The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research

A Modified Delphi Study

Bibliographic Data

ID19507610
AuthorsPádraig Carroll (0000-0001-7211-9439, School of Pharmacy and Biomolecular Science RCSI University of Medicine and Health Sciences Dublin Ireland, corresponding author), Éimear Smith (0000-0002-3739-0749, National Rehabilitation Hospital Dublin Ireland), Adrian Dervan (0000-0001-9201-276X, Tissue Engineering Research Group (TERG), Department of Anatomy and Regenerative Medicine RCSI University of Medicine and Health Sciences Dublin Ireland), Ciarán McCarthy (0009-0004-8733-3007, c/o Irish Rugby Football Union Charitable Trust Dublin Ireland), Ian Woods (0000-0002-7889-1590, Tissue Engineering Research Group (TERG), Department of Anatomy and Regenerative Medicine RCSI University of Medicine and Health Sciences Dublin Ireland), Cliff Beirne (Sports Surgery Clinic Santry Dublin Ireland), Geoff Harte (c/o Irish Rugby Football Union Charitable Trust Dublin Ireland), Dónal O'Flynn (c/o Irish Rugby Football Union Charitable Trust Dublin Ireland), Dónal O’Flynn (Irish Rugby Football Union), John Quinlan (0000-0003-3806-415X, Tallaght University Hospital, Tallaght Dublin Ireland), Fergal J O'Brien (0000-0003-2030-8005, Tissue Engineering Research Group (TERG), Department of Anatomy and Regenerative Medicine RCSI University of Medicine and Health Sciences Dublin Ireland), Michelle Flood (0000-0002-8284-1780, School of Pharmacy and Biomolecular Science RCSI University of Medicine and Health Sciences Dublin Ireland), Frank Moriarty (0000-0001-9838-3625, School of Pharmacy and Biomolecular Science RCSI University of Medicine and Health Sciences Dublin Ireland)
Year2024
Volume27
Issue4
Pagese14130-e14130
Publication date2024-08-01
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.14130
PMID38962988
OpenAlexW4400324977
LanguageEN
References cited39

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors

Business · Delphi · Delphi method · Knowledge management · Political science · Process management · Public involvement · Public relations · Spinal cord · Biomedical Ethics and Regulation · Computer Science · Medicine · Mental Health and Patient Involvement · Neuroscience · Patient-Provider Communication in Healthcare · Psychology

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