The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study

Health Expectations, 2024 · DOI: https://doi.org/10.1111/hex.14130 · Published: June 19, 2024

Spinal Cord Injury Patient Experience Research Methodology & Design

Simple Explanation

This study aimed to develop evidence‐informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. This research developed a previously unavailable set of evidence‐informed principles to inform PPI in preclinical spinal cord research.

Study Duration

Not specified

Participants

38 stakeholders including researchers, clinicians and people living with spinal cord injury

Evidence Level

Not specified

Key Findings

1
Consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable.
2
The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication.
3
Thirteen of these principles were considered essential for PPI in preclinical spinal cord research and 14 principles were considered desirable by the expert panel.

Research Summary

This study aimed to develop key principles for PPI in preclinical spinal cord research to support researchers in conducting evidence‐informed PPI. Using a modified Delphi method, consensus was reached among an expert panel on 27 principles. This study contributes new knowledge by providing evidence‐informed guidelines for preclinical researchers to conduct PPI.

Practical Implications

Guidance for Researchers

The principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research.

Inform PPI in Other Disciplines

The principles may also inform PPI in other preclinical disciplines.

Focus Research Priorities

PPI may help address the challenge of preclinical SCI research failing to translate by helping focus research priorities on areas of most clinical relevance to people affected by SCI.

Study Limitations

1
The key principles developed in this study were focused on PPI in preclinical SCI research, with a focus on rugby‐related SCI in line with the broader study.
2
The researcher participant group reported the lowest median experience in their group, indicating high participation from early career researchers whose perspectives may differ from experienced principal investigators.
3
Due to time constraints, only two Delphi rounds were conducted. While there is no set number of rounds for a Delphi, holding further rounds may have resulted in some borderline principles reaching consensus

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