Expert by Experience engagement in gambling reform: qualitative study of gamblers in the United Kingdom

To explore how Experts by Experience (EbyE) conceptualize key priorities for preventing and reducing gambling-related harm in the United Kingdom (UK). To identify barriers and facilitators to EbyE engagement in decisions for gambling research, education, treatment (RET) and policy development. Qualitative study utilizing semi-structured interviews with 20 participants from the UK between March and July 2020. Gamblers aged 29-60 years who self-reported that they had experienced gambling-related harm, and who actively used their experiences to inform strategies to prevent and reduce gambling-related harm in the UK. Participants were motivated to: advocate for gambling reform, and raise awareness of their experiences of gambling addiction or disorder. Gambling regulation was described as not adequately keeping pace with gambling industry practices, with initiatives needed to prevent the harms associated with product design, how individuals engaged with products and marketing practices. The reliance on voluntary contributions by the gambling industry for RET was perceived as a potential barrier to reform. Participants recommended new independent structures which engaged EbyE in meaningful ways in contributing to decision-making. An independent body run by and for EbyE was one mechanism that participants perceived could represent the voices of those impacted by gambling-related harm. Individuals with a lived experience of gambling-related harm, including affected social network members, bring a range of unique experiences and perspectives, and should be seen as valuable stakeholders in co-producing strategies to prevent and reduce gambling-related harm. Lay Summary The focus of this study was to understand the key priorities for preventing and reducing gambling-related harm in the United Kingdom (UK), and the barriers and facilitators to engage individuals with a lived experience of gambling-related harm who are Experts by Experience (EbyE) in the development of gambling research, education, treatment (RET) and policy. The study interviewed EbyE gamblers aged 18 years and older from the UK between March and July 2020, who self-reported they had experienced gambling-related harm, and who had actively used their voice to highlight strategies to prevent and reduce gambling-related harm. Participants recommended strategies to prevent harms associated with gambling products and how individuals interacted with products, and restrictions to gambling marketing. A key barrier to achieving gambling reform was a lack of independent funding structures for gambling (RET). Participants recommended the formation of an independent body free of gambling industry funding and influence, run by and for EbyE (including social network members) to advise on gambling RET, policy and reform initiatives. There should be meaningful structures to engage EbyE (including social network members) in the development of gambling RET and policy. Their unique insights and experiences should be supported and empowered.