Key insights

State of the literature 

• Lived experience involvement in research has been promoted for decades: the research team identified publications promoting the value and importance of lived experience involvement in mental health research from over 20 years ago. However, there has been little change in seeing people with lived experience be active drivers and producers of research, and research that is led by people with lived and living experience is not common. 
• Most peer-reviewed literature is geographically concentrated in Australia: over 60% of the peer-reviewed literature identified was from Australia. This suggests that we have high-level skills in this area compared to other parts of the world. 
• Carer, family, supporter and kin lived experience-led research was less common: most lived experience-led research was created by people with personal lived experience of mental-ill health 
• Lived experience in research spans across many levels: including members of the community, research participants, lived and living experience researchers (with or without formal research qualifications) and those pursuing a formal research career.  

What can help promote lived experience leadership and engagement in the creation and sharing of research?  

• Establishing shared values 
• Recognising the value and importance of lived experience leadership, participation and inclusion in research 
• Recognising the importance of relationships (e.g., creating a sense of safety and trust) 
• Addressing differences in power between all members of the research team 
• Involving multiple people with diverse lived and living experiences 
• Using language and ways of doing things that are accessible and easy to understand 
• Sufficient resources and being paid appropriately  
• Being involved in decision-making and leading  
• Training and support to increase research skills 

What are the barriers to lived experience leadership and engagement in the creation and sharing of research? 

• Lack of research skills or qualifications 
• Being treated as a “service user” by academic researchers 
• Not feeling safe 
• Stigma towards people with lived and living experience, and low expectations held by others 
• Not being included as an author of published work or in sharing it 
• Not having enough influence 
• Tokenistic involvement, that is, involvement that is not meaningful 
• Conflicting points of view between people with lived and living experience and researchers 
• The demands of the research industry  
• Challenges getting the ethics committee to approve the project 
• Being left out of the ethics process 
• Not being included at all stage of the research process (e.g. defining the research problem, applying for the funding, collecting data, analysing data, sharing the findings). 

Capacity building and future opportunities:

• Inclusivity and accessibility are important: Research is often experienced as ‘unfriendly’ or ‘inaccessible’. Study materials and dissemination activities must be accessible and inclusive. Intersectionality and human rights should be considered.  
• Lived experience-led research is crucial: Co-production, co-design and participatory methods are key. There is an opportunity for building research capabilities across a wide range of research methods, including qualitative and quantitative. 
• More research is needed about supports for those with lived and living experience who are pursuing research degrees and formal careers: There is some evidence that lived experience research units and networks are helpful. 
• First Nations perspective: First Nations people who have a lived or living experience said that they value researchers who make time to create trust and recognise the importance of culturally safe practices, and the role of family and kin.  

The report made six recommendations to promote people with lived and living experience to lead, create and disseminate research:  

Each recommendation was accompanied by a primary goal, and the top five actions to actions to achieve the goal were recommended. 

Recommendation 1: Organisations are underpinned by the principle ‘Nothing about us, without us’ – Leading with lived experience 

Recommendation 2: Organisations create opportunities for people with lived experience, researchers and mental health services to work together to create effective knowledge translation 

Recommendation 3: Create opportunities for people with lived experience to be contributors and leaders at every stage of the research life-cycle 

Recommendation 4: Bring together people with lived experience and key stakeholders to improve the outcomes that matter most to consumers, carers, family and supporters 

Recommendation 5: Action to support First Nations people and communities 

Recommendation 6: Evaluate the impact of organisations that support lived experience leadership and involvement in research and dissemination