Co-Designer Handbook : simplebooklet.com

Read our published paper on “A co-design living labs philosophy of practice for end-to-end research design to translation with people with lived-experience of mental ill-health and carer/family and kinship groups” here:https://go.unimelb.edu.au/2ev8Read the Quick Guide of the paper here: https://go.unimelb.edu.au/rwk8We think it is important that research is communicated to community members and practitioners in a jargon-free way that they can understand. ‘Quick Guides’ are short, digestible research stories that translate complex research ndings into bite-sized insights. The Co-Design Living Labs Network Co-Leads have led the development of Quick Guides from 2024.

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Thank you and AcknowledgementsThe ALIVE National Centre for Mental Health Research Translation acknowledges the Traditional Custodians of Country throughout Australia and recognises their continuing connection to land, waters and sky. We pay our respects to their Elders past and present.This handbook has been co-designed by members of the Co-Design Living Labs Network and we acknowledge their contributions and gratitude for the time and commitment to this work. The members of the Network would like to thank Vicki and the Co-Design team at the University of Melbourne for the opportunity to co-design research from a lived-experience perspective.Welcome! We hope this journey is as enjoyable and exciting for you as it has been for us at the University of Melbourne.7

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A note on language and terminology in this HandbookPlease Cite this document as:It’s important to acknowledge that everyone experiences and expresses their life stories, day to day activities, and identities differently. In mental health research this can be complicated. Some people are comfortable with the use of the term consumer or carer to dene their experiences or roles, while other people prefer to talk about living with a mental ill-health, or having lived-experience, or lived-expertise. For other people the wording of psychological distress, mental distress or emotional distress are preferred. Some people feel strongly about not using the term illness in their explanations and sharing of their experiences. Here, we have adopted the wording of people living with ongoing distress and mental ill-health to incorporate the reference to having direct lived-experience and to acknowledge the living expertise that people in the Co-Design Living Labs Network bring. This includes referring to carers with the broader terminology of carers, family and kinship group members.The ALIVE National Centre Co-Design Living Labs Network. (2025). A handbook by and for co-designers. The ALIVE National Centre for National Mental Health Research Translation. The University of Melbourne. Melbourne, Australia.In the Co-Design Living Labs Network, members are referred to as co-designers to indicate working together collaboratively. We hope that you come to feel ownership of the Network and as members will support the development and direction of the work going forward. What we mean here is that you are not research participants, or enrolled in a study, but you are an integral, central and valued contributor. It means when we talk about co-design, we call the researchers working with us in co-design, ‘conveners’ who help to set the table to work together and guide the process and support achieving co-designed outcomes. Enjoy your foray into our Network and as always we welcome the opportunity to co-create with you. 9

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Welcome to our HandbookThanks for joining and getting involved!Hi. Welcome to our co-designers’ Handbook which has been co-created through conversations convened with co-design leads for the ALIVE National Centre’s Co-Design Living Labs Network since 2021. We are excited to share the journey. If you’re a Network member and you have got some suggestions from reading this that you would like to contribute, you are always welcome to get in touch to share that with the team. In this Handbook, you’ll nd some background to the whole Co-Design Living Labs Network including information about the Co-Lead role, the team and our Co-Design Co-Leads. You can read more about current Co-Leads in the Appendix.You’ll also nd some information about what to expect at co-design sessions, ways people engage with co-design online or face to face, and different tips and messages about co-designing together. Togetherness is an important concept within the Co-Design Living Labs Network – being together matters for support, collaborating, being creative and getting to know each other and what’s important for working with people with lived-experience in co-design and transforming mental health care in the future. 11

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Privacy and Condentiality StatementCondentiality of Stories: Your stories, experiences, and contributions shared during the co-design process are treated with the utmost condentiality.Co-design is about meeting together with other members. Some people may already know each other, while others are meeting for the rst time. Most of our co-design happens online, with the occasional in-person meetings. We try to keep our screens on during online sessions, as it helps us stay connected and engaged with each other.Anonymity:Your name and identifying details will not be associated with your stories without your explicit consent. We respect your right to remain anonymous if you choose not to share personal details or identiers in your stories.13

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Frequently Asked QuestionsThis page can be used as a quick reference to guide any questions you may have about the Co-Design Living Labs Network or about this Co-Designer Handbook.What is the Co-Design Living Labs Network? It is a network within the ALIVE National Centre for Mental Health Research Translation that brings people together from community, industries, government and research to co-design together. The Network is based on the Co-Design Living Labs Program which was developed in 2017 by the Mental Health Research team at the University of Melbourne. The Network operates with an experience co-design framework that centres lived-experience. Network membership comprises more than 1900 people with lived-experience of mental ill-health and a smaller number of carer, family and kinship group members.Who created this Handbook?The Handbook has been co-created with Network members through conversations with Co-Design Living Labs Network Co-Leads since 2021.What is this Handbook for?In this Handbook you will nd information about the Co-Design Living Labs Network and how it began. You will also nd information about what to expect at the co-design sessions and tips about co-designing together. This handbook is made to give people an overview of our work, how we began and how you might co-design with us.What will the Co-Design be about?A co-design session might be focused on:• Collaborating on a research project development and materials;• Co-designing new health processes;• Co-producing methods to embed research outcomes into policy and practice;• Testing out technologies, new interventions;• Building capabilities for co-design;• Developing and supporting co-researcher models.15

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WHO ISINVOLVED“To be able to participate was important to me, as it gave me the chance to give feedback into an area of health research where I believe my “lived experience” may be able to help people in the future.”– Co-designer with lived-experience of mental ill-health“The co-design sessions are important to feel a part of a team all working together to achieve better outcomes for all of us dealing with mental illness. It helps to overcome the stigma I still feel when mentioning my mental illness. Being in groups of people with shared experiences is very comforting in opening up discussions.”– Co-designer with lived-experience of mental ill-health

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Who is involved in the Co-Design Living Labs Network?Why this co-created handbook?“Participation in the Co-design Living Labs Program gives meaning to my journey. It gives me a voice and the hope that my contribution may: inform research; inuence attitudes to health and wellbeing; change treatment models; assist policy makers; ease stigma and change community attitudes; cause medical professionals to consider their approach; and ease pain and provide the best quality life for all. (Not in this particular order.) Put simply, participation allows me to be heard and to feel that I count.”– Co-designer with lived experience of mental ill healthAs we go national with the Co-Design Living Labs Network across universities in Australia, we will have new members joining and we will also continue to invite people from our research studies in the University of Melbourne too. NSWNSWSASAWAWATASTASVIC92%VIC92%ACTACTQLDQLDNTNT17

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OBJECTIVES“This too shall pass”This quote relates to the temporal nature of all emotions. It helps with the difcult ones.– By Dani, Past Co-Design Co-Lead“I went along with an open mind, really interesting, more of an insight into what goes on, it was interesting to hear from different people who have similar problems, but come from totally different backgrounds, yet we all have similar problems. And knowing that you’re sort of not in isolation which can sometimes be a bit of a problem when you get down and out, you can feel like you’re the only one in the world but you’re not.”– Co-designer with lived-experience of mental ill-health

