Evaluating Patient and Public Involvement and Engagement Activity Within the 3DPiPPIn Trial: A Qualitative Exploration of Contributors' Perspectives on Their Impact

Abstract

Introduction: Patient and Public Involvement and Engagement (PPIE) is now considered essential to the delivery of high-quality, patient-centred and translational research. However, despite widespread recognition of this, PPIE remains poorly understood, inconsistently utilised and inadequately reported.

Objective: This study aimed to report, discuss and analyse the PPIE activities undertaken within 3DPiPPIn—a randomised control trial investigating the feasibility of using 3D printing to develop customised masks for patients receiving positive airway pressure (PAP) therapy. Emphasis was placed on analysing the wider impacts of these activities, including the impact on Patient Advisory Group (PAG) members.

Methods: Data were collected from PAG members via 1:1 semi-structured interviews, which took place either face-to-face or online as per members' preference. Interviews were recorded, transcribed verbatim and analysed in NVivo using Braun and Clarke's Six-Phase Reflexive Thematic Analysis.

Results: Three PAG members were interviewed; two were conducted remotely via Microsoft Teams, while the third took place face-to-face. Analysis resulted in the identification of three themes: ‘Disparate perceptions of PPIE influence in research’, ‘Empowered and enriched through PPIE’ and ‘Navigating the evolving experience and hurdles of PPIE’. PAG members described their influence on the trial as variable, feeling their involvement was impactful in some instances and insignificant in others. Despite this, they unanimously agreed that PAG involvement had a positive personal impact and that their experiences of PPIE were diverse and dynamic. Within the subtheme ‘Supports and stumbling blocks for PPIE’, members reflected on facilitators and barriers to PPIE. For example, the relaxed environment created by the Principal Investigator was seen to have promoted open discussion, while personal challenges sometimes diverted their focus from their role as a PAG member.

Conclusion: This Reflexive Thematic Analysis explored the impact of PPIE on the 3DPiPPIn trial from the perspective of its PAG members. It exemplifies PPIE best practice and highlights areas for improvement to other researchers, advocating for meaningful rather than tokenistic PPIE. By encouraging excellence in PPIE, this report could enhance public engagement in research and, by demonstrating the impact and importance of quality PPIE, could inspire funders to ensure the provision of adequate PPIE resources.

Trial Registration: Embedded within the 3DPiPPIn trial (ISRCTN 74082423).