. Because I think until we have young people taking part as translation ...translators of research and research findings, we really can't say that we have full youth participation. And the awful outcome of not having enough research into young people is that the health service cannot go forward with good evidence base for the change that is needed. And so many young people feel that the health system in many ways fails them, doesn't listen to them, it doesn't think their ideas are valuable. And we hear this time and time again, particularly when young people interact with the health system, and particularly as they're wanting to interact with autonomy...with autonomy, and not just being part sitting there with a parent or guardian with them. And only 2%, and these are Pip's numbers, of adolescent health research at this stage is participatory. In other words, the researchers have actually said they involved young people, which are pretty astounding statistics. And when I give you my statistic that I like quoting, that only 4% of National Health and Medical Research Council funding has anything to do with young people. You will see that there's a lot of this, the research we have on young people is really minimum and we have failed them because we need evidence is important in modern day health delivery, what do we choose to do the right thing. And I think our big challenge in health research, in we... in academia, universities like where I work, in health services, clinician researchers, where I also work,  and in any government, governments are often asking for evidence checks as to help them to make decisions. And the challenge is to help people to work with young people so that they are not just token young people, that they have a chance to look at what agendas should be said. There are plenty of young people out there who can contribute to research questions, methodology, collecting data, recording data, even analysing data, and then advising on how these can be used in policy and practice, which is what makes the change to health systems. And we think a lot of research is sort of [inaudible] at the idea of researching with young people, because once they start thinking about it, it starts to fall in the too hard basket. And I guess this is what the whole reason for bringing these, these research tools to you and to everyone around the world who wants to work with young people, because we believe this is not just for Australia, it's for just about anyone who is researching with young people with in a high middle or low income country. And it all starts to become too hard. And so that we there's, there's a barrier before we even start thinking about how we might engage with young people. And I guess many of you will have stories to tell about difficulties getting through human research ethics committees, struggling with the idea of consent and confidentiality. Looking at if you get through and you've found a grant, and you've done the ethics, you're suddenly faced with the enormous dilemma of how you recruit young people and that in itself is a challenge. And often young people are recruited in schools and other educational institutions but we also think that so many young people miss out on being part of research because in some way they are marginalised or it's not easy for them to access the research. And when you think about it, that 80% of our health costs, and it's often called a burden I don't like the word burden, but the, the resources that go into providing health care for young people, 80% of those are directed towards 20% of young people who have either marginalisation or intersectionality, other things that may make it very difficult for them to be research participants. And so we as researchers, have to do our best to overcome all these challenges. And I think having this to fall back on, to be able to say, look, this is something that has been developed with young people, by young people, for young people. And these are ways that we know are likely to work. And so I think without any further ado, ado, I'm not sure that I can say anything more than to thank people who unfortunately is not with us. And to say that we've work to remind you that we've worked with about 50 young people on this resource and at least 30 workshops have been held, so we do know what we're talking about. And to prove we know what we're talking about, I'd like to now invite you to get your questions going into the chat. I can't see anything just yet, and I'm going to introduce our panellists who I'm going to ask to come on board. And so, Pip, we've say a big thank you to. I'm going to introduce the four panellists and I'm hoping that they'll now come on board, and get the...get themselves back on stage, while they are doing that, I'm going to introduce them. So I'm thinking that Kristen is coming first. So in no particular order, just to say up here, I would like to introduce Cristyn Davies first, who is a research fellow in the Speciality of Child and Adolescent Health in the University of Sydney. Many of you may have come across Cristyn, she chairs many organisations, including the Human Rights Council of Australia, the Child and Youth Special Research Interest Group of the Public Health Association of Australia and the Research Committee of the Australian Professional Association for Trans Health. And Cristyn has expertise in vaccination for young people, gender sexuality, sexual and reproductive health, knowledge translation and implementation science. And I whenever I read Christyn's short bio, I feel as though I haven't quite accomplished enough in life. Next person online is Maia. And Maia all now works as the executive officer for the Australasian Association for Adolescent Health our AAAH. And Mia's work focuses on effective engagement and building connection and capacity in cross-sectoral collaborations. And in fact, Maia led the, the  our Wellbeing, Health and Youth the WH&Y Commission led them into creat...into creating all, all these resources. And so although she's moved on, we now expect her to, to really advertise these to every member of AAAH. So that's your job for today, Maia,  as well as answering a question. I'd now love to introduce our two last panellists, but they really ought to be at the top because they're our...two of our WH&Y commissioners, and it's my pleasure first to introduce Peter Lin who's next on screen or at least next on my screen, who's a WH&Y commissioner and he also manages to be a junior doctor at Orange Base Hospital, you can probably tell that because he's in scrubs and has a stethoscope around his neck. And as a young person and early career health professional, Peter, I think provided a really unique lens on having been both a consumer and a provider of care to young people and acquired firsthand and how to, I guess, design, welcoming and affirming health care systems, and of course, health care systems start actually with health care research. So welcome, Peter. And I the last [inaudible] Grace lovely to see you as well. Grace McGowan is a WH&Y Commissioner and she's a second year occupational therapy student at the Australian Catholic University, and she hopes to become a paediatric occupational therapist in her postgrad training, which is just wonderful and I hope that involves lots of adolescent work, as well Grace is a strong advocate for listening to young people's experience in the health system... care system and importantly brings lived experience in chronic illness and disability. So welcome everyone to the panel. I've got a question for each of you, and we've been very kind and we've actually given you some time to prepare, which I think is... So the first question, Grace, is you've got a lot of experience in the health care system. Can you tell us about what your experience with, with research has been and what you hope this guide book will achieve? 