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ObjectivesThe specic objectives of this Handbook by and for co-designers is to:• Share the Co-Design Living Labs story with you all• Provide some orientation for new members (and existing ones!)• Share tips and what to expect in co-designCo-Design Leads have said that this Handbook is best as a living document – we want it to continue to be adapted and updated by Co-Design Living Labs Network members over time – just like the Living Labs model.You are always welcome to make new suggestions or identify an area that you think could be covered and share your views to be included in the Handbook. Contact us (alive-codesign@unimelb.edu.au) to share something. If you are still thinking about taking part in a co-design session, on the next page we have shared what some of our co-designers have said about their experiences. From here you’ll nd some helpful tips and guides from our current Co-Design Leads and members. There are also some inspiring quotes shared by Co-Design Leads and members spread throughout the Handbook that help them through difcult times.Now you have a bit of an idea about what the Network is all about, we will introduce some of the advice and tips our Co-Design Leads have shared so far….19

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How do the Co-Design Living Labs work? The Co-Design Living Labs bring people together from community, industry, government and research and use experienced co-design methods to:• Collaborate on research project development and materials;• Co-design new health models, systems and processes for primary care;• Co-produce methods to embed research outcomes into policy and practice;• Test out prototypes, technologies, new interventions and pilot;• Build sector capabilities for co-design;• Develop and support co-researcher models.We use an ‘opt in’ approach where participants are invited to be part of a database and are sent information about opportunities to participate in co-design for research design to translation. Participants can choose what they participate in, they can take part one year and take a break the next, and are always reimbursed for their time. Here is a diagram of the Co-Design Living Labs journey that highlights different co-design activities we undertake.In PersonEnd to endlived-experiencedriven researchdesign totranslation Co-Design Living Labs ModelCo-Design Living Labs ModelPrioritySettingSharing &TranslationIdeation forCo-DesignCo-researcherrolesDesigning Modelsof Care / Interventions /Services / TechnologyMaking andTesting Prototypes& InnovationsVirtual21

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An example of priority settingPriority setting is about ensuring that the priorities of people who are most impacted by the focus of co-design are front and centre. It is also about ensuring priorities within experiences shape what is co-designed. Priority setting activities can vary and include understanding priorities about people’s experiences before coming together to co-design. For this kind of exploration, we might use a method such as photo interviewing where co-designers take a photo to represent their views. Photos can then be used to provide different insights to experiences. In this example we asked co-designers to share what was important to them for a National Mental Health Research Centre. We used an email dialogue approach to gather views from co-designers. There were 115 people who shared views. We then identied common themes or touchpoints from people’s contributions. These touchpoints and themes shaped our vision for the ALIVE National Centre for Mental Health Research Translation pathways. NICKwwwEARLIER IDENTIFICATIONACCESSIBILITYEarly detectionPreventionTARGETEDRELEVANTTailored physical-mentalhealthTechnological solutionsSELF-MONITORING & MANAGEMENTEMPOWERINGInformation sharingTracking & MonitoringCo-designRE-ORIENTATIONCONNECTEDAccessible to people withlived-experienceNick believes that itÕs important thatthe national centre has links withmultidisciplinary professionals andresearchers.Nick sees that the Lived-Experience Collective has a social media page,a secure web platform with a forum and an interactive app for members. They log in and start a chat with one of their peers from a co-design session Nick was involved in.Nick has wanted to work withdiverse people to explore how tosupport peers to stop smoking; just as they have, Nick wants toimprove overall mental and physicalhealth and bring these together.Nick feels like they, and theco-design group they were involved inare making a difference because thenetworks available through the ALIVENational Centre are linked toadvocacy organisations.Nick provides feedback and interactswith peers via the Lived-ExperienceCollective app about the nextresearch priority setting activities.Nick is looking forward tothe next co-design session which will be abouttailoring interventions for improving physicalhealth for people like him. Nick knows how importantit is to have combined mental and physical,and social health approaches.23

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An example of ideation for co-designBelow is an example of an ideation session for a project with carers who had participated in an online support program. The co-design objective was to explore potential improvements that could be made to the program. Co-designers were asked to explore interactivity within the groups, and the type of language they would use to describe the program. Co-designers were rst reminded of the program’s content and focus areas through a video ‘play back’ board. This was to support content recollection and recognition of topic areas within the online program meetings. The conveners facilitated discussion as the sessions were played back and comments and ideas that related to increasing interactivity were added to digital post-it notes and the session playbacks. This was completed together as a group.25

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An example of Co-Designing a Model of CareBelow is an example of an activity with co-designers who were involved in a co-designing new model of care. The co-design objective was to understand what was important in a new digital service model for people with complex mental ill-health experiences. The example image below shows a card sorting activity that was used to understand what was important to people. The group worked together to move the green cards (preliminary service concepts) underneath the brown cards (preliminary service structure). The group was then asked to indicate the three brown cards that they valued the most. These votes are represented by the yellow dots. Through undergoing this process with a number of different participant groups, the key service concepts and structure for the service became apparent. A number of key aspects that were viewed as mechanisms of action (that is, what is needed to make this model successful and lead to the greatest benets and outcomes) were also identied through this process. These were concepts that the groups thought t across the whole service design and underpinned the entire service. These later developed into the service values within the nal model.27

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What to expect when attending a session The main parts to attending a session are feeling prepared personally, considering the technology (if attending online) and feeling safe in the co-design space.Prior to the session• When people sign up to attend a co-design session, they are sent a preparatory questionnaire prior to the workshop (see appendix). The questionnaire has been developed by previous co-designers who have shared their own preferences around what might be helpful to ask before sessions. By asking co-designers about any additional needs in advance, we can prepare and ensure your needs have been considered and addressed. We have a specic version of the questionnaire which is sent to co-designers who identify as being from Aboriginal or Torres Strait Islander communities. This has been co-designed with the specic needs of co-designers from these backgrounds in mind. • An agenda of the topics to be discussed in a workshop and a co-design objective is sent in advance so that co-designers can feel prepared. Any reading for the workshop or in between workshops is also sent in advance with as much notice as possible. 29

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Getting started in the sessionBy Tricia, Co-Design Co-Lead | Creating safety and a welcoming environmentThe convener of the workshop provides a safe space for expressing views and experiences. • At the beginning of the session facilitators provide an Acknowledgement of Country prior to the session commencement. Facilitators include the Aboriginal name of the ‘country’ where they are joining the group from in their online name label (if the workshop is online). Co-designers are invited to share where they are joining from with the group. • A culture of safety is fostered within the session by talking about principles of participation (see Attachment Working Together Agreements). These lay foundations for listening respectfully and working collaboratively. This is solidied by the completion of a matrix for group agreement at commencement of sessions that has been designed purposefully for group practices by Atkins et al. (2019). The convenor of the workshop reiterates that all perspectives are valued and will contribute to research outcomes.Other important points to note during the session:• Time efciency in the co-design sessions is important and the convenor will be mindful about sharing time together and keeping people on track. • Sometimes feelings come up when you don’t expect it. If feelings come up for you during a session, it is okay. Co-designers can always have a break when they need to or have a de-brief with a convenor. • The aim of the workshop is to produce for difference, share differences in viewpoints and create resources that are alternative to the status quo.• When attending a workshop, you are going to be asked about information that leads to an outcome or direction - you might need to give feedback or comment on something after the session. There is no pressure to contribute if you don’t have time. 31

