Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research: An interview study

Health Expectations, 2024 · DOI: 10.1111/hex.13967 · Published: January 1, 2024

Spinal Cord Injury Patient Experience Research Methodology & Design

Simple Explanation

This study explores the viewpoints of researchers and clinicians regarding the inclusion of patients and the public (PPI) in early-stage spinal cord research. The research involved interviews with 11 clinicians and 11 preclinical researchers working on spinal cord injury (SCI). The study found that participants believe PPI can improve research relevance and positively impact researchers, though challenges like the distance between lab research and patient experiences exist.

Study Duration

March to May 2023

Participants

11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI)

Evidence Level

Qualitative study using semi-structured interviews

Key Findings

1
Participants believed that individuals affected by SCI have a right to be involved in research concerning their condition.
2
PPI can enhance the relevance and focus of preclinical research, preventing wasted efforts on impractical ideas.
3
Involving those affected by spinal cord injury can positively motivate preclinical researchers and remind them of their goals.

Research Summary

This study explored the perspectives of preclinical researchers and clinicians on PPI in preclinical spinal cord research, noting its potential benefits for research and researchers. Participants identified barriers like the remoteness of preclinical research from patients' daily lives, and facilitators such as proactive accessibility measures and a motivated SCI community. The study emphasizes the importance of clear communication, realistic expectations, and respect for PPI contributors' time when building strong partnerships.

Practical Implications

Enhance Research Relevance

Actively involve patients and the public in preclinical research to ensure that the research addresses real-world needs and concerns.

Improve Researcher Motivation

Facilitate interactions between researchers and patients to remind researchers of the human impact of their work and to sustain their motivation.

Promote Ethical Research Practices

Acknowledge and respect the right of patients and the public to be involved in research that affects their lives.

Study Limitations

1
The majority of those interviewed were from the Republic of Ireland, so findings may not be transferrable to other jurisdictions.
2
Many interviewed had no direct experience with PPI, and while this may reflect reality, it may also be a limitation.
3
Six of the 11 researchers were PhD students, and this may not fully reflect the wider research ecosystem.

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