Grace McGowan [00:32:06] Yeah, of course, so with over ten years plus experience of being a regular consumer across multiple health care networks, being an OT student and working within the advocacy space, research is one of the most valuable things that can be brought to the table. I've seen firsthand that when working with young people living with a chronic illness or disability, young people themselves in their personal autonomy, social environment and environmental factors are often overlooked. And we aren't seeing beyond our diagnosis, this particularly comes into play, for example, there may be a specific research project to getting young people involved in a randomised controlled trial, and you're just looking at the young people in their clinical white lab coat setting and not looking at young people beyond their life and beyond that diagnosis, which really needs to change. Like most typical young people, young people with a chronic illness or disability still like to go out, have fun, experiment, have relationships, have education opportunities is all factors that aren't regularly considered when taking research into account. Researchers can, and they do so much more. There's so much more to young person  engagement than development and design, young people should be at the focal point of youth engagement and youth embedded research, not just added on the side to check a box. My heart with this guidebook is that'll help provide an intrinsic insight into how to work with and alongside young people to allow empowered and enriched youth engagement take hold for better quality research. I can only hope these guidebooks will help researchers and professionals look beyond the diagnosis instead of the interventions, to see the young people holistically in the context of their lives and not just in relation to their illness. 

Kate Steinbeck [00:33:54] Thank you, Grace. That was a fantastic, cool introduction to the panel work. And I know you speak from the heart all those words, and I think the work that you've done along with others has...will, I hope, change many people's views. And with the resources it, it will be, uhm, I think, I think a difference will be made, and I hope that by the end of your career, you will be able to say, yes, there has been a major difference made. So I'm coming on to Cristyn. And the question for you, Cristyn, is you've really experienced in...your you're really experienced in youth engaged research and advocacy. What do you think this guidebook offers and what in particular do you think researchers really need to check out or try in their own practice? 

Cristyn Davies [00:35:01] Thanks so much, Kate, for a really great question. I'm really delighted to be here today with everyone. So I always learn from partnering with young people when undertaking health research, and I'm really energised by the dynamic engagement, including learning about new discourses or ways young people speak about their lives and specifically their engagement with health services. So partnering with young people in health makes me a better researcher, and that's really inspired my work in advocacy in particular, and it's given me the courage to speak out about health inequities, such as young LGBTIQA+ people's access to quality health services, for example, that's one of my areas of expertise, and this is a very different kind of learning from, for example, reading or reviewing a systematic review. And of course, that's differently important. The guidebook offers accessible, practical and easily implementable guidance and direction about how to best engage with young people as partners in research about youth health. It shows researchers how to reconfigure health research as a partnership with young people, rather than young people just being the focus of, of the subject matter of the research. The guide book and resources show how youth engaged research produces research with increased relevance, and of course, that can lead to better research outcomes. I think engaging young people as research partners can lead to research design that drives higher engagement among young people, higher ethical standards and better data collection. And that's because there's enhanced trust and a better rapport with young people. It also contributes to more insightful data analysis, as well as wider and more effective research dissemination and translation. And this robust, robust process not only increases research relevance and quality, but it also helps to prevent research processes and outcomes that may be irrelevant or even harmful to young people. I think that's really important, but ethical imperative. The guidebook also highlights that intergenerational and multi-stakeholder research produces better research outcomes, and research and policy making can benefit from intergenerational and multi-stakeholder engagement, which, combined with each group's expertise and knowledge, promotes robust ethical engagement and better research and translational outcomes. I was really interested to learn from the guidebook that young people are most frequently involved in research, design and data collection, and less frequently involved in agenda setting and research translation and dissemination. And I'd really like to see that change. I think one of the other things I learnt, also that was that young people are more engaged in mental health research rather than infectious diseases, for example, and I work in vaccination, so that's something that I really took note of. Researchers need to consider using an integrated knowledge translation approach, and that means involving young people as research partners from research inception to the dissemination of findings or research translation to inform policy and practice. This approach generally requires more time, resources and planning, but it does lead to higher quality research and better outcomes. And finally, while individual researchers and teams can adapt their practices to be more inclusive of young people, so must institutions, ethics committees and other governance structures. So, for example, how many ethics committees are people aware of that have young people as members are included in some kind of advisory capacity? How do organisations and institutions meaningfully include young people's perspectives? And these are questions that we all need to consider so that we can address age related systemic discrimination or lack of inclusion. Thanks so much, Kate!

Kate Steinbeck [00:39:00] Thank you, Cristyn, for a fabulous answer. And I'm going to now, I'm just trying to press the button, uhm, to the next question which is to Peter. And Peter, you've been part of the WH&Y Commission and you're now a health professional. What's the most important thing that you've learned from the experience and collaborating with other young people and researchers? 

Peter Lin [00:39:44] Thanks for the question, Kate. It's lovely to be here. I think one of the really important things I've learned is to really just come in with an open mind and assume nothing. Especially when you consider adolescents, you know, ranging from the ages of 12 to 24. This encompasses such a wide range of both developmental stages, schooling and also life experiences based on what an individual has had to go through in their journey so far. And you can see that, you know, even if you take a snapshot of all the WH&Y commissioners and such as Grace and myself, you know, there's such a range of diversity there. And especially as a health student, the last few years, I've seen how easily it is when you're working in sort of academia or research to kind of get sucked into this bubble. And it's just important to, you know, have that insight that when some things that might seem obvious from, from our standpoint may not be, you know, to others, especially young people, to bring them into that world, as well as understanding where they're coming from as well. And I think that leads to my second point about not really like not to underestimate the importance of building relationships with the young people that you work and collaborate with. And when I joined the WH&Y as a commissioner, one of the best aspects I found was that the way they integrated us into the program and really made an effort to understand us as young people. And I think it really goes back to, you know, some of the values from the engagement framework, which is in the guidebook. Having that mutual trust, equity and diversity, it really goes a long way to making the experience positive and rewarding for the young people that do engage in research as well. 

Kate Steinbeck [00:41:20] Thank you. So it's really fascinating to hear everyone's perspectives. And I think a great point that, that we all as human beings have different, different ideas and different views, and these need to be understood and collated. Maia, you've got the last formal question, as someone who's worked in advocacy for a long time. What do you think are the major barriers to translating youth health research into policy, and how can these be overcome? 