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WHATTO PREPARE“Up until being involved in the Living Labs workshops I had only understood what my situation is and how my conditions impact me... I am also incredibly lucky to have internet access and prociency in using online aids and services. It seems that not everyone is so lucky or their anxiety may not allow them to seek adequate assistance. It also made me understand that there is no one size ts all in how we can approach the idea of getting services to the people that need them.The workshops I have been involved in allowed me to be a voice for the experiences that I see each day. It is always challenging to have an honest and open conversation especially when in a male dominated workforce. These experiences help me to inform the workshops as to what may be required for these areas. Having people with lived experience inform programs that can support is a crucial part of making sure the right services are being developed and implemented where they are required and where they will have the most impact. I have enjoyed attending and engaging in safe, open conversation and look forward to being involved in future programs.”– Co-designer with lived-experience of mental ill-health

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What could help to prepare you for coming to a session?Feeling prepared for a co-design session can be a different feeling for everyone. Some people may just simply need to know the day and time they need to attend, while others may need to spend time preparing in other ways.“What enables me to participate and not feel hassled/pressured is the regular scheduling, the communications as time for a session approaches, and having an idea of the agenda. As a carer, I’m used to being busy, and that is always more manageable if the timing is clear, the communication is good and the purpose/agenda is known” - Tricia, Co-Design Co-LeadWe have included some strategies that help us prepare for sessions which might be helpful for others. We can continue to build on these strategies over time as our Network grows. You can share anything you nd helpful with us too! 33

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Online Meeting EtiquetteBy Jarrad, Past Co-Design Co-LeadTo make sure this online session is run as best it can, we ask you to take a few moments to read through these tips for attending an online meeting. Specic examples for using different online software programs are included in the Appendix. We have found that meeting virtually is an effective way of carrying out co-design. Connecting online has also allowed people from rural and regional areas to be part of the co-design process.Name/Pronouns:Your name hereYour name hereRaising your hand:If you want to ask a question while someone else is speaking, please use the raise your hand function. To do so, click on the Reactions buttonat the bottom of the page, then selectRaise Hand.Once your question has been answered, you can lower your hand by again clicking the Reactions button and selecting Lower Hand. Keeping Your Video OnWe ask that you keep your video on during discussions. You can check if your video is on by clicking either Start Video or Stop Video at the bottom left of the screen.If at any stage, you would prefer to turn your video off please let the convenor know by writing a message in the chat. To access the chat function, click the Chat button at the bottom of your screen.Lighting:Make sure there is enough lighting when you set up your computer/tablet/phone. It is best to sit near a light source, either window or electric light, so all participants can clearly see each other. Using the Mute function: We ask that you conduct these sessions in a quiet place, but sometimes noise is inevitable, especially when living and working with others. If you need to mute yourself, for whatever reason during the session, click the Mute button on the bottom of your screen. A red line willindicate you are muted.35

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SELF-CARE“Being a member of the carer co-design group allows me to try to make a difference by expressing the barriers we experienced for decades to get help for someone we love after diagnosis of a serious, lifelong mental illness. Hopefully my contribution can improve the journey and support services available for loved-ones towards better outcomes. For me, this process has facilitated open and honest discussions, respectful sharing of ideas and a format for hope and change to mental health services in Australia. Talking with key academics and researchers who can guide government policy and funding into areas that our consumers and carers feel are important to facilitate worthwhile support and programs for recovery and well-being.”– Co-designer with lived-experience of caring for someone with mental ill-health

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Self-care strategies By Nargis, Co-Design Co-LeadCo-designers shared the following things they’ve learned from being engaged in activities and the program over the years. Co-designers said, when attending a session, it is important to look after yourself rst. Self care means slowing down and looking after ourselves a little bit more. Having a designated time before and after a session can be helpful to reect and allow yourself time to have a mental break. This can include preparing some strategies for the session and using some strategies for afterwards. Self care should be emphasised BEFORE a co-design session: a walk/exercise beforehand can go a long way. Also, sometimes a hot drink can make people feel too ‘cosy’ and tired. Whereas a cold drink, such as an iced coffee or smoothie can really give an energy boost and help lower fatigue.“We can’t help everyone, but everyone can help someone”- John Lennon(chosen by a Co-Design Living Labs member as a way of describing what the program means to them)These tips were provided by Nargis in one of the conversation groups to co-create this handbook. Sometimes it’s good to think about what you need personally for self care during a session, some ideas are:• Use a dget toy• Wear a weighted blanket • Have a warm beverage with you • Sit in a comfortable seat• Have water with you • Step away and take a break if you need to37

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Self care is as important following a co-design session – sometimes the conversations we have and the activities we have worked in stay with us and it can be important to think about how to wind down and relax. Ways you can check in with your well-being can include:• Journaling • Meditating • Yoga • Going for a walk• Listening to a podcast• Watching TV• Having a nutritious meal • Just sit for a while and get thoughts clear for about 10 or 15 mins• Reaching out to a friend for support or catching up for a coffee“Remember; self care is not self indulgence, it is self preservation” - Audre Lorde39

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43Who are the current Co-Leads?What is the role of the Co-Leads?EliseGregorNargisPamTriciaSarahKrisCo-Leads play a valuable role in the ALIVE National Centre for Mental Health Research Translation. The Co-Lead roles within the ALIVE National Co-Design Living Labs Network are held by people with personal and direct experiences of living with mental ill-health and ongoing distress, and/or as carer, family and kinship group members. People who have a current or past history of lived-experience/caring and who have an interest in advancing co-design and mental health lived-experience research may engage in this Co-Lead role.The Co-Lead roles ensure that lived-experience perspectives are strengthened in all activities and that the Co-Design Living Labs Network is led, by and with its members, to grow and ourish.AmitSamBrentonTomCia AliRose

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OURBEGINNINGS“My involvement with Co-design Living Labs has given me an opportunity to share my experiences with others who have had similar times in their life where everything wasn’t as “rosy” as it should be. As a group, we have discussed what worked and what we considered could be improved in the treatment of mental health. It has been a wonderful opportunity to get to know many people from different walks of life and we have had the chance to share our stories and opinions in a safe and caring environment. Mental Health is a difcult problem insofar as there isn’t a physical sign such as a rash or bruise to show you are suffering. People often hide their problem for fear of being labelled.”– Co-designer with lived-experience of mental ill-health

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Our beginnings - The Co-Design Living Labs ProgramBy Victoria Palmer,Head and Founder of the Co-Design Living Labs NetworkThis is one of our member’s feedback when we asked for people to share their experiences (it might be yours even!) of being a part of this work. I started with this quote because when the Program was set up in 2017 we intentionally wanted to create a exible approach to foster participation in any way possible. It’s warming to hear that people do feel that sense of being able to participate in any way about a broad range of topics.The world has somewhat changed since we started out and while some parts of our Co-Design Living Labs Program have stayed the same, many have changed too. Some of the changes reect new ways of thinking in research and, we hope, greater ways of engaging in conversations with people in the community.I hope this Co-Designer’s Handbook which has been co-created by and for co-designers to work with co-designers, shares a bit of our story for you as a member. You might nd it interesting to learn about the Program a little more. Our goal in putting it together is that is helps future members to feel their own sense of belonging and orientation to what we do.For me though, what I connect most with in this quote is that I too love ‘the idea of Living Labs’ – I realise though it is not a term widely used and people may wonder what it is, so, let us give two explainers before we fully begin this story. “Well rstly I do love the idea of ‘Living Labs’ (LL) as it provides a very, unique way to engage people to participate in any way about a broad range of topics that mental health covers or touches.”(Co-Designer 2020)45

