Patient and public involvement in health research from researchers' perspective

Abstract

Background: Patient and public involvement (PPI) is increasingly considered an integral part of health research, and the focus has shifted from why we need PPI to how users can be involved in a meaningful way. The rationale for investigating experiences with PPI from the perspective of occupational therapy (OT)-trained researchers' originates in the interrelationship between the inclusive approach to knowledge production, and participation and inclusion as core tenets of OT. The aim of this study was to explore PPI in health research from the perspective of OT-trained researchers.

Method: Semi-structured individual interviews were conducted online with nine Norwegian researchers. The interviews were analysed using reflexive thematic analysis.

Results: Professional background and clinical experience from person-centred OT formed the foundation for how these researchers approached and facilitated PPI in their research. Valuing experiential knowledge and facilitating PPI to be meaningful for public collaborators were highlighted as essential for PPI to have an impact. The need to balance mutual expectations, requirements for research, and what might be possible to achieve within a research study were found to be vital.

Conclusion: Collaborative clinical experience constituted a sound foundation for implementing PPI in research. The occupational perspective underlines the importance of acknowledging experiential knowledge as essential to facilitating meaningful PPI. Challenges related to requirements for research and culture for implementing PPI were addressed by clarifying roles and expectations.

Patient or public contribution: Three public collaborators were involved in developing the aims, the interview guide, and the data analysis. They all had previous experience being involved in research.

Keywords: occupational therapist; participation; patient and public involvement; reflexive thematic analysis.