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Paper short abstract:

Despite the widespread recognition of patient engagement, it remains a methodological ‘add-on’ to the traditional health system. Aligned with ideas of Greenhalgh et al (2019), we propose the concept of 'frameworking', involving collectively designing PE while acknowledging their inherent ambiguity.

Paper long abstract:

Since the 1980s, there has been a call for patient engagement (PE) in health decision-making, aiming for a more responsive health system. Despite the widespread recognition of PE’s ideological significance, a systemic shift towards a needs-oriented system has not yet materialized. PE remains a methodological ‘add-on’ to the traditional health system often appearing as a proliferation of standardized and staged initiatives.

The multifaceted and elusive nature of PE, stemming from varied interpretations, often leads to unsuccessful practices. According to Knaapen and Lehoux (2016), PE designers encounter a dilemma between two approaches: a 'top-down' design based on engagement theories, and a 'bottom-up' design co-created with local actors in their contexts. The former, although theoretically grounded, is criticized for its impracticality due to PE’s dynamic and context-dependent nature. Conversely, overly practical approaches tend to adopt an instrumental stance, integrating patient(representative)s and their insights into existing decision-making processes, frequently without considering how or by whom patients' experiential knowledge could be most effectively integrated.

Building on the insights of Knaapen and Lehoux (2016), we argue for integrating STS perspectives to navigate these tensions. Rather than rigidly adhering to theoretical frameworks, designers should engage in co-creation processes critically examining and adapting these frameworks to specific contexts and needs. Therefore, aligned with the ideas of Greenhalgh et al. (2019), we propose the concept of 'frameworking', involving collectively designing PE while acknowledging their inherent ambiguity. During the open panel, we aim to discuss the concept of frameworking and its potential in addressing current PE challenges.