Navigating Dynamic Power Relations in Patient Involvement: Researchers' Perspectives From University Research

TL;DR

This study explores how researchers manage power dynamics when involving patients in research, highlighting tensions between tokenism and collaboration.

Contribution

The paper introduces a dynamic perspective on power relations in patient involvement, revealing how researchers navigate multiple and shifting forms of power.

Findings

Researchers face tensions between tokenism and co-creation in patient involvement.

Institutional structures often reinforce hierarchies despite efforts to promote collaboration.

Power over patients emerges through procedural control and assigned roles in research practices.

Abstract

Addressing power issues in research involvement is needed for advancing equitable relationships between patients and researchers. While previous studies acknowledge power challenges in patient involvement, few approach power as a dynamic phenomenon in which multiple and shifting power relations coexist.

To examine how researchers navigate three power relations identified in patient involvement research – power with, power to, and power over – and associated tensions.

Sixteen purposively sampled life science, social science and clinical researchers from two Finnish universities participated in thematic interviews. Interview transcripts were analysed thematically.

Researchers navigated power relations through three tensions in patient involvement: (1) tokenism versus co‐creation, (2) institutional structures versus everyday complexities, and (3) conflict versus reflexivity. In tokenism versus co‐creation, gatekeeping (power over) and openness to patient ideas (power to) co‐existed, but also evolved towards co‐researchership (power with). In institutional versus everyday complexities, mediated representation replaced direct involvement, reinforcing hierarchies; funders' recommendations encouraged collaboration but could also consolidate power over through procedural control. In conflict versus reflexivity, power over was evident in patients' rejection of assigned roles and interactional and relational challenges within involvement practices that reproduced hierarchical dynamics.

The study contributes to the discussion of power challenges in patient involvement by illustrating how researchers simultaneously enact, reproduce and resist multiple power relations. A dynamic view of power clarifies researchers' roles in shaping patients' involvement in research.

The first author is a trained Expert by Experience patient‐researcher with extensive involvement in researcher–patient collaboration across health care and health research contexts. She has participated in all study phases and had a major role in data collection and analysis.