The report  captures learning from an event held in April 2021, which was co-designed by a diverse group of community members and ARC researchers. Emily Ahmed, consultant trainer and public engagement facilitator, led the development and facilitation. The event explored barriers, issues and solutions to community involvement in research, and was run using a community-led approach known as participatory appraisal (PA), which values people as “experts in the own lives”.

The aim of the event was to explore:

  • How maternity and perinatal mental health researchers work with diverse communities
  • How power can be shared while doing research
  • How to overcome barriers to patient and public involvement and engagement (PPIE) in research.

These issues are central to the ARC’s maternity and perinatal mental health research, which aims to address poorer outcomes for women and babies living in areas of social disadvantage and from Black, Asian and minority ethnic groups in south London.

Taking part has deepened my understanding of the power of communication and co-production in healthcare research for the benefit of wider communities, and a society in which no one is left behind. I feel that hearing individual voices and empowering those speakers who would otherwise be unheard is a huge contribution toward research in healthcare and improvements in our health system and society.

Vita Moltedo

Vita Moltedo, one of the peer researcher facilitators, said:

The report is aimed at researchers, funders, healthcare practitioners, service users, community network leaders, activists, parents and the wider public. It highlights a number of findings, including how to ensure greater community involvement, diversity and equity in both the design and doing of research, and in research participation – who is studied and how they are involved.

It makes specific recommendations around six broad themes:

  • Communities – Build trust and create partnerships with diverse communities, involve them and their interests when setting research priorities
  • Communication – improve communication so that it meets the needs of diverse communities
  • Diversity in research teams – Address the diversity and representation of relevant communities within research teams, and engage with the populations you wish to serve
  • Funding – Raise appropriate funding to ensure participants’ perspectives and diverse communities can be at the core of the research process and co-produce research where possible
  • Power imbalance – Be aware of power imbalance and address it through structures, training, behaviour, reading and reflection
  • Trust and respect – Build trust with people and communities by actively committing to fairness and enhancing community wellbeing.

Mary Newburn, PPIE lead for the maternity and perinatal mental health theme, said: “Involving diverse service users and the wider public in the planning and design of research is vital to ensure it is relevant, acceptable and tailored to the needs and experiences of service users and the public. Our researchers want to draw on community knowledge, personal lived-experiences, attitudes and beliefs from the beginning of their research studies. And they want advice on how best to engage and involve people. We hope this report will facilitate mutual understanding between researchers and communities, contributing to greater involvement and participation in maternity research. It highlights also, the need for us all to think about the infrastructure required to do this complex and vital work, the thought leadership, the training (for researchers), and the skilled facilitation and intermediary work.”

The report also includes a description of the research team’s values, the methods used in the event, a description of the training, and reflections from organisers and participants.

The team involved will be presenting this work at the next Inside Research seminar on 3 November.

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