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So, “What’s a Living Lab”?Living Labs have a long tradition and began in the innovation sector with people seeing the benets of open structures for working together. Alongside this, there has been growing acceptance and recognition that to make something or develop a solution, involving people with direct experiences who may be future users is essential. The early work in Living Labs was largely technology focused, but there are all kinds of examples of Living Labs now in housing, health, ageing and environment.The main part of a ‘Living Lab’ is just that, living, it is about the everyday, our lives and where we live, work, learn, and play. Living Labs are about exploring and creating what’s needed together in live settings dependent on the context – for me that makes our Co-Design Living Lab an ‘anywhere-everywhere lab’. The addition of the word Co-Design to our Living Labs Program was in recognition that co-creation and collaborative processes are one part of change, but they don’t offer a guarantee of staying focused on sharing power, collaborative decision-making, being intentionally creative in what we make or valuing and honouring lived-experience. That’s where co-design comes in – it provides a way to be explicit that we honour lived-experience and always attempt to work from an experiential space through co-design methods and actions. Co-design was also important for us because in 2017 a big project called the CORE study was nished. The CORE study looked at a method called mental health experience co-design to improve psychosocial recovery in community mental health services in Victoria. In that project 287 people had been involved and a smaller group completed co-design within the services – setting up a Co-Design Living Lab meant that we could bring those experiences learned in the CORE study into this Program and have a group of people who had had experience in taking part in co-design activities.So, why the “Co-Design”Living Lab?47

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And, now a Co-Design Living Labs Network?Some people might wonder how this has all come to be a part of a Co-Design Living Labs Network. Well, back in 2020 the National Health and Medical Research Council had a funding call for the Special Initiative in Mental Health. This call was to set up a national research translation centre to improve experiences in care, outlooks and outcomes for people and in particular to address known gaps in life years due to unmet physical health needs going unaddressed. The call asked for a focus on capacity building of the next generation of mental health research leaders and multidisciplinary approaches with people with lived-experience professionals and all stakeholders to conduct implementation research.As part of our existing Co-Design Living Labs Program and the activities conducted within this (see gure on the next page) we asked co-design members what a national mental health research translation centre could look like – what would be important? What topics would be researched and what kind of involvement might people want? We did this as part of what we call priority setting which forms one of the central activities of the Co-Design Living Labs Program. In priority setting, we try to work out what’s important for people with lived-experience and carers/kinship group members to ensure that the research questions and the grant reect these.We had 115 co-designers share their answers via email to the question and these were organised by researchers into thematic areas. We then co-designed ideas for the national centre further with another 27 co-designers; some of those who took part in co-design were named as leads in the proposal to take co-design work forward. Out of this, the ALIVE National Centre was formed. As part of being funded as the national centre we can now set up the Co-Design Living Labs as a nationally focused Network. 49

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CO-DESIGNERTRAININGAWARDThe Alex McLeod Co-Designer Training Award provided support for two Co-Design Living Labs Network members to be appointed to a training position per year across 2023-2025. The aim was to foster co-design skills development, and grow the capacity within the membership base of the Co-Design Living Labs Network. The Training Award allowed co-designers to gather more experience about co-designing for service improvement and systems change and to become engaged in leading the co-design research, convening and facilitating groups, and research activities, and learning about the operations of the ALIVE National Centre Co-Design Living Labs Network.

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The Alex McLeod Co-Designer Training AwardAs part of the training award appointment we encouraged Awardees to support communication of co-design activities and updates to members of the Network, and engage with the membership base about what’s happening in the Program and Network. This Award was named in honour of our long standing co-design member, Bev Harding, whose son sadly left the world in 2021. Bev shares, “Alex was someone who had a vibrant personality and loved life, however his mental ill-health prevented him from living life to its fullest. Tragically twenty years of struggling with mental torment, and minimal professional assistance, led to his premature death in 2021 at the age of thirty four.” Bev Harding brings her own experiences of mental health needs and providing support as a family member over the course of Alex’s life and navigating this major gap in mental health services.As one of the rst members in the Co-Design Living Labs Program, 2023 marked a 20-year relationship with the University of Melbourne Program team. Bev rst joined a ten year project exploring experiences of depression and service use in 2003 (the diamond study) with the Primary Care Mental Health research team and then, joined the Co-Design Living Labs on its establishment in 2017. This Award marked an important moment in the next steps of the Co-Design Living Labs Program as it becomes a National Network in 2023 and strived to support the member base to became leaders within the Network through the National Health and Medical Research Council funded Special Initiative in Mental Health - The ALIVE National Centre for Mental Health Research Translation.The Award was one very small way for the research centre members and co-design team to honour the contributions of co-designers to the Program. Bev’s journey with the team has been long. She has been a member and then a lead in what was rst the Collaborator Hub for the burgeoning Program, to what is now a carer co-lead group for the Co-Design Living Labs National Network.The team stands alongside Bev Harding’s commitment to improve the mental health care system, to hold the large gap and space left in Bev’s life with Alex’s departure and to grow co-designer roles for implementing substantive changes in the mental health care system.51

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2023 Co-Designer Trainee Reections“I was very privileged to receive one of the Alex McLeod Co-Designer Trainee Awards for 2023. My journey has been incredibly rewarding. Not only have I been able to participate in mental health research as someone who can make a valuable contribution by having previous lived-experience, but I have also learnt a tremendous amount about co-design methods, models and processes along the way. Although my role is based online, I have especially enjoyed being able to attend the participatory podcast event for World Mental Health Month in person on October 10th. Overall, my role as a co-designer trainee has been challenging and intriguing. It has given me hope that together as a team, we can make positive changes towards the future of mental health in terms of management, treatment options and ideas that are ‘outside the box’ as well as recovery.”- Josie, 2023 Alex McLeod Co-Designer Trainee“The traineeship has been a thoroughly enjoyable and enlightening experience. Together with my fellow trainees, we have delved into the intricacies of research techniques within the Co-Design Living Labs Network, gaining profound insights into the meticulous preparation, execution, and post-codesign processes. This journey has fostered a deep appreciation for the dedication, hard work, and specialised training that our research team invests in their work. Our exploration of co-design research principles, guided by the resource “Beyond Sticky Notes” by K.A McKercher has honed our ability to prepare for co-design research effectively, considering factors like power dynamics and group facilitation. Additionally, we have acquired practical skills, including the use of tools such as Mural for online sessions. Looking ahead, our nal task involves a reective summative piece that will encapsulate our trainee journey, enabling us to consolidate our learnings and plan for the future with enthusiasm and condence.” - Gregor, 2023 Alex McLeod Co-Designer Trainee

