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OUR MASSIVE ONLINE PUBLICCO-DESIGN PROJECTWe acknowledge the Traditional Owners of the land on which we work, and pay our respects to the Elders, past and present. The ALIVE National Centre for Mental Health Research Translation is funded by the National Health and Medical Research Council (NHMRC) Special Initiative in Mental Health grant GNT2002047.Phase 1 Consensus Statement:The Short Horizon 2023 Implementation ActionsCo-Designing Our National Roadmap for Mental Health Research Translation

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SuggestedCitationPalmer VJ, Tjung C, Coe A, Bibb J, Moorhouse J, OrcherP, Jazayeri D, Banfield M and the ALIVE National Centre Investigators. 2023. A massive online public co-design project to co-create the Phase 1 Consensus Statement – Short Horizon 2023 Implementation Actions. The ALIVE National Centre for Mental Health Research Translation: Melbourne, Australia.A Note on Language and ProcessIn the identification of priorities for mental health research, care improvement and social determinants/ issues and the implementation actions, we have preserved the language used by people with lived-experience of mental ill-health and carer, family/kinship group members who shared views in the annual priorities survey and public co-design processes.Everything in this Phase 1 Consensus Statement reflects the priorities of people with lived-experience who took part. The research team included two Lived-Experience researchers, an Aboriginal and Torres Strait Islander co-design researcher, and four interdisciplinary researchers from participatory design, visual design, music therapy and mental health primary care research.In this Consensus Statement you will see the terms consumer, consumer-carer and carer are also used. This reflects how people self-identified when they signed up to the ALIVE National-ANU Lived-Experience Annual Priorities Survey (2022). We have retained this naming convention in quotes and an overview of who took part.

First off, we’d like to say, “thanks!”Thank you for taking the time to read this and thank you especially if you were one of the 366 people who shared your mental health research priorities in the ALIVE National-ANU Annual Lived-Experience Priorities Survey 2022 or if you one of the 88 people who prioritised areas that were discussed in public co-design.The Phase 1 Consensus Statement – Short Horizon Implementation Actions brings together our public co-design with the priority-setting and prioritisation activities to outline the areas for action. These actions will result in goals for the National Roadmap for Mental Health Research Translation.The WHYThe Need for a Phase 1 Consensus StatementThe Roadmap supports the Centre's knowledge translation strategies, goals and targets. These will be updated as Aboriginal and Torres Strait Islander people and Children and Families, and more priority populations, co-design pathways in the Roadmap.

366 contributions to the 2022 Annual National Lived-Experience Priorities Survey.88 consumers, carers and those identifying as both, prioritised using emotion mapping.27 consumers, carers and those identifying as both undertook public co-design to identify implementation actions.The WHOPublic Co-Designers for the Phase 1 Consensus Statement

The ACACIA advisory group and Co-Design Living Labs Network co-leads met in October 2021 to review priorities from the ACACIA (2017/18; 300+ people priority setting work) and Co-Design Living Labs (2020; 114 people for priorities and vision for the national centre).The two groups agreed on points of connection and overlap in the priorities and the co-design leads coded the previously gathered ANU-ACACIA priorities to the ALIVE National Centre's research programs and objectives.When coding was complete, the priorities were reviewed and organised into 52 priorities across mental health research, mental health care improvement/s and social determinants of health and social issuesPeople opted in from the survey or Co-Design Living Labs Network and completed emotion mapping to identify the Touch Points (explained to the right) and the areas to direct effort for change and translational research.The HOWPublic Co-Design of the Phase 1 Consensus Statement

What would it feel like to . . .Strong Feelingswhether positive or negative show where there is shared agreement (consensus) for priorities. Negative feelingsprovide insights into where things may be held back.If we are serious about improving experiences of mental health care, then, rigorous experience co-design approaches need to underpin the transformation our mental health care system.These Consensus Statements illustrate the agreements on what matters for 115 people and the implementation actions to guide translational research and transform mental health and wellbeing through primary care and community action.Touch Pointsare the places in people’s lives and care journeys where they come in touch withservices, organisations or issues that shape experienceseither in positive, negative or uncertain ways.Emotion Mappingis a way to understand if people feel strong, mixed or uncertain, or not strong connections with an experience, or topic. People share whether the feelings are positive or negative.The WHATTouch Points to Implementation Actions

