From lived realities to virtual reality: the importance of including lived experience in our research

Mental health researchers are increasingly committed to creating knowledge about psychological conditions alongside the people who experience them. The recognition that there are many ways of knowing about a subject has led to a greater value being placed upon the expertise gained by subjective experience, and an appreciation that this expertise doesn’t have to sit in opposition to more objective or scientific ways of uncovering knowledge.

Our Virtual Compassion project (VRCom) has aimed to embrace the knowledge and skills of people with lived experience from the start. Working in partnership with the mental health charity Mind, lived experience advisors have worked on many aspects of the project, such as taking the lead in designing and running focus groups with a broader range of people who have experience of depression.

This blog post, however, is less about what those in lived experience roles have actually done in the project - we hope that this will become evident through our published research in time! The focus here is more on why the inclusion of lived experience is so important to us as a team.

Too often, people with mental health problems, such as depression, are given explanations about the nature of their condition and options for their treatment that are rigid and constraining. These can leave little room for individual preferences and choice, or do not accommodate other experiences people may have which are relevant, if not "typical”.

In my own experience as somebody with multiple mental health problems, including experience of depression, I have found this inflexibility in treatment has led to me being pushed through the only options available to me. These haven’t always been particularly helpful or accessible to me and have even left me feeling worse than before treatment.

It has been refreshing, then, to contribute to a project which privileges the views of those lived experience in the very design of the treatments that people like them may be able to receive in the future. Rather than imposing upon people, we have been able to “create-with”. The hope is that, like in my own experience, people having a say in the treatment available to them, and being offered choices along the way about how it is delivered, will make it more likely to be effective.

Whilst the benefits of co-producing research and clinical interventions are clear, that doesn’t mean that it is easy, especially considering the diverse range of experiences and backgrounds amongst people who may experience depression. Combine this with rapidly developing technologies and the fact that sharing power with patients and members of the public is a relatively new development for many academic institutions, then there are bound to be bumps in the road. These bumps are all important for organisational learning, and coming together from disparate identities with a shared concern for the focus of research is about learning to work together.

It is important to remember that co-production is not a one-off event, but a process that needs to be embedded across research projects, ensuring that the ongoing evaluation and development of knowledge is in the hands of those who will ultimately benefit from innovation. This is something we have been aiming to do in our work, and we look forward to being able to share outcomes which are meaningfully different for having lived experience included in our research.