Kate Steinbeck [00:00:04] Hello, everyone. I'm Kate Steinbeck, and it is my pleasure to welcome WH&Y's first webinar of our webinar series for 2022. And in fact I'm going to very soon hand over to two young people from the WH&Y Commission who will be telling us all about the WH&Y Commission, how it developed, what it's done, how they can work with your research, and lots of other facts beside. So welcome. Before we start, I usually I acknowledge the number of universities that are involved in this and Western Sydney University, of course, is where the WH&Y Commission was developed.
Kate Steinbeck [00:00:58] I acknowledge the traditional owners of the country throughout Australia and recognise their continuing connection to land, waters and culture, and we pay our respects to their elders past, present and emerging. I'm on the land of the Darug people Please feel free to put in where you are.
Kate Steinbeck [00:01:26] I draw your attention as I do every month to our fantastic website, why.org, which we will be referring to later, I know the Commissioners will. We also have a Community of Practice there where we are encouraging those of you who are interested in research in adolescence health to become part of our WH&Y group.
Kate Steinbeck [00:01:59] A few housekeeping things. We will be muting your microphone, and you can see that if you want to react, ask a question, type a comment, you can do that through the chat function. We won't be taking questions in the middle of the presentation, I'll be fielding those questions to our presenters at the end of the session. The chat is up on the left-hand corner, and we are going to be doing a poll later. So please just enter your questions and comments. You can rewatch the webinar or read the transcript and we'll timestamp our questions so you can move through those documents or on screen later on.
Kate Steinbeck [00:03:14] And so it is now my pleasure to introduce two young people who are working within the WH&Y Commission, I'll explain their roles in a second, which is the group that is our Young People's co-research team. I'm going to first introduce Betty Nguyen, who's waving to you all. Betty graduated from Western Sydney University with a Bachelor of Law and Honours and Bachelor of Arts and has also completed a Graduate Diploma in Legal Professional Practice from the University of New South Wales. She's an admitted lawyer in the Supreme Court of New South Wales. But, at the moment, Betty is working as a research assistant for the WH&Y Commission, and in fact she was one of our original Commissioners. So once you join, you're in it for life. Not really, we'll let Betty go where she wants to, but she's certainly so fantastic with her passion about youth engagement and particularly young people's rights.
Kate Steinbeck [00:04:24] And our second great presenter is Jahin Tanvir. Javin is currently a member of the WH&Y Commission, and he's also undertaking an accelerated Bachelor of Vision Science, and Master of Optometry degree with an ambition to work clinically and as a pediatric optometrist. And also adding to a second role of really striving towards being a global health advocate, Jahin joined the WH&Y Commission because he wants to make sure that young people are heard in research that relates to their overall well-being. I think many of our audience can relate to that, the importance of the youth voice from the beginning of our research. I think enough from me, I am going to hand over to Betty and Jahin to present.
Betty [00:05:27] Thanks everyone, my pronouns are she/her. All right, so before we jump into our presentation, I thought we might just go through what is the WH&Y Commission? The WH&Y Commission is a part of an action research project, which has been co-created by young people and is funded by the NHMRC Wellbeing, Health & Youth Centre of Research Excellence. Now, the WH&Y Commission was created because even though we do have adolescent health research, we know that young people are often not involved in the research process from the very beginning and often are left out in conversations that impact their health and well-being. So our aim is to reinvent teenage healthcare by putting young people's lived experiences at the centre of research, policy and service. What aren't we? The WH&Y Commission is not a panel provider or a recruitment service for research projects. This means that the WH&Y Commission does not recruit research participants for research projects.
Betty [00:06:35] And now here is the exciting part, the WH&Y Commission team. In 2020, there were 18 WH&Y Commissioners, in 2021 there were 27 Commissioners, and this year, excitingly, 24 out of the 27 Commissioners are continuing with us. We are currently finalising our new cohort of Commissioners in 2022, and these young people are from New South Wales, Victoria and South Australia. Now all our Commissioners are currently between the age of 14 and 23 and are from the Greater Sydney region. However, with this year's recruitment, we plan to expand into regional and rural areas of New South Wales, Victoria and South Australia. I have a feeling all of you are wondering how we work? We have onboarding and an induction process, and we offer an online and a face-to-face version. We have core workshops on the following topics: the need for youth participation and youth health research and translation; research methods in the form of research carousels; research ethics; and communicating research. Most importantly, we have WH&Y Commissioner-led workshops. We have led workshop on intersectionality and youth health research, gender and sexuality diverse, and youth health research. The WH&Y Commissioners also work with WH&Y Chief Investigators advising and collaborating on projects and advocacy. The WH&Y Commission also consults external entities and projects. As Kate mentioned, I am an RA [research assistant] at the Young and Resilient Research Centre, Western Sydney University. But most importantly, I currently support and coordinate the WH&Y Commission. Jahin, would you like to introduce yourself?
