The challenges faced by those in lived experience roles

This blog post is the text of a thread originally posted on X (formerly Twitter) by @TheTealTigerUK on 30/05/2024, published on the NSUN blog with the permission of the author.

A thread of some challenges those in lived experience roles experience that we need to address and counter. (Not exhaustive).

1. We are viewed through our stigmatised patient identity which means we immediately aren’t perceived as knowledgeable or valued in research settings.

2. We have less power in the room and often are the only lived experience member in that meeting. So its important to have more than one member working from this perspective. Opportunities for peer support are essential.

3. We are expected to represent the entire population – when in fact the population may be diverse, heterogenous, and have nuanced needs. We can’t possibly know all the things when we are just one person.

4. Often we have less respect in the room – we will often be asked to speak after our senior colleagues and even introduced last even if we are a part of the core team. This shows that you devalue lived experience roles and choose to maintain existing power hierarchies.

5. Often you will not see your own privilege in the room and if you do not experience a power imbalance it is often because you are the one that holds the power in the room – so it is important to rebalance that.

6. Often lived experience contexts replicate or act as microcosms of the outside world where existing hierarchies and intersectionality operate. Often those in these roles will belong to multiple intersections experiences of oppression are magnified and refracted in this context.

7. Those in lived experience roles want to actively integrate their lived experiences into their work. It is important to not undermine their resilience but at the same time to recognise sometimes this work can be laboursome and to provide support when needed.

8. We are all different with different perspectives. We might consider ourselves service users or alternatively survivors and this shapes the perspectives we bring. We also will have varying approaches and modalities that inform our work. We are not the same or interchangeable.

9. Our authenticity as people with lived experience expertise is questioned when we become too professionalised. Or alternatively we are chaotic and too emotional so our expertise is not recognised as we are closer to our lived experiences. We are expected to be in recovery.

10. It is important to acknowledge the type of lived experience work you want us involved in. Not everything is or can be coproduction due to the parameters of the research and it is important to accurately label the type of involvement so everyone is satisfied.

11. It is essential to recognise the contributions of those in lived experience roles and where possible actively try to integrate them into solutions and implications of the research. So keep a record of ideas and additionally credit people with them.

12. Think of the value lived experience can bring to research. Lived experience can inform all types of research and we shouldn’t feel it only has space in some. Eg. neuroscience can benefit from patient perspectives on how to make going for a brain scan patient friendly.

13. People engage in research closely tied to their experiences so this can be burdensome and remind them of their own service user histories. Support such as drawing on clinical components in research supervision can be helpful. Signposting to external support is also key.

14. These are just some examples of issues and solutions. There are plenty more I haven’t articulated. The lived experience field needs more understanding of the value it can bring, but also to understand and name the challenges people experience so they can be supported. End.

If you’re interested in reading more about the experiences of people in lived experience roles/doing what gets called “Lived Experience Leadership”, you may want to have a look at the following reports: