The lived experience academy

Research Background and Aims We wanted to understand how people with lived experience of mental health issues can lead research. So they can make decisions and shape research from start to finish, not just advise or give feedback but lead projects. We also wanted to learn what support people need to do this safely and with confidence. Becoming a researcher usually means going to university or doing clinical training. This is not possible for everyone. We wanted to help people become research leaders, even if they have not taken those paths. What we did We tested ideas for a Lived Experience Academy. We worked with people with a range of experiences, university researchers, local and national organisations. Together we: Looked at existing evidence using creative arts-based methods; Educated people with lived experience through an accredited university programme; Found researchers who want to work with lived experience researchers. Learned what support people need; Explored ways to help people develop their own research ideas; Held a national event; Created interactive theatre scenes based on what we found. What we found People with lived experience can lead research. This brings clear benefits for research. People need individualised support. This includes clear communication, confidence-building and practical help with employment, benefits and wellbeing. Creative and arts-based methods help people engage and see things differently. Old ideas about who is ‘in charge’ still shape behaviour. This happens even when lived experience researchers hold official leadership roles. Lots of NHS trusts, universities, health research systems, charities and funders like the Lived Experience Academy idea. What this means for future research and care When people with lived experience are supported to lead research by experienced researchers, research can be more inclusive, fair and create positive change. This could change the questions researchers ask. It could change how research happens and how services and systems change. Future research will need: Clear structures to help people move from learning to leading; Practical and emotional support; Support for people with lived experience to make real decisions and be in charge – not just give people a voice; Funding models that value lived experience leadership. Patient and Public Involvement People with lived experience were involved in every part of the project. They were leaders, fellow researchers, equal partners, coordinators and decision-makers. They shaped everything we did and developed the Lived Experience Academy model. Their involvement made the research better. They challenged old ideas and created new ways of understanding data and experience. For example, using creative methods helped us understand how power shapes research. Next Steps We want to find funding to develop the Lived Experience Academy into a national programme. This will help us: Improve our approach to lived experience-led research; Continue supporting lived experience researchers to develop their own projects; Build more partnerships with NHS trusts, community organisations and research organisations; Develop support pathways that different organisations can use. Even though lots of organisations are interested, we have not yet found funding to continue this work.