Jahin [00:08:48] Thanks so much, Betty. So I joined up with the WH&Y Commission in 2020, and basically I joined up because as a young person I've always wanted to play a part in how we shape health research that affects me as a young person, as somebody who's going through that phase. And when I saw the WH&Y Commission, I was just like, this is perfect. I'm able to elevate my voice, but at the same time, get exposure to the whole research world where as a young person, sometimes you feel like there's just so much jargon, there's just so much fear involved. And so that was really my first step and to this very day, I thank the WH&Y Commission for giving me that platform, for giving me that space to discover what I want to do. And as Kate very eloquently mentioned, I'm studying optometry, so my passion is always to work with young people, being involved in new research projects and different involvements with Betty and the rest of the team, it's been phenomenal. The whole idea of co-design and the beauty of that when it comes to young people.
Betty [00:09:55] Jahin is now going to introduce to us a WH&Y Commission report, which showcases the cornerstones of youth health research and policy priorities.
Jahin [00:10:19] The WH&Y Commission report is basically giving young people the voice platform to express their concerns about health and well-being. In the last two years, I don't even need to give a background on what it's been like for everyone in the world, but particularly with young people and the unique social determinants that affect their lives. There's been such a dramatic impact on their health, mental health, education, employment. The Report basically brings all of that research together, first and foremost with the help of young people and their input, and it really addresses these concerns. You know, we’ve got health, we’ve got youth health primarily, we've got research and we've got policies. And there's a few solutions that the WH&Y Commission has come up with in terms of addressing these sorts of difficulties. We like to characterise the WH&Y Commission report as, if you want to know anything about what young people think about their health, this is the report for you.
Betty [00:11:24] Yes, thanks Jahin. So in terms of methodology, the WH&Y Commission report is underpinned by the WH&Y engagement framework, youth participatory methods, and co-design. Over the course of four workshops between March and July, 2021, which were conducted online and face to face, 26 Commissioners aged 14 to 23 were involved. And during the workshops we asked the Commissioners the following questions. Number one, what are the youth health priorities from your perspective? Number two, what are the effective ways to work with young people in health, research and advocacy? Now the outcome of this was to build a dialogue between the WH&Y Commissioners and researchers, as well as a report that we could share more widely. Excitingly, both of us will take you through our six health priorities. Over to you Jahin.
Jahin [00:12:31] Young people have been impacted by COVID-19, as has the rest of the population. But with such financial and emotional hardship on their mental health and not being able to find that sense of fulfillment anymore with the world in such an uncertain place. COVID-19 has been at the forefront of everything that we've been doing. For the WH&Y Commission, we've completely transformed to an online environment, we've had to do that for safety purposes, but we've still continued the process of doing research, talking about our lived experience, what it's been like in isolation, how has our employment been impacted, how can we better support ourselves and the people around us. COVID-19 has definitely been the number one health priority, and it's been the umbrella that's cascaded into the other priorities, but it's specifically financial support and financial hurdles, emotional support and also moral support when it comes to young people and COVID-19.
Betty [00:13:35] Beautiful, thanks Jahin. So the next WH&Y Commission health priority is mental health and eating disorders. Now, the WH&Y Commissioners have highlighted the need to prioritise mental health promotion, early intervention and initiatives to promote help-seeking and resourcing to provide treatment for young people with mental health needs. This is particularly important for suicide prevention because the WH&Y Commissioners are concerned that young people are not aware of the services and strategies that they can utilise to get help. The Commissioners called for holistic approaches that better unite mental health and physical health care throughout young people's health-care journey, whether that is in the community or in treatment settings. The Commissioners are also concerned about the role of influencers on social media and its impact on young people's expectations of body image, eating habits and food, and most importantly, the WH&Y Commissioners want a greater focus on the impact of eating disorders on young people in multicultural communities to ensure eating disorders are better understood and not stigmatised by these communities.
Jahin [00:14:53] Another priority that WH&Y Commission has identified is sexual health, and to be more specific, to have more and better educative resources to learn the realities of sex. The beauty of the WH&Y Commission is that we come from very diverse communities, from different backgrounds, different geographical areas around Australia. And the reason we've identified sexual health is because that's a massive barrier that exists in many marginalised, underprivileged and minority communities. For instance, for a a lot of us coming from South Asian and multicultural backgrounds, sexual health is a massive taboo and stigma, and that remains an obstacle when it comes to actually addressing it in a health and research sense. So we've identified this as a priority to focus on and really address on a community level so that we can not only communicate the research that's been taking place and to communicate it with the community members, young people, their parents and guardians, but also break that stigma because a lot of us have agreed that research, and evidence-based research most importantly, can change cultures because you are dealing with facts. That's what we found. So sexual health has definitely been one of the most paramount areas that we focused on, and especially young people from underprivileged areas.
