Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study

Area of Science:

• Implementation Science
• Health Services Research
• Qualitative Research

Background:

• Patient and Public Involvement and Engagement (PPIE) is crucial for research impact but often lacks critical examination.
• Understanding the power dynamics within PPIE is essential for effective research conduct.

Purpose of the Study:

• To critically interrogate the disciplinary powers and tensions inherent in PPIE using Foucauldian analysis.
• To explore the lived experiences of PPIE members and academics within an implementation science study.

Main Methods:

• A nested evaluation interview study was conducted with three PPIE members and eight academics.
• Foucauldian analysis was applied to understand power dynamics and self-governance.
• PPIE members were co-authors, involved throughout the study.

Main Results:

• A team culture of equality was fostered through shared values, leading to dispersed power and self-governance.
• Discussions sometimes created subjugation rather than co-production due to pace and focus.
• Boundaries between 'academic' and 'PPIE' roles blurred as experiences evolved, requiring constant negotiation.

Conclusions:

• PPIE in research is characterized by subtle, complex, and ongoing disciplinary practices enacted by all team members.
• Effective PPIE requires acknowledging and navigating these nuanced power dynamics and identity negotiations.