There is no doubt that providing a seat at the table for people with lived experience during the initial design of early psychosis research makes that research more relevant and effective. However, it’s easier said than done.
At the AEPCC Forum in November last year nearly 100 people with lived experience, researchers and clinicians gathered to identify the barriers to this inclusion.
Barriers included:
- Power imbalance
- Safety and support
- Social stigma and isolation
- Structural challenges
- Adequacy
- Financial support
- Practical support
- Access to opportunities
- Communication and transparency
Attendees developed potential solutions to these barriers, and we are excited to be transforming these ideas into tangible outputs.
Our initial actions will include:
- Publishing a glossary on our website to support shared understanding and language between researchers and people with lived experience.
- Drafting a letter to ethics committees advocating for more inclusive research practices.
- Creating a suite of resources for organisations and individuals, available for download and distribution.
Long-term actions will include:
- Developing an online training program for clinicians, researchers, and the lived experience community. This training will equip people with lived experience to participate in the design of research. The training will also provide researchers and clinicians with guidelines on how to involve people with lived experience in the design of research and create a respectful and safe environment for them.
These are just the first steps in our ongoing commitment to driving meaningful change around lived experience involvement in the design of research. We look forward to sharing more updates as this work progresses.
In the meantime, check out our Instagram account for the lived experience community, @psychosis_understood, to see videos we recorded at the forum. There are still more videos to come so make sure you follow our account.