Betty N [00:16:14] So what does the WH&Y Commission mean when it comes to environments and products? The WH&Y Commission wants environmentally sustainable and youth friendly spaces, which enhance young people's health and well-being. The WH&Y Commissioners want some spaces to be separate from adults, and all built environments should be accessible, safe, appropriate for all young people. Now, coming out of the COVID lockdown, natural and built environments and infrastructures for exercise are so important because these directly impact young people's physical and mental health. The WH&Y Commission has specifically highlighted its importance in low-income communities. The Commissioners are also concerned about the lack of regulation, allowing poor-quality foods, especially fast food, and harmful products such as vapes to be marketed indirectly and directly to young people. They want to prioritise research and policy that focuses on access to healthy, affordable food and to be better protected from harmful products.
Jahin [00:17:31] Next one is health ethics, and this is definitely one of those topics that initially as young people we were just like, okay, what is that? It's just so much jargon, I don't understand. But once we were able to deep dive into what it means, we understood that young people want to have access to credible and accountable health information. It's also about research ethics being more inclusive for young people and enhancing young people's participation in adolescent health research. Basically making it clear how young people can get involved, and from a young person's lived experience, I never knew this existed or this was a paramount issue that we need to take into consideration. Being able to deconstruct that from our time on the Commission, co-designing and working with different researchers, we've identified that this needs to be more accessible in one regard, but also made clearer so that young people can get involved and can feel more empowered by research rather than, you know, thinking, oh, that's completely out of my reach. So that's the fifth health priority. And over to you, Betty, for the last one.
Betty N [00:18:34] Thank you. So, most importantly, health information and health education. The WH&Y Commission is calling for health information and education to be youth centered. This is because the WH&Y Commission believes that health information is often presented from an adult's perspective and is not very engaging for young people. The WH&Y Commission values transparent and accountable health information and health care. They want to use this information to inform their decision-making whilst retaining their sense of agency and autonomy. And most importantly, the WH&Y Commission wants to make health information education more fun, engaging, and they hope to see health information co-designed with young people for young people. And most importantly, the information needs to be translated into a product that young people can actually relate to and understand. So those are six health priorities. We are going to move on to our research and policy priorities. So, Jahin, would you like to talk about the social determinants of health?
Jahin [00:19:49] When it comes to research and policy, because it affects young people directly every single day, the number one priority is social determinants of health. Really taking a more holistic approach and considering all aspects of young people's health and well-being. If you're living in a marginalised community or an underprivileged, low socioeconomic community, there's certain social determinants that will affect you. How do we take that into the consideration and into the conversation? Whereas if you're living in another area or geographical location, there wil obviously be different social determinants in that sense. So how do we bring that together? And as young people coming from diverse backgrounds, as I mentioned, that's the beauty of the WH&Y Commission, we come from such diverse backgrounds, we're able to bring that together and also have that holistic conversation that social determinants affect us in unique ways. We need to address all of them to have research empower us instead of saying, okay, you're part of that social determinant that's only affecting you, let's not look at that. The whole idea of deviating away from the one shoe size fits all mentality to one that we consider and address every concern that young people may have.
Betty [00:20:59] Beautiful. Thanks,Jahin. The next one that the WH&Y Commission has identified is discourse and what the WH&Y Commission means by that is that they've identified certain labels and language. For example, the terms child or adolescent that constructs young people as risk takers, as irresponsible and a problem to society. Now, it doesn't help when a lot of health professionals and researchers think that young people are misinformed or misguided by the decisions that they make in life. Ultimately, what the WH&Y Commission is saying is that young people want to feel respected and want health professionals to use language that is specific and inclusive to their needs, interests and life experiences. The WH&Y Commission wants to address stigma, in particular the stigma of youth, and help to address the power imbalances that exist in young people and adults in health research and policymaking. The WH&Y Commission has provided an example of a term that they like, so the Commissioners prefer the term young people to adolescents because to them it's more inclusive and it opens up conversations about health and well-being within their communities. Most importantly, it doesn't limit young people's capacities or create assumptions about them. What young people really want is authentic communication that values their lived experiences so that an equitable health future can be created for all young people.
