Patient and Public Involvement/Engagement in Preclinical Spinal Cord Research – How do we do it best?

Patient and Public Involvement/Engagement (PPI/E) has formed a central part of the Irish Rugby Football Union Charitable Trust/AMBER Health Theme Spinal Cord Repair Project. Involving people affected by conditions being researched helps improve the relevance, quality, and impact. A group consisting of seriously injured rugby players, clinicians, researchers and PPI/E facilitators established. The remit of the Spinal Cord Repair Project Advisory Panel was to oversee the work of the research team, provide insight into the ongoing research and co-develop a PPI strategy for the project. While this kind of PPI/E project has a well-established evidence base in clinical research, the role and impact of PPI in preclinical research remains limited, and less well understood.

Where literature does exist there are some early indications that the incorporation of PPI in preclinical research is not without challenge. These obstacles primarily relate to (i) issues in communicating the nature and relevance of the proposed research, which may have no immediately identifiable clinical relevance, (ii) lack of established methods/approaches for PPI in preclinical research, and (iii) perceptions amongst preclinical researchers that PPI may not be useful. However, it is widely accepted that PPI has an important role to play and efforts to develop it further need to be increased.

As there has to-date been limited evidence in peer-reviewed literature the panel members identified the need for the research team to gather the evidence base for preclinical PPI as a starting point for strategy development and implementation. A scoping review was decided as the appropriate systematic review methodology, following the Joanna Briggs Institute (JBI) guidelines for scoping reviews. The review aimed to identify and map the current literature on PPI in preclinical research; findings of which will support preclinical researchers and will identify priority areas for future research. The scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research and will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions for this project and the PPI advisory panel will then collaboratively identify themes in the extracted data. By conducting a formal literature search, the team will map the existing evidence base for the different approaches used by preclinical researchers incorporating PPI, their rationale behind its inclusion, and the impact of PPI on the research. The protocol for this scoping review has been published and is currently underway.

The team has endeavoured to ensure a scholarly approach has been used in the development and conduct of the PPI/E activities. There has been significant interest in our PPI/E approach within the research community, with an abstract accepted for poster presentation at the International Spinal Cord Society (ISCoS) annual scientific meeting. The project has won the Spinal Cord Institute research-writing prize that aims to highlight important research happening in the field of spinal cord injury with a nonscientific audience, and featured in their ‘In Conversation’ series. Funding for a PhD student to continue this PPI/E work has been secured, and this will allow ongoing research on PPI/E relating to the Spinal Cord Repair Project and PPI in preclinical research more generally to continue and develop further, contributing to the evidence-base for best practice in PPI/E.