The WHATImplementation Actions to Translational Goals

MENTAL HEALTH RESEARCHLived-experience to inform all aspects of ResearchEducation of ProfessionalsPrevention of Mental Health issues in SchoolsRural and Remote Mental HealthLegal Rights

What could ALIVE National amplify?• Illustrate how this is a core ingredient for better research, service system and community outcomes• Show how experience over lifetime becomes more valuable• Demonstrate the outcomes of lived-experience research• Removal of structural biasesWhat's holding implementation back?• Ideal but difficult to achieve• No-one wants to know about it• Lived experience is seen as optional• Things are talked about for a while before being put into practice – moving in a direction but not fast enoughIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR LIVED-EXPERIENCE INALL ASPECTS OF RESEARCH• Shift the perception that lived-experience is seen as optional in research and establish pre-requisites for research teams.• Expand lived-experience voices within research and identify impacts.• Explore capability versus opportunity, establish what are the needs of researchers, partners and research workforce broadly.• Map the best practice lived-experience research models and processes.Lived-Experience inAll Aspects of Research

“”Listening to common lived-experience for some cues to feed into research (less researcher's theoretical preconceptions squeezing responses to fit a theory).(Consumer)Greater lived-experience voice in mental health research with focus on recovery journeys.(Carer)“”[More] Non-traditional and alternative ways of lived-experience knowledge / wisdom (for example art based, spirituality, unconventional measures) that are outside the box.(Consumer-Carer)“”Priorities from the ALIVE National – ANU Lived-Experience Annual Survey 2022

What could ALIVE National amplify?• Foster empathy and shared understanding• Focus on senior members of organisations• Workforce preparation and education materials• Time allocation for training for workers and advocacy for financial support to undertake educationWhat's holding implementation back?• Training in empathy for mental health professionals• Professional engagement with people with mental health needs is lacking (outside of mental health)• Stigma is a big issue for people in terms of accessibility of servicesIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR EDUCATION OF PROFESSIONALS• Support peer (lived-experience) designed and led training modules for professionals and provide evaluative data on impact.• Teaching that is “out of the box” within graduate degree courses.• All health professionals to know about and undertake training that is lived-experience developed to improve empathy.• All health professionals to undertake free training available such as ASIST/Safetalk/Mental Health 1st Aid. Explore peer alternatives too.• Address stigma within the mental health workforces and settings.• Improve framing and delivery of care.Education of Professionals

“”Educational impacts and responses for teens with mental health challenges.(Carer)Bringing general practitioners on board with alternatives.(Consumer)“”How to improve deprescribing. It seems hard to get help for reducing and stopping medication even when health status has changed.(Consumer-Carer)“”Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022

What could ALIVE National amplify?• Positive lived-experience role models for kids• Whole of school environments as an approach where schools prioritise mental health• Apps and other digital supports for teacher/staff wellbeing and information.What's holding implementation back?• More involvement of parents/families in issues• Public misconception about mental health and of what lived-experience is, and diagnosis & illness• General Practitioners are out of the loop• Not all digital supports reach people and those who might need the digital support the most• Counsellors service only a few people in schoolsIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR PREVENTION OF MENTAL HEALTH ISSUES IN SCHOOLS• Think differently about prevention–train a mate—innovations are needed.• Enliven mental health education programs in schools – currently many feel like old relationship education programs. What do young people want?• Peer workers to speak and engage with schools, grow expanded lived-experience roles.• Engage sports stars that kids look up to for role models and awareness raising.• Illustrate whole of community models for school-based prevention and the structural, social,individual impacts.• Explore digital support, such as, mobile apps, for teacher wellbeing and all staff.• Provide schools with clear links to community support and establish ways to integrate schools and services.Prevention of Mental Health Issues in Schools

“”How to better equip schools to deal with mental health issues in students.(Carer)“”Culturally responsive approaches to treatment from culturally diverse backgrounds.(Consumer-Carer)“”Increasing mental health literacy and knowledge to school students - taught using lived experience, not'if you feel sad, tell someone'.(Consumer)Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022

