Thinking about involvement in research strategically
Each year in November, the maternity and perinatal mental health theme at ARC South London meets online to consider public involvement in research strategically. We ask: “How is this work going? What needs to change to improve what we do?” The patient and public involvement and engagement (PPIE) strategy group is multidisciplinary, including community members, maternity voices partnership members, researchers, and policy and community engagement leads from relevant charities.
In 2022, the focus of the meeting was PPIE leadership: capacity building. Our research theme has a culture of this work being led by an experienced service user researcher, Mary Newburn, who has worked in maternity with parents’ charities for several decades in policy, information, service user research and PPI roles. This is not a universal approach. The NIHR says that the role of PPI lead (note: in this article we focus on patient and public involvement ‘PPI’ in planning and carrying out research, rather than ‘PPIE’, which includes engaging with the public to share research findings) can be taken by:
‘any of the co-applicants within the research team (or a named member of the team), who has the relevant skills, experience and authority to be accountable, represent, manage and embed patient and public involvement in all aspects of the research study/programme’.
Part of the PPI lead role is to ensure that there is a plan for PPI, and that activities necessary to achieve PPI goals are fully costed and included in the budget. This includes the PPI lead’s own involvement. The PPI lead can be an employed staff member, a sub-contracted charity, or a self-employed individual or representative of a registered social enterprise. All options, except being an employee, will require the university to approve the PPI lead as an independent ‘supplier’.
ARC South London has developed an involvement strategy, which aims to increase equity, diversity and inclusion (EDI) across involvement in the ARC. In terms of capacity building for PPI, this may have a number of implications, including identifying:
- how more diverse groups and communities would like to work with researchers
- what motivates individuals and community social media networks to become involved
- what support and training may be needed
- what help may be needed to develop a realistic budget for responsive, inclusive, enabling and reciprocal PPI activities.
PPI leadership: capacity building
The need to build capacity around PPI leadership was illustrated to Mary recently, when she was contacted by a new PPI lead. This new lead had previously been a participant in a study and attended meetings with other service users. She had now been invited to be a co-applicant in a study, as the lead for patient and public involvement in the research. Priyanka (not her real name) said: “I’m making it up as I go along. I need some help”.