The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study

PLoS ONE, 2024 · DOI: https://doi.org/10.1371/journal.pone.0301626 · Published: April 29, 2024

Spinal Cord Injury Patient Experience Research Methodology & Design

Simple Explanation

This study explores the perspectives of seriously injured rugby players living with spinal cord injury on patient and public involvement (PPI) in pre-clinical research. Participants felt that their experiences could enhance researchers’ understanding of spinal cord injury and the priorities of those affected by it. Participants preferred personal interaction with researchers, highlighting that they would feel more valued from one-to-one interactions and more likely to have confidence in the research process.

Study Duration

Not specified

Participants

11 seriously injured rugby players living with spinal cord injury

Evidence Level

Qualitative study using semi-structured interviews

Key Findings

1
People affected by spinal cord injury desire further involvement in pre-clinical research through dialogue and contact with researchers.
2
Barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative.
3
PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.

Research Summary

The study aimed to explore seriously injured rugby players’ perspectives on PPI in pre-clinical spinal cord research with specific objectives to (1) establish participants’ knowledge/experience of PPI, (2) explore how best to deliver/manage PPI and (3) identify barriers/enablers to participation. Participants indicated that researchers should aim to bridge the gap between laboratory research and peoples’ daily experiences of spinal cord injury. Participants reported that contact and dialogue with researchers were enablers for PPI in pre-clinical spinal cord research, indicating that they would feel more valued by such interactions.

Practical Implications

Facilitate PPI

Make clear the links between pre-clinical spinal cord research and its real-world application to facilitate PPI.

Improve Communication

Use terminology and language familiar to non-scientific audiences to ensure that pre-clinical spinal cord research is accessible.

Address Concerns

Focuses on optimising interest, addressing accessibility concerns, and clearly communicating the meaning of research findings.

Study Limitations

1
Participants had limited experience and knowledge of PPI and pre-clinical research.
2
Findings may not be representative of the entire spinal cord injury community, as research is conducted in the context of rugby-related spinal cord injury.
3
Wider demographic details on study participants were not included in this study.

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