What could ALIVE National amplify?• More appropriately trained personnel and resources to rural and remote areas• Stigma reduction and efforts to reduce isolation• Increasing local access to services through telehealth and outreach models• Knowledge about the transportable aspects of care –increased digital accessWhat's holding implementation back?• People have to take what they can get: limited availabilityof any services• No variety of experiences and of professionals• Care is not equal between city and country –health inequities are greater for rural and remote• Services are disconnected despite a perception of small communities• Stigma is high--a culture of “it’ll be alright”IMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR RURAL AND REMOTE MENTAL HEALTH• Maintain an innovation and disruption lens.• Identify local rural and remote mental health solutions and transform service accessibility by implementing trauma-violence informed and culturally secure models.• Implement models of care that reduce isolation and stigma and discrimination.• Remove the expectation that people receiving services or support should be responsible for the navigational pathways.• Transport care to people using virtual models.• The ALIVE National Centre to have a presence in a rural location with a Centre base available.• Work alongside advocacy bodies to support increased funding allocations request, new service models and reform implementation.Rural and Remote Mental Health

Better regional mental health facilities, resources and support personnel.(Consumer)“”Translating EXISTING research and insights into changing mental health system and into widely accessible service and supports.(Consumer-Carer)“”Advocacy in rural and regional areas.(Carer)“”Priorities from the ALIVE National – ANU Lived-Experience Annual Survey 2022

What could ALIVE National amplify?• People accessing all health services have rights that should be upheld – mental ill-health does not mean the absence of autonomy.• Specific enablers such as Advance Directives are beneficial - people can use symbols or have clear actions to be taken ahead of time• Raise awareness about rights and quality of careWhat's holding implementation back?• Limited public awareness of what the rights are for people• Provision of pharmaceuticals or restrictive practices without knowledge, consent and permission• Mental health treatment orders and restraint• Centrelink requirements for verification of medical conditionsIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR LEGAL RIGHTS• Work with police force to educate on mental health and suicide prevention.• Develop implementation models to eliminate restrictive and coercive practices.• Increase awareness of human rights, privacy and legal issues in the sector and for recipients of services including families and kinship groups. For example, what does the Charter of Health Rights mean?• Create information about essential legal rights in accessible formats and share this.• Identify court support models to improve the experiences and engagement with court processes.Legal Rights

How effective are Psychiatric Treatment Orders for people with substance use comorbidity issues.(Carer)“”How consumer rights are or aren't upheld.(Consumer)“”Over sedation, over medication, no informed consent and regular violation of human rights of people seeking help.(Consumer-Carer)“”Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022

The WHATImplementation Actions to Translational Goals

MENTALHEALTH CARE IMPROVEMENTSHolistic CareManaging Signs and TriggersSuicide PreventionIncreased Peer (Lived-Experience Workforce)Treatment with less side-effects

What could ALIVE National amplify?• Mental health units to come out of the hospital to provide community options• Include physical care, it is not being addressed by the mental health system and people should be seen by a doctor as well as other providers for this• Peer (lived-experience) workforce could help• Not just a medical model pleaseWhat's holding implementation back?• You need a support worker and a coordinator,there is a lot of going back and forth• National Disability Insurance Scheme Funding is available for some but not others• Medication is too easy to prescribe, and peoplestay on this for far too long• This can be used to legitimise a biopsychosocialapproach but often is just disguised bio bio bioIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR HOLISTIC CARE• In all settings we should be addressing physical health and provide co-morbidity facilities.• Provide community options away from hospitals.• Provide alternatives to medication only approaches and demonstrate the impacts.• Intergenerational history and whole of life approach is required.• Continuity of care—connected and enduring.Holistic Care

De-medicalising distress and crisis responses, or at least reducing its medicalisation….the social underpinnings of distress.(Carer)Relationship between physical and mental health.(Consumer)Access to better nutrition for people with mental ill-health.(Consumer-Carer)””””””Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022

What could ALIVE National amplify?• Community groups and classes to educate people• It should be about keeping well - positive, getting on with your life, keeping out of hospital• Get more funding into programs like Recovery Camps• Expose people to programs to reduce the public shameWhat's holding implementation back?• Carers/families can be denied information• People know about recovery but not about relapse• Not enough focus on social and relationalIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR MANAGING SIGNS AND TRIGGERS• Peer developed guides for managing warning signs with more depth and practical tips.• Introduce conversations into schools for earlier learning about mental health signs.• Implement tools to distinguish between the complexity of needs for service provision.• Leverage technology for the younger generations to enable or support distraction.Managing Signs and Triggers

How to strengthen the role of community, clubs and other informal supports.(Carer)Learning practical skills to cope with the ups and downs.(Consumer)Reducing the triggers of mental health issues including systematic bullying.(Consumer-Carer)””””””Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022

