Patient and public involvement and engagement in maternity and perinatal mental health

Our research aims to improve the health and wellbeing of women and families by identifying who has additional needs, and by improving the healthcare management, support and clinical monitoring of women at risk of severe morbidity and mortality during and after pregnancy. Community involvement in the research really helps us to get this right.

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A culture of active patient and public involvement and engagement (PPIE) in maternity and perinatal mental health research, where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them

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Strong links and networks with individuals and organisations to ensure that Black, Asian and minority ethnic communities are at the centre of the research

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That those living in poverty, facing disadvantage and with socially complex lives are well represented and supported to be involved in research

Advise on ways of working towards our goal, for example by co-producing agreed values and good practice for collaborative, partnership working

Promote diversity and inclusion in research, among researchers, research participants and stakeholder advisers

Model good practice and share, promote and occasionally provide guidance on PPIE matters, from design and funding application stages to analysis, writing up and sharing of research findings

Identify suitable training on PPIE and co-production, collaborating with ARC South London colleagues, with other ARCs and organisations leading on PPIE, and looking for sources of funding for PPIE training

We have developed and maintain an ethnically diverse PPIE Network with Black, Asian, minority ethnic and White members — our ‘PPIE advisers’. We recruit from community groups, social enterprises, charities, maternity voices partnerships and social media.

Our PPIE Advisory Group meets at least three times a year to contribute to research proposals, information for the public, the look and feel of study materials, and barriers and facilitators in how to build trust and establish positive relationships with key community groups.

We pay our PPIE advisors an honorarium, as well as any out-of-pocket expenses, for leading PPIE work and giving advice at meetings.

We monitor and report on the diversity of our PPIE advisors, with their permission, using the ARC South London diversity monitoring form.

We support and encourage opportunities for community members to lead training, to co-write articles and blogs, to train and work as peer researchers, to explore with researchers what is required for co-production to be possible, and to know about and have opportunities to move into academic research and PPIE leadership.

We have a paid PPIE lead with expertise on PPIE in research to advise and coordinate.

We liaise and share good practice with the ARC Diversity and Inclusion group, other ARCs with PPIE expertise, the Institute for Women’s and Children’s Health, the King’s College London Service User Research Enterprise (SURE), the NHS Long Term Plan / Maternity Transformation Stakeholder Council, and a range of relevant charities and maternity voices partnerships.

We communicate openly, sharing research opportunities and findings using blogs, Twitter @arc_S_Lppi and Facebook.