Making patient and public involvement in research more inclusive

Published on Friday, 19 July 2024 Post

A team of patient and public involvement (PPI) representatives and researchers from the NIHR Policy Research Unit in Maternal and Neonatal Health and Care (PRU-MNHC) in the National Perinatal Epidemiology Unit has published a commentary article about their experiences of working together to make PPI more inclusive.

The project they worked on was called The Listening Series. The team had discussions with people working with and advocating for a wide range of social and ethnic communities, including Black and Asian women and families; young parents; parents from socially deprived backgrounds; and women with physical or learning disabilities. Conversations focused on finding solutions to overcome barriers to the public getting involved in research. Based on what they heard, the team produced a guidance document for researchers and a film summarising the key messages.

Three years on from The Listening Series, their commentary article describes how the project was set up and how the team have embedded what they learned. The authors also reflect on their experiences and learning since changing the way they work, to focus more meaningfully/effectively on inclusion.

Co-author Sumayya Mulla, a participant in The Listening Series, and since 2022 a member of the PPI Task Group for the PRU-MNHC, said:

The Listening Series was particularly interesting to me as we got to hear the experiences of people from so many different walks of life which made me realise how important it is to share these experiences in a way that helps to shape changes that improve services.

Harriet Williams, also a co-author, Listening Series participant and PPI Task Group member since 2022, said:

Reflecting on my journey with the PRU-MNHC, both during the Listening Series and beyond, has been deeply meaningful. As a co-author of the paper and an active participant in the PRU, I've gained invaluable insights and forged genuine connections. Working closely with others who share my passion for improving maternal and child health has not only deepened my understanding of these critical issues but also strengthened my commitment to advocating for positive change. The experiences and stories shared have been incredibly inspiring, reminding me why this work is so important. It's been a privilege to be part of such a dedicated and impactful community.