“To create a culture of active patient and public involvement, where research is carried out ‘with’ or ‘by’ members of the public and in which strong links and networks are developed with individuals and organisations to ensure socially and ethnically diverse communities are at the centre of our research — including those living in poverty, facing disadvantage and with socially complex lives.”

PPIE leads as ‘intermediaries’

It was felt that PPIE leads and co-investigators, together with maternity or perinatal mental health charities, can act as ‘intermediaries’ bridging between communities and researchers. A researcher raised the issue of how little ethical guidance exists about asking service users to become advisers from a lived experience perspective, compared with the extensive ethical procedures safeguarding recruitment as study participants.

Self-care for service user advisers

A service user emphasised the importance of supporting people who accept invitations to ‘get involved’ in research to practise self-care, so that they are helped to manage the potential stress of re-living past, difficult experiences.

Reciprocal, mutually beneficial relationships

The group were keen for the relationship between researchers and community members to be reciprocal and beneficial to both parties. Information would be circulated about sources of funding for further training, as some PPIE advisers aspire to becoming service user researchers.