Authors: Jo River, Brett Bellingham, Holly Kemp, Katherine Boydell, Kate Gill, Sophie Isobel, Mark Goodhew, Zoe Cunningham, Jo Farmer, Michael Burge, Melissa Pietzner
Event: 2022 TheMHS Conference
Subject: co-design, lived experience, research
Type of resource: Conference Presentations and Papers
Abstract: LEAD PRESENTATION: Raising the Bar: Making co-production and substantive co-design the 'new normal' in mental health/AOD research
Jo River, Brett Bellingham, Holly Kemp, Katherine Boydell, Kate Gill, Sophie Isobel, Mark Goodhew
Background: Although lead agencies, Consumer and Peer movements emphasise the need for high-level research participation in mental health and alcohol and other drug (AOD) research, evidence suggests that people with lived experience still tend to be recruited as subjects rather than active agents in research or are consulted in ad hoc and tokenistic ways. However, to date, few studies have explored how to get from exclusion and tokenism to high-level research participation.
Method: We present a qualitative evaluation of a co-produced model of research partnership known as Raising the Bar, which was piloted between 2021-2022. The model included deliberate establishment of six co-production and co-design research teams involving 14 lived experience researchers and 14 'conventional' mental health/AOD researchers from clinical, community and academic settings. Teams were provided with training in the theory of participatory research; team facilitation and mentoring to put theory into practice; and a peer-led co-learning space. The experiences of nine of the participants were qualitatively explored, including their perceptions of the value and impact of the Raising the Bar model for enhancing their knowledge, skills, and capacity to successfully partner in mental health and AOD research.
Results: Findings suggest that the Raising the Bar model was effective in promoting high-level research partnerships between lived experience and conventional researchers. Theoretical elements of the model set the bar high from the outset, supporting research teams to address inconsistencies in knowledge about participatory research. The opportunity to put theory into practice enabled researchers to confidently engage in co-production and co-design research and produce diverse research outputs and outcomes. The peer co-learning space was considered vital for supporting lived experience researchers to ‘come out’ and work from a lived experience position in a professional setting. Participants also indicated challenges in navigating system pressures and offered suggestions for raising the bar higher in future iterations of the Raising the Bar model.
Conclusions: The findings from this study indicate that the Raising the Bar model supported high-level research participation and promoted relational resilience in research teams of lived experience and conventional researchers.
NOTE: This co-production project supported some of the research projects being presented in the Thursday session: S42: LEAD & PANEL PRESENTATIONS: Evidence Into Practice (Co-Production).
LEAD PRESENTATION: Establishing a new mental health consumer representative peak in Queensland – lessons and reflections
Zoe Cunningham, Jo Farmer, Michael Burge, Melissa Pietzner
In this paper we will share lessons from the establishment of a new mental health consumer representative peak in Queensland, providing insights for government, services and statutory agencies looking to embed lived experience leadership into the development of policy. We will draw on the lessons from the lived experience-led co-evaluation of the project to also demonstrate how to support consumer leadership in the evaluation and learning processes.
In February 2020, Queensland Health committed to funding the establishment of a new state mental health consumer peak body (Peak) to provide policy advice and system advocacy that represents the common interests of mental health consumers of all ages across Queensland. It asked the Queensland Mental Health Commission (the Commission) to manage the implementation of this project.
The Commission recruited a lived experience project team to manage all aspects of establishment of the Peak. This was a new experience for the Commission in employing people that identify with a lived experience to drive policy, rather than the delivery of services. The project was governed by a project steering committee (Committee) co-chaired by a person with lived experience and the Queensland Mental Health Commissioner. The Committee of 12 members included seven consumers.
The Peak was registered as Mental Health Lived Experience Peak Queensland (MHLEPQ) in July 2021. It is an independent company, with charitable status, governed by seven board members (five has a lived experience) and a CEO with lived experience. In the short term, the Commission continues to support the MHLEPQ as an auspice body with the aim of assisting the organisation to have a direct standalone contract with Queensland Health.
A key focus in establishing the Peak was using co-design principles and embedding lived experience from the outset. This included having a consumer project team, consumer project leadership and advisory, and to undertake a lived experience-led evaluation.
To support learning, the Commission engaged Jo Farmer, a consumer evaluator. The purpose of the evaluation was to identify strengths of the project and areas of improvement, and to consider how best to implement lived experience led activities in the Commission and the sector in the future.
Jo utilised a co-evaluation approach, working with consumers involved in the project to identify the key evaluation questions and approaches to answering them. Jo and her team undertook data collection with the Committee and supported the group to engage in the data analysis and development of recommendations.
Through this process, the evaluation has provided lessons for the Commission on how to apply co-design and lived experience leadership principles effectively in policy design (as different from program and service design). This involves consideration of how to ensure consumer representation throughout a project, particularly when delivering a project across rural and remote locations within Queensland and recognising its diverse communities.
A central focus of the evaluation was on enabling power sharing between non-consumer entities and consumers. This has long presented a challenge for government and statutory agencies, but the evaluation suggests there are things that support power sharing, including lived experience workforce, appropriate governance structures, clear expectations setting and communications, and a trauma-informed, strengths-based commitment by all involved.
While many of the challenges of establishing the peak were unique to the Queensland context, the project has wide-ranging implications for governments and services looking to further embed lived experience in their work.
This symposium will use short vignettes from the Queensland Peak establishment project to draw out different parts of the journey for others working to embed lived experience leadership in their services and agencies.