Steve Sharman, part of the organizing committee of the Current Advances in Gambling Research conference and former SSA fellow, talks about the importance of including experts by experience when organising conferences.
Academic conferences often follow the same pattern; big name keynotes, shorter symposia of themed research talks and perhaps poster presentations. This all interspersed by coffee breaks and the chance to catch up with real people who are amazingly, more than a floating head on a zoom screen.
Our conference, Current Advances in Gambling Research (CAGR), in part funded by the SSA and hosted in 2022 in Cardiff, sought to add something new to this structure. We did this by including a session focused exclusively on the lived experience of gambling harm, featuring only the voices of those who have experienced harm.
It starts in the planning
Enthused and excited at this novel approach to academic conferencing, we got 15 minutes into the first planning discussion before realising the meeting had no lived experience voices present. So, we promptly ended the meeting, threw everything out the window and went right back to the virtual drawing board, this time including lived experience right from the start.
The result was a conference session entirely curated and presented by people with lived experience of gambling harm.
“One of the criticisms sometimes levelled at researchers who recruit lived experience practitioners into research is that there is a distinct lack of aftercare, once the individual has made their contribution.”
To encourage participation, we put a call out on twitter; do you want to be part of our conference? All those who responded were invited to a zoom meeting where, alongside a flurry of emails, the group decided who would take on what role. Some individuals took up a role on the advisory board, others formed the panel.
Unaccustomed as I am…
It soon became clear that standing up in front of a room full of conference delegates and talking for 15-20 minutes straight then being bombarded with questions, whilst de rigueur for academic conferences, was not the preferred format for people not used to public speaking. It was therefore suggested that perhaps a panel discussion would be preferable, with panellists able to support each other, to build on and draw from each other’s experiences.
With the format agreed, this brought us to the main question. Under the broad umbrella of ‘research’, what should we talk about? Each member of the group, in a meeting and via email, was invited to indicate which topics they considered to be the most important to discuss. There was remarkable consistency amongst most topics; all suggestions were collated into a single document, and then from that master list, the group prioritized a few key areas for discussion.
Preparation
With the discussion topics agreed, attention turned to logistics and preparation. It was agreed that all panel members, having decided the topics, would have sight of all questions in advance of the conference to think about answers, and to avoid as much as possible, any nasty surprises.
The conference organizing committee had made a decision to treat all lived experience speakers exactly the same as our other speakers. All speakers had their travel expenses and accommodation paid for but did not receive any remuneration for speaking – much like our keynotes, and other presenters. The fact speakers don’t get paid to present at conferences, in fact are in many cases required to pay for the privilege, came as a surprise to some!
“The two-way discussions between panel and audience members has instigated a shift in the way that some researchers think about lived experience involvement in research”
Support
One of the criticisms sometimes levelled at researchers who recruit lived experience practitioners into research is that there is a distinct lack of aftercare, once the individual has made their contribution. As we were specifically engaging with individuals who had experienced gambling harm, and the conference is designed to focus solely on gambling, we wanted to make sure that an adequate level of peer support was available throughout the duration of the event, and post-conference.
With that in mind, we also invited and covered the expenses for two peer support providers who were there for the duration of the conference. This allowed the lived experience speakers, and anyone affected by gambling related harm who attended the event, to feel and be supported at all times.
Making research better
Overall, based on the feedback we have received on our conference evaluation forms, the panel was a success. Many delegates identified the lived experience session as a highlight of the conference, commenting on the refreshingly novel approach.
Perhaps most importantly from a research perspective, feedback identified that the two-way discussions between panel and audience members has instigated a shift in the way that some researchers think about lived experience involvement in research. This in turn has prompted a reflection on many of our own practices, and to think about ways in which we can improve what we do.
Feedback from the lived experience panelists and advisory group was generally positive, however also highlighted ways in which the session and the overall process could be improved. In hindsight, we could have advertised this more widely and been less at the mercy of twitter’s algorithms – we were contacted by a number of individuals and organisations after the event who expressed some dismay at not even being aware the event was happening, having not seen our initial tweets.
A time and a place for everything
Scheduling was also raised both pre-and post-event as an issue, specifically why the lived experience session was scheduled for the afternoon of the second day, towards the end of the conference. With all due respect to the academic sessions, the novelty of the lived experience session was used as something of a carrot to keep people’s attention focused on day 2 (we’ve all been or seen those ‘nodders’ on day 2). However, the lesson learned is that lived experience input can, and should, contribute to not just a single session design, but to overall conference programming.
From an organising committee perspective, although the lived experience session was considered a success, there was still a lingering sense that by drawing a clear distinction between academic research sessions and the lived experience session, there still a sense of ‘othering’ of the lived experience panel; although sitting firmly in the spotlight, the session was still separated from the rest of the conference. Plans are being discussed (with lived experience input) to integrate lived experience into CAGR2023 in a more holistic and comprehensive manner.
First Steps
In summary, we set out to give lived experience a much more central role in an academic conference in a way not really done before. As a first attempt, the process was not without fault – but if all involved feel seen and heard, and we can influence the way researchers and lived experience can work together – then we have taken the first steps on the road to progress.
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