Maia Giordano [00:41:57] Thanks, Kate. And I guess the first thing I'd say is that advocacy needs research evidence base, as well as young people's lived experience and expertise. So those two work together, and they're really key for advocates like myself and other organisations that are actually pushing to influence change for young people's health and well-being. And I guess there are two main barriers that I see in that translation. And the first is what researchers in academia talk about when we talk about research translation is often looking at scholarly publications or a research presentation at a conference, but what's needed to translate research findings for a youth policy or a broader audience is often quite different. It took me a while when I worked with the Wellbeing Health & Youth Commission to really understand that, that difference that when people talk about research translation I was thinking of that more as a, you know, as race... as putting some research outputs that a policymaker or a layperson or an advocate could really just pick up and run with and really learn from without having to have  paid subscription to a scholarly publication or be able to understand the academic language, which is sometimes prohibitive for a young person or for, you know, even someone not in academia. And the second big barrier that sort of flows on from that is, uhm, that research institutions, advocates and policymakers, they're not always working collectively or consistently together to learn from each other and tap into that, that amazing resource we have from, uhm, from research so that they can really draw on that evidence base. So I guess to me, you know, the first piece of the puzzle is embedding youth engagement, and if everyone uses these guide books and actually incorporates that into their practice, and if that's coming along well and young people are engaged at all stages from design to translating the research, if that's happening, that would be wonderful. But the second element, that I think is really key, is actually seeing how we can actually embed cross institution and multiple multidisciplinary collaboration to coordinate and disseminate what we're learning from research, so that it can be really taken and run with by young people, the broader public as well as policymakers. We sort of have like even some public servants have said, well, we're not going to raid something that's too complex. They might only read, you know, ministers might read something that's one or two pages. So I think if we can get better partnerships with organisations like myself or there's an amazing group of Youth Peak Bodies that all work as their core business, is engaging young people and the sector and translating that for government. If there can be a better time, then we can really start to see everyone's work actually be taken and implemented in a real world setting, which I think is what we're all hoping for. 

Kate Steinbeck [00:46:00] Thank you. Well, thank you to the panel for, for great answers. We do have time to have some more general questions. What I'll probably do is direct them to a panel member first, but please, any panel member, just signal if you'd like to answer that as well. So my first question is. There's interesting comment here and Maia you might be able to...uhm, to answer from Andrews, that says, where in the guide does it mention working with the AH&MRC, which is the adolescent... The Aboriginal Medical ...Aboriginal Health and Medical Research Council? Maia, can you help me out on that one? 

Maia Giordano [00:47:02] I'm not sure about that.  

Kate Steinbeck [00:47:04] So we might have to.

Maia Giordano [00:47:05] Be a question that we need to follow up. 

Kate Steinbeck [00:47:07]   We need to take a notice. And if it hasn't, if it hasn't been included, then that's clearly something we need to include. So thank you, Andrew, for bringing that to. There are lots of comments here that says great resource, wonderful, excellent, fantastic. But let me come to the next question. Look, this is for either Peter or Grace. And I guess one of, one of the questions is... a question from Angela. And you, you may or may not have been personally involved in research, that is, I'm assuming, as a participant. And do either of you have any comment to make on that or on the sort of lived experience of being a research participant? If not, we'll just pass over. If there's nothing you feel you need to say, we'll move to the next one. I think you've said a lot already. 

Peter Lin [00:48:15] I could probably answer that first. I, so, last year as part of the WH&Y Commission, I got involved with a research project that we were running on sort of key health priorities and health needs of young people across Australia, of young, young people across Australia that we actually took to a AAAH (Australian Association for Adolescent Health) conference last year. That was a really good sort of, I guess, experience from my end, working with, with Pip, working with other WH&Y commissioners as well, you know, getting us involved in how to do research, the methodology, but also incorporating our sort of understandings and lived experiences sort of in that process as well. And I found that as a really good example of how many of the principles in the, in the guidebook would then able to be implemented in the practices that, that the WH&Y had been using the last few years in terms of, you know, really sort of bring us on board in that process, but also giving us sort of something to get out of in return for that. So I...that was probably my experience in participation. 