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“The Alex McLeod Co-Designer Training Award has been a wonderful opportunity for me to explore the foundations of co-design as a person of lived-experience. I have learnt that to co-design is to deeply listen, learn and connect with those around me as well as acknowledge the thoughts and feelings that arise within me. It has taught me that we all seek trust to feel safe enough to express our thoughts and this is a key principle for co-design to ourish. This insight has extended itself in all aspects of my life; I am reminded to slow down, soften and be present with those I am with. I am reminded that we all have experiences of value and creativity, and I am reminded that when we allow space, we allow participation and growth. Over the course of the year, I have been gently challenged alongside my co-designer trainees to share and support our learning opportunities and sometimes that involved acknowledging uncomfortable feelings. We have immersed ourselves in text and research articles, participated in tutorials and training and observed co-design in its live and dynamic form with community and network members. We have contributed to building relationships with members both face to face and online with open house afternoons and check-ins. I am grateful to have learnt and achieved with such caring and supportive people that make the Co-Design Living Labs Network what it is.” - Rose, 2023 Alex McLeod Co-Designer Trainee53

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GlossaryALIVECarerCo-DesignCo-Design Living Labs CoordinatorCo-Design toolsand techniquesCollaborateConvenorCo-designerCo-produceBy Elise, Co-Design Co-Lead“The centre is a collective effort that harnesses the creative potential and research excellence of individuals, universities, primary and community care organisations to improve experiences of care and address life expectancy gaps of priority populations. We bring research, implementation and translation together.” (from https://alivenetwork.com.au/about-us/ )A person who cares for and supports a person with mental illness or distress. This includes family and kinship group members.Bringing people together who have an interest in a particular topic, to discuss and design outcomes for that topic, and to make change. A key component of co-design is about sharing power and knowledge while challenging the power imbalance between people who may traditionally have made decisions over others. The person who organises and contacts people to arrange the co-design living labs.The methods used in co-design sessions that are applied with particular intended outcomes. Work jointly on a co-design activity.A person leading the co-design session who helps to guide the process and supports achieving co-designed outcomes. A person taking part in co-design who is a member of the program. Create an outcome together using co-design.55

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Co-researchersEnd to end research processEvaluationIdeationImplementationInnovationLiving Labs“Opt in”Researchers with lived-expertise of a particular issue or condition.Research from the beginning (including designing the research and setting priorities) to the end (including translating and implementing the research ndings into practice). “The process of judging or calculating the quality, importance, amount, or value of something.” (From the Cambridge dictionary)“The process of forming ideas and images.” (From https://dictionary.apa.org/ideation)Putting the decisions into effect. In a health context this means putting the outcomes of research into practice. This can be through policies, programmes or services. “Innovation is the creation, development and implementation of a new product, process or service, with the aim of improving efciency, effectiveness or competitive advantage.” (From https://drkenhudson.com/best-way-dene-innovation/)A ‘Living Lab’ is about the everyday - our lives and where we live, work, learn, and play. Living Labs are about exploring and creating what’s needed together in live settings dependent on the context. Working together, a Living Lab offers the potential for private-public-partnerships to co-create new technologies, solutions and co-design research projects and materials.An approach where participants are invited to be part of the Co-Design Living Labs database and are sent information about opportunities to participate in co-design sessions. Participants can choose what they participate in. 56

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Power sharingPrototype development(Intervention/Apps/Tools/Technology)Research priority settingStakeholdersService UsersStudy Design and material developmentTogethernessTranslationPower sharing is a key aspect of co-design. Sharing power involves all people who are part of the co-design process being considered equal. If the power between researchers and participants (or healthcare workers and people with lived experience) is shared, this contributes to a richer experience and more genuine research outcomes. When co-designers contribute a variety of different perspectives to research and when these perspectives are valued as equal, the outcomes can be more useful to the wider community. A working draft of the nal product.Brainstorming and setting the priorities for the research. In co-design this involves working out what important for people with lived-experience and carers/kinship group members to ensure that research being conducted reects this. People who have an interest in the co-design process or service development.Someone who uses health services.Selecting the materials needed for the study.Being together through co-design where researchers and people with lived experience collaborate, support each other and be creative by co-creating knowledge about a topic.Research translation is putting research outcomes into the real world. For instance, GPs putting into practice the newest research outcomes. . 57

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Key ContactsProfessor Victoria Palmer Director, The ALIVE National Centre for Mental Health Research TranslationHead and Founder, Co-Design Living Labs NetworkT: +61 3 83444987 E: v.palmer@unimelb.edu.au Dr Jennifer Bibb Research Lead and Senior Research Fellow | Co-design Living Labs Network The ALIVE National Centre for Mental Health Research TranslationT: +61 3 8344 3651 E: bibb.jennifer@unimelb.edu.auCo-Design Living Labs T: 1800 721 513 E: alive-codesign@unimelb.edu.au The ALIVE National Centre for Mental Health Research TranslationW: https://alivenetwork.com.au/E: alive-hub@unimelb.edu.au 59

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Tips for using Zoom online software to attend a virtual meetingName/Pronouns:Your name hereYour name hereRaising your hand:If you want to ask a question while someone else is speaking, please use the raise your hand function. To do so, click on the Reactions buttonat the bottom of the page, then selectRaise Hand.Once your question has been answered, you can lower your hand by again clicking the Reactions button and selecting Lower Hand. Keeping Your Video OnWe ask that you keep your video on during discussions. You can check if your video is on by clicking either Start Video or Stop Video at the bottom left of the screen.If at any stage, you would prefer to turn your video off please let the convenor know by writing a message in the chat. To access the chat function, click the Chat button at the bottom of your screen.Lighting:Make sure there is enough lighting when you set up your computer/tablet/phone. It is best to sit near a light source, either window or electric light, so all participants can clearly see each other. Using the Mute function: We ask that you conduct these sessions in a quiet place, but sometimes noise is inevitable, especially when living and working with others. If you need to mute yourself, for whatever reason during the session, click the Mute button on the bottom of your screen. A red line willindicate you are muted.61

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PRINCIPLESIn all of the Co-Design Living Labs Network we acknowledge the traditional custodians of the lands on which we meet and pay respects to Elders past and present.This is our working together agreement for the co-design sessions that The ALIVE National Centre for Mental Health Research Translation convene (ethics approval no: 20438). These are reviewed together as a group at the start of a session and we encourage everyone to share additional principles they feel are important before we get started.These have been formulated from our establishment in 2017 and are based on an explanatory theoretical model for co-design and co-production. We have adapted these mechanisms over time - we see this as central to setting the table for co-designing together.

