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

Author:

Carroll Pádraig123ORCID,Smith Éimear4,Dervan Adrian23,McCarthy Ciarán5,Beirne Cliff6,Quinlan John7,Harte Geoff5,O'Flynn Dónal5,O'Brien Fergal J.23,Moriarty Frank1,Flood Michelle1238ORCID

Affiliation:

1. School of Pharmacy and Biomolecular Science RCSI University of Medicine and Health Sciences Dublin Ireland

2. Tissue Engineering Research Group (TERG), Department of Anatomy and Regenerative Medicine RCSI University of Medicine and Health Sciences Dublin Ireland

3. Advanced Materials and BioEngineering Research (AMBER) Centre Trinity College Dublin (TCD) and RCSI University of Medicine and Health Sciences Dublin Ireland

4. National Rehabilitation Hospital Dublin Ireland

5. c/o Irish Rugby Football Union Charitable Trust Dublin Ireland

6. Sports Surgery Clinic Santry Dublin Ireland

7. Tallaght University Hospital, Tallaght Dublin Ireland

8. RCSI PPI Ignite Network Office part of the National PPI Ignite Network based at the University of Galway Galway Ireland

Abstract

AbstractIntroductionPatient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory‐based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study.MethodsSemi‐structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically.FindingsNine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab‐based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research.ConclusionsWhile traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work.Patient or Public ContributionThis study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5‐year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co‐authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

Publisher

Wiley

Reference29 articles.

1. National Institute for Health and Care Research. Briefing notes for researchers—public involvement in NHS health and social care research.2023. Updated 05/04/2021‐09/09/2023.https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371

2. Mapping the impact of patient and public involvement on health and social care research: a systematic review

3. Patient and public involvement in chronic illness: beyond the expert patient

4. How and why should we engage parents as co-researchers in health research? A scoping review of current practices

5. Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review

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