Patient and public involvement (PPI) in preclinical spinal cord research

Patient and Public Involvement (PPI) refers to the active involvement of patients and/or members of the public in the research process. PPI is increasingly commonplace in clinical research. However, its use in preclinical research (referring to basic, biomedical, fundamental, or laboratory-based research) remains more limited. The research presented in this thesis investigated PPI in the context of preclinical spinal cord research.This thesis consists of four studies. First, a scoping review aimed to map published papers on PPI in preclinical research. Next, two interview studies were conducted with (1) people living with rugby-related spinal cord injury, (2) preclinical researchers and clinicians specialising in spinal cord injury to explore their perspectives on PPI in preclinical spinal cord research. Finally, a Delphi study was carried out to develop principles to support preclinical researchers in conducting evidence-informed PPI in spinal cord research.The scoping review identified nine examples of preclinical research studies that had incorporated PPI, which was primarily used to identify patient-informed research priorities. In the interview studies, participants’ perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers and make preclinical research more accessible. They identified accessibility and the distance between laboratory-based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. People affected by spinal cord injury, preclinical spinal cord researchers, and physicians/surgeons specialising in spinal cord injury were supportive of PPI, highlighting its methodological benefits and the right for people to be involved in research relevant to their lives. In the Delphi study, essential and desirable principles were developed for PPI in preclinical spinal cord injury research, emphasising the importance of recruiting a diverse range of people to contribute to PPI, clear and transparent communication about the progress and challenges of preclinical research, ensuring PPI training for preclinical researchers, and disseminating preclinical research using language and avenues suited for non-scientific audiences. PPI enables patients and the public to be active partners in research that impacts their lives. This thesis investigated PPI in preclinical research. Extending PPI to preclinical spinal cord research means people affected by spinal cord injury can influence preclinical research. This thesis identified the priorities and preferences of researchers, clinicians, and people affected by spinal cord injury in preclinical spinal cord research for PPI, and developed a set of evidence-informed principles to facilitate its implementation.