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Principles of participation statementThink of the eight principles/mechanisms with the following in mind, “at all times we agree to”: 1. Recognise• that we all bring lived-experience to contribute to the group, and we agree to value what you say, and always treat you with respect as co-creators.• sometimes we hold a different point of view, and we will all listen respectfully to the views all people have for sharing in the group.• acknowledge that conict happens — and that diverse points of view all deserve attention and respect.• fostering a free, but always respectful conversation. Though conict is okay, conversations should always be conducted with civility and respect, everything talked about within a meeting is treated ascondential. • that feeling safe is important, while there are different views these can be shared with consideration and sometimes we also may experience discomfort and it’s okay to talk about that.2. Dialogue• that or roles in co-design meetings are a part of a dialogue, with multiple voices and backgrounds.• accept that people will not always agree. • that we commit to valuing all points of view as part of the conversation to foster healthcare improvement where ever possible.• asking who doesn’t have a seat at the table?• noticing who is missing and doing what we can to increase diversity, access, autonomy in the group.3. Co-Operation• is collaborative. We recognise that co-design meetings are a collective effort that can make a difference.• to work together as equals and collaborators in research – knowing sometimes we might have to work on power differences as researchers and co-design members.• to work together, alongside participants to change research and inuence practice and policy using research to inform this.63

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4. Accountability• to be accountable to each other.• be transparent and open with co-designers about the outcomes of research and to value your co-productive efforts when contributed within research, service design or health care improvement studies.• to share the outcomes of research and providing opportunities for participants to engage at all stages of the research cycle.5. Mobilisation• to put what we learn, create and build in meetings into action in research and translate this to government and practice where applicable.• to acknowledge that our program works primarily work to improve healthcare design, delivery and transformation and this can take time to implement and see change in.• to acknowledge that these meetings are shaped by experiences, but we share these to help shape the research process and do not have to share our full stories in co-design meetings.6. Enactment• to use what co-design produces to change the mental health and healthcare system broadly.• to implement (as much as we can) from the outcomes of meetings in order to improve the mental health research and, as a result, the mental healthcare system.• to be collectively committed to implementation where ever possible.• to recognise that we cannot change everything that we seek to change – sometimes important changes are smaller than the bigger ones and sometimes we do not have the resources to change the big issues.7. Creativity• to creatively engage in the meetings, to use explicit use of co-design techniques, tools and activities for ideation to creation.• to producing creative and engaging ideas to be used in meetings.• to nd imaginative ways to run the meetings, so that meetings in turn spur your creativity.• to thinking creatively alongside you.

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8. Attainment• to improve research and change in mental healthcare design, delivery and improvement.• to do everything we can to improve the way research is done in Australia and around the world to honour lived-experience and collectively celebrate the strengths we all bring.• to improving the mental health system in all its forms, and at all stages of care.• to a space of co-creation, to ideate and share the things that we sometimes think are a good idea but may not be 100% possible.• to encourage people to share ideas no matter how much they think they cannot be done because by working together we might nd a way to do this—you never know?65

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Funded by the NHMRC Special Initiative in Mental Health (2021-2026) | The ALIVE National Centre Co-Design Living Lab Network | Administering Hub – The University of Melbourne | These working together agreements were ﬁrst developed as a set of principles of participation from eight mechanisms identiﬁed as forming essential ingredients to facilitate change from co-design and co-production. The principles appear in the following paper Palmer et al., 2020. The Participatory Zeitgeist: an explanatory theoretical model of change for co-design and co-production in healthcare improvement https://mh.bmj.com/content/45/3/247 and have been shared in over 100 co-design sessions to set the scene for working together and ensure safety, respect and the condition for co-design are set ahead where ever possible.Working Together Agreements(Co-DesignPrinciples)dialogueWe respect these different experiences in our today and welcome learning together and valuing our difference.cooperateBy gathering together we and co-create for change. We agree to listen together to different points of view and recognise we will not always agree 100% of the time but we agree to respect disagreement.accountableWe are for what is coproduced and agree that our space is conﬁdential and private information is not shared outside of this group.enactWe change through this gathering in how we work together, recognising power in our relationships and shared decisions, and creativeWe see this as a process and use our creativity to shape, make and share.mobiliseattainWe take what we coproduce and to implement and change.recogniseWe that everyone brings different experiences to this gathering today and that experience is a valued expertise and form of knowledge.responsibility for coproduction.

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59Funded by the NHMRC Special Initiative in Mental Health (2021-2026) | The ALIVE National Centre Co-Design Living Lab Network | Administering Hub – The University of Melbourne | These working together agreements were ﬁrst developed as a set of principles of participation from eight mechanisms identiﬁed as forming essential ingredients to facilitate change from co-design and co-production. The principles appear in the following paper Palmer et al., 2020. The Participatory Zeitgeist: an explanatory theoretical model of change for co-design and co-production in healthcare improvement https://mh.bmj.com/content/45/3/247 and have been shared in over 100 co-design sessions to set the scene for working together and ensure safety, respect and the condition for co-design are set ahead where ever possible.Working Together Agreements(Co-DesignPrinciples)dialogueWe respect these different experiences in our today and welcome learning together and valuing our difference.cooperateBy gathering together we and co-create for change. We agree to listen together to different points of view and recognise we will not always agree 100% of the time but we agree to respect disagreement.accountableWe are for what is coproduced and agree that our space is conﬁdential and private information is not shared outside of this group.enactWe change through this gathering in how we work together, recognising power in our relationships and shared decisions, and creativeWe see this as a process and use our creativity to shape, make and share.mobiliseattainWe take what we coproduce and to implement and change.recogniseWe that everyone brings different experiences to this gathering today and that experience is a valued expertise and form of knowledge.responsibility for coproduction.

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Funded by the NHMRC Special Initiative in Mental Health (2021-2026) | The ALIVE National Centre Co-Design Living Lab Network | Administering Hub – The University of Melbourne | Ethics ID: 1954103.2These questions have been adapted with permission from ‘5 Top Tips for Neurodiverse workshops’ by Adjust Services UK, Parafﬁn & See-Research (https://parafﬁn.ltd/5-top-tips-for-neurodiverse-work-shops-2/?cookie-state-change=1633379779396) | Thank you for the contributions from Co-Design Living Lab members and Centre researchers | Images credit to www.freepik.com12101211Yes pleaseWe usually use a video platform for online co-design - do you need help to download the app or for logging on ahead?No, I should be ﬁne on my ownWe'd love to hear more about why this co-design topic is of interest. Please share here:With large text printHow would you prefer us to share information ahead of meeting?In a PDF or Word documentIn black/white not colourI use a screen readerI don’t have a preferenceSharing with other people who we do not know can feel different - is there anything else to share how about we can support you during co-design sessions?STARTWould you like to share your pronouns? If so, please add these here:3Is there anything else we should know about how you identify?89Is English your ﬁrst language?YesNoIf no, do you require an interpreter in meetings?YesNoPreparing our table to work together as Co-DesignersTo make our co-design table as comfortable a space as possible, we’d love to learn a bit more about you and your needs. Please pop in some answers to these few questions.Thank you for giving your time and experiences to co-design with us. We're looking forward to meeting. Your perspectives are valued by us and will help to co-create change in the mental health care system. We value your time and you will be reimbursed for attending.Let’s get started…I use a screen reader so I might need more time to respond; I am bringing a support person to help me communicate; I am non-speaking and prefer the chat function.I can communicate verbally and through text; Other (please describe your needs)How can we best communicate with you during the session? 6457Are you comfortable with communicating . . .SpeakingUsing the video functionUsing the chat boxI need a bit of time to think about things before I contributeI am ﬁne with all of theseEveryone comes from different backgrounds. We want to ensurewe refer to you and work in ways that you are comfortable with.What name would you prefer to be called during the session?We recommend when online you just share your ﬁrst name too.Are there people who you would like to involve?(Carers, Aunty, Uncle or Health Worker)Do you have any needs that help express yourself with conﬁdence? (equipment or carers)

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Funded by the NHMRC Special Initiative in Mental Health (2021-2026) | The ALIVE National Centre Co-Design Living Lab Network | Administering Hub – The University of Melbourne | Ethics ID: 1954103.2These questions have been adapted with permission from ‘5 Top Tips for Neurodiverse workshops’ by Adjust Services UK, Parafﬁn & See-Research (https://parafﬁn.ltd/5-top-tips-for-neurodiverse-work-shops-2/?cookie-state-change=1633379779396) | Thank you for the contributions from Co-Design Living Lab members and Centre researchers | Images credit to www.freepik.comI use a screen reader so I might need more time to respond; I am bringing a support person to help me communicate; I am non-speaking and prefer the chat function.I can communicate verbally and through text; Other (please describe your needs)How can we best communicate with you during the session? START1 3254678What is your name?What is your mob?What are you from?How do you identify?Are there people who you would like to involve?(Carers, Aunty, Uncle or Health Worker)Would you like to share your pronouns?If so, please add these here:Do you have any needs that help express yourself with conﬁdence? (equipment or carers)With large text printHow would you prefer us to share information ahead of meeting?In a PDF or Word documentIn black/white not colourI use a screen readerI don’t have a preference1011Is English your ﬁrst language?NoIf no, do you require an interpreter in meetings?NoPreparing to work together as Co-DesignersTo make our co-design table as comfortable a space as possible, we’d love to learn a bit more about you and your needs. Please pop in some answers to these few questions.Thank you for giving your time and experiences to co-design with us. We're looking forward to meeting. Your perspectives are valued by us and will help to co-create change in the mental health care system. We value your time and you will be reimbursed for attending.Let’s get started…9Are you comfortable with communicating . . .SpeakingUsing the video functionUsing the chat boxI need a bit of time to think about things before I contributeI am ﬁne with all of these121413Yes pleaseWe usually use a video platform for online co-design - do you need help to download the app or for logging on ahead?No, I should be ﬁne on my ownYesYesWe'd love to hear more about why this co-design topic is of interest. Please share here:Sharing with other people who we do not know can feel different - is there anything else to share how about we can support you during co-design sessions?

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Funded by the NHMRC Special Initiative in Mental Health (2021-2026) | The ALIVE National Centre Co-Design Living Lab Network | Administering Hub – The University of Melbourne | Ethics ID: 1954103.2These questions have been adapted with permission from ‘5 Top Tips for Neurodiverse workshops’ by Adjust Services UK, Parafﬁn & See-Research (https://parafﬁn.ltd/5-top-tips-for-neurodiverse-work-shops-2/?cookie-state-change=1633379779396) | Thank you for the contributions from Co-Design Living Lab members and Centre researchers | Images credit to www.freepik.comI use a screen reader so I might need more time to respond; I am bringing a support person to help me communicate; I am non-speaking and prefer the chat function.I can communicate verbally and through text; Other (please describe your needs)How can we best communicate with you during the session? START1 3254678What is your name?What is your mob?What are you from?How do you identify?Are there people who you would like to involve?(Carers, Aunty, Uncle or Health Worker)Would you like to share your pronouns?If so, please add these here:Do you have any needs that help express yourself with conﬁdence? (equipment or carers)With large text printHow would you prefer us to share information ahead of meeting?In a PDF or Word documentIn black/white not colourI use a screen readerI don’t have a preference1011Is English your ﬁrst language?NoIf no, do you require an interpreter in meetings?NoPreparing to work together as Co-DesignersTo make our co-design table as comfortable a space as possible, we’d love to learn a bit more about you and your needs. Please pop in some answers to these few questions.Thank you for giving your time and experiences to co-design with us. We're looking forward to meeting. Your perspectives are valued by us and will help to co-create change in the mental health care system. We value your time and you will be reimbursed for attending.Let’s get started…9Are you comfortable with communicating . . .SpeakingUsing the video functionUsing the chat boxI need a bit of time to think about things before I contributeI am ﬁne with all of these121413Yes pleaseWe usually use a video platform for online co-design - do you need help to download the app or for logging on ahead?No, I should be ﬁne on my ownYesYesWe'd love to hear more about why this co-design topic is of interest. Please share here:Sharing with other people who we do not know can feel different - is there anything else to share how about we can support you during co-design sessions?

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I am a lived-experience collaborator in the ALIVE centre at the University of Melbourne. I have lived expertise of mental health for two decades and have been involved in the co-design living labs for eight years. I joined the co-design living labs in 2017, after being a participant in the CORE study at the University of Melbourne. The CORE study looked at service improvement of Mental Health services using co-design.I love the opportunity to be involved in something so much bigger than the individual. I nd it exciting to be involved in the co-design living labs because they bring lived expertise to the forefront of the discussion and decision making. People with lived expertise bring a diverse range of abilities to the co-design living labs and hopefully through the ALIVE Network, people will not just feel listened to, there will be better health outcomes for all people with lived expertise.I rst became involved with the co-design living labs program through the CORE study. At the time I had accessed the Personal Helpers and Mentors (PHaMs) program through Eastern Access Community Health (EACH). After attending several of the CORE sessions, I became aware that there was to be a follow up program called living labs. I jumped at the opportunity, as I recognized that there needed to be more input from people who identied as having a lived experience. I am passionate in advocating change within the Mental Health system. I believe that the system needs to evolve to become a more user-friendly system, as well as breaking down the stereotypes, stigmas, and exclusion, which many people with a lived experience experience. I am also interested in utilizing Indigenous knowledge to provide a more caring system in which local connection to community and surrounds can be established for people EliseGregor

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with a lived experience. People with a lived experience can often feel excluded from community due to how they are perceived by the dominant society.Although I never went through the whole Mental Health system, I did have friends who went through the system. This included being admitted and then released into a PARC facility. I also witnessed the struggles a close friend had through the private Mental Health system and visited the Melbourne clinic several times to visit him. After my recovery from my own experience, I have been working with National Disability Insurance Service (NDIS) and have had the need to visit clients in the Unit 1 Maroondah hospital and Murnong. This has given me an appreciation, as to the strengths and weaknesses of the present Mental Health system and gained knowledge from people with a lived experience. My own experience has included recovery from several traumas. These include adopted, my parents’ divorce and 10 years ago a Brain Hermitage, which led to me having to retrain and face my fears in the Academy. I would also express that I suffered from doubting my ability growing up, as I had a high achieving family member, who I did not feel able to achieve the same standard which he had set. I continue to suffer from social anxiety when placed in intimidating spaces. Usually this is when I feel inadequate to compete with others surrounding me. My permanent disability from my Acquired Brain Injury (ABI) also impacts me when I am tied, ill or trying to exercise high level cognitive activities.77

