On the 6th of November I made the biggest trip I’ve ever made (not saying much, I hadn’t left Europe before) and flew halfway around the world to Australia to visit research groups across Melbourne and Sydney. The focus of my visit was preparing for the launch of Discovering Liveability’s Lived and Living Experience Hub (which will fully launch in 2026-27, although we’re having development events all through the year). We wanted to learn as much as we possibly could about lived experience leadership and involvement from those more experienced than us, as well as sharing a bit about our plans for the upcoming years.
In this blog, I’ll share a few of my reflections on what I learned, but if you’d like to know more we will be hosting a webinar in February (details to be shared soon!) which will provide an opportunity to share what Sarah and I learned across our two international visits – and we’d love you to come along with any questions or comments that you might have.
Is there a difference between researchers with lived experience and lived experience researchers?
Throughout the conversations I had, we kept finding our way back to a conceptual question of what a lived experience researcher was. For some it was clear that there was a quite deeply felt difference between a researcher with lived experience and a lived experience researcher. The former usually defined as an academic who happens to have lived experience, and the latter a person who has entered research through a lived experience role and leads their engagement with research activities through that lived experience. For those that made this distinction, the separating of these appeared really important, particularly for ensuring that the vibrance of perspectives from outside of academia weren’t dulled. However, for others, particularly academics who had lived experience, this distinction could feel artificial, as if their lived experience were somehow being erased by their academic qualifications.
What can we do to make the university sector a welcoming place for lived experience researchers?
One way that we are trying to account for this in Discovering Liveability’s up-coming lived experience research roles, is to both recruit people who have previous experience with academia through PhD study (3 roles), and those that have not yet had the opportunity for further study (3 roles). A key consideration we are still pondering is how to encourage all forms of expertise to be equally valued and recognised in a broader system where academic qualifications are rewarded. This is particularly important when we think about the broader institution and sector that we work within. Our researchers will be integral to our research team, and so will interact with our broader university structures, will submit articles to peer-reviewed journal, and will present their work at academic conferences all of which may, or may not, have an understanding of lived experience research.
One suggestion for supporting lived experience researchers in drawing on their knowledge and skills, was to connect our researchers with experienced lived experience researchers, outside of the team, for mentorship and networking. This was also suggested as a way to prevent what was described as ‘peer drift’ where more isolated lived experience researchers could find themselves beginning to reflect institutional language and beliefs, in part because they did not have contact with others who could support them to express more critical reflections on established research practices.
Would you mind holding onto my power for me?
Another suggestion was that we shouldn’t shy away from defining our expectations of these roles, as we would in any other job role. Reflecting on the ambiguities sometimes attached to ‘peer’ or lived experience research roles, some peer researchers warned that they had found themselves feeling a little lost or confused, when they were afforded too much freedom within their role: as if them being there was enough, as a token representative of lived experience, without much to actually do.
I was really interested in this, because in many of the academic conversations that I had about lived experience leadership and involvement, the mantra I heard was that we (academic researchers) needed to give our power to peer or lived experience research colleagues. This made me reflect that disrupting familiar, established, even entrenched, workplace hierarchies is far more complicated than the simple sounding give away your power mantra. Instead, the giving away of power needs careful consideration, communication and scaffolding to enable this to be an empowering, rather than an over-whelming, experience.
These are just a few of the topics that we will be picking up in our event in February which we would love you to join us for. Please keep an eye on our social media pages for more information on how to sign up.
