Reflections on working with the Lived Experience Advisory Group
In this blog, I reflect on our first full year of working with the Lived Experience Advisory Group (LEAG).
Back in January 2025, Survivors Voices selected thirteen people to be a part of our LEAG. A year later, twelve people are still on board. LEAG members have been extremely committed to the project, attended most meetings and had views on a wide range of project activities and plans.
The first LEAG was in Feb 2025 and it was all about safety, comfort, getting to know one another and an introduction to the research. The LEAG meetings that followed were really about getting familiar with our research methods. Over three meetings, Adeline and Baljit shared lots of information about ethnography and what it was like to immerse themselves as researchers in participants’ lives through observation, interviews, and field notes (Adeline writes more about this in this issue of the newsletter). LEAG members put forward ideas about recruitment and fieldwork.
At our two-day Network Event at the end of April, LEAG members met other advisers (academics and practitioners). Afterwards, the LEAG fed back on what worked for them in terms of the talks and workshops and what we could improve on in the future. In particular, survivors wanted more time to mix with others on the project, as well as more grounding exercises and break out spaces.
The next LEAG looked at what it might mean to be part of wider thinking with other research and activist projects about a survivors’ archive, and whether the LEAG want to co-produce an exhibition to celebrate survivors’ histories. Archives currently have politicians and powerful people’s stories but not many survivor testimonies.
An Archive of Resistance Exhibition was an idea that had generated lots of joy at the May network events, but thoughts and feelings were mixed at this subsequent meeting: excitement was mixed with confusion about purpose and some fears about voyeurism, survivor safety, and accessibility. We continue to discuss with Survivors Voices and the LEAG what our public engagement strategy should look like and how LEAG members will be involved.
In Autumn 2025, oral history recruitment was discussed, including challenging ethical questions, for example, the visibility of oral histories. We discuss the ethics of care in research (vulnerability vs the right to choose to take part) and also how we might reach a diverse cohort.
Our Jan 2026 LEAG was all about taking stock of what we’ve done – successes and challenges – and looking forward to what next.
Keeping the LEAG informed and involved
One of the LEAG’s suggestions during the year was to provide more detailed information about progress on the research itself. In response, we started an informal Research Drop Ins every second month which is bringing lots of insights.
We introduced a written update on research sent out every two months.
The LEAG also suggested smaller working groups and different constellations of LEAG members have joined to discuss ethnographic fieldwork interviews, produce this issue of the newsletter and help us to recruit a diverse group of survivors for the oral histories (especially people from Black British, Black Caribbean and Black African communities).
How was it?
The LEAG is a very big group, and its members bring a rich and wide-ranging experiences and knowledge to the table. But it has taken some time to get to know each other. Members of the LEAG know a lot about health and social sciences research, but very few were familiar with the methods of ethnography or oral history prior to becoming involved, and it has taken time too for everyone to get closer to a common understanding.
We all make assumptions about each other. Some may be right, some may be wrong. Doing work in small groups is helping to build trust and understanding of each other’s intentions and values. I am very grateful for the commitment, kindness and brain power of the LEAG. Doing things together can be complicated and uncomfortable at times, but I do feel that we are travelling this road together.