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I got involved years ago during a depression study that the university of Melbourne was conducting. I love being able to share my insights as someone with lived experience and have those contributions honoured. I have Post Traumatic Stress Disorder, Persistent Depressive Disorder and Borderline Personality Disorder.I became a carer 15 years ago when my step-daughter and her 2 children came to live with us. The children were aged 14 months and a new born. My step-daughter was struggling to stay engaged with her children and kept going out at night, doctor shopping, at the emergency department and, pretty much, leaving the children in our care. We thought she might have post-natal depression or something similar – a while later she was diagnosed with a serious, lifelong mental illness. So, with no support, just a brochure, we were looking after 2 children under 2 years old and an adult with many complex mental health needs. I reached out to a local carer support group to seek some advice and help. There was a longitudinal study being conducted by Melbourne University which was a survey on what carers’ were experiencing and needed - so I responded and that began my involvement with Melbourne University.I am fully aware of the difculties faced trying to access specialised services let alone, in a regional area. As a family, we have been on a journey through many service areas to seek support and guidance and this has also made me very conscious of the barriers facing carers while they try to help someone with a life-long mental illness to stay engaged in programs tailored to assist them. I have enjoyed being involved in this project as I have had the opportunity to share my experiences and be part of a team who are trying NargisPam

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I am retired from 35 years’ lecturing and researching in applied linguistics. My lecturing focused on sociolinguistic and linguistic underpinnings to second language acquisition; my research focused on rst language acquisition, on the adult talk addressed to young children with and without a speech delay, and its inuence on their language development. During my lecturing years, I took time off to work in developing early intervention programs for young children with special needs.I am also the wife of a small business man, and mother of two adult sons, one who is seriously disabled by cerebral palsy and Complex Trauma/PTSD. This experience has required me to become engaged in many of the mental health services offered to young adults in our region, northeast Victoria. My son has been unable to access these services without support because of the serious impairments caused by his cerebral palsy.In the course of helping my son access mental health services, I joined a co-design project to evaluate services provided by a regional mental health support service. This introduced me to co-design. While I had been accustomed to being involved with services for people with disabilities, I had never been asked even for feedback from mental health service providers. Now, I welcome the opportunity to have a conversation with other carers, to have a voice, and I feel more hopeful that there will be useful and informed changes in services.to improve support services. In particular, my focus has been recognising and highlighting the role of the people who care for and about family members with mental illnesses while also trying to navigate such a complex system of agencies.I hope my participation is useful and can continue.79Tricia

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I see this as incredibly important focus and need for our community. Mental-ill health has signicant impacts on people and those around them. I have lived with mental-ill health for a signicant amount of years, often navigating the system for myself and those I care for. I believe in early evidenced based intervention, education and timely support as the keys to improving the perception and experience people have of mental-ill health. Research is integral to this.I contribute my lived experience as a neurodivergent, transgender and queer person who manages their mental health as a routine part of life. What this means is that I have a personal understanding of what might be needed from research and services to make these communities feel understood, valued and afrmed.Beyond lived experience I also have extensive background working as a researcher myself, in sociolinguistics, psycholinguistics, child development and social health research. Currently I am studying to be a speech pathologist and also work as a disability support carer. These experiences allow me to contribute perspectives as both a service user and provider/researcher, and what information can help to bridge the two. As a researcher I understand the implications and necessity of data collection, and with my lived experience am well placed to contribute my skills to help the research be as ecologically valid as possible. I participated in a co-design meeting in March 2023 and found it a rewarding and welcoming experience. My contributions were appreciated, and I felt aligned with the guiding values of the research (to make research appropriate and useful, and services as welcoming as possible). The experience made me interested in participating further.KrisAmit

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I believe I might be able to contribute progressive, well-thought-out ideas and constructive feedback for any current developments. I have a keen interest in research and have an idea of what fellow researchers may need from me. I enjoy connecting with people, have strong communication skills, and enjoy being a part of a team environment. Making changes in the area of mental health is a passion of mine. I am currently studying Behavioural Science and my lived experience greatly inuences my view of how to help our current mental health crisis.I feel honoured to be able to use my lived experience to contribute to the development of something that may help others. I spent approx 20 years of un or misdiagnosed mental health of which large periods were self medicated with alcohol, poor food intake and forms of self harm. This, in hindsight has given the opportunity to learn from and understand what steps could have been taken or support systems that could have assisted. I have the opportunity to share my experience so hopefully others don’t have to wait until they are in their 30s until they get the support they require.I contribute, where relevant, the understanding I have gained through my personal experience of mental ill health and health care. For example, I understand what it feels like to have psychotic episodes and consequently why prescribed medication is so unappealing and is commonly resisted.My work (along with my lived experience) perhaps affords 81SamBrentonTomCia

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I was rst made aware of Alive and the Living Labs program in 2017 one morning when I was at the medical clinic I attend for my psychologist and GP appointments. I signed up that morning and for many years I participated by completing surveys.In 2019, I was at my lowest with my mental health and struggling to stay alive. I had put together a suicide kit. I was admitted to hospital after disclosing this information. I spent a week in hospital. This experience stripped me of my last remaining pieces of dignity and self-worth. It also obliterated any hope I had left for myself. I no longer felt human. Witnessing and experiencing such poor standard of care left feeling very disillusioned and angry with the health care professionals and organisations we entrust with our care when we are at our most vulnerable. There has been a toxic culture that has been allowed to grow and spread for far too long. I needed to do something to help change and restructure how people living with mental health concerns are treated. The system needs to be torn down and guttered in order for it to be rebuilt on a foundation that is a more accessible, compassionate and caring system. This is what took me from surveys into participating in the co-design process with Living Labs research. Alime unique insight into the mental health care and needs. For example, I have a deep understanding of the immense importance of group and individual therapy to deal with trauma.I would like to utilise my experience and insight to help in developing more appropriate mental health services and responses.My interest in contributing to research is totally aligned with my personal values. I have always been committed to peoples wellbeing, I believe this is demonstrated in my choice of work as a psychotherapist.

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What I love about being involved in the co-designing process with Living Labs is the sense of purpose it has given my life. Especially because I always feel like a useless waste of space due to past and present treatment and signalling. I heard ‘you are useless’ throughout my whole life, and it is how I honestly see myself. So, to be given the opportunity to be heard and to use my, at times, retraumatising experiences to create positive change for many people and to educate the health care professionals we entrust when we need assistance and when we need to be shown compassion and kindness. Sharing my lived experience voice, and contributing to positive change is not about me. I may never experience these changes. I do it for others and future generations, so they don’t have to feel fear or shame for how they are feeling. So, they can feel safe and heard when they are feeling vulnerable.I joined the Alive network following the Diamond and Core studies and shortly after was invited to apply for the Alex McLeod Co-Designer Trainee Program. My immersion into co-design involved reading, writing, reecting, observing, creating, and developing all within the support of the Co-Design Living Labs Network. My experience highlighted a journey of deep inward and outward reection that ultimately gave me a greater sense of connection and value with my peers. Having just completed the traineeship over the course of 12 months I am feeling grateful and encouraged to take the next steps. My lived experience with mental ill health as well as caring for family members and friends with mental ill health has taught me a lot about compassion, whether it be in the form of self-care or deeply listening and being with another in need. I am passionate about raising the voice of those marginalised by mental ill health and allowing a space for carers voices to be heard. I am excited to bring my insight and growth as a Co-Lead and be others of lived experience to create and move towards change within mental health.83Rose