What could ALIVE National amplify?• Peer teams with alternatives to hospital to stay with people and support them• Advertising campaign for awareness raising – more awareness is needed there is still so much stigmaWhat's holding implementation back?• Referrals are a sticking point• You hear in the media negative views about individuals—these views need to be addressed• Different ways of talking about this• Awareness and language use by everyone including professionalsIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR SUICIDE PREVENTION• Interventions in schools and target bullying.• Ongoing focus on research and intervention.• More information about the options for people.• Longer term address housing and employment issues.• Focus on trauma.• Peer-led models.Suicide Prevention

I think it's vital to find better ways of opening up discussions and improving understanding of a topic that is often accompanied by misunderstandings and prejudice. Better communication of research findings between scientists and the public is also an important aspect of this.(Consumer)””Priorities from the ALIVE National – ANU Lived-Experience Annual Survey 2022Preventative approach rather than reactionary to crisis.(Consumer-Carer)””

What could ALIVE National amplify?• The power of peer workers• Build on consumer-led innovations• Peer modelsWhat's holding implementation back?• Training not designed by peer workforce currently and placements limited• Access to peer/lived-experience workers within services• Stigma and discrimination within organisations• Limited role specifityIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR INCREASE PEER WORKFORCE (LIVED-EXPERIENCE)• Access to diverse peer (lived-experience), well-funded service models.• Expanded view of lived-experience workforce beyond the service delivery setting.• Identify the ingredients for integration.Increased Peer (Lived-Experience) Workforce

Effectiveness of peer led models of service delivery.(Carer)Lived experience led treatment centres, lived experience in senior management roles etc which can bring more empathy and kindness to treatment, especially in acute facilities.(Consumer)””””Priorities from the ALIVE National – ANU Lived-Experience Annual Survey 2022Appropriate measures to capture the outcomes of peer support.(Consumer-Carer)””

What could ALIVE National amplify?• Treatments to enhance people• Social models of care• Non-pharmacological support optionsWhat's holding implementation back?• Increased support for where there are medication side-effects• Side effects scare people both when starting and stopping medicationsIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR TREATMENTS WITH LESS SIDE EFFECTS• Identify new approaches and innovations to support the side-effects of pharmacologicaltreatments where appropriate.• Include people with lived-experience of mental-ill health especially in the areas of medication related research.• More information for health professionals to support deprescribing.Treatments with Less Side Effects

””Diagnoses www wait watch wonder over hurry to get the pbs! Many misdiagnoses.(Carer)Other ways to take medication, for example, as needed versus maintenance.(Consumer)Clinical attitudes & language re consumers, negative bias, blaming of consumers, lack of critical reflection about treatments.(Consumer-Carer)Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022””””

The WHATImplementation Actions to Translational Goals

SOCIAL DETERMINANTS/ \SOCIAL ISSUESTraumaAccessibility of ServicesFamily ViolenceStigmaHousing

What could ALIVE National amplify?• People hearing about trauma and its lifelong impacts• Understanding it is not just one thing• Trauma looks different for different groups – different for family violence for example• Being trauma informed is not the same as working directly with trauma.What's holding implementation back?• Lack of research in the area• Few therapists specialisedin trauma• Mental health research is not trauma focused• Culturally and linguistically diverse communities just miss out on appropriate services• Rushed through services that need to take time• When accessing services, the different impacts and manifestations of trauma do not come throughIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR TRAUMA• Trauma informed approaches essentialacross research, policy and practice.• More training of professionals in trauma-violence informed models.• Create accessibility to trauma servicesnearer to where people live.• Intergenerational trauma cannot be ignored.• Generate multi-faceted understanding of trauma.Trauma

”Trauma and co-morbid physical health issues.(Consumer)”Expand diagnosis and treatment away from the Diagnostic Statistical Manual.(Consumer-Carer)Childhood trauma.(Consumer-Carer)””””Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022

What could ALIVE National amplify?• Full cost-free services• Education and more pay for general practitioners• Psychology and other professions to provide more opportunities for rural and regional placementWhat's holding implementation back?• Discrimination for trans, gender diverse and culturally and linguistically diverse communities• Limited General Practitioners in rural and regional areas• General practitioners are underrated and under utilisedIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR ACCESSIBILITY OF SERVICES• Safe services and ability to respond to diversity to increase accessibility for groups where discrimination impacts more prominently.• Diverse training for health professionals.• Training within rural, regional areas for health professionals.• Explore telehealth reaches across States and Territories.• Ensure measures to develop equity of access and address wait list problems.• Tailored call lines to provide specificsupport instead of genericAccessibility of Services

