26 Nov 2020

This is aligned with principles in maternity services and perinatal mental health policies that aspire to women being ‘in control of their care, in partnership with their healthcare professionals’ [2] and services being ‘person-centred, … needs-led (and) responsive’ [3]. 

Our patient and public involvement and engagement (PPIE) strategy group comprises similar numbers of community members (including an ethnically diverse group of recent service users, network leaders, maternity voices partnership representatives and charity managers) and researchers. We also have two PPIE leads in the group whose work includes relationship building, communications, and supporting community members, and PPIE advice and planning.

We have developed a terms of reference document that articulates our collective goal and purpose. Our goal is 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. This includes those living in poverty, facing disadvantage and with socially complex lives. One member emphasised the importance of providing people with ‘support to be involved in research’. 

We are eagerly waiting to see the ARC South London PPIE strategy, to which several of the group have contributed. It seems likely that we will use it to guide our PPIE development work. We have adopted the principles of diversity and inclusion committed to at ARC South London. The maternity and perinatal mental health research strategy group will:

  • advise, for example by co-producing values and good practice for collaborative partnership working
  • promote diversity and inclusion: recruitment of researchers, research participants and stakeholder advisers
  • model good practice and promote guidance on PPIE
  • identify suitable training on PPIE and co-production with our ARC South London colleagues, collaborate with other ARCs and organisations leading on PPIE and look for sources of funding for PPIE training. 
Mary Newburn, maternity and perinatal mental health, public involvement lead

At our November meeting, an induction talk to provide orientation for researchers and community members was considered ‘really helpful’ and ‘pitched at the right level’. It was circulated after the meeting with links for all of the resources, such as the NIHR Standards for public involvement in research and the INCLUDE graphic [4].  Workshops were held on training needs and the role of PPIE lead or co-investigator roles. Participants felt that combined training for both community members and researchers would be beneficial. 

It was felt that PPIE leads and co-investigators, together with maternity or perinatal mental health charities, can be ‘intermediaries’ bridging between communities and researchers [5].  A researcher raised the issue of how little ethical guidance there is about asking service users to become advisers from a lived experience perspective, compared with the extensive ethical procedures safeguarding recruitment as study participants.

A service user emphasised the importance of supporting people who accept invitations to ‘get involved’ in research to practice self-care, so that they are helped to manage the potential stress of re-living past, difficult experiences. The group were keen for the relationship between researchers and community members to be reciprocal and beneficial to both parties. As part of this commitment, information would be circulated about sources of funding for further training, as some of our PPIE advisers aspire to becoming service user researchers.

References

[1] INVOLVE. What is public involvement in research?

[2] NHS England. Better Births: Improving outcomes of maternity services in England A Five Year Forward View for maternity care. NHS England 2016.

[3] NHS England. The Perinatal Mental Health Care Pathways. NHS England 2018.

[4] Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project

[5] The invisible made visible: using impact evaluations to illuminate and inform the role of knowledge intermediaries. Meagher L, Lyall C. Evid Policy J Res Debate Pract [Internet]. 2013;9:409–18.