Jahin [00:22:35] Next, research and policy priorities, accessibility. So in the last two years, we've seen a major shift from face-to-face to online telehealth services. And as good as those services are, there are a lot of communities of young people from regional, rural, remote Australia who don't have access to these services because of technological differences, not having access to the internet. And these are points that we had to raise and take into consideration. So to make accessibility paramount, we needed to have more accessible resources and services similar to other communities that we mentioned before, multicultural communities. There are massive barriers when it comes to accessibility to psychologists, for instance, a lot of young people mention that they don't know how to speak to psychologists or where to contact a psychologist. How does my Medicare work when it comes to psychologists? So all these different factors that come into play, and it's just about educating them and being there to raise awareness. Overall, improving accessibility for different areas of young people, not just one shoe size fits all, but the idea that we address young people from different diverse backgrounds.
Betty [00:23:52] In terms of diversity, the WH&Y Commission wants greater cultural sensitivity and diversity among health professionals, health services and health information to reflect the complexities of young people's lived experiences. The WH&Y Commission has said that there is a positive impact on having clinicians who are of similar background because they feel like they can empathise with them more and that they can relate to young people's diverse experiences. And most importantly, the WH&Y Commission would want all young people to be represented in narratives about young people's health and well-being. They are calling for greater representation from young people from culturally and linguistically diverse backgrounds, refugee and immigrant backgrounds, low socioeconomic backgrounds, LGBTQIA+ backgrounds, Aboriginal and Torres Strait Islander backgrounds, young people who have experiences with unstable housing or homelessness, young people who have experiences with or have a disability, and young people from rural, regional or remote areas. What the WH&Y Commission is calling for is better training, youth friendly health information and awareness of cultural diversity and backgrounds among health professionals and organisations so that young people's needs and their intersectionalities are reflected in the care and information that they receive. Now it's most important to include young people's peer and community networks in conversations about health and well-being and their health care because it creates a greater cross-cultural and intergenerational trust in health services that young people access. .
Jahin [00:25:44] What brings all of our priorities essentially together is participation. We wouldn't have a WH&Y Commission if young people didn't participate or were like minded and wanted to get involved. Our last priority was to have dedicated spaces for young people when it comes to co-design, when it comes to research. When it comes to having conversations with academics, we want that barrier to be as broken up as possible, so it becomes accessible that young people can have conversations with researchers to break the jargon that exists and increase accessibility essentially. So having young people dedicated spaces like the WH&Y Commission, as we're doing with the Centre of Research Excellence, being able to have conversations, being able to bring young people along. Betty and I were part of the recruitment process bringing young people from all around Australia together with the common good and common goal of pushing the agenda to have young people involved in research. Young people do want to be part of research, and it's just about giving them the dedicated spaces, and that's been one of the main areas that we've identified.
Betty [00:26:50] Thanks, Jahin. So those are our research and policy priorities. In terms of principles, Jahin, would you like to talk about these principles since these principles are what the WH&Y Commission has come up with? Before Jahin just jumps in, I just want to say that the WH&Y Commission's principles are things to help guide health research and conversations with young people.
Jahin [00:27:22] The principles that the WH&Y Commission came up, came out of discussions and conversations with one another and the whole idea of co-design. Number one, holistic approaches. o again, taking up a more macro viewpoint rather than minor micro ones when it comes to identifying health challenges and how we can better identify them.
Jahin [00:27:25] Authenticity and respect, again whenever we're dealing with each other as young people, when we're dealing with researchers, academics, when you're dealing with different stakeholders, it's just about being authentic, it's about showing respect and identifying that we're all here for the same common goal.
Jahnin [00:28:21] The third one is autonomy and agency. Young people want to feel liberated. They want to feel like they're feeling empowered when it comes to research. That comes with giving them the space, that comes with the whole idea that young people have so much to say. It's just about giving them a platform to speak on the issues that they are involved in. And the beauty of co-design is that it's exactly what it's there for, being there to give them autonomy and agency.
Jahin [00:28:59] Number four is diversity and inclusiveness. As Betty beautifully mentioned, we come from so many different backgrounds, so many different age groups, different degrees. I don't think there's two people in the WH&Y Commission that have the same degree, and that's the beauty of it, we get to contribute to health research from different perspectives, different social determinants and different interests. And it just comes together because at the end of the day, we're brought together by being young and also being able to mentor and teach one another our experiences. And, at the end of the day, push that agenda that young people need to be part of the health research agendas and the whole process of research for young people. Because if you're researching about young people, why not empower them and get them part of the process?
