The role of Patient and Public Involvement (PPI) in pre-clinical spinal cord research: an interview study

Abstract

AbstractBackgroundPatient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players’ who live with a spinal cord injury on PPI in pre-clinical research.MethodsSemi-structured interviews were conducted via telephone with 11 male seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically.FindingsSix themes were identified during analysis: ‘limited knowledge of PPI’, ‘connecting pre-clinical research with the day-to-day realities of spinal cord injury’, ‘making pre-clinical research accessible for non-scientific audiences’, ‘barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative’, ‘personal contact and dialogue facilitate PPI’, and ‘collaborating on dissemination builds trust in research.’ConclusionPeople affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.