Kate Steinbeck [00:49:21] Thank you. And Grace, do you have anything to add or shall I go on to the next question there? There are so many of them. Would you like to add anything? 

Grace McGowan [00:49:29] I don't have that much to add. I think Peter basically summed it up very well. I haven't been involved in that many specific, just little bits of little things, and I guess a bit of the creation of this. But I think just, yeah, it's a really valuable resource and...yeah, sorry, I kind of forgot the question, but that's okay. Yeah, but it's yeah, basically everything Peter said, it's really helped. 

Kate Steinbeck [00:50:03] It's, it's lovely to get sort of the same conclusion that I think that this...that we all gain from research, if we do it properly. It's not just the participants or the researchers, but it's, it's a big gain for the community. Now, we've got a question from David, who says, Is there a current research project that is using the guide in its totality? How is it going and what is its name? So did you want to answer that, Mia? Because we've only [inaudible] online, so they probably had less ones that instantaneous [inaudible]. 

Mia Cox [00:50:46] That's right, unless there's been some magical rapid research projects, the answer to that is, no, not yet. So, yeah, I guess the key thing about this resource is that it's been pulled together based on the experience of the, of the WH&Y Commission and their processes that they've... that we've undergone together with young people and researchers over the past, that's over the past of a 5 years, really. So it's been a long process and these are some of the key learnings from that experience. So it's certainly as well, I think somebody else has asked another question about, you know, working with really particular cohorts of people. This, you know,  this guidebook is just a start. It certainly doesn't cover working with, you know, every single particular young person in, in all domains of health research, yeah, and it's it's just a start in that sense. But certainly I think we really interested as well, if you've got a research project which you're just about to start, which you're sort of, you know, in progress with, and you actually want to test that in your particular context. We would also, I think, really like to hear some of that feedback on how you're using it or what things have been particularly useful and also feedback on where some of those gaps are because we certainly know again, this resource is a bit of a starting point, but it's certainly not the, not the end and not, yeah, it's an ongoing process, I guess. So there's more to explore there. 

Kate Steinbeck [00:52:20] But it has put together many experiences. Maia, do you want to?

Maia Giordano [00:52:24] I just wanted to add to that, just that question about does the guidebook cover specific groups? And I guess I'd just say that good youth engagement means that you work reflectively and in consultation with the group of young people you're working with. So in some respects it, it shouldn't matter if you, if the group that you're working with, it's not listed. It's about being inclusive, being welcome and open, getting the preparation right and making sure that it works for the group. And you know that because you've asked them, we're going to do this activity with that work, and then they can say, oh, well, pictures would work better for me, or, or you work with a worker that has worked really for a long time with that cohort and you learn from them. So I think there's sort of something to be said for just being open and consultative in the way that you work with young people, and then you can have confidence because you've asked the groups that are going to be engaged in your research or the recipients of the questions or whatever you're doing. 

Kate Steinbeck [00:53:46] Thank you. We've actually almost run out of time. So what I'm going to do is give the panel an opportunity to add anything that they feel they would like. And the question would be, what advice would you give to a researcher looking to engage with young people for the first time? Cristyn, would you like to start off? And then we'll..

Cristyn Davies [00:54:20] Yeah, I think these are really fantastic resources and there are lots of ways in which you can engage with young people. But I think, I think it's to start speaking to young people, actually. And I would encourage, I mean, I understand that you can do it at any stage in the research process, but I would encourage you to engage with young people from the beginning because as I mentioned earlier, that young people are often not engaged in agenda setting and dissemination. They're often engaged later in the research process, including perhaps data collection and etc. So I would really encourage people to, when you're designing your research or thinking about what you might do to actually consult young people to refine your research questions and approach, and also talk to people who are specifically in that area. So, for example, I mean, the way that Maia was mentioning, that if you're working with a specific group, you know, you can use this guide as a blueprint and then also consult, you know, people with specific expertise in that area, in order to kind of scaffold your learning and your approach. Thanks, Kate!

