Patient and Public Involvement and Engagement (PPIE) is led by Professor Sophie StaniszewskaLink opens in a new window from the Warwick Medical SchoolLink opens in a new window. Our PPIE strategy draws on the NIHR Going the Extra MileLink opens in a new window (GEM) Strategic Review of PPIE (Staniszewska et al 2018Link opens in a new window) and the NIHR Public Involvement Standards. Staniszewska was vice-chair of GEM and is actively involved in its implementation. PPIE is embed across the HPRU themes as a boundary spanning activity. We work closely with other HPRUs to create strategic and operational synergy, adding value through a programme of linked PPIE activity and evaluation, to enhance the PPIE knowledge of researchers and create impactful PPIE practice that complements other HPRU activities.
Our strategy is to embed the core concept of co-production, drawing on GEM 4 Rs of PPIE, reach, relevance, refinement and relationships, the conceptual drivers of the NIHR PPIE Standards. Thus, we proactively seek to maximise diversity and provide inclusive opportunities; we involve public members in identifying studies based on community need and consider the relevance of project aim, design and outcomes; we draw on PPIE evidence to refine our practice and we build high quality relationships between researchers and publics through the use of deliberative knowledge spaces that value all contributions and expertise, creating opportunities for impactful PPIE.
We are establishing a hub-and-spoke model of PPIE with the hub comprised of a standing group of 10-12 public members who provide strategic overview, as well as being involved in studies. This standing group reviews key areas such as the potential for digital technologies to extend our reach and the best approaches for community engagement. The spoke is represented by project specific PPIE groups who are recruited according to study needs. This approach has worked well for Collaboration for Leadership in Applied Health ResearchLink opens in a new window (CLAHRC). Members of the public are recruited in a number of ways including UKHSA Public Panel, NIHR PPIE portal and through community activities. CLAHRC has developed strong community partnership and this is continuing with the new Applied Research CollaborationsLink opens in a new window (ARCs). We build on these existing networks to form stronger community relationships.
We are developing a strand of PPIE evaluation to capture the contribution and impact PPIE makes to public health research, working collaboratively with our public partners. We routinely record PPIE meetings, transcribe them and analyse them thematically, in order to identify contribution and impact, and to build key concepts that help us understand how PPIE works, for whom, why and in what context. This realist evaluation approach enables us to develop programme theories that build our understanding of impactful PPIE. We have previously used this approach in the RAPPORT study where we explored how PPIE worked in 22 NIHR funded studies (Wilson et al 2018Link opens in a new window). We use GRIPP2 to report our PPIE (Staniszewska et al 2017Link opens in a new window). We are also exploring the public role in implementation and dissemination of project outcomes, a gap in the current implementation evidence base.
The full description of our HPRU strategy for PPIE is available for download as a PDF file here.