Community engagement on polycystic ovary syndrome (PCOS) research

Patient and Public Involvement and Engagement (PPIE) case study

Aim

We aimed to disseminate findings from the PCOS research and recruit new public contributors to the Hilda’s (women’s health) PPIE group at various local community festivals.

Methods

3 public contributors from the Hilda’s women health PPIE group interacted with local communities at public events.

Involvement included

• Public contributors from the Hilda’s women’s health PPIE group attended various local community festivals to help disseminate research findings (including stands at CoCoMad Festival, the Birmingham Mela Festival and Simmer Down Festival).
• Engaged audiences with a “myth busting quiz” and invited visitors to share their reflections and thoughts on PCOS and women’s health.

Best practice

• Taking research out to the community, positioning science alongside music, art, food and wider culture to increase engagement.
• Increased engagement with ethnically minoritised groups.
• Visitors to the stand heard directly from public contributors to build trust, aid recruitment and disseminate research findings.

Impact of PPIE

• Several members of the public volunteered stories about their own struggles with PCOS. In particular, some expressed an interest in improving their own fertility or supporting family/friends struggling with fertility due to PCOS. Whilst recruitment into research was not a direct aim of our engagement, PPIE members facilitated us to signpost to the LOCI trial at Birmingham, raising awareness of active research and potentially diversifying recruitment (although not possible to track this directly as referrals must be made via a local GP).
• The quiz also revealed a lack of societal awareness on the metabolic risks of PCOS, highlighting specific areas for future public engagement.

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