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Exploring "what works" in creating infrastructures and engagement methods for people with lived experience within public health, health and social care, and addiction research


A rapid scoping review of UK research was conducted to establish the current evidence on ‘what works’ in building infrastructures and engagement methods that draw on the knowledge and experience of people with lived experience within the fields of public health, health and social care and addictions. A workshop was also conducted with ten people with lived experience of gambling-related harm to gather their views on what engagement channels and infrastructures would work best.


2019 – 2020

Research team

Stephanie Bramley, Caroline Norrie, Valerie Lipman and Jill Manthorpe (HSCWRU)




We conducted a rapid scoping review. A workshop was conducted with people with lived experience of gambling related harms and findings informed the scoping review.

Related projects at HSCWRU


Summary of Findings

Literature identified mainly comes from research on specific physical health conditions (e.g. cancer, diabetes, dementia) and mental health. It is evident that there are clear, well established principles, values and methods which ‘work’ in these sectors and they may help embed effective, meaningful and ongoing engagement of people with lived experience within the gambling sector. Ideas about ‘what works’ in building infrastructures were also covered. The report notes the lack of any substantial evidence of PPIEP being undertaken within the UK gambling sector. This may reflect a lack of activity within the sector, but another arguably more likely explanation is that PPIEP is being undertaken, for example in gambling support (e.g. service development and peer support), but it is not being recorded and/or reported in a formal manner. Workshop participants expressed a preference for a funded PPIE gambling network, independent of influence from other organisations and were enthusiastic about engaging in policy change and priority-setting. Extensive evidence points to the importance of ensuring that people with lived experience are involved meaningfully, can make choices about their level and type of involvement, are afforded opportunities that are inclusive and accessible, can contribute to strategic decision-making meetings, receive regular feedback, are remunerated and acknowledged for their contributions. Workshop participants highlighted the importance of widening participation and including people affected by gambling-related harms who are harder to reach and lack experience of engagement, rather than regular consultation with the same ‘expert’ individuals, a debate which is well covered in the literature about other sectors. Workshop participants further noted the importance of respect; being mindful of safeguarding risks and consideration of the potential personal and/or emotional costs that people with lived experience of gambling-related harm who get involved with PPIEP may experience. This is particularly pertinent given the ongoing debate between “responsible gambling” where the onus is on the individual to control their gambling behaviour which may be viewed as shameful, versus public health approaches which focus on gambling-related harms as a result of insufficient regulation of the industry enabling the proliferation of advertising, harmful products and sophisticated targeting of individuals. Hearing the voices of people with lived experience of gambling harms and affected others at all levels of policymaking in education, research and treatment is particularly important given this complex and specific context. Workshop participants also highlighted the importance of their voices being heard as a way of countering negative stereotypes about gamblers in this environment.