Kate Steinbeck [00:55:26] No, I think you raise a good point that some, I mean, where do you, where do you start talking to young people? Where do you find them? I mean, it's, it's sometimes harder than then I think, it's hard for people to start. And I think your point in speaking to somebody who has done research with young people will give you some clues. And I'm sure there will be other pieces of advice in the guide. But there young people are everywhere and there are many young people in active in many bodies, clubs, institutions, schools who would be... but it's useful to talk to somebody thas some experience with that. Peter and Grace I think you should be the ones to end this question set. If you have anything else to say that you think you would like to. But it's, what advice would you give to a researcher who is looking to engage with young people for the first time? 

Grace McGowan [00:56:36] Yeah, I really agree with what Cristyn said, Kate. I think communication is so, so important at every level of the research, even like pre, post, throughout the whole thing. I think in a non-hierarchical sense or getting on the same level as, as your youth engagement, we can't have youth voice without talking to youth. Youth people, we, we want to be heard as people. You just need to, like a, like you're saying find them. But researchers need to be inclusive and make youth engagement  accessible [inaudible] communication is at the centre of it, so just making sure.

Kate Steinbeck [00:57:24] You know, that is really important because a lot of medical students and other students, I talk to have very little communication with young people. I mean, it's sort of I think they would have people like they could ask, talk to. But I think in this society sometimes we just don't sort of connect into general, into generally...generationally and this is what I think is, is has been raised in this particular guide as well. Peter, anything to add to that? 

Peter Lin [00:57:59] Having recently been a medical student, can definitely agree to that, Kate. And I think very fair point that Grace has made as well, and Christyn, and everyone else on the panel today. I think, I just leave it with, you know, young people as individuals are more than the sum of their parts that they, you know, might belong to this community, have this identity, have these issues going on. But the way that those interact with each other, that may not be as simplistic as we might, it might be on the surface. And it's really worth getting to know sort of, you know, how it's actually impacting on the young people to understand who they are behind all of that. 

Kate Steinbeck [00:58:38] Thank you. And Mia, on behalf of Pip, who sadly, she was going to have the last and final word. Is there anything that you would like to add? 

Mia Cox [00:58:54] No, I think well, everyone has said some beautiful things. And yeah, I think the key takeaway is that this guidebook is a starting point. It's a starting point each the journey that you're going to go on in terms of youth engagement is unique, it's dynamic. None of us, even those of us who've worked in this field for for a while, we are always still surprised, we don't know the answers and we all have so much to learn along the journey. And so I guess, as others on the panel have said, these resources are really that great starting point to help you get going and have the courage to do this and to go on that journey. And actually, I think you will find and this in my experience working with young people is so inspiring, is not the right word. It's it's makes you realise why you're doing the work that you're doing and actually bring so much life to the work and the research that you're doing and it's so dynamic. So I would encourage people to take a look at these resources, but then also think about using them in a way and adapting them to be fit for purpose. For your particular context, to work together with young people and others in the context that you're in, reach out, listen, ask, don't assume. And it's that, it's that relational process that's going to deliver the really fantastic outcomes, and takes a little bit of courage to do it. But it is so worthwhile and will, yeah, it will change the way that you research and the outcome. So yeah, I'd encourage people to take a look on the website, use the resources, share with your networks and we'll [inaudible] the project that you've got coming up in a bit. Stuff you don't, you know, you want to involve some, some young people, but kinda don't know where to start. I guess the WH&Y Commission has this incredible pool of young people, who are involved in different projects. And so perhaps contact the WH&Y Commission to see if there's some way that you can collaborate and do let us know how you use these resources or any feedback that you might have sent. And just a huge thank you to everyone. 

Kate Steinbeck [01:00:57] I think, I think that's a great note to end on. We would like your feedback. It's always helpful and because it's an Internet resource, we can change it. It's not like we've printed a book. And so I would just like to thank everyone who's taken part in this, especially to commissioners who've taken time out of their busy lives. Thank you for everyone online, and I'm sorry that we couldn't answer all your questions, but I can tell you there's so many positive sounds coming in the chat, so that's fantastic. Thank you, everyone, and look forward to seeing you in April.