Jahin [00:29:25] And the last one is integration and innovation. You know, when it comes to young people, we're always trying to find out different ideas Betty would know for every meeting that we've had, we have so many sticky notes around the wall, we have so many ideas and it's just about making it accessible, making it digestible and making it inclusive so that we can integrate these ideas and innovate as much as possible with these ideas and just make research accessible for young people so that they can understand it, there's no communication barrier and we can have a very constructive and productive dialogue in how we move these agendas of ours and goals and things forward. And the final principle is accountability. You know, the beauty of having young people and researchers together is that we can hold each other accountable. Whenever as young people we feel like researchers need to do more, we have that conversation, we say hey, I'd love for you to speak to us on this matter or let's talk about the health care sector or let's talk about COVID-19 and how it's impacting employment, for instance. And it works both ways, researchers can say, hey, we need more young people as part of the process. If you want your voices to be heard, we need more young people from South Australia, Queensland, as we did when we were expanding the WH&Y Commission. So just about holding each other accountable and then making very productive leaps forward in our common goal for health agency and health research in general.
Betty [00:30:53] So, Jahin, do you want to also go through the recommendations?
Jahin [00:30:58] Absolutely. When it comes to young people, we love action-oriented courses. A few of the recommendations that we've come up with as a group, as a team, number one is partnerships. We want to work and have partnerships with other organisations, we can't move silently. We can't move alone. There's no power in that. Being able to collaborate, build relationships, build meaningful partnerships that want to empower young people, that's definitely been a step that we're taking.
Jahin [00:31:26] Second, young people's networks. There are obviously a lot of youth organisations in Sydney, Melbourne, around Australia, and we want to work with them. You know, oftentimes, especially in the last two years, all these organisations have a shared mutual goal of health and wellbeing. And as people in health research at the WH&Y Commission, what better way to push that forward and help that cause be elevated, if not working with people who have the same goal in mind? So young people's networks, building meaningful connections, it's great to have some organisation’s name on a pamphlet or on an event, but why are they there? What are they contributing to? How are we working together, just making that very clear. That's been a very critical recommendation from us.
Jahin [00:31:31] Third, cultural awareness and cultural competency. Again we're both from diverse communities, diverse backgrounds, there are unique social determinants everywhere. So just having that cultural awareness, whether that be through training, through more conversations between young people from different areas, different organisations, building that cultural awareness, it's integral, especially in this day and age where inclusion is so important.
Jahin [00:32:39] The fourth one is capacity building, so continuously upskilling, continuously having new innovations. You know, young people want to get involved, we're very ambitious human beings. If you've met the WH&Y Commission face to face or on our online platform, you will know, we have so many ideas and so we constantly want to build and create. And so giving them the platform for capacity building.
Jahin [00:33:04] The second last one is shared language, ensuring there's no jargon, ensuring that there's no miscommunication, ensuring that the language is accessible. A lot of the fears that I had, for instance, when I first joined the WH&Y Commission was how do I understand research? I'm this 18-year-old kid who just wants to volunteer and get involved. I don't understand research. And so having that shared language where researchers can come and say, hey, I understand this might sound, you know, a little daunting, but this is what it means. And then we build that conversation and we go from there. And the more we learn as young people, we can sort of teach and share the wisdom with the newer recruits for the WH&Y Commission and shift that culture that research isn't scary. It's just not, you know, taught in the way that we understand. So making it more accessible, sharing the language and also sharing language with different communities as well, which is again very important.
Jahin [00:34:01] And finally, streamlining information. The word that I continuously use that I love using is accessibility, ensuring that we have transparency in the research and information that young people are receiving, in the research that the researchers are receiving, the academics are receiving. We want it to be transparent. We want to be taking a holistic approach and understanding that this is what we're doing. It's clear and concise. And if it's not clear, we won't have actions that need to be taken. So ensuring that everybody is on the same page and understanding. And that again comes with more collaboration, partnerships, conversations. But those are the main recommendations that we came up with. There’s more detail in the report, which if anybody wants to read more about, please feel free to do so. This is just more of a summary, but those are the recommendations that the WH&Y Commission have come up with.
Betty [00:34:55] Thanks, Jahin. So now, the exciting part, how can the WH&Y commission get involved with your research? There are four areas in which the WH&Y Commission can be involved in terms of your research, and these are drawn from our four pillars which are research; advice and co-create, and this extends to research and translation; capacity building, which extends to young people and other researchers and beyond; and advocacy and policy. Now, in terms of these areas, I will give you a bit of a rundown on what the WH&Y Commission can do for your research.