”Effects of demographics on access and quality of support (especially in for people of colour and LGBTQI+ consumers.(Consumer)”Timely access to services.(Consumer-Carer)Access points and blockages to support.(Carer)Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022””””

What could ALIVE National amplify?• Surprised to see trauma as distinct from family violence but this is a positive thing• Accessibility is relevant• Creating award system for mental health leaders speaking on issues to be rewardedWhat's holding implementation back?• More knowledge about coercive control• It is so hidden• Addressing different cultural needs• Siloed service models and approaches across sectorsIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR FAMILY VIOLENCE• Services need to be provided for children as survivors• Cultural safety in services to increase accessibility.• Child specific services to address intergenerational trauma.• Wider awareness of intersecting issuesof violence in mental ill-health.Family Violence

Intersection of experiences of sexual violence and mental ill-health.(Consumer)Domestic violence effects on women + children causing difficulties in life including teen imprisonment.(Consumer-Carer)”””””Priorities from the ALIVE National – ANU Lived-ExperienceAnnual Survey 2022Violence against women and children.(Carer)”

What could ALIVE National amplify?• Sharing lived-experience• Professionals with an interest in working with mental health focus• Importance of cultural security in services• Impacts on stigma on mental ill-healthWhat's holding implementation back?• Cannot ignore professional stigma• Burn out• Professionals speaking in stigmatising ways• Internalised stigma• Structural inequities and violenceIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR STIGMA• Sharing personal lived-experience stories to reduce discrimination and stigma.• Support for health care professional burnout.• Ways for people to identify professionals who want to work with mental health specifically.• Identify models that work to reduce stigma effective and implement these within primary care.Stigma

Do not stigmatise those people who work and have families and seem to 'have it together'.(Consumer-Carer)””””Men's mental health and stigma.(Consumer)””Priorities from the ALIVE National – ANU Lived-Experience Annual Survey 2022Ways of reducing the stigma attached to mental health.(Carer)

What could ALIVE National amplify?• Homelessness is scary for people when living with mental ill-health• To feel safe and secure and protected• Reduce stigmaWhat's holding implementation back?• Feels like carers are silenced in conversations• My biggest worry is what happens when I am no longer here• Affordability of housing• No sense of urgencyIMPLEMENTATION ACTIONS FROM PUBLIC CO-DESIGN FOR HOUSING• Housing becomes a part of holistic care delivery.• Re-imagine ways to create safe and sustainable housing options.• Identify the impacts of housing insecurity on mental health and wellbeing and generate solutions.Housing

Creating socio-cultural and economic environments which sustains people holistic wellbeing. Ie: workplaces, housing, education, welfare system, addressing both physical and mental health issues together.(Consumer-Carer)””Societal causes of mental health distress, for example, insecure work and housing.(Consumer)Priorities from the ALIVE National – ANU Lived-Experience Annual Survey 2022””

What's NextYou can click on the link to sign up to help us shape The ALIVE National Centre's translation targetsThis Phase 1 Consensus Statement The Short Horizon Implementation Actions will guide research activities within the ALIVE National Centre. The Consensus Statement can be used to guide all research, policy formulation, advocacy, service design and improvement, and professional practice sector wide by:• Increasing the understanding of what people with lived-experience (including carers/family and kinship group) want in mental health care and acting on this in practice;• Developing research-responsive agendas within grant proposals, funding calls and implementation research that is centred on these priorities where people with lived-experience are decision-makers and active members of research, policy and practice teams;• Implementing and translating innovations and models of care that address the priorities of those most impacted and which move beyond single focused approaches.

https://go.unimelb.edu.au/2mas

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We acknowledge the Traditional Owners of the land on which we work, and pay our respects to the Elders, past and present. The ALIVE National Centre for Mental Health Research Translation is funded by the National Health and Medical Research Council (NHMRC) Special Initiative in Mental Health grant GNT2002047.If you have not yet seen our 2023 Annual Survey being conducted in collaboration with The International PRATO Group focused on children living with parent/s where there is mental ill-health, please click on the link or scan the bar code to contribute.These responses will inform Roadmap updates and co-designed pathways for Families and Children in 2023.