Can We Move Beyond Tick Box Inclusion in Sexual Health Research? Lessons from Using Non-Expert PPI

Background

Ireland is experiencing a sustained rise in sexually transmitted infections (STIs) compared to pre-COVID-19 levels. STIs disproportionately affect gay and bisexual men and other men who have sex with men, migrants, and young people aged 18–25. Across Europe, funders increasingly require public and patient involvement (PPI) in sexual health research, yet the frameworks to support meaningful participation are few.

Methods

In the SHIFT Study (Sexual Health in Ireland: Factors Influencing Transmission and Prevention), 12 non-expert PPI contributors were recruited as key collaborators across four work packages: systematic review, secondary data analysis, qualitative interviews, and participatory systems mapping. Our objectives were to recruit and retain PPI contributors, identify barriers to meaningful participation, document protocol amendments arising from PPI input, and critically assess where PPI added genuine value versus where engagement remained superficial. Our methods included documentation of protocol amendments and researcher reflexivity journals.

Results

Our findings indicate PPI contributed meaningfully to qualitative elements, including interview design, recruitment strategy and materials, ethical considerations such as amendments to consent forms and participant information sheets, participation in the systems mapping workshop, and analysis. However, engagement with the systematic review and secondary data analysis remained limited, constrained by methodological unfamiliarity and lack of meaningful engagement by researchers with PPI.

Conclusions

These findings reinforce calls from PPI research in other health fields for clear frameworks that honestly define what meaningful participation looks like across all study components, including explicit acknowledgement of where co-generation is not currently feasible. Avoiding tokenism requires both realistic capacity planning and genuine institutional investment in PPI contributor training.

Key messages

• These findings reinforce calls from PPI research in other health fields for clear frameworks that honestly define what meaningful participation looks like across all study components.

• Avoiding tokenism requires both realistic capacity planning and genuine institutional investment in PPI contributor training.