Betty [00:35:37] The first area, obviously, is research. The WH&Y Commission can be involved in the research process and can help you at the data collection, analysis or research translation phase. For example, the WH&Y Commission has worked with Dr. Theresa Swift on her Emerging Technologies Literature review and her Future Scenarios project. In particular, a WH&Y Commissioner translated some of her research findings into these beautiful images. So that's one option that is available.
Betty [00:36:11] In terms of advice and co-create, the WH&Y Commission can give feedback on your research project wherever you are in terms of the research phase. The WH&Y Commissmission can also assist in co-designing resources to promote working with young people in research. For example, the WH&Y Commission has worked with Chief Investigators on new project proposals, such as the Synergy Grant.
Betty [00:36:39] In terms of capacity building, the WH&Y Commission can offer mentoring, and currently we are in the process of developing a toolkit, so watch this space. The WH&Y Commission can also help support you to conduct participatory, collaborative and youth-led research in the form of living lab workshops, which are co-designed and co-facilitated with the WH&Y Commissioners.
Betty [00:37:06] And lastly, in terms of advocacy and policy, this refers to translating research through research projects, including developing materials for youth and policymakers to promote your research findings. For example, the WH&Y Commission has advised the Australian Institute of Health and Welfare on indicators for Australia's Youth 2021 Report and were commissioned to write topic pieces for the report. And Jahin was actually a contributor to that report, which is very exciting. The WH&Y Commission has also made submissions to the Australian government and international bodies such as the UN CRC, and opinion pieces for The Conversation on young people and COVID-19.
Betty [00:37:59] And so that brings us towards the end of our presentation, but we thought we could do a bit of a poll in terms of who is actually interested in working with the WH&Y Commission. The question is, now that you know about the WH&Y Commission, how likely are you to get in touch? Your options are: you'll be hearing from me ASAP; sounds good, but no immediate plans; or not at all likely, which is fine, we won't get upset if you leave us that answer. .
Betty [00:38:59] I'd like to conclude with a quote from a Commissioner, which is "let's bridge the divide between adults and adolescents and make the discussions about health care less daunting". And that concludes our little presentation. I am going to share the WH&Y Commission report with everyone, if you would like to read further and dive down into specific points. You can contact me by email, check out our Instagram, which is actually led by the WH&Y Commission, and follow us on Twitter. So thank you, everyone. And now for the question, the most exciting part.
Kate Steinbeck [00:39:52] Thank you, Betty and Jahin. We are so proud of the WH&Y Commission. Speaking on behalf of the Investigators, when we thought about developing a WH&Y Commission, I don't think in our wildest dreams we really envisaged how it would turn out, who would come and want to be part of it. And it truly has become, I think, very, very central to the whole of our CRE. And even if the CRE is not continued to be funded because research is often very difficult as far as funding, we certainly have other ways to look at making sure the Commission continues. I'm now going to have a look at the chat. I'm going to give you the first question, which comes from Cristyn. Cristyn says, "thank you so much for a fantastic presentation, you are both so inspiring. How does your lived experience inform your approach to your role as a Commissioner? I'm very keen to hear about intersectional identities and marginalised identities. How do you effectively communicate this to researchers? What are your experiences of working with researchers who also may have lived experience of a marginalised identity?" That is about four questions. I think you can pick what you wish to answer. So off you go.
Jahin [00:41:50] I think for me, my lived experience is honestly everything when it comes to informing research, not only as a young person. I recently turned 21, so I fall into the category of young people, but also my identity being a first-generation migrant, growing up in Australia, trying to understand the language, and how to inform health decisions. So whenever we have consultations or discussions, that's always the first point that I bring up, this is where I come from, so now let's talk about it. Because systematically, there's a lot of disadvantages that exist for marginalised communities, underprivileged communities, minority communities and bringing that to the conversation and making us aware of the privilege that a lot of us have compared to marginalised communities, I always try to bring in my lived experience. You know, the intersectionality between identities and health, it's integral to how we speak. And so being able to communicate that with researchers is just having a very honest conversation. Instead of thinking this is a disadvantage, this is where I'm so different compared to everyone else, seeing that as a point of empowerment, saying that's okay, I'm different, but this could be valuable for research. This can be valuable for this many young people who may be coming from similar backgrounds in multicultural communities, CALD communities. Just reframing your mindset and being able to say, okay, this is empowering, let me communicate, let me be authentic, let me open up. And in that way, I think Betty can also agree that once we are more transparent, once we are more authentic other WH&Y Commissioners find that empowering and liberating themselves, and then they start opening up, and we start having this very beautiful discussion between researchers, academics, and young people. And so it just requires someone to open up and to talk about their identity first and foremost and how research affects them. And then everybody has that beautiful conversation.
Kate Steinbeck [00:43:52] Thank you. That was a really great answer, but I'm going to ask you one more question because I'm not certain that everyone online will understand the concept of intersectionality because I often get asked about that myself. I'm wondering if, because it is somewhat relevant here, if you could explain that as a young person, as a WH&Y Commissioner, how you see intersectionality?
Jahin [00:44:18] So intersectionality as a young person being involved in research, especially how everything ties together? So you can't expect to have great health if you're systematically disadvantaged by the geographical location you live in, or the colour of your skin or your identity. There's obviously different factors that affect health. Health is not just an umbrella term where everybody has the same opportunities. When you talk about intersectionality, it's just about how different factors impact us. So for instance, your education, if you go to a private school or a public school, there is always that debate, does that improve your health choices or your financial decisions? If you come from a different background, if you're first generation migrant or you're born here are your cultural interpretations different to how you inform health decisions. So just bringing all of that together into the discussion instead of just saying, okay, health is health, but health is much more than that, you know, it's such an umbrella term that has different factors involved. It brings different perspectives into the conversation and not just limiting it to the absence of disease. From what I've learned in university, it's not just absence of disease, social determinants impact us and as researchers being able to take that into consideration as well.
Kate Steinbeck [00:45:34] Thank you. The next question comes from Karen, "do you only get involved with major clinical and university-led research? We will have a small local peer mental health worker pilot project happening and would love some input." Very practical question.
Betty [00:46:12] So as I mentioned when I was talking about the options on how to involve the WH&Y Commission, we’ve worked with the Australian Institute of Health and Welfare. So it's not necessarily major clinical and university-led research, we are also interested in working with external entities and projects as well, and I would love to hear more about your small local mental health project. If you could email me.,
Kate Steinbeck [00:46:46] I think that's a really good point, because we often think of research as just belonging in universities with professors who possibly are out of touch with the world. And the importance of looking at research often starts in a way of just seeking to make something better for someone else's health and well-being and how to do that in a systematic way, in a way that will get answers that are useful and practical and may lead on to more research. Now I've got another one for you to answer from James, who says, "what have you noticed are some of the barriers to researchers and policy makers, often older people, taking your views seriously?" You've both probably had some lived experience of that.
Betty [00:47:47] Jahin, do you want to go first and talk about your experiences as a WH&Y Commissioner? And then I'll talk about my experiences as a youth peer researcher.
Jahin [00:47:57] Absolutely. I think the first thing that comes to my mind is the one that I can't get rid of is oftentimes we have these consultations and these meetings with young people, and it's fantastic. But what's the outcome.? Where does that go? And I think as young people, that's always been a bit of a barrier for us because we want to get involved, we want to be part of the process, but oftentimes we don't see where that leads to, does it go to a report? Do we ever see the report? Does it inform government decisions? Does it inform universities? We never really see the outcome. It's always come to the consultation and we're empowering your voices. But there's never any action-oriented output based response from what we've seen. And so that's always been a barrier in terms of motivation to attend these co-design consultations or working with researchers. And what the WH&Y Commission does fantastically is, you know, we have a report, we have a report at the end of the day that we worked on for a year or even more, that informs the decisions.. There are so many people that want to join the WH&Y Commission, so if more researchers want to get involved in the youth and adolescent sphere, tell young people what they're contributing to. They want to feel like they're working towards a greater cause. They want to feel the energy of their value. And in that way they'll feel empowered. And that barrier of why am I here will completely be negated and you will have some fantastic evidence-based research and discussion. So again, having the output-based response is very clear and concise. I think that’s the only barrier that I see when it comes to this.
Kate Steinbeck [00:49:39] Have you experienced having to ask a researcher as to what they intend to do and how they will involve you?
Jahin [00:49:49] Oh, many times in the past where I've just been like, great. the session’s finished. But what happens next? I've had to follow up sometimes by email after like a few months to say, hey, I remember doing that consultation, has that come to fruition, has it informed any decision? Most of the time you don't hear back, but sometimes you hear back and you get a report, but we shouldn't really be asking if we were part of the process. We'd love to be part of the entire process to the end.
Kate Steinbeck [00:50:17] That is a somewhat distressing reply to hear. It's so easy to just ignore emails that you don't want to answer, because maybe you don't have a good answer to them. But certainly, I think that's something that we as researchers who understand that research is not just one part of research, it's all the way from co-design to finally translating what we find to the words that young people will understand. I think that's been very useful to hear because it's sad.
Betty [00:50:59] Now, Kate, can I just add in something on the previous question before we move on. So I had the unique experience of being a youth peer researcher. What that means is that I was a young person who had research skills and then also became a research assistant. And one of the things that I've noticed as a barrier is language. Now what I mean by language is certain phrases or words that young people use, that researchers may not use, and so there's always this disconnect between researchers, policy makers and young people. And this is a barrier because what happens is young people will use certain terms to describe their lived experiences, and then researchers may misinterpret that. So I think it's really important to establish a shared language between researchers and young people and policymakers so that we are all on the same page.
Kate Steinbeck [00:52:03] Betty, does an example come to mind as you're talking about that.
Betty [00:52:16] So young people will use the term youth health services to describe services that they get in contact with. But from my understanding, youth health services in a health or a government context are completely different.
Kate Steinbeck [00:52:33] Yes, it can be. Yes, it's for a certain group of young people only. And that's a very clear example, actually, because why should we think that something that sounds very generalist is in fact, according to government policy and funding, quite specific. Thank you, Betty and Jahin, for that. Now the next question "the WH&Y Commission is amazing and I think that all states and territories should be able to stand up similar entities as health systems are diverse across the nation. But so many of the barriers are the same regardless of geographical location." And I think they probably did miss it when you were speaking about it. But the questioner is asking, Do you have youth representatives from across Australia? And perhaps you'd like to reply to that because it's one of your new initiatives for the year.
Betty [00:53:48] So I can answer. This year we're recruiting WH&Y Commissioners in New South Wales, regional and remote areas specifically, South Australia and Victoria. But most importantly, we plan to roll out this current WH&Y Commission report and scale it up to a national level. So we plan to have a look at young people's national priorities. Watch this space!
Kate Steinbeck [00:54:21] Very exciting, and don't forget Queensland and Western Australia. We're such a diverse sort of country in a way, particularly the size of many of our states. Now I can't see another question on the line, but I actually have a couple of questions for you, which I haven't written down. If researchers are to become involved with young people as co-researchers, how soon would you like to be involved, at what stage, because researchers respond to research calls, which are often quite quick. So are you in a position to also respond quickly if researchers want to involve you right from the beginning when they're actually designing their project, and there might not be a lot of time.
Betty [00:56:11] It's kind of interesting because I play two roles in the sense that when I started with the WH&Y Commission I was a young person, but now I've sadly aged out and I've become an older young person. But I think because I have that lived experience, it makes my job to support and coordinate the WH&Y Commission a lot easier because I understand how to bridge that gap between researchers and young people more easily.
Kate Steinbeck [00:56:57] And this is from Ian, who says, "thank you very much for the insights and ideas. Could you possibly talk through a practical example of when representatives from the WH&Y Commission worked with a research team on a specific project?"
Betty [00:57:20] One of my favourite examples of when the WH&Y Commission worked with a specific research project is when we contributed to the Australian Institute of Health and Welfare report. The WH&Y Commission had input into that report, specifically the indicators of that report and the WH&Y Commissioners themselves actually authored opinion pieces about topics that they were really passionate about and interested in. Actually, Jahin, could you talk a little bit about your experience of authoring that opinion piece as well.
Jahin [00:58:08] As another WH&Y Ccommissioner on young people and discrimination and how that affects their health and overall well-being, it was a fantastic process just being able to not only be given a Google document to just put our thoughts in as much as possible with someone obviously editing and helping us out, but when I look at the final copy of what we said in the report, I'd say 98 percent of what we said was in the report. So having that transparency and that streamlined information of what we thought our lived experience was and how we want to change, what our recommendations were and to have that entire section and paragraph in the report itself without any censorship or editing that was fantastic. Just being able to identify that, okay, all lived experience is important, it is valued. And so that was one of the examples, and the whole process was fantastic. You know, we were able to just have a consultation and actually speak our minds and our lived experience. Being able to see the end outcome, as we mentioned, an output driven outcome was fantastic.
Kate Steinbeck [00:59:19] I think in a way, you answered the question. You really want to get involved in the beginning and to see your thoughts and your considerations of the research be built into that research that helps you by not putting words into your mouth. I'm going to have to finish this now. Somebody just asked “when do you think you will go international?” We hope to do that in the end but the world is a big place, but I think we might aim to go there. Look, I want to thank Betty and Jahin for just a fantastic presentation. You've got contacts that you can get in touch and ask more questions. And I am going to pull this session to a close, even though I suspect we could talk for another 30 minutes or so. So thank you again. Thank you to our presenters and thank you to a fabulous audience.
About The Authors
Hey there! I’m Jahin and I’m currently undertaking an accelerated Bachelor of Vision Science/Master ...
Betty Nguyen graduated from Western Sydney University with a Bachelor Laws (Honours)/Bachelor of Art...